We saw the oncologist again. He thinks that it would be best for Karen to do another 4 months of chemotherapy before starting on maintenance chemo. While this was on our minds, we hadn't mentioned it to the doctor. Perhaps this is normal when the initial round of chemotherapy is cut short? He warned us, however, that cancer is "very smart." It gets better at surviving the chemo after each round. And even though it doesn't seem to be shrinking the cancer, it can still slow it's growth, which will give Karen more time.
The particular regimen she will be on this time is called FOLFIRI (as opposed to the last regimen, FOLFOX). The difference being that they will be giving her irinotecan instead of oxaliplatin. This change is important because last time most of the harshest side effects - the neuropathy, intense cold sensitivity, and the extremely low blood counts - came about due to the oxaliplatin. The biggest side effect with irinotecan will be diarrhea, which isn't a comfort issue when you have an ostomy. We just have to watch Karen's hydration. A low white blood cell count is also expected. The oncologist will also be adding in bevacizumab this time. It was considered last time, but for one reason or another, was never thrown into the mix. It works by slowing the growth of new blood vessels, something that's important for tumor growth.
They will also be starting Karen off on very low dosages of everything, and slowly upping things as they see how her body responds to it all. Like last time, Karen will go home with a pump, which will administer chemo for another 46 hours. Overall, this should be an easier round of chemo than last time. Although that doesn't make Karen less nervous about it; she's really dreading starting chemo again.
The date kept changing, but we've finally settled on Friday the 21st. Mayo has a hospital that is open 7 days a week, so we can come in on Sunday to have the pump removed. Since chemotherapy is only given every other week, this puts thanksgiving, new years, and christmas on off weeks. Still, after last time, Karen isn't expecting to have much energy on her off weeks. She is also worried about having a low white blood cell count again, which she expects to limit her visiting during this time. I'm a bit more hopeful, but I've been wrong before.
Thursday, November 20, 2014
Thursday, October 23, 2014
Mystery Solved
Karen never quite recovered after this last surgery. She wanted to go see family and we kept planning visits but she was very lethargic and when it came down to it she just never had the energy. To make matters worse, Wednesday evening - the 15th - she got what looked like a bad spider bite on her back. The next day there were a lot more, following from her back towards her stomach along her abdomen. The looked more like flea bites now, with the first one she had gotten still looking worse than the others. Some friends visited from out of town and when she showed them, one of them was quite certain they were bed bug bites.
We compared pictures of flea bites to bed bug bites and couldn't tell the difference. I had been urging her to see a doctor since the bites had popped up and they had become so insanely itchy over the weekend that she agreed to call first thing Monday morning. Dermatology at Mayo was able to see us the same day. The doctor took one look at the bumps which had just started to blister and declared them to be shingles. Apparently it's very common for them to appear on just one side of the body and go from back to front about abdomen level. This is because the virus affects only the skin that the affected nerve supplies. Since we had been comparing pictures, it's worth mentioning the images that come up in google image search aren't nearly as bad as the outbreak Karen had.
The doctor told us that they don't typically start worrying about shingles until people get into their 60s. She said shingles are often triggered by a surgery, low immune system, stress, or an upper respiratory infection. Karen had all of these. The surgery and it's results had been a source of stress, and she got an upper respiratory infection afterwards - we assume from the tube they had put down her throat scratching it. Oh, and she's had a low immune system since the chemo. The doctor warned us that even after you get shingles, there's roughly a 10% chance of getting it again, and suggested Karen get a shingles vaccine once she's recovered from everything.
The drugs they give you to deal with the itching and nerve pain were all drugs Karen was already on due to her neuropathy. Perhaps if this weren't the case we'd have been in sooner. We were given a prescription for an antiviral, famciclovir, but were told it really works best those first 24 to 48 hours, and may not help much now. Antivirals help reduce the severity and duration of outbreaks, but famciclovir is also used in cases where someone has a weakened immune system. This is to keep the virus from spreading to other locations - it's not uncommon for shingles to spread to other nerves nearby. All things considered, this is not a bad outcome.
We compared pictures of flea bites to bed bug bites and couldn't tell the difference. I had been urging her to see a doctor since the bites had popped up and they had become so insanely itchy over the weekend that she agreed to call first thing Monday morning. Dermatology at Mayo was able to see us the same day. The doctor took one look at the bumps which had just started to blister and declared them to be shingles. Apparently it's very common for them to appear on just one side of the body and go from back to front about abdomen level. This is because the virus affects only the skin that the affected nerve supplies. Since we had been comparing pictures, it's worth mentioning the images that come up in google image search aren't nearly as bad as the outbreak Karen had.
The doctor told us that they don't typically start worrying about shingles until people get into their 60s. She said shingles are often triggered by a surgery, low immune system, stress, or an upper respiratory infection. Karen had all of these. The surgery and it's results had been a source of stress, and she got an upper respiratory infection afterwards - we assume from the tube they had put down her throat scratching it. Oh, and she's had a low immune system since the chemo. The doctor warned us that even after you get shingles, there's roughly a 10% chance of getting it again, and suggested Karen get a shingles vaccine once she's recovered from everything.
The drugs they give you to deal with the itching and nerve pain were all drugs Karen was already on due to her neuropathy. Perhaps if this weren't the case we'd have been in sooner. We were given a prescription for an antiviral, famciclovir, but were told it really works best those first 24 to 48 hours, and may not help much now. Antivirals help reduce the severity and duration of outbreaks, but famciclovir is also used in cases where someone has a weakened immune system. This is to keep the virus from spreading to other locations - it's not uncommon for shingles to spread to other nerves nearby. All things considered, this is not a bad outcome.
Tuesday, October 7, 2014
Cancer
It turns out what we had hoped was only scar tissue, wasn't even scar tissue at all. It was all cancer. This means the chemo was ineffective against the cancer. Which also means there's pretty much guaranteed to be more cancer other places inside of Karen; we just haven't noticed it yet. Which also means cancer is not likely something she will overcome. The doctor said to think of it as a chronic disease you live with, like high blood pressure or diabetes.
It appears to be a slow growing cancer, so that should give us more time than a faster growing cancer would, but no one can yet say how long. The doctor explained that the first one to three years will be the biggest indicator on how fast things will progress. If things are going to go bad quickly, then it should become apparent during this time. If we make it past those first three years or so without the cancer popping up anywhere important, then another five wouldn't be unreasonable.
During the surgery all the cancer from the site on the left was removed, but some from the site on the right was intentionally left behind due to the proximity of the tumor to the stoma. The doctors performing the surgery decided that it was more important to protect the integrity of the stoma than it was to remove the rest of the tumor. It's horrible to think that cancer was intentionally left in you because taking it out would cause more pain and suffering than removing it would. That's how sure they are that there's more cancer. The doctor said when it does become painful or cause problems with the stoma, he will do another surgery to remove that tumor and any others that have shown up on scans by then.
It was suggested that Karen start maintenance chemo in four to six weeks, once she's fully recovered from the surgery. But we'll know more after we've seen the oncologist. There's not much of a rush to see him because they want Karen to recover from the surgery first before starting with anything else anyway. The goal of maintenance chemo would be to have enough chemo in you to slow the growth of the cancer, but not enough to give you side effects that affect your quality of life.
Karen's not one to give up, and seems to be willing to give full strength chemo another go, even with as much as she hated it the first time. But the doctor we spoke to today didn't seem convinced it would be any more effective a second time, even if we changed things up. This will be something we talk to the oncologist about on our next visit. For now we're just going to stay as positive as we can.
It appears to be a slow growing cancer, so that should give us more time than a faster growing cancer would, but no one can yet say how long. The doctor explained that the first one to three years will be the biggest indicator on how fast things will progress. If things are going to go bad quickly, then it should become apparent during this time. If we make it past those first three years or so without the cancer popping up anywhere important, then another five wouldn't be unreasonable.
During the surgery all the cancer from the site on the left was removed, but some from the site on the right was intentionally left behind due to the proximity of the tumor to the stoma. The doctors performing the surgery decided that it was more important to protect the integrity of the stoma than it was to remove the rest of the tumor. It's horrible to think that cancer was intentionally left in you because taking it out would cause more pain and suffering than removing it would. That's how sure they are that there's more cancer. The doctor said when it does become painful or cause problems with the stoma, he will do another surgery to remove that tumor and any others that have shown up on scans by then.
It was suggested that Karen start maintenance chemo in four to six weeks, once she's fully recovered from the surgery. But we'll know more after we've seen the oncologist. There's not much of a rush to see him because they want Karen to recover from the surgery first before starting with anything else anyway. The goal of maintenance chemo would be to have enough chemo in you to slow the growth of the cancer, but not enough to give you side effects that affect your quality of life.
Karen's not one to give up, and seems to be willing to give full strength chemo another go, even with as much as she hated it the first time. But the doctor we spoke to today didn't seem convinced it would be any more effective a second time, even if we changed things up. This will be something we talk to the oncologist about on our next visit. For now we're just going to stay as positive as we can.
Thursday, October 2, 2014
Surgery Complete
Karen's surgery got pushed back till 1, which is exactly what we were expecting. The surgery lasted until about 3:30, which was much unexpected. The doctor says he ended up removing more tissue than he expected, it all sounds very ominous. He's sent it off to pathology for an official report, and we'll see him on Tuesday to go over the results. We're still planning on going home today, and will be on our way soon.
Wednesday, October 1, 2014
One Year Follow Up
It's been a year now since Karen had her big surgery, so it was time for another follow up visit with the doctor that performed the operation. It was actually a very short visit. He thought everything was going well and was happy to see Karen had put some weight on since he last saw her.
During the exam, he felt the scar tissue that was left behind from the laparoscopic surgery Karen had before we knew it was cancer - pre Mayo. The surgery that started it all was a cyst removal surgery at Banner Good Samaritan. The doctor doing the surgery didn't realize it was actually cancer and cut up the tumor and pulled it out through the small incisions made for the laparoscopic surgery. After the pathology report showed cancer, one concern was if any cancerous implants had been left at the location of the incisions where the tumor was pulled through the body piecemeal.
The big surgery Karen had at Mayo healed rather cleanly. You can still see a scar, but it's mostly superficial. And while the scars from the laparoscopic surgery are hard to see, the surgery had left large nodules of scar tissue under the skin. Karen had remarked that she'd rather have the scar on the outside then all that scar tissue inside. The lumps had begun to bother her more lately, to the point where it was hurting, and was now something we planned on asking the doctor about. He brought it up on his own.
He believes this scar tissue may be something more. It seems to have grown a small amount since our last visit with him, and he says when you're in a situation like Karen's, it's better to error on the side of caution. To make sure it's only scar tissue he wants to do a quick outpatient surgery. Make a couple incision, remove the nodules, and send them off to pathology. One side effect of this surgery will likely be the lessening of the pain she's been feeling in those areas.
Although it's not particularly urgent, he sees no reason to delay, and has scheduled the surgery for tomorrow at noon. Karen can even eat breakfast in the morning, provided it's something soft like eggs and not something harder to digest like oatmeal. This is all a bit fast, but the possibility of cancer is already weighing on Karen and this gives her less time to worry about it. I think we're both happy to have such a quick turn around.
I'll post again tomorrow after the surgery, but since it's midday and other surgeries may run over, Karen's surgery might get pushed back later into the day, but it should be a quick surgery nonetheless.
During the exam, he felt the scar tissue that was left behind from the laparoscopic surgery Karen had before we knew it was cancer - pre Mayo. The surgery that started it all was a cyst removal surgery at Banner Good Samaritan. The doctor doing the surgery didn't realize it was actually cancer and cut up the tumor and pulled it out through the small incisions made for the laparoscopic surgery. After the pathology report showed cancer, one concern was if any cancerous implants had been left at the location of the incisions where the tumor was pulled through the body piecemeal.
The big surgery Karen had at Mayo healed rather cleanly. You can still see a scar, but it's mostly superficial. And while the scars from the laparoscopic surgery are hard to see, the surgery had left large nodules of scar tissue under the skin. Karen had remarked that she'd rather have the scar on the outside then all that scar tissue inside. The lumps had begun to bother her more lately, to the point where it was hurting, and was now something we planned on asking the doctor about. He brought it up on his own.
He believes this scar tissue may be something more. It seems to have grown a small amount since our last visit with him, and he says when you're in a situation like Karen's, it's better to error on the side of caution. To make sure it's only scar tissue he wants to do a quick outpatient surgery. Make a couple incision, remove the nodules, and send them off to pathology. One side effect of this surgery will likely be the lessening of the pain she's been feeling in those areas.
Although it's not particularly urgent, he sees no reason to delay, and has scheduled the surgery for tomorrow at noon. Karen can even eat breakfast in the morning, provided it's something soft like eggs and not something harder to digest like oatmeal. This is all a bit fast, but the possibility of cancer is already weighing on Karen and this gives her less time to worry about it. I think we're both happy to have such a quick turn around.
I'll post again tomorrow after the surgery, but since it's midday and other surgeries may run over, Karen's surgery might get pushed back later into the day, but it should be a quick surgery nonetheless.
Friday, August 29, 2014
Another CT Scan
It's that time again. It's been roughly 3 months since Karen's last CT scan. Eventually we'll move to once every 6 months, but for now it's still every 3. When talking to other cancer survivors one thing we hear a lot of is how stressful it can be waiting for the results of the CT scan. Recently someone was saying that those 2 to 3 days between the scan and followup visit with the oncologist "were the worst." I guess it's lucky for us that it all happens in one day at Mayo Clinic. Especially since Karen has been feeling "off" and fatigued this past week or so, and had admitted to me she was worried that it could be cancer related.
We start our day by visiting the infusion ward. This is where Karen received her chemotherapy - they access patients' ports every day, and are the best at it. I found a short video on YouTube of someone having their port accessed. There's a lot involved before you get to this point - masking, gloving up, and cleaning the area - but this is the short of it. After Karen has her port accessed, blood is drawn for labs. Then we're off to the radiology department, which is two floors down and just a short walk away. They give her flavored barium sulfate to drink; this time the flavor was "orange cream." (She didn't seem impressed.) This makes your intestines show up much more clearly in the CT scan. She drinks this slowly over a 60 minute period and when time's up they put contrast into her port, and then do the CT scan.
It's about 10:30am at this point and we're off to a physical therapy appointment scheduled for 11. PT lasts roughly an hour, so it's a little past noon when Karen's done. We grab some food before heading over to the oncology department. There was enough time between everything that we didn't feel rushed, but there wasn't enough time to think or worry about the results. We can look at the results of the blood lab work on the website or through their mobile app, which we've done before while waiting, but we just took our time and enjoyed lunch. The appointment with the oncologist was at 2pm. We got there 10 minutes early and were ushered off into a waiting room.
The CT results were stable. This is what we want to hear. There are "nodules" that can be seen in the CT scan, and while some of them most certainly scar tissue, we are checking to make sure none of them are growing and that nothing new is growing. If we see any growth, then that's most likely cancer. The results of the blood work still put Karen in the "low" range in many areas - white blood cell count, platelets, hemoglobin, etc - but we are finally seeing improvements across the board. So that's great news as well. Karen expressed her concern over her sudden increase in fatigue. The doctor seems to suspect it's just a bug she's fighting, and thinks it will likely pass on it's own, but said to let him know if it persists or gets worse. Karen asked if a bone density scan would be a good idea, and the doctor agreed. If nothing else it would be good to have a reference point for checking bone loss in the future. He filled out some disability maintenance paperwork we brought, and we were done.
For the first time in a long time there have been no changes to Karen's medication. The new drug he gave her for the pain in her hands on our last visit, amitriptyline, seems to be working. The neuropathy is still there, but the pins and needles pain is gone, and with it, the last of her hot and cold sensitivity. With the exception of this latest bout of fatigue, everything seems to be moving in the right direction.
We start our day by visiting the infusion ward. This is where Karen received her chemotherapy - they access patients' ports every day, and are the best at it. I found a short video on YouTube of someone having their port accessed. There's a lot involved before you get to this point - masking, gloving up, and cleaning the area - but this is the short of it. After Karen has her port accessed, blood is drawn for labs. Then we're off to the radiology department, which is two floors down and just a short walk away. They give her flavored barium sulfate to drink; this time the flavor was "orange cream." (She didn't seem impressed.) This makes your intestines show up much more clearly in the CT scan. She drinks this slowly over a 60 minute period and when time's up they put contrast into her port, and then do the CT scan.
It's about 10:30am at this point and we're off to a physical therapy appointment scheduled for 11. PT lasts roughly an hour, so it's a little past noon when Karen's done. We grab some food before heading over to the oncology department. There was enough time between everything that we didn't feel rushed, but there wasn't enough time to think or worry about the results. We can look at the results of the blood lab work on the website or through their mobile app, which we've done before while waiting, but we just took our time and enjoyed lunch. The appointment with the oncologist was at 2pm. We got there 10 minutes early and were ushered off into a waiting room.
The CT results were stable. This is what we want to hear. There are "nodules" that can be seen in the CT scan, and while some of them most certainly scar tissue, we are checking to make sure none of them are growing and that nothing new is growing. If we see any growth, then that's most likely cancer. The results of the blood work still put Karen in the "low" range in many areas - white blood cell count, platelets, hemoglobin, etc - but we are finally seeing improvements across the board. So that's great news as well. Karen expressed her concern over her sudden increase in fatigue. The doctor seems to suspect it's just a bug she's fighting, and thinks it will likely pass on it's own, but said to let him know if it persists or gets worse. Karen asked if a bone density scan would be a good idea, and the doctor agreed. If nothing else it would be good to have a reference point for checking bone loss in the future. He filled out some disability maintenance paperwork we brought, and we were done.
For the first time in a long time there have been no changes to Karen's medication. The new drug he gave her for the pain in her hands on our last visit, amitriptyline, seems to be working. The neuropathy is still there, but the pins and needles pain is gone, and with it, the last of her hot and cold sensitivity. With the exception of this latest bout of fatigue, everything seems to be moving in the right direction.
Thursday, July 17, 2014
Thyroid Nodule Biopsy
On the 11th Karen had both her ultrasound and a follow up with the oncologist. While I like talking with the techs to try and understand what it is they are seeing, and to get an impression of what they think, I'd appreciate it if they were more careful with what they say. This one was very vocal about the size of the nodule. It was roughly 2 inches across and she seemed surprised about the size. She asked scary sounding things like, have you ever had a PET scan to check for cancer? Do you ever have trouble swallowing? Afterwards, when we talked to the oncologist, he was as calm about it then as when it was first brought up. He said they're actually quite common, up to half the population has thyroid nodules. He also reiterated that these are almost always benign, and that her thyroid hormone levels were normal. However, after seeing the results of the ultrasound he wanted to make sure it wasn't something more. He suggested a thyroid biopsy, and a follow up visit with an endocrinologist - a doctor who deals with thyroids among other things - to review the results and decide if anything needed to be done. He also started Karen on a new medication, amitriptyline, to help with the burning pins and needles pain caused by her neuropathy, and signed off on her getting physical therapy to help deal with the numbness in day to day activities, such as walking.
Karen and I came away with very different impressions of the thyroid situation. To me it just seemed the doctor was being thorough. Karen, however, got the impression that he wanted the nodule out, and became worried about another surgery. She said it's not uncommon for pills to get stuck in her throat. I told her that even happens to me. She also mentioned that she chokes on food sometimes as well. I can only recall that happening a couple times in the past couple years, and it didn't seem frequent enough to be significant, but maybe it happened more than I realized. Afterwards, it seemed every pill she took got stuck in her throat. Could it be I just wasn't paying close enough attention before? Could it be some sort of self‑fulfilling prophecy where she is expecting to have trouble swallowing so she does something different and that causes trouble swallowing? In the past she's said pills can get stuck in her throat when her allergies were bad; maybe that's all it is? Perhaps a combination of things? It's hard to say.
She asked that I not tell anyone or update the blog until she knew one way or the other if it were cancer. She explained that she didn't want to worry anyone unnecessarily. The schedule we received even said "consult thyroid tumor" on the endocrinologist visit. Everyone had just been calling it a nodule. I'm not sure at what point a nodule becomes a tumor, but that small word change adds a sense of seriousness to everything going on. Karen had the biopsy on Wednesday and the follow up with the endocrinologist today. Talk about a long 24 hours.
The biopsy is done while you're awake and consists of fine needles being guided with ultrasound into the thyroid nodule to take samples. If you have the stomach for it, you can see how it's done here. The video says they use the needle 2 to 3 times, but Mayo Clinic's policy is to do it 5 times with 5 different needles. The video also says it takes 2 to 4 days for the results, but we got them in just 24 hours, when we saw the Endocrinologist. He said the pathology report showed the nodule to be benign, and once again, that this is actually quite common. He said he certainly wouldn't recommend surgery to remove the nodule unless it was interfering with day to day life, and even then he'd be hesitant at this point in her recovery. He didn't see it pressing on the windpipe but wondered if it was causing any problems swallowing. That would be the only reason to remove the nodule, and warned that you have the risk of hypothyroidism whenever you operate on the thyroid. He suggested talking with a thyroid surgeon to give us a better idea of what was involved and what to expect if the nodule has to be removed. Karen seems quite strongly against another operation, but is open to other opinions and points of view, and is willing to talk to the surgeon about the matter. The doctor suggested having regular ultrasounds to keep an eye on the thyroid since it is quite possibly bothering her. I didn't think about it at the time, but perhaps the CT scans she's already getting regularly would be sufficient.
Karen and I came away with very different impressions of the thyroid situation. To me it just seemed the doctor was being thorough. Karen, however, got the impression that he wanted the nodule out, and became worried about another surgery. She said it's not uncommon for pills to get stuck in her throat. I told her that even happens to me. She also mentioned that she chokes on food sometimes as well. I can only recall that happening a couple times in the past couple years, and it didn't seem frequent enough to be significant, but maybe it happened more than I realized. Afterwards, it seemed every pill she took got stuck in her throat. Could it be I just wasn't paying close enough attention before? Could it be some sort of self‑fulfilling prophecy where she is expecting to have trouble swallowing so she does something different and that causes trouble swallowing? In the past she's said pills can get stuck in her throat when her allergies were bad; maybe that's all it is? Perhaps a combination of things? It's hard to say.
She asked that I not tell anyone or update the blog until she knew one way or the other if it were cancer. She explained that she didn't want to worry anyone unnecessarily. The schedule we received even said "consult thyroid tumor" on the endocrinologist visit. Everyone had just been calling it a nodule. I'm not sure at what point a nodule becomes a tumor, but that small word change adds a sense of seriousness to everything going on. Karen had the biopsy on Wednesday and the follow up with the endocrinologist today. Talk about a long 24 hours.
The biopsy is done while you're awake and consists of fine needles being guided with ultrasound into the thyroid nodule to take samples. If you have the stomach for it, you can see how it's done here. The video says they use the needle 2 to 3 times, but Mayo Clinic's policy is to do it 5 times with 5 different needles. The video also says it takes 2 to 4 days for the results, but we got them in just 24 hours, when we saw the Endocrinologist. He said the pathology report showed the nodule to be benign, and once again, that this is actually quite common. He said he certainly wouldn't recommend surgery to remove the nodule unless it was interfering with day to day life, and even then he'd be hesitant at this point in her recovery. He didn't see it pressing on the windpipe but wondered if it was causing any problems swallowing. That would be the only reason to remove the nodule, and warned that you have the risk of hypothyroidism whenever you operate on the thyroid. He suggested talking with a thyroid surgeon to give us a better idea of what was involved and what to expect if the nodule has to be removed. Karen seems quite strongly against another operation, but is open to other opinions and points of view, and is willing to talk to the surgeon about the matter. The doctor suggested having regular ultrasounds to keep an eye on the thyroid since it is quite possibly bothering her. I didn't think about it at the time, but perhaps the CT scans she's already getting regularly would be sufficient.
Tuesday, June 3, 2014
Looking Good, But...
Yesterday Karen had a CAT scan along with the usual blood lab work. The big news is the CAT scan looks good. It showed no new growth, except something on the left side of her thyroid. The doctor says nodules in the thyroid are almost always benign, however, it's still something that we need to look into. He wants to do an ultrasound on her neck in six weeks to take another look at it. I'm not sure if it's for a more detailed look, to watch for blood flow using doppler, or if it's just to watch for growth since it is another 3 months till the next CAT scan. He didn't go into much detail, but said not to worry about it, so I didn't push for too many details. It does seem to be bothering Karen, but she's pretty resilient and I'm sure she'll stop worrying about it once she's given it some more thought.
Overall, her blood work looks better than last time, but despite that, the doctor wasn't too happy with the results. He was quite happy with her hemoglobin count. It's still lower than where it should be, but it has risen quite sharply. Her platelet count has dropped a little, but he's still happy with where we are in regards to that. Where he's not so happy is with her red and white blood cell counts. They have both gone up, but they're not improving as quickly as they should be. Her white blood cell count is still lower than it was in March and April when she was on chemotherapy. Her protein levels are within the normal healthy range, so it's not due to low protein. At this point it's just another thing to keep an eye on.
Her neuropathy has finally stopped spreading. The weird electric-like shockwaves she had been feeling up her arms have gone away. What's new is a strange itching sensation in her fingers and toes that she doesn't seem to be able to scratch. She's also been dropping things. This change was gradual, and we didn't notice the increased frequency of drops until lately. Looking back, it seems it should have been apparent to us earlier, but everyone drops things and we weren't really watching for it. The doctors says this is just a side effect of the neuropathy. Everything else is about the same. Mostly just tingling with a little on and off numbness and mild "pins and needles" pain. I've mentioned temperature sensitivity before, but it's seems to be sticking around. Her hands hurt when touching something hot or cold. It's not as bad as the cold sensitivity she had when on oxaliplatin, but it's still notable.
The gabapentin she's taking for the neuropathy pains in her limbs doesn't seem to be working... until she misses a dose. Then her hands and feet really hurt. Even when she's on the gabapentin she has pain, so either the improvement was so gradual that she didn't notice it, or what seems more likely to me, is the pain from her neuropathy was getting worse around the same time she started the medication. The doctor upped the dosage by another 50%. Like last time, we have to ease into it. Hopefully this will get help with more of her neuropathic pain.
The last few chemo sessions she was really having a hard time walking long distances, so we'd often get a wheelchair when going into Mayo just because the parking lot was so big and it was such a walk to where we were going. She started using a cane off and on around that time and has grown more comfortable with it. I'm don't believe I've ever mentioned her cane use on the blog. Again, it was another gradual change; she would use it now and then, but gradually became a common thing. I should mention that she is still getting better at balancing and walking on numb feet, but she feels safer with the cane. That said, she is feeling comfortable going further distances without her cane. The doctor says you learn to compensate in other ways, vision being a big one, and warned her to be careful standing or walking in the dark.
Some people think that once the chemo is done, everything quickly returns to normal. If you asked us 6 months ago we would have had no reason to think otherwise, but now it seems obvious that the path to recovery is a long one. The doctors say it's not uncommon for the neuropathy to last more than a year after treatment ends. A recent study found the average recovery time to be 9 months, with some symptoms becoming "long term" problems. They haven't found medication that will reverse the neuropathy. Hopefully they can control the symptoms and the body works it out on it's own.
Overall, her blood work looks better than last time, but despite that, the doctor wasn't too happy with the results. He was quite happy with her hemoglobin count. It's still lower than where it should be, but it has risen quite sharply. Her platelet count has dropped a little, but he's still happy with where we are in regards to that. Where he's not so happy is with her red and white blood cell counts. They have both gone up, but they're not improving as quickly as they should be. Her white blood cell count is still lower than it was in March and April when she was on chemotherapy. Her protein levels are within the normal healthy range, so it's not due to low protein. At this point it's just another thing to keep an eye on.
Her neuropathy has finally stopped spreading. The weird electric-like shockwaves she had been feeling up her arms have gone away. What's new is a strange itching sensation in her fingers and toes that she doesn't seem to be able to scratch. She's also been dropping things. This change was gradual, and we didn't notice the increased frequency of drops until lately. Looking back, it seems it should have been apparent to us earlier, but everyone drops things and we weren't really watching for it. The doctors says this is just a side effect of the neuropathy. Everything else is about the same. Mostly just tingling with a little on and off numbness and mild "pins and needles" pain. I've mentioned temperature sensitivity before, but it's seems to be sticking around. Her hands hurt when touching something hot or cold. It's not as bad as the cold sensitivity she had when on oxaliplatin, but it's still notable.
The gabapentin she's taking for the neuropathy pains in her limbs doesn't seem to be working... until she misses a dose. Then her hands and feet really hurt. Even when she's on the gabapentin she has pain, so either the improvement was so gradual that she didn't notice it, or what seems more likely to me, is the pain from her neuropathy was getting worse around the same time she started the medication. The doctor upped the dosage by another 50%. Like last time, we have to ease into it. Hopefully this will get help with more of her neuropathic pain.
The last few chemo sessions she was really having a hard time walking long distances, so we'd often get a wheelchair when going into Mayo just because the parking lot was so big and it was such a walk to where we were going. She started using a cane off and on around that time and has grown more comfortable with it. I'm don't believe I've ever mentioned her cane use on the blog. Again, it was another gradual change; she would use it now and then, but gradually became a common thing. I should mention that she is still getting better at balancing and walking on numb feet, but she feels safer with the cane. That said, she is feeling comfortable going further distances without her cane. The doctor says you learn to compensate in other ways, vision being a big one, and warned her to be careful standing or walking in the dark.
Some people think that once the chemo is done, everything quickly returns to normal. If you asked us 6 months ago we would have had no reason to think otherwise, but now it seems obvious that the path to recovery is a long one. The doctors say it's not uncommon for the neuropathy to last more than a year after treatment ends. A recent study found the average recovery time to be 9 months, with some symptoms becoming "long term" problems. They haven't found medication that will reverse the neuropathy. Hopefully they can control the symptoms and the body works it out on it's own.
Wednesday, May 14, 2014
Bladder and Miscellaneous Updates
Karen had an appointment with the urologist the day after Thanksgiving. They did a urodynamic test, which is where you urinate into a special toilet and it measures things like flow rate and volume. Then they follow up with a bladder scan to check if there's any residual urine in your bladder. During the test her flow was weak, and there was a very small amount of retention. Retention had been a consistent issue during her initial stay at Mayo. The general consensus was that as the body healed and the swelling from the surgery went down, things would continue to improve. But bladder issues have been slowly returning.
So today the urologists did a cystoscopy to look for other problems. However, everything seems to be good. It's possible there's still nerve damage from when they removed cancer in the area. Neuropathy can also affect the bladder, so it could be a combination of the two. It's likely this is still something that will work itself out. Either way, they've given Karen some medication that works on the smooth muscle tissue of the bladder, which should help alleviate the problem.
Karen had some more blood work before the procedure, which, unfortunately, showed a slight all around decline from her previous results. Nothing significant or worrisome enough to hold her back from today's procedure or warrant a blood transfer, but we're interested in what the oncologist would say about it. The neuropathy seems to still be getting worse, so maybe it's connected to that. That said, she's getting better at walking on numb feet. Which might sound like a positive development, but being on her feet longer makes them hurt that much more. The gabepentin they gave her to control the neuropathy induced pain can make you sleepy and dizzy; so she's taken about two weeks to work up to the full dosage. It's not really working yet, but if it's still not working in a week or two, there's a higher dosage we can try before trying something different.
So today the urologists did a cystoscopy to look for other problems. However, everything seems to be good. It's possible there's still nerve damage from when they removed cancer in the area. Neuropathy can also affect the bladder, so it could be a combination of the two. It's likely this is still something that will work itself out. Either way, they've given Karen some medication that works on the smooth muscle tissue of the bladder, which should help alleviate the problem.
Karen had some more blood work before the procedure, which, unfortunately, showed a slight all around decline from her previous results. Nothing significant or worrisome enough to hold her back from today's procedure or warrant a blood transfer, but we're interested in what the oncologist would say about it. The neuropathy seems to still be getting worse, so maybe it's connected to that. That said, she's getting better at walking on numb feet. Which might sound like a positive development, but being on her feet longer makes them hurt that much more. The gabepentin they gave her to control the neuropathy induced pain can make you sleepy and dizzy; so she's taken about two weeks to work up to the full dosage. It's not really working yet, but if it's still not working in a week or two, there's a higher dosage we can try before trying something different.
Wednesday, May 7, 2014
Finished with Chemo
So last week Karen had more blood work done to see if she was ready for more chemo. The blood work done her last day at the hospital showed improvement over previous days, but the numbers were still lower than the day she had come in. The latest numbers continued to show improvement, but once again, they are still lower than that first day at the hospital.
The oncologist said that it's good we're still seeing improvement, but at this point it had been 4 weeks since her last chemotherapy session, so there should have been a much larger improvement than we were seeing. He said her body is still trying to tell us it's had enough, and that stopping chemotherapy now, after 10 sessions, is probably best. Karen, being in a hurry to finish up chemotherapy and put it behind her, came ready to argue for finishing her last two treatments now opposed to a month from now, as had been hinted at in the hospital. But this was a total surprise to us. Neither of us could say anything.
During our previous chemotherapy session, a woman at the station down from us had just completed her last chemotherapy session. The staff walked over in a long line and gathered around. As they were approaching I kept waiting for them to break into a clapping rhythm and start singing happy birthday, but instead someone just said congratulations and they all starting clapping. What a good feeling that must be.
After a bit of silence he realized he caught us by surprise. We were simultaneously happy to be done with the tortures of chemotherapy, and yet concerned about what it meant in the long run. Before either of us could put this into words he jumped back in. If we felt strongly about continuing he could reduce the chemo down from half the dosage to a quarter, but thought it wouldn't be much of benefit. Karen got out a weak "I'm fine stopping now," followed by a nervous giggle. More silence.
He responded to what the silence told him, rather than words Karen spoke. He reiterated that she's done 10 out of the 12 chemotherapy sessions, 8 with the oxaliplatin. And stated most of the benefit comes from the initial treatments. He said there are even trials happening right now testing the effectiveness of giving just 6 rounds of chemotherapy for colon cancer patients. He said that for it to be brought to trials, enough people must feel there's at least some reason to believe that even just 6 treatments are enough. Karen spoke more confidently this time, "Ok. Well I'm fine being done."
When we asked about the specific cause of Karen's low blood cell counts he said that in the CAT scans he can see her spleen has enlarged quite a bit, which is a common side effect of oxaliplatin. He says that's where all the platelets are going and that along with the bone marrow suppression of the oxaliplatin is likely the key cause of the low numbers we're seeing. All the more reason to give the body time to recover.
As predicted, Karen's neuropathy is still getting worse. Her fingers are still tingly, and the tingling has spread throughout the rest of her hands. As it is, they've been hurting when she uses them for more than 2 to 5 minutes, making things like puzzles and typing painful after only a short time. The neuropathy has started to spread out from her hands. She describes it as feeling like an electric shock traveling up her arm. And the neuropathy covers enough of her feet that it's become difficult to walk for more than a few minutes without worrying about stumbling. Rather than hurt, her feet seem to simply go numb when using them. Her cold sensitivity had all but vanished before returning in a new form. This time it's a sensitivity to temperatures in general, both hot and cold hurt badly, but just on her hands and feet - pretty much anywhere the neuropathy is, so we assume this is caused directly by the neuropathy itself, rather than the oxaliplatin. The doctor gave Karen a prescription for gabapentin to help with the pain from the neuropathy.
All in all, we left feeling pretty happy with where things were. There's still that nagging feeling in the back of our mind from time to time, but we've managed to stay pretty positive about the whole thing. Rather than saying she had to quit the chemotherapy early, we've been saying she finished it early. I'm fairly confident this will turn out to have been the right decision.
The oncologist said that it's good we're still seeing improvement, but at this point it had been 4 weeks since her last chemotherapy session, so there should have been a much larger improvement than we were seeing. He said her body is still trying to tell us it's had enough, and that stopping chemotherapy now, after 10 sessions, is probably best. Karen, being in a hurry to finish up chemotherapy and put it behind her, came ready to argue for finishing her last two treatments now opposed to a month from now, as had been hinted at in the hospital. But this was a total surprise to us. Neither of us could say anything.
During our previous chemotherapy session, a woman at the station down from us had just completed her last chemotherapy session. The staff walked over in a long line and gathered around. As they were approaching I kept waiting for them to break into a clapping rhythm and start singing happy birthday, but instead someone just said congratulations and they all starting clapping. What a good feeling that must be.
After a bit of silence he realized he caught us by surprise. We were simultaneously happy to be done with the tortures of chemotherapy, and yet concerned about what it meant in the long run. Before either of us could put this into words he jumped back in. If we felt strongly about continuing he could reduce the chemo down from half the dosage to a quarter, but thought it wouldn't be much of benefit. Karen got out a weak "I'm fine stopping now," followed by a nervous giggle. More silence.
He responded to what the silence told him, rather than words Karen spoke. He reiterated that she's done 10 out of the 12 chemotherapy sessions, 8 with the oxaliplatin. And stated most of the benefit comes from the initial treatments. He said there are even trials happening right now testing the effectiveness of giving just 6 rounds of chemotherapy for colon cancer patients. He said that for it to be brought to trials, enough people must feel there's at least some reason to believe that even just 6 treatments are enough. Karen spoke more confidently this time, "Ok. Well I'm fine being done."
When we asked about the specific cause of Karen's low blood cell counts he said that in the CAT scans he can see her spleen has enlarged quite a bit, which is a common side effect of oxaliplatin. He says that's where all the platelets are going and that along with the bone marrow suppression of the oxaliplatin is likely the key cause of the low numbers we're seeing. All the more reason to give the body time to recover.
As predicted, Karen's neuropathy is still getting worse. Her fingers are still tingly, and the tingling has spread throughout the rest of her hands. As it is, they've been hurting when she uses them for more than 2 to 5 minutes, making things like puzzles and typing painful after only a short time. The neuropathy has started to spread out from her hands. She describes it as feeling like an electric shock traveling up her arm. And the neuropathy covers enough of her feet that it's become difficult to walk for more than a few minutes without worrying about stumbling. Rather than hurt, her feet seem to simply go numb when using them. Her cold sensitivity had all but vanished before returning in a new form. This time it's a sensitivity to temperatures in general, both hot and cold hurt badly, but just on her hands and feet - pretty much anywhere the neuropathy is, so we assume this is caused directly by the neuropathy itself, rather than the oxaliplatin. The doctor gave Karen a prescription for gabapentin to help with the pain from the neuropathy.
All in all, we left feeling pretty happy with where things were. There's still that nagging feeling in the back of our mind from time to time, but we've managed to stay pretty positive about the whole thing. Rather than saying she had to quit the chemotherapy early, we've been saying she finished it early. I'm fairly confident this will turn out to have been the right decision.
Thursday, April 17, 2014
Back Home
So yesterday morning the blood work came back showing improvement. Karen is no longer in danger of needing blood. In fact, all of the things they were watching in her lab work had shown improvement. She's feeling much better; she even managed to eat three breakfasts. And then a snack after lunch, a gluten free chocolate chip chocolate muffin, which she says was very good.
Her white blood cell count is still really low, but with things on the up swing and nothing much they can do for you when you have gastroenteritis, they agreed to release her. Her output has reduced greatly, but was still a concern. Part of her release includes getting the home hydration we've become comfortable with after chemotherapy. They won't send people home with an IV in their arm, but Karen's PowerPort lets us go home with IV access - they just send us the supplies and we call a home health nurse to de‑access her port when we're done.
Gastroenteritis, aka the stomach flu, can be fatal in people with weak immune systems, but it's actually very easily managed in a hospital. Some people seemed very concerned when finding out Karen was back in the hospital, but there's no better place for her to ride out a stomach bug. She was in very good hands with Mayo and we weren't worried once we'd arrived. We knew it was just a matter of time. Our biggest concerns weren't health related, but things like getting taxes done, and keeping the animals at home safe and fed.
Her white blood cell count is still really low, but with things on the up swing and nothing much they can do for you when you have gastroenteritis, they agreed to release her. Her output has reduced greatly, but was still a concern. Part of her release includes getting the home hydration we've become comfortable with after chemotherapy. They won't send people home with an IV in their arm, but Karen's PowerPort lets us go home with IV access - they just send us the supplies and we call a home health nurse to de‑access her port when we're done.
Gastroenteritis, aka the stomach flu, can be fatal in people with weak immune systems, but it's actually very easily managed in a hospital. Some people seemed very concerned when finding out Karen was back in the hospital, but there's no better place for her to ride out a stomach bug. She was in very good hands with Mayo and we weren't worried once we'd arrived. We knew it was just a matter of time. Our biggest concerns weren't health related, but things like getting taxes done, and keeping the animals at home safe and fed.
Wednesday, April 16, 2014
Hospital Again
So this weekend we went down to Tucson to visit family and everything went really well. However come Monday afternoon, Karen was feeling quite nauseous and stoma output was very liquidy and very fast. This is equivalent to diarrhea for people with a stoma. She was losing a lot of fluid, and on top of that, had taken different anti‑nausea medications to try to control the nausea. Usually it only takes one to calm the nausea and you can alternate them, but nothing was working and she ended up vomiting around 2 pm. And despite all the chemotherapy she's been getting, she hasn't actually puked once. We called Mayo and were told to go to ER. They take any kind of illness very serious when you're on chemotherapy.
The first doctor we talked to said it was probably a stomach bug. They continued to give Karen anti‑nausea medications but she just kept vomiting. By the time they had admitted her, she had puked 3 more times. Although technically, she hadn't been admitted, just given a room and put on "watch", which allows them to keep her for 23 hours without admitting her. They said most stomach bugs pass in 12 hours.
After being admitted her vomiting stopped, but she continued to lose fluid quickly. There was some concern this could be food poisoning. "Salsa - it's always the salsa," said one doctor. Over the next 24 hours she lost over 6 liters of fluid. They were waiting for her output to slow down before letting her go, but it never slowed down. Since we get home hydration they entertained the idea of releasing Karen with a home hydration order. They said if she were convincing, they'd let her go, but she said she didn't feel like being convincing, and would wait till everyone was happy to release her. She was officially admitted to the hospital.
By the next day Karen was looking a lot better, the nausea had passed, and all the cultures and tests had come back negative for food poisoning. Seeing as how food poisoning had been ruled out, and any other possible toxins would be flushed out by now, they started her on Imodium to slow down her output. However, her electrolytes have dropped from all the diarrhea and release was now off the table - even though Karen herself was feeling better and now felt good enough to leave. Her blood cell counts have also been falling. They're already low from the chemotherapy, so any drop makes people concerned. If the numbers continue to drop tomorrow, there's a good chance she'll be getting a blood transfusion.
We're still not sure when she'll be able to leave. Some doctors say tomorrow, but the oncology department seems to want her to stay through the weekend. Either way, she missed chemotherapy this week and there will be some additional time off from chemotherapy. Karen was actually quite excited about finishing up her last two sessions of chemo, but now it looks like there will be at least a small delay in that.
The first doctor we talked to said it was probably a stomach bug. They continued to give Karen anti‑nausea medications but she just kept vomiting. By the time they had admitted her, she had puked 3 more times. Although technically, she hadn't been admitted, just given a room and put on "watch", which allows them to keep her for 23 hours without admitting her. They said most stomach bugs pass in 12 hours.
After being admitted her vomiting stopped, but she continued to lose fluid quickly. There was some concern this could be food poisoning. "Salsa - it's always the salsa," said one doctor. Over the next 24 hours she lost over 6 liters of fluid. They were waiting for her output to slow down before letting her go, but it never slowed down. Since we get home hydration they entertained the idea of releasing Karen with a home hydration order. They said if she were convincing, they'd let her go, but she said she didn't feel like being convincing, and would wait till everyone was happy to release her. She was officially admitted to the hospital.
By the next day Karen was looking a lot better, the nausea had passed, and all the cultures and tests had come back negative for food poisoning. Seeing as how food poisoning had been ruled out, and any other possible toxins would be flushed out by now, they started her on Imodium to slow down her output. However, her electrolytes have dropped from all the diarrhea and release was now off the table - even though Karen herself was feeling better and now felt good enough to leave. Her blood cell counts have also been falling. They're already low from the chemotherapy, so any drop makes people concerned. If the numbers continue to drop tomorrow, there's a good chance she'll be getting a blood transfusion.
We're still not sure when she'll be able to leave. Some doctors say tomorrow, but the oncology department seems to want her to stay through the weekend. Either way, she missed chemotherapy this week and there will be some additional time off from chemotherapy. Karen was actually quite excited about finishing up her last two sessions of chemo, but now it looks like there will be at least a small delay in that.
Tuesday, March 18, 2014
Back To Mayo
The previous two chemotherapy treatments had continued to be rougher and rougher on Karen, but nothing significant happened. Karen did get a small staff infection in an ingrown hair. Arizona Oncology wrote a prescription for some antibiotics, but just to be safe we went down to Mayo clinic to see a doctor there about it. They took a culture and found out it was resistant to quite a few antibiotics, including the one Karen was currently on. It cleared up quickly after changing antibiotics. While, technically, it wasn't MRSA, it was resistant to a sufficient number of antibiotics to flag Karen for MRSA.
Karen doesn't have the energy to go out anywhere most of the time as of late, but even when she does have the energy, the cold sensitivities or other chemo side effects tend to make her want to stay in. If she can get past all that, she is really good about wearing a mask, and we're both really good about washing our hands when we come back from an outing. So we started to wonder where she could have gotten a "hospital bug" from. At her next chemotherapy appointment, Karen pointed out one of the nurses at Arizona Oncology that didn't consistently use gloves. They don't use masks for accessing ports like they do at Mayo, but they deal with so many ports and we hadn't see anyone drop dead from the lack of a mask, so we had gotten use to the idea. But not using gloves was a bit much. They already have everyone crammed into one square room, and since the pumps need to be plugged into the wall, everyone is elbow to elbow against the wall.
Karen also needed another blood transfusion due to low hemoglobin. Arizona Oncology wanted to do a bone marrow biopsy for further investigation. The nurse who brought the news to us followed up with, "Don't worry. It's not as bad as people say it is." Which is the worst thing you can say. First, she's probably never had it done herself, so how would she know? Why should we take her word over others? And second, we had no preconceptions about the procedure, but now we had the most horrible images in our mind. The idea of a bone marrow biopsy was just flat out scarey after that. Karen now had something new to worry about, and worrying about a procedure can be just as tough on you as the pain and discomfort of the procedure itself.
However, with the MRSA scare fresh in our minds, we decided to contact Mayo and have it done there instead. Without encouragement from us, the oncologist we're working with at Mayo said it was unnecessary at this time. So with everything that had been going on, and with our new concerns about Arizona Oncology, we decided to do the remaining 4 treatments at Mayo, despite the hour long drive. The drive is about twice as far as the Mayo location we normally visit, since they don't do Chemotherapy at that location.
We set up an appointment for last Tuesday to get some blood work, meet with the oncologist there, and have chemotherapy. They found, along with the usual low blood cell counts, that Karen's platelets had now dropped as well. In addition to that, she was still having nausea and taking anti-nausea medication, and it had always gone away by the start of her next treatment. The oncologist said her body was telling us it needs a week off.
Karen was glad to have the break, but was unsure if it was a good thing or not. She said she felt like she was suspended from school for doing something wrong, but now gets to stay home and watch TV. Unfortunately, I don't think the week went as well had she had hoped. Mostly because the chemo has been building up in her system, and hitting her so hard; it took almost the whole week to recover to where she would normally be before chemo. She was in a lot more pain than usual, and ended up sleeping most of the time. Still, I think the break was good for her.
We went in back into Mayo today for another attempt at her ninth treatment. Her platelet count was the biggest concern last time, and it had recovered nicely. Her hemoglobin had still dropped a little, but she was healthy enough for chemo.
The oncologist said it's not uncommon for people to only receive 8 treatments of the chemotherapy medication Oxaliplatin when they have stage IV colon cancer. This is to avoid any permanent nerve damage that can occur, especially with future treatments, as such advanced cancer has a way of popping back up again. Since Karen had received HIPEC during surgery, there's a better chance there won't be recurrences, and 12 treatments with Oxaliplatin fit in with that aggressive line of treatment. However, seeing how much it had been effecting Karen, the doctor decided to drop the Oxaliplatin for the remainder of her chemotherapy, leaving her at 8 treatments.
Along with the neuropathy, this drug is also responsible for her cold sensitivity. Karen's issues with cold sensitivity should start to drop off right away, but he said the neuropathy will continue to get worse for a "quite a while." He wouldn't say exactly how long until it starts to get better, but it's going to be one of those things that varies from person to person anyway. At least from now on the remainder of her treatments should be easier on her body, which will be nice after the consistently stronger side effects. He thinks we may even be able to back off some of the nausea medication for the remainder of her treatments. We'll see about that.
Chemotherapy at Mayo is a quite a bit different. And it's not just with the use of masks and gloves. Patients are in a room I can only describe as U shaped. You not only have a good 10 feet between patients, but there are separating walls between units, and yes, your own TV. Much like Arizona Oncology, they have several different flavors of juice, protein drinks, coffee, etc. The only possible down side - if you can even really call it that - is they have no complimentary junk food for the patients here. There are bowls of individually wrapped crackers scattered around, and they have unsweetened apple sauce, fruit bars, granola bars, etc. But the tasty junk food is missing; no more Cheez-Its, M&Ms, and candy bars during chemo. Of course at Arizona Oncology they had a big sign on the snacks saying "FOR PATIENTS ONLY" and here it seems like everyone is trying to give me something.
The delays seem to be about the same as at Arizona Oncology, which is disappointing, but I guess there is an order to things. They don't want to mix the chemotherapy until you get the OK from your doctor - your actual doctor, not an assistant like at Arizona Oncology - and the doctor won't OK you unless you and your blood work look well. So there's delays each step of the way: bloodwork, delay, doctor visit, delay, chemotherapy.
Everything went quite well though, except the nausea was still there and they ended up giving her the anti-nausea medications she usually got despite the hope we'd be able to start cutting back. Hopefully this side effect will fade over the next few treatments as the doctor predicted. We go back in Thursday to have the pump removed. I think we're going to keep getting the home hydration, at least this time around, if for no other reason than to help her clear everything out of her system faster.
Karen doesn't have the energy to go out anywhere most of the time as of late, but even when she does have the energy, the cold sensitivities or other chemo side effects tend to make her want to stay in. If she can get past all that, she is really good about wearing a mask, and we're both really good about washing our hands when we come back from an outing. So we started to wonder where she could have gotten a "hospital bug" from. At her next chemotherapy appointment, Karen pointed out one of the nurses at Arizona Oncology that didn't consistently use gloves. They don't use masks for accessing ports like they do at Mayo, but they deal with so many ports and we hadn't see anyone drop dead from the lack of a mask, so we had gotten use to the idea. But not using gloves was a bit much. They already have everyone crammed into one square room, and since the pumps need to be plugged into the wall, everyone is elbow to elbow against the wall.
Karen also needed another blood transfusion due to low hemoglobin. Arizona Oncology wanted to do a bone marrow biopsy for further investigation. The nurse who brought the news to us followed up with, "Don't worry. It's not as bad as people say it is." Which is the worst thing you can say. First, she's probably never had it done herself, so how would she know? Why should we take her word over others? And second, we had no preconceptions about the procedure, but now we had the most horrible images in our mind. The idea of a bone marrow biopsy was just flat out scarey after that. Karen now had something new to worry about, and worrying about a procedure can be just as tough on you as the pain and discomfort of the procedure itself.
However, with the MRSA scare fresh in our minds, we decided to contact Mayo and have it done there instead. Without encouragement from us, the oncologist we're working with at Mayo said it was unnecessary at this time. So with everything that had been going on, and with our new concerns about Arizona Oncology, we decided to do the remaining 4 treatments at Mayo, despite the hour long drive. The drive is about twice as far as the Mayo location we normally visit, since they don't do Chemotherapy at that location.
We set up an appointment for last Tuesday to get some blood work, meet with the oncologist there, and have chemotherapy. They found, along with the usual low blood cell counts, that Karen's platelets had now dropped as well. In addition to that, she was still having nausea and taking anti-nausea medication, and it had always gone away by the start of her next treatment. The oncologist said her body was telling us it needs a week off.
Karen was glad to have the break, but was unsure if it was a good thing or not. She said she felt like she was suspended from school for doing something wrong, but now gets to stay home and watch TV. Unfortunately, I don't think the week went as well had she had hoped. Mostly because the chemo has been building up in her system, and hitting her so hard; it took almost the whole week to recover to where she would normally be before chemo. She was in a lot more pain than usual, and ended up sleeping most of the time. Still, I think the break was good for her.
We went in back into Mayo today for another attempt at her ninth treatment. Her platelet count was the biggest concern last time, and it had recovered nicely. Her hemoglobin had still dropped a little, but she was healthy enough for chemo.
The oncologist said it's not uncommon for people to only receive 8 treatments of the chemotherapy medication Oxaliplatin when they have stage IV colon cancer. This is to avoid any permanent nerve damage that can occur, especially with future treatments, as such advanced cancer has a way of popping back up again. Since Karen had received HIPEC during surgery, there's a better chance there won't be recurrences, and 12 treatments with Oxaliplatin fit in with that aggressive line of treatment. However, seeing how much it had been effecting Karen, the doctor decided to drop the Oxaliplatin for the remainder of her chemotherapy, leaving her at 8 treatments.
Along with the neuropathy, this drug is also responsible for her cold sensitivity. Karen's issues with cold sensitivity should start to drop off right away, but he said the neuropathy will continue to get worse for a "quite a while." He wouldn't say exactly how long until it starts to get better, but it's going to be one of those things that varies from person to person anyway. At least from now on the remainder of her treatments should be easier on her body, which will be nice after the consistently stronger side effects. He thinks we may even be able to back off some of the nausea medication for the remainder of her treatments. We'll see about that.
Chemotherapy at Mayo is a quite a bit different. And it's not just with the use of masks and gloves. Patients are in a room I can only describe as U shaped. You not only have a good 10 feet between patients, but there are separating walls between units, and yes, your own TV. Much like Arizona Oncology, they have several different flavors of juice, protein drinks, coffee, etc. The only possible down side - if you can even really call it that - is they have no complimentary junk food for the patients here. There are bowls of individually wrapped crackers scattered around, and they have unsweetened apple sauce, fruit bars, granola bars, etc. But the tasty junk food is missing; no more Cheez-Its, M&Ms, and candy bars during chemo. Of course at Arizona Oncology they had a big sign on the snacks saying "FOR PATIENTS ONLY" and here it seems like everyone is trying to give me something.
The delays seem to be about the same as at Arizona Oncology, which is disappointing, but I guess there is an order to things. They don't want to mix the chemotherapy until you get the OK from your doctor - your actual doctor, not an assistant like at Arizona Oncology - and the doctor won't OK you unless you and your blood work look well. So there's delays each step of the way: bloodwork, delay, doctor visit, delay, chemotherapy.
Everything went quite well though, except the nausea was still there and they ended up giving her the anti-nausea medications she usually got despite the hope we'd be able to start cutting back. Hopefully this side effect will fade over the next few treatments as the doctor predicted. We go back in Thursday to have the pump removed. I think we're going to keep getting the home hydration, at least this time around, if for no other reason than to help her clear everything out of her system faster.
Thursday, February 6, 2014
Halfway!
Karen received her sixth chemotherapy treatment from January 28th to 30th. Each time before chemo, they do some blood work. I've mentioned the blood cell counts before. Early on there was a problem with white blood cell count, but the shot of Pegfilgrastim (aka Neulasta) they give her has managed to bring those numbers above critical. However, red blood cell count and hemoglobin have continued to fall. Another thing they monitor are tumor markers. These are substances that often become elevated in the body when there's a tumor. Two of these, CEA and CA19-9, have slowly been climbing. They are only hints, as other things can elevate these numbers. For example, smoking can raise your CEA levels to those found in cancer patients.
The plan was always to have some bloodwork and another CAT scan done at Mayo Clinic after the sixth treatment. This was done yesterday, and we saw the oncologist at Mayo today. The good news is that the CAT scan is clean. There were no new growths. Surprisingly, the bloodwork showed that her CEA had dropped drastically in just the week since her last bloodwork. It's actually the lowest it's been since starting chemotherapy.
Her CA19-9 however, continues to climb. While this can be a sign of something bad, the doctor says it's still possible these numbers are just a reaction to her extensive surgery. And we'll just continue to watch the levels for now. Her hemoglobin has also now fallen into critical range; this explains some of the weakness she's been feeling. They suggested she get two units of blood, and being eager to feel better, she agreed. She received both units of blood over roughly 4 hours. Hopefully this helps with her energy levels.
The doctor says, assuming CA19-9 starts to drop, and CEA stays low, the plan will be to continue chemotherapy as is for another 6 treatments. Everyone we've talked to - even the Oncologist at Mayo who warned us heavily about neuropathy becoming permanent - seems reluctant to reduce the Oxaliplatin. Karen isn't too happy about this, but seems willing to hang on to the full dose as long as she can. On the bright side of things, this means she's officially half way done with this round of treatment. A month or so after she finishes treatment, they'll do another cat scan to check for any growth or changes. And then just watch it very carefully.
The plan was always to have some bloodwork and another CAT scan done at Mayo Clinic after the sixth treatment. This was done yesterday, and we saw the oncologist at Mayo today. The good news is that the CAT scan is clean. There were no new growths. Surprisingly, the bloodwork showed that her CEA had dropped drastically in just the week since her last bloodwork. It's actually the lowest it's been since starting chemotherapy.
Her CA19-9 however, continues to climb. While this can be a sign of something bad, the doctor says it's still possible these numbers are just a reaction to her extensive surgery. And we'll just continue to watch the levels for now. Her hemoglobin has also now fallen into critical range; this explains some of the weakness she's been feeling. They suggested she get two units of blood, and being eager to feel better, she agreed. She received both units of blood over roughly 4 hours. Hopefully this helps with her energy levels.
The doctor says, assuming CA19-9 starts to drop, and CEA stays low, the plan will be to continue chemotherapy as is for another 6 treatments. Everyone we've talked to - even the Oncologist at Mayo who warned us heavily about neuropathy becoming permanent - seems reluctant to reduce the Oxaliplatin. Karen isn't too happy about this, but seems willing to hang on to the full dose as long as she can. On the bright side of things, this means she's officially half way done with this round of treatment. A month or so after she finishes treatment, they'll do another cat scan to check for any growth or changes. And then just watch it very carefully.
Monday, January 13, 2014
Another One Down
Karen started chemotherapy December 31st, and the pump came off January 2nd. And we're ready to start again tomorrow. There's been no major problems or emergency visits to the hospital, but there only seems to be a couple of good days before starting chemo again. Each session seems to play out roughly the same.
When we go in for chemo there's a small wait, we usually see the physicians assistant first. She's very nice - we like her more than the doctor - and she asks Karen how's she's doing and makes suggestions to help her through the chemo. Last time, seeing that that extra hydration Karen received had helped, she signed her up for "home hydration." That's where we receive saline over IV at home. We were lined up with half a liter a day for 3 days. For comparison, when they give Karen hydration at the clinic, it's a full liter at a time.
We got a big package from Walgreen's, of all places, and a home health nurse came by to show me up how to hook everything up to Karen's port - which Arizona Oncology left accessed - and then came back 3 days later to de-access the port. This helped, and Karen felt better, but it wasn't enough and we ended up going back in on Wednesday (the 8th) for more fluids. So they told us they will set us up with 6 days worth of home hydration next time.
The chemo symptoms start with cold sensitivity; being the worst the first three days. I assume this is from the Oxaliplatin they give the first day. This lessens over time, but it no longer passes between treatments. They said symptoms will get worse over time, and this one certainly is. It's to the point where she constantly wears gloves and heavy socks, and wears a mask to cover her nose when she goes out. When it's at it's worst she can only drink warm fluids, and even at her best, metal silverware is too cold to hold even through gloves.
There are occasionally cramps in her hands these first several days. There's some foot cramping too, but it seems much less common. She says it's nothing unbearable. There's also the hiccups during this time but she can control them quite effectively through relaxation; this symptom might actually be lessening. By the second day she's feel pretty tired and starts sleeping a lot. This is also when her finger pains start. These are unrelated, but compounded by, her cold sensitivity. This is called neuropathy, and with the extreme cold sensitivity she gets, it's hard for her to tell one apart from the other. It may actually be reaching from one session to the next at this point.
On the third day of her treatment, when the pump comes off, she gets another dose of Aloxi, which makes a huge difference over what had previously been her two most nauseous days, bringing it completely under control now. Along with everything else they are doing, we only have to stay on top of the ondansetron (aka Zofran) to keep the nausea away. It's only the smell of certain foods that set it off, my beloved garlic being one of them. A lot of fried and grilled foods with strong smells do it as well, grilled peppers being another example.
In addition to the chemotherapy induced nausea, some of the nausea is also brought on by dehydration. As I mentioned earlier, they have been giving her a liter of hydration during each visit. The major cause of the dehydration is the diarrhea that starts on the third day as well. It slows down, but lasts for nearly a week. If she drinks too much fluid too quickly, even when she's not on chemo, everything comes flushing out. Coffee is particularly good at this, but anything can do it. So once the diarrhea starts, it's very hard to catch up.
To make staying hydrated even more difficult, anything she drinks has to be warm due to her cold sensitivity. And warm water by itself isn't pleasant. Lately we've been squeezing lemon into the water, which helps, and there are occasions where she'll feel like tea. But we have to be careful with sugar, as it makes the diarrhea worse. This is a constant battle, and why they've started hydration at home.
On her pump-off day, she receives an injection into her abdomen which stimulates white cell production. This causes bone pain, and weakness and fatigue similar to what you can get with a flu. Oh, and another side effect is diarrhea! They have her take naproxin before coming in so that it's already in effect when they give her the shot. Perhaps due to the careful management of the naproxin, she's never really noticed the bone pain. Or maybe she just doesn't notice it with all the other chemo side effects in the mix. She has mentioned feeling like she has the flu for several days after.
The weakness and fatigue are pretty much every day. While the injection to raise the white blood cell count has this effect, she had weakness and fatigue before they started it, just from the chemo drugs. The worst of it does seem to be for those first three days after the pump comes off, but her energy level is slow to recover.
All in all, she feels pretty bad for the first 8 or 9 days. There's 2 to 3 days where she can drink room temperature water and I start to see larger gains in her energy level, but in the end, that only leaves 2 or 3 truly "good" days before starting chemotherapy again.
When we go in for chemo there's a small wait, we usually see the physicians assistant first. She's very nice - we like her more than the doctor - and she asks Karen how's she's doing and makes suggestions to help her through the chemo. Last time, seeing that that extra hydration Karen received had helped, she signed her up for "home hydration." That's where we receive saline over IV at home. We were lined up with half a liter a day for 3 days. For comparison, when they give Karen hydration at the clinic, it's a full liter at a time.
We got a big package from Walgreen's, of all places, and a home health nurse came by to show me up how to hook everything up to Karen's port - which Arizona Oncology left accessed - and then came back 3 days later to de-access the port. This helped, and Karen felt better, but it wasn't enough and we ended up going back in on Wednesday (the 8th) for more fluids. So they told us they will set us up with 6 days worth of home hydration next time.
The chemo symptoms start with cold sensitivity; being the worst the first three days. I assume this is from the Oxaliplatin they give the first day. This lessens over time, but it no longer passes between treatments. They said symptoms will get worse over time, and this one certainly is. It's to the point where she constantly wears gloves and heavy socks, and wears a mask to cover her nose when she goes out. When it's at it's worst she can only drink warm fluids, and even at her best, metal silverware is too cold to hold even through gloves.
There are occasionally cramps in her hands these first several days. There's some foot cramping too, but it seems much less common. She says it's nothing unbearable. There's also the hiccups during this time but she can control them quite effectively through relaxation; this symptom might actually be lessening. By the second day she's feel pretty tired and starts sleeping a lot. This is also when her finger pains start. These are unrelated, but compounded by, her cold sensitivity. This is called neuropathy, and with the extreme cold sensitivity she gets, it's hard for her to tell one apart from the other. It may actually be reaching from one session to the next at this point.
On the third day of her treatment, when the pump comes off, she gets another dose of Aloxi, which makes a huge difference over what had previously been her two most nauseous days, bringing it completely under control now. Along with everything else they are doing, we only have to stay on top of the ondansetron (aka Zofran) to keep the nausea away. It's only the smell of certain foods that set it off, my beloved garlic being one of them. A lot of fried and grilled foods with strong smells do it as well, grilled peppers being another example.
To make staying hydrated even more difficult, anything she drinks has to be warm due to her cold sensitivity. And warm water by itself isn't pleasant. Lately we've been squeezing lemon into the water, which helps, and there are occasions where she'll feel like tea. But we have to be careful with sugar, as it makes the diarrhea worse. This is a constant battle, and why they've started hydration at home.
On her pump-off day, she receives an injection into her abdomen which stimulates white cell production. This causes bone pain, and weakness and fatigue similar to what you can get with a flu. Oh, and another side effect is diarrhea! They have her take naproxin before coming in so that it's already in effect when they give her the shot. Perhaps due to the careful management of the naproxin, she's never really noticed the bone pain. Or maybe she just doesn't notice it with all the other chemo side effects in the mix. She has mentioned feeling like she has the flu for several days after.
The weakness and fatigue are pretty much every day. While the injection to raise the white blood cell count has this effect, she had weakness and fatigue before they started it, just from the chemo drugs. The worst of it does seem to be for those first three days after the pump comes off, but her energy level is slow to recover.
All in all, she feels pretty bad for the first 8 or 9 days. There's 2 to 3 days where she can drink room temperature water and I start to see larger gains in her energy level, but in the end, that only leaves 2 or 3 truly "good" days before starting chemotherapy again.
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