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.
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