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.
Wednesday, May 14, 2014
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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