Megan is home. She came home from the hospital yesterday, as planned. The drive was uneventful, but as predicted by her doctors, it made her quite tired. She's had some visitors since then that brought her spirits up. I'm sure many more of you would like to visit. With Hurricane Irene on the way, Monday is probably the next day she'll be up for some visitors. Feel free to send me an email (makisupapiggy@hotmail.com) or call one of our cell phones and we'll try to work out a good time. If I don't answer, just leave a message and I'll get back to you when I can.
Saturday, August 27, 2011
Thursday, August 25, 2011
Another update from the hospital
I'm sorry if this is the first time you're hearing this latest update. There is nobody that wishes we were not here more than me, but unfortunately these are the facts of the situation.
Today we began the process to bring Megan home. The bilirubin levels continue to rise, and there is no treatment that her body can handle in this condition. While there is always reason to hope that these levels come down and a treatment can be resumed, her oncologist thinks this is unlikely. Megan's liver is largely taken over by tumor mass and it will likely continue to degrade and fail. Although there are no signs of infection in recent blood cultures, urinalysis and chest X-Ray, she will continue oral antibiotics at home for precautionary reasons. If there was an infection that precipitated this, it appears to have cleared up, but it's also possible that this has always been the cancer.
Megan is relieved to be going home. Home hospice has been contacted and will be available to help keep her comfortable and treat her symptoms. She will be able to sleep more (no multiple-per-night wake-ups to check vital signs) and "visiting hours" will be much more flexible. And of course, she will be in the comfort and familiarity of her own home surrounded by those who love her, including her two favorite cats.
Right now she is scheduled to be discharged on Friday around 11. We expect to speak to the hospice nurse that afternoon and arrange a time to meet her. We'll discuss a schedule for her to visit, learn more about the inter-disciplinary team that will help us care for her (in addition to the nurse, there are a social worker, a chaplain and other people available) and, in general, better understand the care that hospice provides to make the remaining time that Megan has as comfortable and liveable as possible.
Megan also wrote a few words before asking me to summarize the above details:
Well, we finally got some factual information from the one person we trust - my oncologist. She leveled with us and told us that it's looking pretty bleak and that we're kind of out of treatment options. So, I'm going into home hospice where I can feel more comfortable and spend more time with the kitties and not drive Rusty crazy going back and forth. I envision visiting hours to be more flexible, but I know I'm starting to lose it a bit as well. I'll try to post again when I know more, but we all know how that's been going.
I will continue to post updates as I can. Thank you for your continued prayers, thoughts and well-wishes.
Today we began the process to bring Megan home. The bilirubin levels continue to rise, and there is no treatment that her body can handle in this condition. While there is always reason to hope that these levels come down and a treatment can be resumed, her oncologist thinks this is unlikely. Megan's liver is largely taken over by tumor mass and it will likely continue to degrade and fail. Although there are no signs of infection in recent blood cultures, urinalysis and chest X-Ray, she will continue oral antibiotics at home for precautionary reasons. If there was an infection that precipitated this, it appears to have cleared up, but it's also possible that this has always been the cancer.
Megan is relieved to be going home. Home hospice has been contacted and will be available to help keep her comfortable and treat her symptoms. She will be able to sleep more (no multiple-per-night wake-ups to check vital signs) and "visiting hours" will be much more flexible. And of course, she will be in the comfort and familiarity of her own home surrounded by those who love her, including her two favorite cats.
Right now she is scheduled to be discharged on Friday around 11. We expect to speak to the hospice nurse that afternoon and arrange a time to meet her. We'll discuss a schedule for her to visit, learn more about the inter-disciplinary team that will help us care for her (in addition to the nurse, there are a social worker, a chaplain and other people available) and, in general, better understand the care that hospice provides to make the remaining time that Megan has as comfortable and liveable as possible.
Megan also wrote a few words before asking me to summarize the above details:
Well, we finally got some factual information from the one person we trust - my oncologist. She leveled with us and told us that it's looking pretty bleak and that we're kind of out of treatment options. So, I'm going into home hospice where I can feel more comfortable and spend more time with the kitties and not drive Rusty crazy going back and forth. I envision visiting hours to be more flexible, but I know I'm starting to lose it a bit as well. I'll try to post again when I know more, but we all know how that's been going.
I will continue to post updates as I can. Thank you for your continued prayers, thoughts and well-wishes.
Tuesday, August 23, 2011
Megan Update
On Thursday, August 18, Megan, Mom Lally and I went to Dana Farber for a scheduled appointment. It was Megan's last day of taking a new drug (Seliciclib) on the clinical trial that she is part of, and the intent was to check out her blood chemistry to see the effect of the chemicals, take a skin biopsy to view the effect of the drugs on cell division and perform other, similar trial-centric tests. As Megan has been a part of other trials, we've been through similar routines. This appointment was anything but routine.
The difficulties started earlier in the day after Megan got out of the shower. I observed that she was taking many short, rapid breaths. The appointment was just an hour from now, so we got in the car and made the ~45 mile drive to the Yawkey Center at Dana Farber. During this drive, Megan sat back and closed her eyes, and her breathing slowed to a more normal pace, and so we hoped all was well and she was just anxious for the appointment.
Once in the nurse's care, the "typical" tests were begun. The nurses had difficulty drawing blood, and surmised that Megan was dehydrated. No problem, they'll just run an IV and get her pumped up with fluids. Unfortunately, running an IV became a challenge. Megan's veins are good for playing hide-and-go-seek any day of the week, but even more so when she is a little dehydrated. Perhaps my perception of time is off a bit, but it seemed like 5 nurses took turns for almost 2 hours attempting to find a vein to get fluids running. As they attempted this, periodic blood pressure measurements showed a continual drop.
And the problematic symptoms only increased. During this time, new pains emerged in Megan's lower back and stomach area. She was light-headed, nauseous and eventually got sick. The nurses called an ambulance and let us know that Megan would be admitted to the emergency room because they would have more tools available to aid in getting an IV into her to get her re-hydrated.
Once in the emergency room, an IV was run and they began pumping lots of fluids into Megan. Several tests were run: Chest X-ray, 2 kinds of ultrasounds, and a VQ scan. The only definitive finding was that her gallbladder was enlarged, and the doctor's surmised that some kind of infection was responsible. This explained her other symptoms, as well.
Megan was admitted to the Brigham and Women's Hospital adjacent to Dana Farber in Boston and started on a trial of antibiotics. By Thursday night, her blood pressure was normal and Megan was feeling much better. On Friday, a new blood draw was taken and Megan's BP, pulse and temp were all looking good, and Megan was up and feeling well. Unfortunately, that blood draw showed that her white blood cell count (WBC) and some of the liver function tests (LFTs) were elevated.
It's now Tuesday, and this is largely where we still are today. Megan is still in the hospital. A variety of additional tests have been run, including chest X-Ray, MRI, and many blood draws. The WBCs have been increasing daily. Up until today most LFTs were increasing. Today showed that 4 of the 5 metrics in the LFTs all decreased, however the amount of Bilirubin ("Bili") present in Megan's blood continued to increase. That said, the WBC and Bili increase day-over-day was considerably smaller than the prior day.
The MRI has shown that Megan's liver bile duct, where bilirubin should be removed from the blood and converted to waste, is unobstructed. If this were obstructed, this would be a concrete (and bad) reason for the increased Bili counts in the blood. It's good news that this is not obstructed, but doesn't explain the source of the increased levels. The scan also showed that Megan's gallbladder is back to a normal size. Finally, the Gastro-intestinal Dr said he did not think there was an increase in tumor mass that could explain this, based on the MRI. We're still waiting for results of the chest X-ray to see what else we learn.
The current theory is that Megan does indeed have some kind of infection and that the antibiotics are working as evidenced by the normal sized gallbladder, normal BP, and decrease or slowing in a number of the metrics. The Dr's can justify that the Bili is high even though other metrics have lowered because the Liver likely slowed when infection was at its highest, and a queue of sorts of Bilirubin has built up in the blood and that the liver needs to get caught up. We will continue to watch these metrics over the next couple days. Additionally, a new blood culture has been taken to investigate for additional infectious agents.
That's the latest information. On a less "technical" note, Megan is feeling OK. Pain has decreased. She is often very tired and takes many naps, but when awake is in good spirits. She feels she is in the best care that she could be in, and is in no hurry to leave so long as there are additional questions to answer. When we have some more of the answers, I'll write back. Thanks for all your thoughts, prayers and well-wishes.
The difficulties started earlier in the day after Megan got out of the shower. I observed that she was taking many short, rapid breaths. The appointment was just an hour from now, so we got in the car and made the ~45 mile drive to the Yawkey Center at Dana Farber. During this drive, Megan sat back and closed her eyes, and her breathing slowed to a more normal pace, and so we hoped all was well and she was just anxious for the appointment.
Once in the nurse's care, the "typical" tests were begun. The nurses had difficulty drawing blood, and surmised that Megan was dehydrated. No problem, they'll just run an IV and get her pumped up with fluids. Unfortunately, running an IV became a challenge. Megan's veins are good for playing hide-and-go-seek any day of the week, but even more so when she is a little dehydrated. Perhaps my perception of time is off a bit, but it seemed like 5 nurses took turns for almost 2 hours attempting to find a vein to get fluids running. As they attempted this, periodic blood pressure measurements showed a continual drop.
And the problematic symptoms only increased. During this time, new pains emerged in Megan's lower back and stomach area. She was light-headed, nauseous and eventually got sick. The nurses called an ambulance and let us know that Megan would be admitted to the emergency room because they would have more tools available to aid in getting an IV into her to get her re-hydrated.
Once in the emergency room, an IV was run and they began pumping lots of fluids into Megan. Several tests were run: Chest X-ray, 2 kinds of ultrasounds, and a VQ scan. The only definitive finding was that her gallbladder was enlarged, and the doctor's surmised that some kind of infection was responsible. This explained her other symptoms, as well.
Megan was admitted to the Brigham and Women's Hospital adjacent to Dana Farber in Boston and started on a trial of antibiotics. By Thursday night, her blood pressure was normal and Megan was feeling much better. On Friday, a new blood draw was taken and Megan's BP, pulse and temp were all looking good, and Megan was up and feeling well. Unfortunately, that blood draw showed that her white blood cell count (WBC) and some of the liver function tests (LFTs) were elevated.
It's now Tuesday, and this is largely where we still are today. Megan is still in the hospital. A variety of additional tests have been run, including chest X-Ray, MRI, and many blood draws. The WBCs have been increasing daily. Up until today most LFTs were increasing. Today showed that 4 of the 5 metrics in the LFTs all decreased, however the amount of Bilirubin ("Bili") present in Megan's blood continued to increase. That said, the WBC and Bili increase day-over-day was considerably smaller than the prior day.
The MRI has shown that Megan's liver bile duct, where bilirubin should be removed from the blood and converted to waste, is unobstructed. If this were obstructed, this would be a concrete (and bad) reason for the increased Bili counts in the blood. It's good news that this is not obstructed, but doesn't explain the source of the increased levels. The scan also showed that Megan's gallbladder is back to a normal size. Finally, the Gastro-intestinal Dr said he did not think there was an increase in tumor mass that could explain this, based on the MRI. We're still waiting for results of the chest X-ray to see what else we learn.
The current theory is that Megan does indeed have some kind of infection and that the antibiotics are working as evidenced by the normal sized gallbladder, normal BP, and decrease or slowing in a number of the metrics. The Dr's can justify that the Bili is high even though other metrics have lowered because the Liver likely slowed when infection was at its highest, and a queue of sorts of Bilirubin has built up in the blood and that the liver needs to get caught up. We will continue to watch these metrics over the next couple days. Additionally, a new blood culture has been taken to investigate for additional infectious agents.
That's the latest information. On a less "technical" note, Megan is feeling OK. Pain has decreased. She is often very tired and takes many naps, but when awake is in good spirits. She feels she is in the best care that she could be in, and is in no hurry to leave so long as there are additional questions to answer. When we have some more of the answers, I'll write back. Thanks for all your thoughts, prayers and well-wishes.
Wednesday, August 10, 2011
New Trial
I thought now would be a good time to give an update on the new trial. I started on Monday. I went to Dana Farber and had a skin biopsy on my right thigh. I actually began taking the meds on Monday evening. So far I haven't really noticed too many side effects.
I have some mild dry skin. I have been pretty tired (nearly nodding off at work!). I have also been in a fair amount of pain over the last few days. It's all over the place. Sometimes in my right shoulder, sometimes in my center abdomen, sometimes on my right side. I'm hoping this is the tumor cells dying a horrible death.
On Monday evening I begin with the heavy hitter - the drug that is supposed to make me really tired and sick. But, I've heard that it goes away pretty quickly. We shall see. I'll keep you posted!
I have some mild dry skin. I have been pretty tired (nearly nodding off at work!). I have also been in a fair amount of pain over the last few days. It's all over the place. Sometimes in my right shoulder, sometimes in my center abdomen, sometimes on my right side. I'm hoping this is the tumor cells dying a horrible death.
On Monday evening I begin with the heavy hitter - the drug that is supposed to make me really tired and sick. But, I've heard that it goes away pretty quickly. We shall see. I'll keep you posted!
Thursday, August 4, 2011
Next
I had my pretesting appointment at Dana Farber on Wednesday, and I am happy to report that I am eligible to start the trial on Monday. The liver number that counts for this trial is still in the normal range. My other liver numbers have gotten a little worse (as expected), but the doctor felt comfortable letting me go the next 5 days without treatment so that I could start the next trial.
I am really pinning my hopes on this trial. We really need to find something that works because I am definitely feeling lots more pain and tiredness. It's hard to breathe deeply, because it causes a sharp pain in my right side when I try to take more than a shallow breath. This makes it difficult to do some activities, like walk up stairs. This is all very frustrating, but based on how I feel, I think I should know if we're starting to see results on the new meds.
Oddly enough, I have another comic to post. It's weird, this guy never posts about cancer and now he has two in one week. I thought this one was really funny, whereas the other one was more enlightening, and not really funny at all.
I thought this was cool. And yes, I do have these badass tattoos from my first rodeo. :-)
I am really pinning my hopes on this trial. We really need to find something that works because I am definitely feeling lots more pain and tiredness. It's hard to breathe deeply, because it causes a sharp pain in my right side when I try to take more than a shallow breath. This makes it difficult to do some activities, like walk up stairs. This is all very frustrating, but based on how I feel, I think I should know if we're starting to see results on the new meds.
Oddly enough, I have another comic to post. It's weird, this guy never posts about cancer and now he has two in one week. I thought this one was really funny, whereas the other one was more enlightening, and not really funny at all.
I thought this was cool. And yes, I do have these badass tattoos from my first rodeo. :-)
Sunday, July 31, 2011
Comic
I read an interesting comic the other day. It's by a guy who does about 2-3 web comics a week, and most of them are really nerdy. The name of the site is "xkcd" and when asked what that means, one blogger says "It means having to look something up on wikipedia for every second comic". It's that nerdy.
Anyway, a few months ago, the writer went on a bit of a hiatus because of a family medical problem, but he didn't disclose what kind of problem it was right away. It turns out that his wife, who is in her 30's, has Stage 3 cancer. Since her diagnosis, he occasionally writes comics about cancer, about dealing with people who don't understand cancer and treatments, etc. But he mostly still writes nerdy comics. The other day, he wrote a comic entitled "Lanes". If you are friends with me on Facebook, you may have noticed that I shared a link to it. Here is the comic:
If you have trouble reading it, you can go to the original comic here: http://xkcd.com/931/ Note that what those lanes represent is essential the stages of breast cancer. The left-most 25% is Stage 1, the next 25% is Stage 2, and so on. I thought the comic was a good way to sum up what it's like to deal with treatment from a bird's-eye view. There is so much that is unknown. You never really know if you're "cured", but you sure as hell know when you're not cured.
Obviously I'm not cured. I really hope to stay on the road. This Wednesday, I meet with my oncologist and go through a bunch of tests (including a CT scan) to see if I qualify for the next trial that I spoke about in my last post. If I don't make it, I will most likely go to taxol next. Here's hoping! I think the only thing that has the potential to disqualify me is my liver numbers, but I've been very good about that. I have not had an alcoholic beverage since Wednesday, and I won't have another one until after my test. Honestly, I really don't drink that much anymore anyway. I haven't had any tylenol, and I'm hoping to stay well-hydrated the day before and the day of the test.
I've been feeling decent over the last week. The pain on my right side is definitely increasing, but it's manageable. I am able to finally eat again! On the advice of my aunt (thanks, Louise!) and my doctor, I've been taking an antacid about 30-60 minutes before eating lunch and dinner. It has made a world of difference. I'm finally able to eat again without having awful pain 5 hours later. And that is a good thing.
Anyway, a few months ago, the writer went on a bit of a hiatus because of a family medical problem, but he didn't disclose what kind of problem it was right away. It turns out that his wife, who is in her 30's, has Stage 3 cancer. Since her diagnosis, he occasionally writes comics about cancer, about dealing with people who don't understand cancer and treatments, etc. But he mostly still writes nerdy comics. The other day, he wrote a comic entitled "Lanes". If you are friends with me on Facebook, you may have noticed that I shared a link to it. Here is the comic:
If you have trouble reading it, you can go to the original comic here: http://xkcd.com/931/ Note that what those lanes represent is essential the stages of breast cancer. The left-most 25% is Stage 1, the next 25% is Stage 2, and so on. I thought the comic was a good way to sum up what it's like to deal with treatment from a bird's-eye view. There is so much that is unknown. You never really know if you're "cured", but you sure as hell know when you're not cured.
Obviously I'm not cured. I really hope to stay on the road. This Wednesday, I meet with my oncologist and go through a bunch of tests (including a CT scan) to see if I qualify for the next trial that I spoke about in my last post. If I don't make it, I will most likely go to taxol next. Here's hoping! I think the only thing that has the potential to disqualify me is my liver numbers, but I've been very good about that. I have not had an alcoholic beverage since Wednesday, and I won't have another one until after my test. Honestly, I really don't drink that much anymore anyway. I haven't had any tylenol, and I'm hoping to stay well-hydrated the day before and the day of the test.
I've been feeling decent over the last week. The pain on my right side is definitely increasing, but it's manageable. I am able to finally eat again! On the advice of my aunt (thanks, Louise!) and my doctor, I've been taking an antacid about 30-60 minutes before eating lunch and dinner. It has made a world of difference. I'm finally able to eat again without having awful pain 5 hours later. And that is a good thing.
Friday, July 22, 2011
Results
I don't even know how to begin. What the hell.
My latest scan showed progression again.
I'm not sure whether or not I should be angry, depressed, or try to maintain a positive attitude. You may get a mix of all three in this post.
I kind of saw this coming. I hadn't been feeling well over the last week. I had problems with indigestion, I was feeling a little more pain in the liver area, and I just knew something was wrong. I was hoping it was the Xeloda doing it's work, but I knew better. When my oncologist told me that there was progression it really just confirmed what I had been suspecting. I tend not to post about every ache and pain on the blog (which is sometimes why there are big absences). I don't want to worry everyone, and I don't want it to seem like I whine about every little thing.
My oncologist laid out a few options for us. There is one study available to me, and 5 types of standard treatment. I'm not going to go into the standard treatments right now, because we are choosing the study. The reality is, the more lines of chemotherapy I have, the more ineligible I become for future studies because most of them have restrictions on the number of prior lines of therapy. I need to go with the trials now if I can tolerate it. What do I mean by that? Well, the trial also requires a 3-week flush out period where I have to be off the prior treatment. So, I basically have to go for the next 2 weeks without any treatment (it's already been a week since I stopped Xeloda).
The trial is supposedly akin to the PARP inhibitor trial that I did at the very beginning. That's the only treatment that worked at all, so I'm really trying to focus on that positive indication. It's an oral treatment, where I take one drug (Sapacitabine) for 8 days, and then I take another drug (Seliciclib) for 3 days. Then I have 11 days off. It's a Phase 1 study, but they are finished with dose escalation, and they are expanding the participants to BRCA-positive patients only because it has shown promise in these patients. (Score!)
Sapacitabine is a drug that has been shown in mice to be superior to Gemcitabine in treating liver tumors. Gemcitabine is one of the standard treatment options available to me. Sapacitabine attacks the DNA of the cells (which is what the Temozolomide did in the PARP trial). The side-effects of this drug are supposedly pretty mild.
Seliciclib is a cdk-inhibitor (cdk is a step in the cell life cycle), and it has been shown to induce cell death in a way that makes it so surrounding cells don't absorb any of that cell's "bad habits". The Seliciclib is supposed to produce more intense side-effects, mostly nausea and anorexia.
Together, the drugs should be killing cancer cells and preventing them from multiplying. Both drugs are oral drugs, which is great. It delays the necessity of a port. I really don't want a port, especially in the summer. I'll need to do 3 skin biopsies as part of the study (taken from my thigh this time), and a bunch of blood draws (that's par for the course). I should be scanned every two cycles at the start.
I am probably going to go for pretesting on August 3rd, and I should start treatment on August 8th. The thing we're mostly concerned about at this point is my liver function. If the numbers get above a certain threshold, I won't be able to participate in the study. So far, the number they use is actually in the normal range in my blood work (though other liver-function tests are not). I'm just going to keep taking my pain killers over the next 2 weeks, and I'm supposed to let my doctor know if things get appreciably worse. If I can't participate in the study, we want to move to standard treatment ASAP. In fact, she said that I could start that standard treatment today if I really wanted it. But I don't.
That's about all I know about the new treatment. I have an internet acquaintance that also sees my oncologist, and she'll be starting this exact treatment on July 25th. We're going to keep in touch, and she'll be able to let me know how things are going. I'm kind of excited that I'll have someone else ahead of me to warn me of the side-effects since there is so little information out there about these two drugs.
Now on to the actual results. For the first time in awhile, I actually read and digested the radiologist's report (I don't think I ever received the last one, since I got the results over the phone). It was kind of scary. The size of the large tumor seems huge. It was 17.8 x 16 x 6.9 cm, and it has grown to 17.8 x 19.4 x 7.9 cm. When I saw these numbers I freaked out. That's like the size of a football. I asked my case manager at Blue Cross about this, and she explained that these aren't spherical dimensions. This is how long/wide/high the tumor is at its greatest point. So, it probably looks more like a badly butchered piece of steak instead of a football. The tumor is pressing against my lungs to the point where the right lower lobe has likely partially collapsed. They use the obfuscated term "atelectasis" on the report. Nice try, radiologist, but I have wikipedia. Everything else in the scan is clear.
My lab results are also getting worse, as expected. My liver function number (SGOT) went from 98 to 104. The trial is only concerned with the SGPT number, which is 47 (normal is between 7 and 52). I don't know what the actual cut off is, and I don't know the difference between SGOT and SGPT. I can only care about so many things :-) My CA 27-29 tumor markers went from 131 to 182. Yowza.
So this is all kind of freaking me out. Not gonna lie. I've been secretly telling myself that if I got more bad news I was going to quit work and go out on disability. I'm still not sure if I'm ready for that, but I'm also not getting the kind of satisfaction out of work that I once was. I'm going to deal with that next week, though, and I don't think this is the most appropriate forum to vent about my work frustrations :-)
As I am wont to do, I'm going to end this post with some positive thoughts. No more hand and foot syndrome!! My hands and feet had been getting pretty bad. It was starting to interfere with my knitting, and it was about to interfere with my spa trip tomorrow. I was reluctant to get a pedicure while my feet were in pain, even though my esthetician at St. Cyr is really accommodating and listens to me when I tell her not to slough the dead skin off my heel, since that skin feels like it's burning. Right now my feet feel pretty much normal, so I am getting the standard treatment tomorrow, which makes me very happy.
I also should notice my energy levels rebound over the next couple of weeks. Unfortunately, I've been having trouble eating because the tumor is pressing against my stomach. I need to eat smaller meals, but I love to eat, and it's hard to adjust to that style of eating. I've lost about 10 pounds over the last 4-6 weeks. Normally I would be thrilled about that, but that's not really the goal at the moment. Rusty is making sure I drink Ensure when I can't get a good meal in (another Grandma moment). It's actually not bad, and it comes in a dark chocolate flavor. Yum.
Over the next two weeks, I'm going to try to be happy that my body is not enduring treatments. I'm going to try to look up cancer-fighting foods and I'll eat some (in small portions). I'm going to try to get some rest and knit and sew lots. And I'll try to update the blog every now and then.
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