Monday, December 10, 2012
50 Pint Challenge
During Andrew's long battle with cancer he has needed many, many blood transfusions. We have started a donation challenge on Facebook to encourage our huge group of supporters to donate a pint of blood or platelets, and help us reach our goal of 50 pints. Those who have been following this blog know his story, but I will reprint what we put on Facebook:
Thursday, December 6, 2012
Back to the beginning.
It's been a difficult few weeks here. Andrew has been feeling generally terrible on the new oral chemo regimen. He really wasn't able to get out of bed at all during last week, and he was having increasing pain. We decided it was time to call Dr. W and get a CBC to see if he needed some blood support. The CBC showed that A's platelets were low so Dr. W ordered a transfusion for the next morning.
The pain became unbearable that night and Andrew couldn't sleep a wink, so we went for the transfusion, and then I called Dr. Z's office to let them know what was going on. After a while, his nurse called me back and said that Dr. Z. wanted us to come right away to the Urgent Care at MSK, and that Andrew would most likely be admitted. So we drove down last night, and Andrew was admitted around midnight. The doctors say that he has very high levels of calcium, which have been increasing since September. They don't believe that the chemo drugs caused the calcium spike, but that it's caused by the lymphoma. This happened to Andrew once before, at the beginning of this whole ordeal. I had to look back into the blog to find it -- right before he was due to start his very first chemo treatment, he had a calcium spike from the widespread lymphoma which led to his 5-week hospital admission. So now we have arrived right back at the beginning.
Dr. Z. is away at a conference until Wednesday, so I'm not really sure what is going to happen next. They're giving him drugs and fluids to get the calcium down, and then hopefully he will be able to come home. I don't know yet if he will be getting his treatment as planned on Tuesday, or if they will change course.
The pain became unbearable that night and Andrew couldn't sleep a wink, so we went for the transfusion, and then I called Dr. Z's office to let them know what was going on. After a while, his nurse called me back and said that Dr. Z. wanted us to come right away to the Urgent Care at MSK, and that Andrew would most likely be admitted. So we drove down last night, and Andrew was admitted around midnight. The doctors say that he has very high levels of calcium, which have been increasing since September. They don't believe that the chemo drugs caused the calcium spike, but that it's caused by the lymphoma. This happened to Andrew once before, at the beginning of this whole ordeal. I had to look back into the blog to find it -- right before he was due to start his very first chemo treatment, he had a calcium spike from the widespread lymphoma which led to his 5-week hospital admission. So now we have arrived right back at the beginning.
Dr. Z. is away at a conference until Wednesday, so I'm not really sure what is going to happen next. They're giving him drugs and fluids to get the calcium down, and then hopefully he will be able to come home. I don't know yet if he will be getting his treatment as planned on Tuesday, or if they will change course.
Wednesday, November 21, 2012
Thanksgiving
The lenalidomide did not work as we had hoped. The PET showed a good deal of growth. Andrew has started the first of two rounds of an oral chemotherapy -- I'm not even sure what it's called -- I think I stopped listening after seeing the scan. Fortunately, Andrew listened, so he knows what he's supposed to take and when.
We hope everyone has a lovely Thanksgiving -- thank you for all of you thoughts and prayers all year long!
xo
L
We hope everyone has a lovely Thanksgiving -- thank you for all of you thoughts and prayers all year long!
xo
L
Friday, November 16, 2012
quick update
Hi everyone,
Just a quick update -- Andrew has finished his first course of lenalidomide. He went into it not feeling great -- he was having debilitating headaches from a sinus infection (very hard to get rid of these things when you have no immune system), but Dr. W. prescribed some ABX that really helped. After that, things seemed to go pretty smoothly -- a few uncomfortable side effects, but no transfusions were needed during the 23-day course, so I consider that a victory! He had his PET scan yesterday at MSK and we will see Dr. Z. on Tuesday for the results. We are looking for "no growth". Dr. Z said it could take up to 3 courses to get rid of the cancer, so "no change", while not ideal, would be an acceptable result. If there has been growth of the cancer while on the lenalidomide, then we move on to the next option. Andrew's blood counts were all good yesterday, but his weight was down 10 lbs from last month. He did have some nausea, so I guess it's not too much of a surprise, but he's feeling much better now and Thanksgiving is right around the corner -- we'll be sure to stuff him with lots of pie! His hair is also growing back -- the first time it came back after chemo it grew in gray, now it's growing in dark -- chemo is so weird.
xo
L
Just a quick update -- Andrew has finished his first course of lenalidomide. He went into it not feeling great -- he was having debilitating headaches from a sinus infection (very hard to get rid of these things when you have no immune system), but Dr. W. prescribed some ABX that really helped. After that, things seemed to go pretty smoothly -- a few uncomfortable side effects, but no transfusions were needed during the 23-day course, so I consider that a victory! He had his PET scan yesterday at MSK and we will see Dr. Z. on Tuesday for the results. We are looking for "no growth". Dr. Z said it could take up to 3 courses to get rid of the cancer, so "no change", while not ideal, would be an acceptable result. If there has been growth of the cancer while on the lenalidomide, then we move on to the next option. Andrew's blood counts were all good yesterday, but his weight was down 10 lbs from last month. He did have some nausea, so I guess it's not too much of a surprise, but he's feeling much better now and Thanksgiving is right around the corner -- we'll be sure to stuff him with lots of pie! His hair is also growing back -- the first time it came back after chemo it grew in gray, now it's growing in dark -- chemo is so weird.
xo
L
Wednesday, October 24, 2012
an answer at last
We saw Dr. Z yesterday, and he told us that they finally, FINALLY know what kind of lymphoma we're dealing with and why it has been so resistant to chemo. Dr. Z said that Andrew has had 2 populations of B Cell lymphoma coexisting in his body. It probably began as one, but when cells divide they sometimes mutate into different things -- no one knows why. One population of the B Cell lymphoma was a common type that responds well to chemotherapy -- that's what they were able to get rid of with ICE. The second population mutated into a different, rare type of B Cell lymphoma called activated B Cell (ABC) that is very resistant to chemo drugs. The reason it's been so difficult to diagnose, I imagine, is that the early bioposy samples must have been full of both populations, but since they were all B Cell it was hard to understand what was happening. They had to get rid of the first population to discover the second.
Fortunately, Dr. Z says that the lymphoma that's still present has all of the classic markers for its subtype, so we can now be clear about what we're dealing with and how to properly treat it. The bad news, obviously, is that its a very difficult type of cancer that previously offered a poor prognosis. The good news is that in just the last 2-3 years some new drugs have been developed that are showing real promise for eradicating this subtype of B Cell lymphoma. He's starting Andrew immediately on a drug called lenalidomide, which is a cousin to the old drug thalidomide (it's safe as long as you're not planning to have any babies while taking it!). It's not a chemo drug, it has a completely different mechanism of action -- in fact, they don't really know how it works, but it somehow targets and kills cancer cells and spares the healthy cells. It comes in a pill that Andrew will take every day for 21 days along with Rituxan, and then Dr. Z will check the progress. He said it could take 2 or 3 cycles of the drug to completely get rid of the cancer, and then we move on the the bone marrow transplant. If it doesn't work, we move on to a different drug. There aren't too many studies on lenalidomide for this type of lymphoma yet -- it was approved by the FDA 3 years ago for multiple myeloma (a different type of blood cancer), but it is starting to be used off-label for lymphoma as well. The few studies I could find were done on elderly patients, so we really don't have any good information on long term results for younger people. Andrew will be a sort of test case I suppose. This is when I think being at Sloan-Kettering will really pay off -- if we have a chance to beat this, it will be because we are here, where they have experience with the most difficult cancers, and access and knowledge of the newest available therapies. Dr. Z's body language was noticeably changed yesterday -- he was commanding and forceful because he had unraveled the mystery of diagnosis, and can now do what he is renowned for -- applying novel treatments.
The best part is that Andrew gets to be at home for treatment, not in the hospital. No IV's, terrible roommates, bad food, etc. We can celebrate Thanksgiving and Christmas with the boys in a normal fashion. He will have many of the same side effects as chemo -- low blood counts, possible transfusions, fatigue, nausea, etc., but we can deal with it in the comfort of our own house. This is huge for us.
We don't really ask Dr. Z about prognosis ever -- Andrew feels like that's pretty useless info because it can so often be wrong, and is calculated using factors that may not apply to each individual. You just have to take each development and each day as it comes, and make decisions based on your individual results. He's a living example of this -- it's amazing that a year later he's still alive and feeling so well, considering how terribly sick he was last year. But he's like a Timex, that guy, he takes a licking, keeps on ticking. He's been through everything and more, and he just keeps going and keeps fighting.
I receive daily lymphoma news alerts through Google, and I'm always stunned by how many people are being diagnosed with lymphoma every day -- children, teenagers, adults -- sports figures, newscasters, politicans, musicians, actors, moms, dads, school children. All of these people will most likely need a lot of blood products and many of them will need bone marrow transplants during treatment. The Thanksgiving and Christmas/Holiday season is a great time to donate blood through your local Red Cross or join the national bone marrow registry: http://marrow.org/Home.aspx
Give the gift of life!
xo
L
Fortunately, Dr. Z says that the lymphoma that's still present has all of the classic markers for its subtype, so we can now be clear about what we're dealing with and how to properly treat it. The bad news, obviously, is that its a very difficult type of cancer that previously offered a poor prognosis. The good news is that in just the last 2-3 years some new drugs have been developed that are showing real promise for eradicating this subtype of B Cell lymphoma. He's starting Andrew immediately on a drug called lenalidomide, which is a cousin to the old drug thalidomide (it's safe as long as you're not planning to have any babies while taking it!). It's not a chemo drug, it has a completely different mechanism of action -- in fact, they don't really know how it works, but it somehow targets and kills cancer cells and spares the healthy cells. It comes in a pill that Andrew will take every day for 21 days along with Rituxan, and then Dr. Z will check the progress. He said it could take 2 or 3 cycles of the drug to completely get rid of the cancer, and then we move on the the bone marrow transplant. If it doesn't work, we move on to a different drug. There aren't too many studies on lenalidomide for this type of lymphoma yet -- it was approved by the FDA 3 years ago for multiple myeloma (a different type of blood cancer), but it is starting to be used off-label for lymphoma as well. The few studies I could find were done on elderly patients, so we really don't have any good information on long term results for younger people. Andrew will be a sort of test case I suppose. This is when I think being at Sloan-Kettering will really pay off -- if we have a chance to beat this, it will be because we are here, where they have experience with the most difficult cancers, and access and knowledge of the newest available therapies. Dr. Z's body language was noticeably changed yesterday -- he was commanding and forceful because he had unraveled the mystery of diagnosis, and can now do what he is renowned for -- applying novel treatments.
The best part is that Andrew gets to be at home for treatment, not in the hospital. No IV's, terrible roommates, bad food, etc. We can celebrate Thanksgiving and Christmas with the boys in a normal fashion. He will have many of the same side effects as chemo -- low blood counts, possible transfusions, fatigue, nausea, etc., but we can deal with it in the comfort of our own house. This is huge for us.
We don't really ask Dr. Z about prognosis ever -- Andrew feels like that's pretty useless info because it can so often be wrong, and is calculated using factors that may not apply to each individual. You just have to take each development and each day as it comes, and make decisions based on your individual results. He's a living example of this -- it's amazing that a year later he's still alive and feeling so well, considering how terribly sick he was last year. But he's like a Timex, that guy, he takes a licking, keeps on ticking. He's been through everything and more, and he just keeps going and keeps fighting.
I receive daily lymphoma news alerts through Google, and I'm always stunned by how many people are being diagnosed with lymphoma every day -- children, teenagers, adults -- sports figures, newscasters, politicans, musicians, actors, moms, dads, school children. All of these people will most likely need a lot of blood products and many of them will need bone marrow transplants during treatment. The Thanksgiving and Christmas/Holiday season is a great time to donate blood through your local Red Cross or join the national bone marrow registry: http://marrow.org/Home.aspx
Give the gift of life!
xo
L
Friday, October 19, 2012
quick update
Andrew had his liver biopsy this past Tuesday. Before he was wheeled in we spoke to the doctor about what had happened during the last biopsy. He told us that non-diagnostics only happen in 5 percent of all biopsies. So we were just in that lucky 5, I guess. Anyhoo ... the biopsy went smoothly, and after it was done the doctor told me that the samples were "definitely diagnostic". So, I'm holding him to that promise.
Andrew has been having a bit of a rough time after this one. The liver area is sore, and he's having a lot of nausea and trouble eating. I guess this is why they don't want to go poking around in there if they don't have to. But there hasn't been any blood or sharp pain to indicate internal bleeding, so that's a blessing. We haven't heard yet from Dr. Z's office about when to come in for the results -- about a week, I would think.
We got to have dinner with our old friend John Fisher the other night. We haven't seen him since Chuck's wedding more than 2 years ago. We had a great time laughing and catching up, and cancer didn't even come up until the very end of the evening, so that was superb!
Andrew has been having a bit of a rough time after this one. The liver area is sore, and he's having a lot of nausea and trouble eating. I guess this is why they don't want to go poking around in there if they don't have to. But there hasn't been any blood or sharp pain to indicate internal bleeding, so that's a blessing. We haven't heard yet from Dr. Z's office about when to come in for the results -- about a week, I would think.
We got to have dinner with our old friend John Fisher the other night. We haven't seen him since Chuck's wedding more than 2 years ago. We had a great time laughing and catching up, and cancer didn't even come up until the very end of the evening, so that was superb!
Friday, October 12, 2012
life on the treadmill
I almost didn't know how I was going to write this post, mainly because I didn't think anyone would believe it! We went to MSK yesterday for the results of the needle biopsy. We were sort of dreading it, and tried to think of the ways it could go:
1) Dr. Z says "here are some brochures for my 5 favorite mortuaries" (Andrew's joke)
2) it's "xyz" lymphoma, and we're admitting you today for fabulous new chemo cocktail
3) it's some weird infection, here's an antibiotic, and we'll see you next month for your transplant.
But we never, ever, EVER seem to be able to predict correctly. Instead, we were told -- the sample is non-diagnostic. What?
The surgeon extracted enough samples, and some atypical cells were seen in some of the samples but not in others. This means that they cannot conclusively say if they are cancerous or not. Which means ... wait for it ... ANOTHER BIOPSY! This time of the liver! You're kidding. You're kidding, right?! So the 96 hour chemo infusion was a waste, the following PET scan was a waste, and the CT assisted biopsy was a waste. It's almost too much. It's like a bad soap opera that you would turn off, because it's just too far fetched. But this is what it is.
So, now they want to do a PET assisted needle biopsy of the liver. It's impossible to see any liver mass on the CT scan, but you can see it light up on the PET scan. They will put Andrew in the PET and take some samples from his liver. They could have done the liver to begin with, it seems, and it would have been more accurate, but it has more risks. The liver bleeds when you start sticking it with needles, and Andrew doesn't have such great platelet function these days. But his counts are much better now that he's a month out of chemo, so hopefully everything will be fine.
Of course all of this means more radiation, and more delay on necessary transplant treatment as my husband continues to be used as a human science experiment. And I'm beginning to believe that they will never be able to come up with a diagnosis. But you can't refuse any of it -- not if you want to live.
1) Dr. Z says "here are some brochures for my 5 favorite mortuaries" (Andrew's joke)
2) it's "xyz" lymphoma, and we're admitting you today for fabulous new chemo cocktail
3) it's some weird infection, here's an antibiotic, and we'll see you next month for your transplant.
But we never, ever, EVER seem to be able to predict correctly. Instead, we were told -- the sample is non-diagnostic. What?
The surgeon extracted enough samples, and some atypical cells were seen in some of the samples but not in others. This means that they cannot conclusively say if they are cancerous or not. Which means ... wait for it ... ANOTHER BIOPSY! This time of the liver! You're kidding. You're kidding, right?! So the 96 hour chemo infusion was a waste, the following PET scan was a waste, and the CT assisted biopsy was a waste. It's almost too much. It's like a bad soap opera that you would turn off, because it's just too far fetched. But this is what it is.
So, now they want to do a PET assisted needle biopsy of the liver. It's impossible to see any liver mass on the CT scan, but you can see it light up on the PET scan. They will put Andrew in the PET and take some samples from his liver. They could have done the liver to begin with, it seems, and it would have been more accurate, but it has more risks. The liver bleeds when you start sticking it with needles, and Andrew doesn't have such great platelet function these days. But his counts are much better now that he's a month out of chemo, so hopefully everything will be fine.
Of course all of this means more radiation, and more delay on necessary transplant treatment as my husband continues to be used as a human science experiment. And I'm beginning to believe that they will never be able to come up with a diagnosis. But you can't refuse any of it -- not if you want to live.
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