Yesterday was not our favorite day. We know now not to build up false hopes, but we were feeling pretty confident about the EPOCH. Andrew has been feeling good (despite the low blood counts) and we were so encouraged by the post-ICE scan. I anticipated that Dr. Z would send us back for another round, but that it would be slowly working. We were totally unprepared for "no change". No Change! After a 96 hour infusion! Dr. Z. put the 2 PET scans up side by side and they were indistinguishable.
Before the EPOCH, DR. Z had discussed 2 theories -- that these are 2 different cancers, or that it's 1 cancer that needs a good, long chemo bath. After consulting with the tumor board, Dr. Z. said "over 50 years of combined experience makes us believe that it's one cancer", so let's give it a bath. Well, it appears that they made the wrong guess, and now we move to Door #2 -- 2 separate cancers. Exhale.
I understand that doctors are not infallible gods. I do. I understand that this is a tricky cancer. But 4 different institutions, scores of doctors and pathologists, and no one can figure this out after an entire year? Meanwhile, Andrew has had to endure round after round of chemo, six radiation-filled scans (with more on the horizon), not to mention the countless transfusions and drugs. Sorry to vent, but can somebody please unravel this soon! As Dr. W. said to Andrew the other day -- "at this point there's no protocol -- you just try everything you have." Exhale.
The wrinkle in all of this is that Dr. Liu, way back at Westchester Med, last January, said that he suspected it was 2 cancers. I believe his exact words were "it's almost like you have 2 different cancers." ! But we were forced by the insurance company to leave Westchester, and I'm trying not to make myself crazy by imagining all the months of treatments Andrew might have been saved had we been allowed to continue there. Or if I had been tough enough to get him into Sloan at the very beginning. But he was so desperately sick then and we were terrified. Dr. Liu saved his life by making a series of really aggressive treatment decisions. After being informed that Westchester was no longer in the picture, we had only a few days to figure out how to keep him on his treatment schedule. During Christmas week! Breathe, breathe. Anyway, that was then, this is now.
So. Dr. Z has ordered a needle biopsy of a node in his neck sometime this week-- thank god it's not another surgical biopsy -- I think Andrew would have thrown in the towel right there. They will test it a thousand different ways and hopefully, someone will know what it is. And maybe they'll know how to treat it.
And that's all for now.
Friday, September 28, 2012
Monday, September 24, 2012
Recovering
Andrew has spent the last week recovering from the EPOCH infusion. He's crashing now, but still seems ok -- he's fatigued and nauseous, but generally hanging in there. EPOCH contains some of the drugs that we haven't seen since our hyper-CVAD days (back in Westchester and AMC), so he's unfortunately revisiting some side effects that we had forgotten all about -- hello, vincristine!
We have an appointment at MSK on Thursday for a bright and early PET scan followed by a visit with Dr. Z. Usually we don't get the PET results until several days after, but it seems they're moving things along quickly. So that's great -- let's go! I'm assuming Dr. Z will give him another round of EPOCH, unless by some miracle it's in remission and we can move ahead to the transplant. I hate to say too much these days -- Andrew and I were laughing that everything I write on the blog lately turns out to be wrong! Dr. Z keeps changing his approach, and the plan is never the same from week to week. I'm not complaining -- I know these are the very best doctors and I love that decisions stay fluid depending on input from tumor board, etc. One of the things that frustrated us at Albany was the stone-clad protocol. They decide what you have and "this is the protocol" -- they don't waver. We asked a few times about additional approaches (things we knew about from research), but the answer was always we don't do that, we do this -- end of story. Things seem very different at MSK -- with a very problematic cancer like Andrew's, we've learned that there really is no protocol. You have to try things, because they really don't know what will work -- they certainly know what to try, but it makes you realize how far we have yet to go with cancer research. They really don't know why many cancers transform and become resistant to drugs -- they're very honest about not knowing, which I appreciate.
So, I was under the impression that Andrew would not get a transplant unless they get the cancer in remission, but it seems like that's not the whole truth -- it's looking like he will get the transplant, but there are much better odds of success if it's in remission. What you don't want is for any pesky cancer cells to overpower your brand new donor cells. So this is why Andrew's on the endless chemo loop. I think they must feel that he's young and can endure more than your average cancer patient.
I'm sure it seems like there's a lot of guessing going on, and that the doctor could easily clear up all of these misunderstandings. It's hard to describe how all of this has been an evolution -- as they've tried to get a good diagnosis (I'm still not sure if we've ever gotten a definitive diagnosis), and the longer we're in chemo, the question and answer sessions get fewer, because we're all only focusing on one thing at the moment -- just getting the cancer in remission -- so we don't talk too far ahead, we don't micromanage anymore. As I told a friend the other night, now we say "tell us when to show up" and that's it. Andrew's feeling good -- hopefully, fall is all about a successful transplant, and we can soon return to our lives.
xo
L
We have an appointment at MSK on Thursday for a bright and early PET scan followed by a visit with Dr. Z. Usually we don't get the PET results until several days after, but it seems they're moving things along quickly. So that's great -- let's go! I'm assuming Dr. Z will give him another round of EPOCH, unless by some miracle it's in remission and we can move ahead to the transplant. I hate to say too much these days -- Andrew and I were laughing that everything I write on the blog lately turns out to be wrong! Dr. Z keeps changing his approach, and the plan is never the same from week to week. I'm not complaining -- I know these are the very best doctors and I love that decisions stay fluid depending on input from tumor board, etc. One of the things that frustrated us at Albany was the stone-clad protocol. They decide what you have and "this is the protocol" -- they don't waver. We asked a few times about additional approaches (things we knew about from research), but the answer was always we don't do that, we do this -- end of story. Things seem very different at MSK -- with a very problematic cancer like Andrew's, we've learned that there really is no protocol. You have to try things, because they really don't know what will work -- they certainly know what to try, but it makes you realize how far we have yet to go with cancer research. They really don't know why many cancers transform and become resistant to drugs -- they're very honest about not knowing, which I appreciate.
So, I was under the impression that Andrew would not get a transplant unless they get the cancer in remission, but it seems like that's not the whole truth -- it's looking like he will get the transplant, but there are much better odds of success if it's in remission. What you don't want is for any pesky cancer cells to overpower your brand new donor cells. So this is why Andrew's on the endless chemo loop. I think they must feel that he's young and can endure more than your average cancer patient.
I'm sure it seems like there's a lot of guessing going on, and that the doctor could easily clear up all of these misunderstandings. It's hard to describe how all of this has been an evolution -- as they've tried to get a good diagnosis (I'm still not sure if we've ever gotten a definitive diagnosis), and the longer we're in chemo, the question and answer sessions get fewer, because we're all only focusing on one thing at the moment -- just getting the cancer in remission -- so we don't talk too far ahead, we don't micromanage anymore. As I told a friend the other night, now we say "tell us when to show up" and that's it. Andrew's feeling good -- hopefully, fall is all about a successful transplant, and we can soon return to our lives.
xo
L
Tuesday, September 11, 2012
The EPOCH epoch
Andrew has been recovering slowly from the 2nd round of ICE. He needed several transfusions of platelets and one transfusion of RBC's, which were handled by Dr. W here, near home. On Friday, his platelets were still very low, and I knew that meant Monday's treatment would be delayed. Monday, I talked to Dr. Z's nurse at MSK, and she told us that Dr. Z wanted to see Andrew today for a bone marrow biopsy. Andrew was not happy, to put it mildly -- bone marrow biopsies are his least favorite procedure!! But he got on the train like a good cancer patient and headed into the city. I was unable to join him as the short notice made it impossible with the kids' schedules. Dr. Z ended up deciding against the biopsy (hooray!), but told Andrew he would be admitted immediately to start chemo -- what?! His platelets are still low (though much better), but Dr. Z said he didn't want to wait any longer and give the cancer a chance to grow again.
"We've been talking about you a lot" he said. Gulp. Much better to be the patient they don't need to talk about a lot, isn't it? The tumor board has been poring over his case and his very stubborn cancer. They initially wanted to do the bone marrow biopsy to see if they were dealing with 2 very different types of cancer, but eventually decided that it was most likely not so. Instead of continuing the ICE or the IVAC regimens discussed earlier, the group and Dr. Z decided to give Andrew a 96-hour continuous infusion called EPOCH. This is a cocktail often used for very stubborn cancers that have developed chemo resistance. Studies have shown that a continuous infusion at low concentrations can sometimes be more effective than brief, high dose infusions for chemo resistant cancers. The plan is to get the 4-day EPOCH (that just sounds so weird -- a 4-day epoch), get another PET, and if necessary do another 4-day EPOCH cycle.
Has anyone ever had as much chemo as my husband?! Lordy. Hopefully, the EPOCH does the trick and we move onto transplant!
"We've been talking about you a lot" he said. Gulp. Much better to be the patient they don't need to talk about a lot, isn't it? The tumor board has been poring over his case and his very stubborn cancer. They initially wanted to do the bone marrow biopsy to see if they were dealing with 2 very different types of cancer, but eventually decided that it was most likely not so. Instead of continuing the ICE or the IVAC regimens discussed earlier, the group and Dr. Z decided to give Andrew a 96-hour continuous infusion called EPOCH. This is a cocktail often used for very stubborn cancers that have developed chemo resistance. Studies have shown that a continuous infusion at low concentrations can sometimes be more effective than brief, high dose infusions for chemo resistant cancers. The plan is to get the 4-day EPOCH (that just sounds so weird -- a 4-day epoch), get another PET, and if necessary do another 4-day EPOCH cycle.
Has anyone ever had as much chemo as my husband?! Lordy. Hopefully, the EPOCH does the trick and we move onto transplant!
Tuesday, September 4, 2012
still in the game
So today's appointment was a mixed bag. Dr. Z showed us side by side views of Andrew's most recent PET scan and the PET from early July. The cancer has had been significantly reduced -- actually we were kind of shocked to see how much cancer was still present in July, as we had never seen that particular scan. There really has been a huge improvement between then and now, so that's great news -- however, there is still cancer present which is certainly not ideal. Things seem to be heading in the right direction, but it's being very stubborn, and rather than do a 3rd round of ICE, Dr. Z seems to be leaning towards giving Andrew a round of chemo called IVAC. The IVAC contains some drugs that Andrew's lymphoma hasn't seen yet, and has "a reasonable chance" of getting rid of the remaining disease. Dr. Z did say that he wants to discuss the options with his colleagues at tumor board before making a final decision to continue with ICE or move directly to IVAC. Andrew's blood counts are still recovering from the last round, so he'll be getting a transfusion of red cells tomorrow at Benedictine, with chemo to begin next Monday. It's obvious Dr. Z wants to move quickly back into chemo before the cancer has any further opportunity to grow. The IVAC would be a 5 day course in the hospital, followed by another PET scan 2 weeks later.
So that's the situation. We're certainly hopeful that the next round will knock out the little bits that are left and get Andrew into remission and on to the transplant.
xo
L
So that's the situation. We're certainly hopeful that the next round will knock out the little bits that are left and get Andrew into remission and on to the transplant.
xo
L
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