This is something that hopefully everybody with this diagnosis -- or anybody looking at their blood on a daily basis for some other reason, God forbid -- can benefit from.
I went to the infusion center today to get my 24-hour chemo pump changed. Interestingly, looks like I get the Adriamycin for four days straight while they swap out the Platinum, Cyclophosphomide and Etoposide over that time period.
Anyhow...
I got my labs from YESTERDAY back today (I prefer the 7th floor way of doing things, but they get quicker response from the lab there) and my white counts fell from 6.8 to 4.4. My Hemoglobin fell from 14.2 to 12.2 (I told you I'd be back to anemia quickly!) and my platelets rose from 170 to 180. All expected.
By my Phosphorus was 1.5 (normal is 2.0 to 4.0). And my Uric acid, which the nurse in BB's clinic had flagged as high on 7/8 when it was 8.2, was now 8.7. BB didn't think anything of it being 8.2 but I wanted to at least ask my APN about it.
So I was prescribed a bag of Rasburicase administered IV while I waited, and given an infuser of phosphorus for the road.
While the Rasburicase was dripping in and my phosphorus infuser was hooked up, I got TODAY's labs back.
Uric acid fell to 6.2, well within normal limits, and Phosphorus was at 2.5, also well within normal limits. White count up to 11 (still normal, but what a change!) and hemoglobin at 12.2. Sigh. 14 felt good while it lasted -- for about 18 hours, it seems.
I asked the APN if we should disconnect the phosphorus (the Rasburicase was already fully infused by this time) and she said that the chemo will push uric acid up, and bring phosphorus down, so we were ending up taking prophylactic measures.
That's fine by me. But it does highlight how these numbers can pop up and down and you really need to look at them in context / over time to make sure you aren't overreacting one way or another!
Generally speaking I am feeling fine, other than being exhausted from no sleep last night, and the general dex bloating that has set in (five pounds of weight gain overnight). I also got the hiccups something fierce today, which happened when I was on these drugs before, so I took a couple of Baclofen and they seem to have subsided.
Lastly, for the benefit of my two brothers who read this and anybody else who is a fan of very, very old movies...I looked to my left in the infusion center and there is a woman, probably in her late 50s, who is completely bald and who must have felt cold (despite it being 90 degrees here now) and had draped blankets over her lap and pulled another tightly over her head like a shroud. I had to do a double take but she looked just like Eduardo Gianelli (the bad guy) in the 1939 Gunda Din.
Dinner with BB's assistant Bonnie tonight, then lunch with fellow MM travellers Phil and Cassie tomorrow, and then the arrival of my friend Matt from DC for what should be the last relief mission for Jill, as she goes home for the weekend to see the kiddies. Lots to look forward to -- though perhaps nothing more fervently than the result of tomorrow's M-spike lab, which should be available on Sunday or Monday.
Be well, everyone!
Wednesday, July 15, 2009
A glimpse of normalcy and other observations
Let me begin with observation #1, which I've made before. Ambien has nights were it works brilliantly (the night before this past one I got 8 solid hours despite having to sleep through a two hour long thunderstorm which was the loudest my wife, a veteran of 13 years in Houston, has ever heard). And there are nights when Ambien sucks, like the evening that I am just ending, where I slept for 20 minutes and finally gave up at 5AM.
I think the combination of the chemo pump, 25+ pills and the mind-crippling fear of crumbling to a constipated fetal position on the floor must have something to do with it. I am taking both Senna and Docusate. One is a softener, the other a laxative. I will keep with these this time and hope that nothing more exotic needs to be ingested to achieve the desired normalcy.
So...the glimpse of normalcy. When I went to the lab to be connected to the bag for day 1 of 4, and get a host of other things (Velcade injection #1 of 4, PAINFUL Lovenox shot #1 of 6, antinausea agents, etc.), they gave me my labs from yesterday. For the first time since we started looking closely at these things back in February, I was not anemic. I was still at the very low end of the normal range (14-19) on Hemoglobin but I was 14.2. Now, this will be clobbered by the chemo again, but I was asking Dr. SH in Beverly Hills a few weeks ago, when it was 12.2 or so, if it was ever going to be normal again and he said "eventually, once all this chemo stops, it will have a chance to recover." So it ultimately recovered in three more weeks. One of the concerns about BB's program, voiced by KA, was that there is so much marrow-mangling being done that I might not be able to sustain normal counts when it's all said and done. BB of course said this was no problem and that they had never seen it happen, which is what KA said he would say. "But I", added KA, "am a just a quiet little voice on the sidelines whispering 'maybe it might be a problem.'"
KA and BB have a lot of mutual respect for each other and have known each other for a long time, so this was said without any professional jealousy or sniping or anything like that. In fact KA is well aware of the success of the program down here and agreed with my basic logic to pursue it.
ANYHOW...gosh what was supposed to be a quick update is getting long...so my Hemoglobin was more or less normal, and my IgG, IgA and IgM (all immune system markers which are intentionally suppressed by the medication) have returned to normal levels. IgG contains both GOOD immunoglobin from my normally functioning plasma cells as well as tainted immunoglobin from my evil, corrupt Myeloma cells. So we have brought this down from what seems, now, like an impossibly high level of 16000 to around 580, but normal is 700-1400. So getting to 800 on this last lab, particularly with a bone marrow that has no cancer in it, is good. Lastly, RDW, which measures the variability in size of red blood cells and is higher than normal in cancer patients, has almost fallen to normal levels. All good stuff.
Of course this all goes out the window now, since I started taking poison yesterday morning. But it was good to see normalcy in my blood counts for once!
All the markers are good except for two liver markers -- one of which has little-to-no correspondence to alcohol, and one of which does so it could have been elevated somewhat by the previous night's meal with BB and his wife. I had forgotten that I had a gin and tonic with the good doctor after our meal (after all, I don't want to beat cancer only to be taken down with scurvy or malaria). Evidently hematologists during the British Raj didn't look to closely at liver enzymes. At any rate, one of the three booze-related enzymes was elevated (the other two were normal) and this could be a result of the chemo, the velcade, the Fluconazole / anti fungal med, or anything else, really. The other elevated enzyme, LH, is more problematic as that is a surrogate for cancer activity. I don't want to be concerned about any single test, as my liver is still processing dead cancer and getting rid of it through the body and will continue to do so during the consolidation phase, and this aspect of my biology results in a higher LDH. But it is something that I want to keep my eye on. For the budding hematologists in the crowd, it was 280 and really needs to be below 190 to not be an unfavorable indicator of long-term prognosis.
On that topic:
* Things I have going for me according to the statistical analysis: I'm under 65, I had and have preserved Albumin (good blood protein that gets crowded out by evil blood protein when immunoglobins get out of control), low Beta-2 Microglobin (a tumor marker), low CRP (a surrogate for cancer, I found out just yesterday, in addition to general inflammation), low creatinine (meaning good kidney function), low LDH at start of therapy, no severe cytogenic abnormalities (i.e. 4;14 translocation, etc.), low risk defined by Gene Expression Profiling (GEP), and hyperdiploid subtype (this means my cells has too MANY chromosomes, rather than too FEW, which would then be hypodiploid.)
* Things I don't have going for me: only one...in addition to being in the hyperdiploid subtype, I am in the more dangerous proliferation subtype. This means that the cancer is prone to proliferation (there's a shocker to those of you with zero inductive reasoning skills). It grows at a fast rate. This we know both from the visceral predictions of Dr. SH way back when ("the fact that you got this when you're young means your system isn't good at getting rid of it, and I expect it will progress fairly quickly") and it has been borne out by the rapid growth of my protein and M-spike, which went from 8.0 and 4.4 and the time of diagnosis to highs of 12.2 and 8.0 in four months. I of course asked BB about the impact of being in the PR subgroup and he said that being low risk overcomes this. However having studied the statistical model I'm not certain that's true. It does have a very low "P-value" (.001 for those following along with a statistics handbook) which means that the certainty of its impact on survival rate is very low. For example, other factors are typically .15, .35, etc meaning they have a 15% of 35% likelihood of impacting the survival rate. The impact itself on survival rate for those which have the PR subtype -- including high risk patients (and here the data is not parsed by high-risk versus low-risk) -- is not good, but the likelihood of that impact is anything but certain.
* BB pointed out that achieving CR early is important, however he also pointed out that when someone has smoldering or indolent MM, or MGUS (which mine could have been for a long time for all we know) it doesn't matter. We must remember my excellent primary care physician hadn't seen me for 18 months. And before that, the only marker he would have been able to look at would be total protein. As my MM was coexisting with my regular immune system (thus permitting normal blood counts), and my albumin was preserved, I could have had a small M-spike for five years without anybody noticing. As SH said in my first meeting with him "we have no idea how long you've had this."
All of this devolves into a statement and a graph. The statement, which I reiterated before, is that I MUST REACH COMPLETE REMISSION. I would like to specifically acknowledge Lori for her very positive comment in my last post, and again I want to thank all of you for reading, writing, and expressing encouragement through comments and emails. I still think the best thing I can bring to this whole process is a positive attitude and any time I feel that flagging, you are always there to provide a bottomless wellspring from which I can replenish it. I really love and appreciate you all.
The graph itself is something I kinda wish I could post here but it is (a) difficult to reproduce, and (b) not yet published in Blood magazine so I don't want to run afoul of BB's work here. Suffice to say, that data runs on TT3 for five years from enrollment now. Remember, if the disease is gone for six years, it's very unlikely to EVER return, without meds, according to BB's data and the history of childhook leukemia total therapy upon which his work is based. So with this in mind, understand:
* Of patients achieving and sustaining remission, 100% are still alive after five years. To put this in contrast, the American Cancer Society published in the last month five year survival statistics of 34%.
* Of patients NOT achieving complete remission, 80% are still alive after five years. That 20% is too high for my liking.
* Patients that achieve and LOSE complete remission (the majority of high-risk patients according to GEP, unfortunately) have only a 50% survival after five years. However, that's still better than 34%.
What is complete remission? What is not complete remission? This brings me to the last observation of what was supposed to be a brief update but which has turned into a monster post.
I'm working from a combination of work from BB and from BD (one of my early consults and the person behind the original staging system for the disease, who was a very nice guy, by the way).
Stringent Complete Remission (sCR) -- CR as defined below plus normal free light chains (I have these), absence of clonal (M-spike) clones in bone marrow under immunofixation and immunofluorescence (I have this, I *THINK* -- not sure if BB uses sCR as a definition as I've only seen it in BD's work)
CR -- No M-spike under immunofixation or serum eletcrophoresis (not there yet), disappearance of any soft tissue plamacytomas (I think I am there) and less than 5% plasma cells in bone marrow (I am 2-3% plasma cells in core bone marrow, so I am there).
nCR -- As CR but with no M-spike under serum electrophoresis (not there yet) but presence under immunofixation.
Very Good Partial Remission -- serum and urine M-protein detectable by immunofixation but not on electrophoresis (not there yet) OR 90% or greater reduction in serum M-protein plus urine M-protein level less than 100mg per 24 hr. I am here now.
Beyond that we get to Partial Response and Progressive Disease, which aren't a large portion of patients, and of course do drag down survival statistics of those unable to achieve CR.
So we know what I need to do. Get rid of that damn M-spike forever. Which is why I've got this bag of four different kinds of mustard gas hooked up to me. And I know it is working, because my taste buds are dying off. I can't taste any subtlety in food, and everything is starting to become metallic. This sucks from a culinary standpoint, but it means rapidly-dividing cells are being killed, and that means myeloma cells are being killed, and that means there will be fewer around to make protein, and the whole shebang should contribute to a very inhospitable environment in my bone marrow for these bastards, so we should consolidate our gains there (hence consolidation treatment, again for the inductive reasoning impaired, or those who hadn't noticed that it had been a couple of post since I used the formal term Consolidation Therapy for this last round).
Almost done here, except for a couple of more BB answers and a funny little quote.
* I had mentioned it's impossible to tell how much of my remission is caused by which phase of my treatment because they are all acting synergistically. Most other protocols wouldn't do the second step of the protocol until the first step is done. But during this intermission, the cancer has time to regroup, even with some modest bridging therapy. BB's approach is always predicated on attacking the cancer relentlessly and staying on top of it until it is gone, gone, gone (hopefully forever). So that's why he doesn't want to take stock mid-protocol. The best way for this not to matter is for me to zero-out the remaining M-protein during this first cycle of consolidation, so that's what we'll shoot for.
* I had mentioned that other doctors would put me on Thal / Dex or Vel / Thal / Dex up front to achieve remission, and then use the transplants to consolidate gains once remission is achieved. BB's protocol is different in two ways: he spends less time in induction up front (although he uses many more drugs), and uses the transplants as active therapy in conjuction with velcade, thal and dex which he believes have synergistic elements with the high-dose melphalan, especially in the "lite" protocol where they have four days to help each other fight the Myeloma. By lingering in induction, it gives the MM cells time to develop drug resistance to Thal / Dex and Velcade. If one is on that cocktail for 6-9 months, that's a long time to develop resistance before relying upon them not just for synergistic benefits during the transplants, but also for bridging and for consolidation treatment.
That should do it except for the quote. It's another glimpse into why I like him so much. When we were at dinner with him and his wife, his wife suggested that we try a place called Jimmy's Serious Sandwiches. I love a good sandwich for lunch but as I'll be neutropenic in a few days, I asked the doctor if it was okay for me to eat. He said (direct quote to reflect his humor, directness and irreverance, with apologies to any offended among you): "Awwww...that stuff is all bullshit. It's bullshit! Half the people who get sick probably get it from following those rules too closely. Eat what you want."
I'm not sure I'll go quite that far -- I've done quite well following the rules -- but it does mean on days when I'm marginal and am really craving a type of food, I will go for it as long as it's not completely filthy.
Okay...that's it, I promise. There you have it, faithful readers. Be well, and more news as it becomes available.
I think the combination of the chemo pump, 25+ pills and the mind-crippling fear of crumbling to a constipated fetal position on the floor must have something to do with it. I am taking both Senna and Docusate. One is a softener, the other a laxative. I will keep with these this time and hope that nothing more exotic needs to be ingested to achieve the desired normalcy.
So...the glimpse of normalcy. When I went to the lab to be connected to the bag for day 1 of 4, and get a host of other things (Velcade injection #1 of 4, PAINFUL Lovenox shot #1 of 6, antinausea agents, etc.), they gave me my labs from yesterday. For the first time since we started looking closely at these things back in February, I was not anemic. I was still at the very low end of the normal range (14-19) on Hemoglobin but I was 14.2. Now, this will be clobbered by the chemo again, but I was asking Dr. SH in Beverly Hills a few weeks ago, when it was 12.2 or so, if it was ever going to be normal again and he said "eventually, once all this chemo stops, it will have a chance to recover." So it ultimately recovered in three more weeks. One of the concerns about BB's program, voiced by KA, was that there is so much marrow-mangling being done that I might not be able to sustain normal counts when it's all said and done. BB of course said this was no problem and that they had never seen it happen, which is what KA said he would say. "But I", added KA, "am a just a quiet little voice on the sidelines whispering 'maybe it might be a problem.'"
KA and BB have a lot of mutual respect for each other and have known each other for a long time, so this was said without any professional jealousy or sniping or anything like that. In fact KA is well aware of the success of the program down here and agreed with my basic logic to pursue it.
ANYHOW...gosh what was supposed to be a quick update is getting long...so my Hemoglobin was more or less normal, and my IgG, IgA and IgM (all immune system markers which are intentionally suppressed by the medication) have returned to normal levels. IgG contains both GOOD immunoglobin from my normally functioning plasma cells as well as tainted immunoglobin from my evil, corrupt Myeloma cells. So we have brought this down from what seems, now, like an impossibly high level of 16000 to around 580, but normal is 700-1400. So getting to 800 on this last lab, particularly with a bone marrow that has no cancer in it, is good. Lastly, RDW, which measures the variability in size of red blood cells and is higher than normal in cancer patients, has almost fallen to normal levels. All good stuff.
Of course this all goes out the window now, since I started taking poison yesterday morning. But it was good to see normalcy in my blood counts for once!
All the markers are good except for two liver markers -- one of which has little-to-no correspondence to alcohol, and one of which does so it could have been elevated somewhat by the previous night's meal with BB and his wife. I had forgotten that I had a gin and tonic with the good doctor after our meal (after all, I don't want to beat cancer only to be taken down with scurvy or malaria). Evidently hematologists during the British Raj didn't look to closely at liver enzymes. At any rate, one of the three booze-related enzymes was elevated (the other two were normal) and this could be a result of the chemo, the velcade, the Fluconazole / anti fungal med, or anything else, really. The other elevated enzyme, LH, is more problematic as that is a surrogate for cancer activity. I don't want to be concerned about any single test, as my liver is still processing dead cancer and getting rid of it through the body and will continue to do so during the consolidation phase, and this aspect of my biology results in a higher LDH. But it is something that I want to keep my eye on. For the budding hematologists in the crowd, it was 280 and really needs to be below 190 to not be an unfavorable indicator of long-term prognosis.
On that topic:
* Things I have going for me according to the statistical analysis: I'm under 65, I had and have preserved Albumin (good blood protein that gets crowded out by evil blood protein when immunoglobins get out of control), low Beta-2 Microglobin (a tumor marker), low CRP (a surrogate for cancer, I found out just yesterday, in addition to general inflammation), low creatinine (meaning good kidney function), low LDH at start of therapy, no severe cytogenic abnormalities (i.e. 4;14 translocation, etc.), low risk defined by Gene Expression Profiling (GEP), and hyperdiploid subtype (this means my cells has too MANY chromosomes, rather than too FEW, which would then be hypodiploid.)
* Things I don't have going for me: only one...in addition to being in the hyperdiploid subtype, I am in the more dangerous proliferation subtype. This means that the cancer is prone to proliferation (there's a shocker to those of you with zero inductive reasoning skills). It grows at a fast rate. This we know both from the visceral predictions of Dr. SH way back when ("the fact that you got this when you're young means your system isn't good at getting rid of it, and I expect it will progress fairly quickly") and it has been borne out by the rapid growth of my protein and M-spike, which went from 8.0 and 4.4 and the time of diagnosis to highs of 12.2 and 8.0 in four months. I of course asked BB about the impact of being in the PR subgroup and he said that being low risk overcomes this. However having studied the statistical model I'm not certain that's true. It does have a very low "P-value" (.001 for those following along with a statistics handbook) which means that the certainty of its impact on survival rate is very low. For example, other factors are typically .15, .35, etc meaning they have a 15% of 35% likelihood of impacting the survival rate. The impact itself on survival rate for those which have the PR subtype -- including high risk patients (and here the data is not parsed by high-risk versus low-risk) -- is not good, but the likelihood of that impact is anything but certain.
* BB pointed out that achieving CR early is important, however he also pointed out that when someone has smoldering or indolent MM, or MGUS (which mine could have been for a long time for all we know) it doesn't matter. We must remember my excellent primary care physician hadn't seen me for 18 months. And before that, the only marker he would have been able to look at would be total protein. As my MM was coexisting with my regular immune system (thus permitting normal blood counts), and my albumin was preserved, I could have had a small M-spike for five years without anybody noticing. As SH said in my first meeting with him "we have no idea how long you've had this."
All of this devolves into a statement and a graph. The statement, which I reiterated before, is that I MUST REACH COMPLETE REMISSION. I would like to specifically acknowledge Lori for her very positive comment in my last post, and again I want to thank all of you for reading, writing, and expressing encouragement through comments and emails. I still think the best thing I can bring to this whole process is a positive attitude and any time I feel that flagging, you are always there to provide a bottomless wellspring from which I can replenish it. I really love and appreciate you all.
The graph itself is something I kinda wish I could post here but it is (a) difficult to reproduce, and (b) not yet published in Blood magazine so I don't want to run afoul of BB's work here. Suffice to say, that data runs on TT3 for five years from enrollment now. Remember, if the disease is gone for six years, it's very unlikely to EVER return, without meds, according to BB's data and the history of childhook leukemia total therapy upon which his work is based. So with this in mind, understand:
* Of patients achieving and sustaining remission, 100% are still alive after five years. To put this in contrast, the American Cancer Society published in the last month five year survival statistics of 34%.
* Of patients NOT achieving complete remission, 80% are still alive after five years. That 20% is too high for my liking.
* Patients that achieve and LOSE complete remission (the majority of high-risk patients according to GEP, unfortunately) have only a 50% survival after five years. However, that's still better than 34%.
What is complete remission? What is not complete remission? This brings me to the last observation of what was supposed to be a brief update but which has turned into a monster post.
I'm working from a combination of work from BB and from BD (one of my early consults and the person behind the original staging system for the disease, who was a very nice guy, by the way).
Stringent Complete Remission (sCR) -- CR as defined below plus normal free light chains (I have these), absence of clonal (M-spike) clones in bone marrow under immunofixation and immunofluorescence (I have this, I *THINK* -- not sure if BB uses sCR as a definition as I've only seen it in BD's work)
CR -- No M-spike under immunofixation or serum eletcrophoresis (not there yet), disappearance of any soft tissue plamacytomas (I think I am there) and less than 5% plasma cells in bone marrow (I am 2-3% plasma cells in core bone marrow, so I am there).
nCR -- As CR but with no M-spike under serum electrophoresis (not there yet) but presence under immunofixation.
Very Good Partial Remission -- serum and urine M-protein detectable by immunofixation but not on electrophoresis (not there yet) OR 90% or greater reduction in serum M-protein plus urine M-protein level less than 100mg per 24 hr. I am here now.
Beyond that we get to Partial Response and Progressive Disease, which aren't a large portion of patients, and of course do drag down survival statistics of those unable to achieve CR.
So we know what I need to do. Get rid of that damn M-spike forever. Which is why I've got this bag of four different kinds of mustard gas hooked up to me. And I know it is working, because my taste buds are dying off. I can't taste any subtlety in food, and everything is starting to become metallic. This sucks from a culinary standpoint, but it means rapidly-dividing cells are being killed, and that means myeloma cells are being killed, and that means there will be fewer around to make protein, and the whole shebang should contribute to a very inhospitable environment in my bone marrow for these bastards, so we should consolidate our gains there (hence consolidation treatment, again for the inductive reasoning impaired, or those who hadn't noticed that it had been a couple of post since I used the formal term Consolidation Therapy for this last round).
Almost done here, except for a couple of more BB answers and a funny little quote.
* I had mentioned it's impossible to tell how much of my remission is caused by which phase of my treatment because they are all acting synergistically. Most other protocols wouldn't do the second step of the protocol until the first step is done. But during this intermission, the cancer has time to regroup, even with some modest bridging therapy. BB's approach is always predicated on attacking the cancer relentlessly and staying on top of it until it is gone, gone, gone (hopefully forever). So that's why he doesn't want to take stock mid-protocol. The best way for this not to matter is for me to zero-out the remaining M-protein during this first cycle of consolidation, so that's what we'll shoot for.
* I had mentioned that other doctors would put me on Thal / Dex or Vel / Thal / Dex up front to achieve remission, and then use the transplants to consolidate gains once remission is achieved. BB's protocol is different in two ways: he spends less time in induction up front (although he uses many more drugs), and uses the transplants as active therapy in conjuction with velcade, thal and dex which he believes have synergistic elements with the high-dose melphalan, especially in the "lite" protocol where they have four days to help each other fight the Myeloma. By lingering in induction, it gives the MM cells time to develop drug resistance to Thal / Dex and Velcade. If one is on that cocktail for 6-9 months, that's a long time to develop resistance before relying upon them not just for synergistic benefits during the transplants, but also for bridging and for consolidation treatment.
That should do it except for the quote. It's another glimpse into why I like him so much. When we were at dinner with him and his wife, his wife suggested that we try a place called Jimmy's Serious Sandwiches. I love a good sandwich for lunch but as I'll be neutropenic in a few days, I asked the doctor if it was okay for me to eat. He said (direct quote to reflect his humor, directness and irreverance, with apologies to any offended among you): "Awwww...that stuff is all bullshit. It's bullshit! Half the people who get sick probably get it from following those rules too closely. Eat what you want."
I'm not sure I'll go quite that far -- I've done quite well following the rules -- but it does mean on days when I'm marginal and am really craving a type of food, I will go for it as long as it's not completely filthy.
Okay...that's it, I promise. There you have it, faithful readers. Be well, and more news as it becomes available.
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