Hi Multibilly
Please let us know how the Dr Berenson visit goes.
Thanks
John
Forums
Re: Allo General Questions
First off, let me state that I am still smoldering and I have thankfully not had to initiate any treatment protocols yet. But since my numbers are trending up, the writing appears to be on the wall that I will progress to multiple myeloma in the next year or two, unless my efforts with supplements and diet pay off. So, I am actively researching all the options out there and my statements are based on my discussions with folks and what I've read and researched, not personal experience. I've deliberately sought out specialists that run the entire spectrum on the subject to transplants. I'm not trying to advocate one line of treatment over another for folks on this forum, although after my own research and discussions, I've personally developed a tentative treatment philosophy that generally avoids transplants and instead views them as a salvage therapy. At the same time, I respect those folks out there have gone the transplant route, including the allo route.
With respect to chemo, QOL primarily means avoiding peripheral neuropathy. A least, this is what I personally worry the most about. I am seeking to avoid it at all costs given that my chief joy in life is hiking throughout the world and I expect to spend my retirement years doing this as well as restoring cars and building furniture. But you can also read through this forum and find all the issues folks have with Dex, etc. This includes fatigue, compromising cognitive and emotional function, insomnia, temporary or chronic pain due to the drugs, "chemo brain", sex issues, etc. The other personal QOL issue for me is potentially being tied to a specific hospital for ongoing treatments, should the treatments involve IV drugs. I'm therefore actively seeking a solution that would involve low dose treatments and ideally all in pill form or with at least a few weeks between sessions, which may or not be an option depending on what drugs I end up using. So, I admit that this latter goal just may not be realistic.
With respect to allos, these links cover the QOL risks of GVHD pretty well.
http://www.leukemiabmtprogram.org/patients_and_family/complications_side_effects/gvhd.html
http://www.ncbi.nlm.nih.gov/pubmed/20228854
With respect to autos, I think you already must know about QOL issues first hand.
Of course the biggest QOL issue is simply remaining alive, isn't it? I'm just not willing to entertain an allo given the lower overall survival rate compared to an ASCT and the added risks of GVHD on top of the chemo. Moreover, none of the docs I've talked to (including those at the transplants centers in Colorado) advocate them.
May I need to do an auto if something else pops up? Sure. In fact, if it turns out that I have Light Chain Deposition Disease (which I will find out next week whether I do or don't), an ASCT very well may end up being the route I take, but I will proceed very carefully if that is the case. May I need to seek an allo? Again, sure. But the circumstances under which I would consider one and for which the three multiple myeloma specialists I've met would recommend one are pretty limited.
Lastly, wrt to all of my comments, your situation with tandem autos may put a different spin on things medically. It very well could be that none of what is being stated on this thread is applicable to your situation. Only doctors or others that have had tandem transplants can answer that.
Hope this helps.
With respect to chemo, QOL primarily means avoiding peripheral neuropathy. A least, this is what I personally worry the most about. I am seeking to avoid it at all costs given that my chief joy in life is hiking throughout the world and I expect to spend my retirement years doing this as well as restoring cars and building furniture. But you can also read through this forum and find all the issues folks have with Dex, etc. This includes fatigue, compromising cognitive and emotional function, insomnia, temporary or chronic pain due to the drugs, "chemo brain", sex issues, etc. The other personal QOL issue for me is potentially being tied to a specific hospital for ongoing treatments, should the treatments involve IV drugs. I'm therefore actively seeking a solution that would involve low dose treatments and ideally all in pill form or with at least a few weeks between sessions, which may or not be an option depending on what drugs I end up using. So, I admit that this latter goal just may not be realistic.
With respect to allos, these links cover the QOL risks of GVHD pretty well.
http://www.leukemiabmtprogram.org/patients_and_family/complications_side_effects/gvhd.html
http://www.ncbi.nlm.nih.gov/pubmed/20228854
With respect to autos, I think you already must know about QOL issues first hand.
Of course the biggest QOL issue is simply remaining alive, isn't it? I'm just not willing to entertain an allo given the lower overall survival rate compared to an ASCT and the added risks of GVHD on top of the chemo. Moreover, none of the docs I've talked to (including those at the transplants centers in Colorado) advocate them.
May I need to do an auto if something else pops up? Sure. In fact, if it turns out that I have Light Chain Deposition Disease (which I will find out next week whether I do or don't), an ASCT very well may end up being the route I take, but I will proceed very carefully if that is the case. May I need to seek an allo? Again, sure. But the circumstances under which I would consider one and for which the three multiple myeloma specialists I've met would recommend one are pretty limited.
Lastly, wrt to all of my comments, your situation with tandem autos may put a different spin on things medically. It very well could be that none of what is being stated on this thread is applicable to your situation. Only doctors or others that have had tandem transplants can answer that.
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Allo General Questions
Good point, I guess my dr will be the one with the best advice. Again, Ive had a great QOL while on treatment and went thru minimal side effects during my transplants. After both transplants, ive had absolutely no QOL issues. Maybe thats a sign Id be able to tolerate an allo
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Cmolinaro
Re: Allo General Questions
Mark.
How would you describe the allo transplant experience you went thru and the effects afterwards?
How would you describe the allo transplant experience you went thru and the effects afterwards?
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Cmolinaro
Re: Allo General Questions
One aspect of allos that needs to be addressed, at least in the US, is insurance coverage. For a newly diagnosed patient who opts to have an allo, what insurance company is going to pay for it? It is considered experimental, whether rightly or wrongly. I imagine one could try to obtain one in a clinical trial at, say, the NIH.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Allo General Questions
Another thing to consider is that I would be out of work for 6 months if I did go thru with an allo. At this time, I am consulting, so I really wouldnt have any income unless I was a permanent employee somewhere. I wonder if I could go on treatment and then eventually resort to a transplant afterwards, even though I've already had 2 auto scts.
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CMolinaro
Re: Allo General Questions
Hi Chris,
Typically patients are out of work for 6-8 months. It all depends on what type of work you do. I was able to start working 45 days after because I can work from home. Robin Roberts got back to in 5 months and she obviously has a job that you cannot do from home! It may be good for you to check out the reports online about her experience. She did quite a few interviews. You have more experience with the chemotherapy that will be used so that part will not be new to you as it was for her. Take note, Robin Roberts did a T cell depleted allo like I did so the chance of her and I having a problem with GVHD is very low. If you do not do a T cell depleted allo there is a higher chance of GVHD.
Quality of life can mean different things to different people. First thing everybody needs to try and do is remember back to what life was like prior to diagnosis. I went to the Doctors once every year and I took no pharmaceutical drugs. I had no health challenges. Currently the only drug I take is Zometa which I get once every 3 months due to bone damage from the myeloma. I get blood work and see my Doctor or APN after each Zometa infusion. All my blood counts are in the normal range, so my only change in QOL currently from before my diagnosis is that I have to deal with the bone damage from the myeloma and go for 5 Doctors visits each year. Those 4 and I go to my General Practitioner once per year like I used to. I also have the added "mental" QOL bonus at this point of thinking there is a greater than 50% chance I will never relapse. That is because I have sustained a molecular response for 2 years, did the transplant in CR1 and I had an unrelated female donor. Female to male is associated with the least risk of relapse. Again, averages mean nothing with respect to allo transplants. There are too many variables that make percent chances for the "average" myeloma patient that are applicable to the individual patient.
Have you asked your Doctor what type of allo he/she was planning on doing? There are different ways of doing an allo. Some patients just use radiation and some fludarabine and can do most of the procedure outpatient. I did a partially t cell depleted allo (ATG) with myeloablative (full) conditioning regimine. As far as the chemo it seemed similar to the auto. I was in the hospital for 29 days. The plusses of ATG are low chance of extensive chronic GVHD and ATG kills myeloma cells, The downside is that it takes a little longer for the immune system to get back up to speed, thus the 29 day hospital stay. I was taking a drug called Prograf for immunosuppression when I left the hospital. The goal for me was to taper off in 6 months which I did. Some patients do fully t cell depleted allos and only use Prograf if they are in the minority that are experiencing GVHD. Of course you take an antiviral med, antifungal, I used Dapsone to prevent lung infection and other "anti's" that I would have to go and check my paper work. The day I left the hospital I went out for a 4 mile walk that night, so I felt good. I went and got my meds and went food shopping the next day - with a mask of course!
Mark
Typically patients are out of work for 6-8 months. It all depends on what type of work you do. I was able to start working 45 days after because I can work from home. Robin Roberts got back to in 5 months and she obviously has a job that you cannot do from home! It may be good for you to check out the reports online about her experience. She did quite a few interviews. You have more experience with the chemotherapy that will be used so that part will not be new to you as it was for her. Take note, Robin Roberts did a T cell depleted allo like I did so the chance of her and I having a problem with GVHD is very low. If you do not do a T cell depleted allo there is a higher chance of GVHD.
Quality of life can mean different things to different people. First thing everybody needs to try and do is remember back to what life was like prior to diagnosis. I went to the Doctors once every year and I took no pharmaceutical drugs. I had no health challenges. Currently the only drug I take is Zometa which I get once every 3 months due to bone damage from the myeloma. I get blood work and see my Doctor or APN after each Zometa infusion. All my blood counts are in the normal range, so my only change in QOL currently from before my diagnosis is that I have to deal with the bone damage from the myeloma and go for 5 Doctors visits each year. Those 4 and I go to my General Practitioner once per year like I used to. I also have the added "mental" QOL bonus at this point of thinking there is a greater than 50% chance I will never relapse. That is because I have sustained a molecular response for 2 years, did the transplant in CR1 and I had an unrelated female donor. Female to male is associated with the least risk of relapse. Again, averages mean nothing with respect to allo transplants. There are too many variables that make percent chances for the "average" myeloma patient that are applicable to the individual patient.
Have you asked your Doctor what type of allo he/she was planning on doing? There are different ways of doing an allo. Some patients just use radiation and some fludarabine and can do most of the procedure outpatient. I did a partially t cell depleted allo (ATG) with myeloablative (full) conditioning regimine. As far as the chemo it seemed similar to the auto. I was in the hospital for 29 days. The plusses of ATG are low chance of extensive chronic GVHD and ATG kills myeloma cells, The downside is that it takes a little longer for the immune system to get back up to speed, thus the 29 day hospital stay. I was taking a drug called Prograf for immunosuppression when I left the hospital. The goal for me was to taper off in 6 months which I did. Some patients do fully t cell depleted allos and only use Prograf if they are in the minority that are experiencing GVHD. Of course you take an antiviral med, antifungal, I used Dapsone to prevent lung infection and other "anti's" that I would have to go and check my paper work. The day I left the hospital I went out for a 4 mile walk that night, so I felt good. I went and got my meds and went food shopping the next day - with a mask of course!
Mark
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Mark
Re: Allo General Questions
Chris,
With respect to GVHD, it is broken down into acute and chronic. Acute can occur up to about Day 100 and chronic occurs after day 100. Acute GVHD is graded like other side effects. Grades 1 and 2 acute GVHD are considered a positive thing. The reason for that is that it is a sign that the donor cells viewed you (and the cancer) as foreign and killed it. It is very powerful therapy. The most sensitive testing used in myeloma is PCR testing. A PCR negative means you had a molecular response. Studies from the early 2000's showed 50% of allo patients having a molecular response as opposed to between 7-16% of patients that did autos getting one. It is those patients that get a molecular response that have the best chance of being cured. I had a Grade 1 skin rash that started on Day 40 and lasted for 15 days. I just used an over the counter cotisone cream to stop the itching. My feet would itch when I went out for walks, etc. Grade 3 and 4 is bad acute GVHD.
After day 100 you can experience either extensive chronic GVHD or limited chronic GVHD. I experienced a mild skin rash and sore gums for about a month after day 180 when I stopped my immunosuppression. That is a good thing. It went away on its own and has never come back. Patients that have limited chronic GVHD have a lower chance of relapse. Extensive chronic GVHD is a bad thing.
"A randomized prospective study of 109 transplant patients demonstrated that patients receiving pre-transplant ATG experience significantly less chronic GVHD than patients who did not receive ATG.
After a median follow up of 5.7 years, 60% of non-ATG patients experienced chronic GVHD compared to 37% of patients who received ATG (p=0.05). Extensive chronic GVHD was present in 41% of non-ATG patients and in 15% of ATG patients (p=0.01). [11] See Advances in Conditioning Regimens for more information."
"Although severe GVHD remains a significant cause of post-transplant morbidity and mortality, mild acute and chronic GVHD are associated with a beneficial anti-tumor effect that can reduce the rate of relapse in patients transplanted for hematologic malignancies. [1] In addition, a 2006 study of 584 transplants found that patients who had chronic GVHD that later resolved had similar long-term health status compared to patients who never developed chronic GVHD."
http://marrow.org/Physicians/Transplant_Advances/GVHD_Treatment.aspx
Look at time as your ally in the allo setting. Your QOL is likely to return to normal if you do not develop extensive chronic GVHD. There is only a 15% chance or so of that happening if you use ATG or some other method of t cell depletion. The longer you are in remission the more likely it is that you will never relapse. The "giveback" for that is that you have to do the procedure and give up some time early on. For someone our age it is like betting on if the Doctors will come up with something that can increase the 10 years or so that patients our age can expect. I would rather go with the "tried and true" cure method of allo transplant where there are thousands of patients with various blood cancers cured every year and there are many studies with 10 year plus followup showing good QOL for the majority of survivors. Everyone is different. I would make the decision I made all over again. These decisions are not easy. I am glad I have not had to make one in the last 2 years!
Mark
With respect to GVHD, it is broken down into acute and chronic. Acute can occur up to about Day 100 and chronic occurs after day 100. Acute GVHD is graded like other side effects. Grades 1 and 2 acute GVHD are considered a positive thing. The reason for that is that it is a sign that the donor cells viewed you (and the cancer) as foreign and killed it. It is very powerful therapy. The most sensitive testing used in myeloma is PCR testing. A PCR negative means you had a molecular response. Studies from the early 2000's showed 50% of allo patients having a molecular response as opposed to between 7-16% of patients that did autos getting one. It is those patients that get a molecular response that have the best chance of being cured. I had a Grade 1 skin rash that started on Day 40 and lasted for 15 days. I just used an over the counter cotisone cream to stop the itching. My feet would itch when I went out for walks, etc. Grade 3 and 4 is bad acute GVHD.
After day 100 you can experience either extensive chronic GVHD or limited chronic GVHD. I experienced a mild skin rash and sore gums for about a month after day 180 when I stopped my immunosuppression. That is a good thing. It went away on its own and has never come back. Patients that have limited chronic GVHD have a lower chance of relapse. Extensive chronic GVHD is a bad thing.
"A randomized prospective study of 109 transplant patients demonstrated that patients receiving pre-transplant ATG experience significantly less chronic GVHD than patients who did not receive ATG.
After a median follow up of 5.7 years, 60% of non-ATG patients experienced chronic GVHD compared to 37% of patients who received ATG (p=0.05). Extensive chronic GVHD was present in 41% of non-ATG patients and in 15% of ATG patients (p=0.01). [11] See Advances in Conditioning Regimens for more information."
"Although severe GVHD remains a significant cause of post-transplant morbidity and mortality, mild acute and chronic GVHD are associated with a beneficial anti-tumor effect that can reduce the rate of relapse in patients transplanted for hematologic malignancies. [1] In addition, a 2006 study of 584 transplants found that patients who had chronic GVHD that later resolved had similar long-term health status compared to patients who never developed chronic GVHD."
http://marrow.org/Physicians/Transplant_Advances/GVHD_Treatment.aspx
Look at time as your ally in the allo setting. Your QOL is likely to return to normal if you do not develop extensive chronic GVHD. There is only a 15% chance or so of that happening if you use ATG or some other method of t cell depletion. The longer you are in remission the more likely it is that you will never relapse. The "giveback" for that is that you have to do the procedure and give up some time early on. For someone our age it is like betting on if the Doctors will come up with something that can increase the 10 years or so that patients our age can expect. I would rather go with the "tried and true" cure method of allo transplant where there are thousands of patients with various blood cancers cured every year and there are many studies with 10 year plus followup showing good QOL for the majority of survivors. Everyone is different. I would make the decision I made all over again. These decisions are not easy. I am glad I have not had to make one in the last 2 years!
Mark
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Mark
Re: Allo General Questions
Hi Multibilly,
I do not think I took Dr. Berenson's quote out of context. It is the first line of an abstract involving a study he did. It had nothing to do with the transplant issue. Why would he write that in an abstract about induction therapy if he did not mean it?
Also, I do not believe it is Dr. Berenson's position that autos by themselves cause a lower QOL. It is autos plus never ending cycles of drugs. Take note of this recent story and comment online -
'And one final point in support of transplant—that no additional therapy is required afterward—is moot now that all patients receive ongoing therapy, he said."
http://journals.lww.com/oncology-times/Fulltext/2013/04100/Myeloma__The_Pros_and_Cons_of_Transplantation.5.aspx
You may interpret that comment different than I do, but he seems to be admitting the obvious point that patients like me that are on a long therapy break have a better QOL than patients on never ending cycles of myeloma drugs.
Would you interpret that comment the same way? I am just curious because I could not figure out what else he could have meant by that.
Also note that an auto is usually just a high dose of melphalan, an alkylator. Dr. Berenson makes extensive use of alkylators. Do you get more side effects from a high dose of alkylators as opposed to being on a never ending cycles of alkylator therapy?
"Most patients with multiple myeloma in both the frontline and relapsed/refractory settings are now treated with a combination of dexamethasone with the proteasome inhibitor bortezomib and/or an immunomodulatory agent thalidomide or lenalidomide. However, alkylating agents including melphalan, cyclophosphamide and most recently bendamustine as well as anthracyclines, especially the pegylated liposomal doxorubicin, have shown high response rates and prolonged remissions when combined with these agents."
http://www.ncbi.nlm.nih.gov/pubmed/22871979
I can attest that no myeloma therapy at all is a REALLY well tolerated regimine!
Mark
I do not think I took Dr. Berenson's quote out of context. It is the first line of an abstract involving a study he did. It had nothing to do with the transplant issue. Why would he write that in an abstract about induction therapy if he did not mean it?
Also, I do not believe it is Dr. Berenson's position that autos by themselves cause a lower QOL. It is autos plus never ending cycles of drugs. Take note of this recent story and comment online -
'And one final point in support of transplant—that no additional therapy is required afterward—is moot now that all patients receive ongoing therapy, he said."
http://journals.lww.com/oncology-times/Fulltext/2013/04100/Myeloma__The_Pros_and_Cons_of_Transplantation.5.aspx
You may interpret that comment different than I do, but he seems to be admitting the obvious point that patients like me that are on a long therapy break have a better QOL than patients on never ending cycles of myeloma drugs.
Would you interpret that comment the same way? I am just curious because I could not figure out what else he could have meant by that.
Also note that an auto is usually just a high dose of melphalan, an alkylator. Dr. Berenson makes extensive use of alkylators. Do you get more side effects from a high dose of alkylators as opposed to being on a never ending cycles of alkylator therapy?
"Most patients with multiple myeloma in both the frontline and relapsed/refractory settings are now treated with a combination of dexamethasone with the proteasome inhibitor bortezomib and/or an immunomodulatory agent thalidomide or lenalidomide. However, alkylating agents including melphalan, cyclophosphamide and most recently bendamustine as well as anthracyclines, especially the pegylated liposomal doxorubicin, have shown high response rates and prolonged remissions when combined with these agents."
http://www.ncbi.nlm.nih.gov/pubmed/22871979
I can attest that no myeloma therapy at all is a REALLY well tolerated regimine!
Mark
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Mark
Re: Allo General Questions
The context of this discussion is whether to do transplants or not, with a focus on overall QOL You cited a quote by one of the leading experts in the field without mentioning that he rarely, if ever recommends transplants and that he is against the high dose chemo that accompanies transplants due to the QOL impacts that the transplant has on the individual. He readily admits that the alternative of a (low dose) chemo-only approach still has its drawbacks, but this is the lesser of two evils given the comparable OS stats for chemo-only and and autos.
I honestly don't know what his opinion would be wrt allos, but I have to believe that he would only recommend them under very rare circumstances given his position on autos (ranging from never to rarely). For me, I'm not going to even explore the option of an allo with him given the current GVHD stats and survival rates of allos wrt autos, unless something in my diagnosis changes dramatically and demands that I consider one.
Anyway, let's remember that the point of this thread is to help Cmolinaro. I therefore go back to my earlier statement that the fact that he had tandem autos may put a completely different spin on things medically and that I am totally unqualified to venture an opinion based on his unique situation. I just hope that he can explore a variety of options and get a couple of different professional perspectives on his choices here,, including some of the newer chemo regimes....and I wish him the best of luck in this next stage of his journey.
I honestly don't know what his opinion would be wrt allos, but I have to believe that he would only recommend them under very rare circumstances given his position on autos (ranging from never to rarely). For me, I'm not going to even explore the option of an allo with him given the current GVHD stats and survival rates of allos wrt autos, unless something in my diagnosis changes dramatically and demands that I consider one.
Anyway, let's remember that the point of this thread is to help Cmolinaro. I therefore go back to my earlier statement that the fact that he had tandem autos may put a completely different spin on things medically and that I am totally unqualified to venture an opinion based on his unique situation. I just hope that he can explore a variety of options and get a couple of different professional perspectives on his choices here,, including some of the newer chemo regimes....and I wish him the best of luck in this next stage of his journey.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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