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To those on maintenance
So plans for my allo have been pushed aside, as my numbers are rising so slowly and my doctor feels that I would have much more trouble with an allo than maintenance, considering my age of 35. To those on maintenance, do you ever feel that your being proactive in keeping the beast at bay or wish you went something more extreme such as a donor transplant. I am just worried that maintenance will only last so long for me and then its game over.
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Cmolinaro
Re: To those on maintenance
Cmolinaro,
Excellent question… I also faced the “maintenance or treatment” question after undergoing my ASCT late last year for multiple myeloma, which for me is of the light chain (kappa) variety. When I was diagnosed with multiple myeloma in early 2012 I was 49 years old and my serum kappa protein levels were a factor of one hundred above normal. I underwent six cycles of induction chemo (Velcade/Cyclophosphamide/Dexamethasone) and then an ASCT in the fall of 2012. That brought the serum kappa proteins down to a factor of about 20 over normal which is where they have remained, in a stable state, up to the present. In the spring of this year I started on 15 mg Revlimid maintenance with no apparent effect on the kappa protein levels.
I have just recently convinced my hematologist to prescribe a more aggressive treatment which will start in a month or two. I will go to 25 mg Revlimid daily on a three week on - one week off cycle mixed with Dex in a dosage yet to be determined. The goal with this is to further reduce my cancer burden to the point where, hopefully, the serum kappa protein levels are within the normal range.
While my physician is not fundamentally opposed to the more aggressive treatment he is concerned about the normal risks due to side effects and is not convinced that I may not be compromising myself in some fashion by hastening an inevitable resistance to Revlimid. In any case we are going to see what happens.
My rationale for getting more aggressive with the treatments at this point is twofold: one, it has the psychological benefit of being proactive and, two, I reason that having less cancerous cells conducting business in my body is better than having more. My physician found it hard to argue with this point of view.
He did take exception to the details of my reasoning on the second point, however, which concerns resistance, and follows the simple logic that if resistance to any treatment drug starts with a random genetic mutation in the rapidly reproducing cancer cells then reducing the number of reproductions – by reducing the number of cells - as quickly as possible is the best, perhaps only way to stave off that resistance. Nonetheless, he was willing to let me abandon “maintenance” at this point and go back to “treatment”.
So if you ask me… I say it’s better to treat the cancer aggressively rather than give it time to rally its defences. However, a donor transplant seems like you might be pulling out the Howitzer before trying the fly swatter first. Is there a reason why you would not try an “Auto” transplant?
And then there is a lot of informed opinion that says to stay away from stem cell transplants altogether and stick with chemo. I tend to side with the chemo crowd having experienced a less than effective ASCT myself. There are many informative discussions on this very subject between the Barlogie and the Berenson crowd in this forum.
Hopefully, this won’t be the only comment your question draws as I will be watching with interest…
Regards,
Chris
Excellent question… I also faced the “maintenance or treatment” question after undergoing my ASCT late last year for multiple myeloma, which for me is of the light chain (kappa) variety. When I was diagnosed with multiple myeloma in early 2012 I was 49 years old and my serum kappa protein levels were a factor of one hundred above normal. I underwent six cycles of induction chemo (Velcade/Cyclophosphamide/Dexamethasone) and then an ASCT in the fall of 2012. That brought the serum kappa proteins down to a factor of about 20 over normal which is where they have remained, in a stable state, up to the present. In the spring of this year I started on 15 mg Revlimid maintenance with no apparent effect on the kappa protein levels.
I have just recently convinced my hematologist to prescribe a more aggressive treatment which will start in a month or two. I will go to 25 mg Revlimid daily on a three week on - one week off cycle mixed with Dex in a dosage yet to be determined. The goal with this is to further reduce my cancer burden to the point where, hopefully, the serum kappa protein levels are within the normal range.
While my physician is not fundamentally opposed to the more aggressive treatment he is concerned about the normal risks due to side effects and is not convinced that I may not be compromising myself in some fashion by hastening an inevitable resistance to Revlimid. In any case we are going to see what happens.
My rationale for getting more aggressive with the treatments at this point is twofold: one, it has the psychological benefit of being proactive and, two, I reason that having less cancerous cells conducting business in my body is better than having more. My physician found it hard to argue with this point of view.
He did take exception to the details of my reasoning on the second point, however, which concerns resistance, and follows the simple logic that if resistance to any treatment drug starts with a random genetic mutation in the rapidly reproducing cancer cells then reducing the number of reproductions – by reducing the number of cells - as quickly as possible is the best, perhaps only way to stave off that resistance. Nonetheless, he was willing to let me abandon “maintenance” at this point and go back to “treatment”.
So if you ask me… I say it’s better to treat the cancer aggressively rather than give it time to rally its defences. However, a donor transplant seems like you might be pulling out the Howitzer before trying the fly swatter first. Is there a reason why you would not try an “Auto” transplant?
And then there is a lot of informed opinion that says to stay away from stem cell transplants altogether and stick with chemo. I tend to side with the chemo crowd having experienced a less than effective ASCT myself. There are many informative discussions on this very subject between the Barlogie and the Berenson crowd in this forum.
Hopefully, this won’t be the only comment your question draws as I will be watching with interest…
Regards,
Chris
Re: To those on maintenance
cjoem62 wrote:
> Cmolinaro,
>
> Excellent question…
Chris, a well thought out response
> Cmolinaro,
>
> Excellent question…
Chris, a well thought out response
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: To those on maintenance
I am glad that my Onco was aggressive. Velcade, Revlimid, dec and then rev plus dec for maintenance. we drove all our levels to below normal and they have been there for a couple years. I was off the steroid for a few months and the igg levels started to inch up into the normal range so we added the decadron back in. although I have pretty bad nueropathy I am alive three years later with great numbers on all my blood tests. Personally I prefer the agressive route at least until some side effect causes a problem.
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Chuck Lindgren
Re: To those on maintenance
My understanding is that the deeper response the better! And you should try and get to the CR status
I was early 30's when I was diagnosed (I am 35 now three and a half years out).
My Dr. said if it was 5 years earlier no doubt I would have had an allo up front, but she felt the risks were pretty great compared to the Auto which is pretty standard now, and has a lot less risks. So the goal was an auto, and if I had not responded then move to more aggressive treatment like a second auto, or an allo, but the stem cell transplant was the best plan for me as I plan to be here a long time and it gives the best shot at a long remission. taking continuous chemo isn't the best choice for me as I am sensitive to meds and seem to get every side effect.
I think ultimately you need to make the decision that is best in your circumstances, and it takes a lot of trust in your doctor to guide you on this.
I was early 30's when I was diagnosed (I am 35 now three and a half years out).
My Dr. said if it was 5 years earlier no doubt I would have had an allo up front, but she felt the risks were pretty great compared to the Auto which is pretty standard now, and has a lot less risks. So the goal was an auto, and if I had not responded then move to more aggressive treatment like a second auto, or an allo, but the stem cell transplant was the best plan for me as I plan to be here a long time and it gives the best shot at a long remission. taking continuous chemo isn't the best choice for me as I am sensitive to meds and seem to get every side effect.
I think ultimately you need to make the decision that is best in your circumstances, and it takes a lot of trust in your doctor to guide you on this.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: To those on maintenance
Well I was in a deep CR for 2 years and then slowly my light chain numbers have been moving up. I have Iga Kappa, but luckily my Iga numbers are still around 110. When I was originally diagnosed, they were around 4000. Ive been on no treatment other than Zometa every 3 months
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CMolinaro
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