I was intrigued by the article that was just posted regarding Short-Term Velcade-Based Combination Therapies May Be Effective And Safe For Multiple Myeloma, but disappointed that it seemed to only address a low-dosage approach as a precursor to an SCT and not as a primary course for long-term treatment.
https://myelomabeacon.org/news/2013/01/31/short-term-velcade-bortezomib-therapies-may-be-effective-and-safe-for-multiple-myeloma/
The following is basically a follow up question to my earlier thread on feedback for first line treatment https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Given the encouraging results of a low-dose regime, I am curious how the dosage and frequencies in the above study compares with those that have chosen the route of postponing an SCT and instead relying on just chemo for treatment. I'd love to hear from those like Ron that have gone down the postpone-the-SCT route.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doses for those delaying a SCT
Hi Multibilly,
James Berenson is a doctor that uses lower doses of drugs in his combos. Try and Google his name. Here is an example of how he uses low doses of Velcade/Doxil/DEX for induction. Take note his study is 4 week cycles. I used this induction in much higher doses and in 3 week cycles. I am sure this is a very easily tolerated induction. Dr. Berenson is known for really stressing QOL in his treatment. He has a good record in terms of Overall Survival of his patients as well.
"Despite recent advances in the treatment of multiple myeloma, the disease remains incurable and many of the most effective, newer combination therapies are accompanied by significant side effects that have a major negative impact on the patient’s quality of life."
http://myeloma.org/pdfs/Berenson_8134.pdf
Do not forget that an auto is usually just a high dose of an alkylator (melphalan). Dr. Berenson uses alkylators in tablet form as opposed to high dose with stem cell rescue.
Mark
James Berenson is a doctor that uses lower doses of drugs in his combos. Try and Google his name. Here is an example of how he uses low doses of Velcade/Doxil/DEX for induction. Take note his study is 4 week cycles. I used this induction in much higher doses and in 3 week cycles. I am sure this is a very easily tolerated induction. Dr. Berenson is known for really stressing QOL in his treatment. He has a good record in terms of Overall Survival of his patients as well.
"Despite recent advances in the treatment of multiple myeloma, the disease remains incurable and many of the most effective, newer combination therapies are accompanied by significant side effects that have a major negative impact on the patient’s quality of life."
http://myeloma.org/pdfs/Berenson_8134.pdf
Do not forget that an auto is usually just a high dose of an alkylator (melphalan). Dr. Berenson uses alkylators in tablet form as opposed to high dose with stem cell rescue.
Mark
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Mark
Re: Doses for those delaying a SCT
Multibilly,
I am still in remission and it wil be 4 years since my diagnosis of Light Chain IGG Kappa multiple myeloma in Feb of 2009.
My initial protocal was never massive. It was Velcade 1.3 infustion once a week accompained by 40 mg of Dex orrally once a week and 10 mg of Revlimid on 21 days off 7. I also was given an Aredia infusion once a month.
I responded to the protocal almost immediattly and my FLC Assay showed signigicant improvement each month. By the 4th month my FLC was all in the normal range. My oncologist left me on this protocal until January of 2010 and then started to back down the treatment. By the end of CY 2010 my protocal was Velcade infustion once every 2 weeks, Dexamethazone 20 mg orrally once every 2 weeks (accompanied the Velcade) and Revlimid 10 mg once a day every 21 days then off 7. The Aredia was moved to one every 2 months.
At the begining of 2012 my velade was switched to subcutaneous. In July I was taken off of Revlimid. So my current protocal is a shot of Velcade once every 2 weeks accompanied by 20 mg of dex. I still recieve Aredia once every 2 months.
As you know I did suffer from viral meningitis and C Diff in early July of 2012. In response to that I do receive monthly infusions of IVIG. (also the reason for taking me off the Revlimid).
My FLC Assay is still in the normal range. Since I went off of Revlimid I have seen a minor improvement in my Red, White and Hemoglobin counts. I am in the low normal range on Hemoglobin and just under normal reasdings, 4.0-4.3 or so on both my red and white overall counts.
I have never suffered with PN.
I work full time and am an avid cyclist that mixes racing in from time to time.
Ron
I am still in remission and it wil be 4 years since my diagnosis of Light Chain IGG Kappa multiple myeloma in Feb of 2009.
My initial protocal was never massive. It was Velcade 1.3 infustion once a week accompained by 40 mg of Dex orrally once a week and 10 mg of Revlimid on 21 days off 7. I also was given an Aredia infusion once a month.
I responded to the protocal almost immediattly and my FLC Assay showed signigicant improvement each month. By the 4th month my FLC was all in the normal range. My oncologist left me on this protocal until January of 2010 and then started to back down the treatment. By the end of CY 2010 my protocal was Velcade infustion once every 2 weeks, Dexamethazone 20 mg orrally once every 2 weeks (accompanied the Velcade) and Revlimid 10 mg once a day every 21 days then off 7. The Aredia was moved to one every 2 months.
At the begining of 2012 my velade was switched to subcutaneous. In July I was taken off of Revlimid. So my current protocal is a shot of Velcade once every 2 weeks accompanied by 20 mg of dex. I still recieve Aredia once every 2 months.
As you know I did suffer from viral meningitis and C Diff in early July of 2012. In response to that I do receive monthly infusions of IVIG. (also the reason for taking me off the Revlimid).
My FLC Assay is still in the normal range. Since I went off of Revlimid I have seen a minor improvement in my Red, White and Hemoglobin counts. I am in the low normal range on Hemoglobin and just under normal reasdings, 4.0-4.3 or so on both my red and white overall counts.
I have never suffered with PN.
I work full time and am an avid cyclist that mixes racing in from time to time.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Doses for those delaying a SCT
Hi Multibilly, I am doing the CRD trial at the NIH (carfilzomib/rev/dex). It is 8 cycles CRD followed by two years low dose rev. One purpose of the trial is to see if the combo can out do the standard induction with SCT. A similar trial is occurring in Michigan. When I started the trial last May, my marrow was 80% infiltrated. Last month, a BMB showed it was clean. My SC;s were collected for a rainy day. Hopefully, that day won't come for a long time. This aspect of having myeloma is nerve racking. What course to choose?? I just felt super comfortable with the NIH approach and I find the head of the multiple myeloma dept. there to be someone I can trust with my life. These are all personal decisions and are not easy.
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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: Doses for those delaying a SCT
Kevin Jones just finished up the Michigan trial on CRD. He is now debating whether or not to go on maintenance. I think he is leaning to go without any drugs for a while. He reached a sCR and has held it.
Ron
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Doses for those delaying a SCT
Many thanks Ron, Terry and Mark. This is all incredibly helpful. I must say that I have come to a point where I am pretty relaxed about my options for the future knowing that I can most likely choose to not deal with an SCT, argue for initial lower doses of chemo and work with docs that can bring a variety of drug combos to counter this disease based on a long term game plan. This forum is great.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doses for those delaying a SCT
Hi Multibilly, Kevin and I both did clinical trials. For me, it was an offer I couldn't refuse and I am lucky I got a slot. Without it, I never would have had access to carfilzomib which has worked so well for me personally. I have never feel like an experiment. Whatever course you choose, you may want to look into a clinical trial as well after doing your research. Good luck!
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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
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