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Second opinion - San Diego, California
I am looking for a second opinion regarding a stem cell transplant. Looking for a doc who thinks new meds will work rather than a stem cell transplant. I live in the San Diego area.
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Mermaid - Name: Nanz
- When were you/they diagnosed?: 2015
- Age at diagnosis: 67
Re: Second opinion - San Diego, California
Hi mermaid,
You may want to read the "to ASCT or not to ASCT" part of my post, "Well well, not too bad so far" (Nov 15, 2015).
And I am sure that other forum members will have some good links for you.
It is one of the most interesting discussions just now.
It seems that most of the myeloma specialist tend to opt for ASCT for now, while expecting that in a few years from now they will maybe rely on novel treatment up front, having ASCT as an option if needed later.
You write as if you want only info pointing in one direction. And while I am just a lay person, I guess that it is not so much a matter of finding a doctor who believe in "a" rather than in "b", but to find one that understand both options and then after considering your condition will advise you?
And good luck with your difficult choice!
Best regards
Lev
You may want to read the "to ASCT or not to ASCT" part of my post, "Well well, not too bad so far" (Nov 15, 2015).
And I am sure that other forum members will have some good links for you.
It is one of the most interesting discussions just now.
It seems that most of the myeloma specialist tend to opt for ASCT for now, while expecting that in a few years from now they will maybe rely on novel treatment up front, having ASCT as an option if needed later.
You write as if you want only info pointing in one direction. And while I am just a lay person, I guess that it is not so much a matter of finding a doctor who believe in "a" rather than in "b", but to find one that understand both options and then after considering your condition will advise you?
And good luck with your difficult choice!
Best regards
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Second opinion - San Diego, California
Mermaid,
I would highly recommend a drive up to West Hollywood to meet with Dr. Berenson. You will be hard pressed to find a multiple myeloma specialist that is more in line with the philosophy you describe than Dr. B.
Also, if you want to do routine treatment down in San Diego, Dr. B will be happy to consult and advise with your local oncologist that would be administering your drugs in San Diego.
I would highly recommend a drive up to West Hollywood to meet with Dr. Berenson. You will be hard pressed to find a multiple myeloma specialist that is more in line with the philosophy you describe than Dr. B.
Also, if you want to do routine treatment down in San Diego, Dr. B will be happy to consult and advise with your local oncologist that would be administering your drugs in San Diego.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Second opinion - San Diego, California
I would tell you exactly what multibilly wrote. That is exactly what I did. However, I did not like Dr Berenson's referral so after 4 months I found an oncologist in LaJolla who is willing to follow Dr. Berenson's suggestions for treatment. I now see Dr. Berenson only once a year as I have achieved CSR and remain in remission on his maintenance protocol.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Second opinion - San Diego, California
Dear all:
I am shuttling between three hematologists. They are all good. One is very much pro transplant, second will do what first says, and third is a very optimistic person. Same blood test information he sees in positive way. He explained to me this way: Multiple myeloma is incurable but treatable. Newer medicine has been approved and they are more effective. One can follow two routes: Aggressive, and go through transplant, or mild and go through chemo. Transplant on an average gives three years clean life from multiple myeloma but in the process two percent die, many have excessive side effects which will not make leading normal life easy. Non aggressive, while chemo, will maintain / improve multiple myeloma situation with minimal side effects so one can lead normal life.
I opted for non aggressive. After five cycle of chemo I had my stem cell collection and freezing which is kept for emergency.
After sixth cycle, my M-spike is zero. My kappa free light chain is close to normal and kappa / lambda ratio plus lambda is normal after seventh cycle. I am on my eight cycle of Revlimid plus dex and hope to go on a maintenance dose after reaching complete response (CR).
Also in last four weeks two new meds for multiple myeloma have been approved by FDA.
I hope my experience helps you in making decision.
Thank you
I am shuttling between three hematologists. They are all good. One is very much pro transplant, second will do what first says, and third is a very optimistic person. Same blood test information he sees in positive way. He explained to me this way: Multiple myeloma is incurable but treatable. Newer medicine has been approved and they are more effective. One can follow two routes: Aggressive, and go through transplant, or mild and go through chemo. Transplant on an average gives three years clean life from multiple myeloma but in the process two percent die, many have excessive side effects which will not make leading normal life easy. Non aggressive, while chemo, will maintain / improve multiple myeloma situation with minimal side effects so one can lead normal life.
I opted for non aggressive. After five cycle of chemo I had my stem cell collection and freezing which is kept for emergency.
After sixth cycle, my M-spike is zero. My kappa free light chain is close to normal and kappa / lambda ratio plus lambda is normal after seventh cycle. I am on my eight cycle of Revlimid plus dex and hope to go on a maintenance dose after reaching complete response (CR).
Also in last four weeks two new meds for multiple myeloma have been approved by FDA.
I hope my experience helps you in making decision.
Thank you
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Second opinion - San Diego, California
Lev, Tori, Multibilly and MMFeb - thank you for your replies! I will consider your suggestions and move forward.
I agree that it is a year out when SCT will become less common once new mix of new drugs is better known. But the idea of eliminating my 67 years of immune building is a bit daunting and that it will keep this Mermaid out of the ocean for some time. I am confident that this condition will be curable someday. I am right there in line to be cured!
Mermaid ... longing to be in the Sea!
I agree that it is a year out when SCT will become less common once new mix of new drugs is better known. But the idea of eliminating my 67 years of immune building is a bit daunting and that it will keep this Mermaid out of the ocean for some time. I am confident that this condition will be curable someday. I am right there in line to be cured!
Mermaid ... longing to be in the Sea!
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Mermaid - Name: Nanz
- When were you/they diagnosed?: 2015
- Age at diagnosis: 67
Re: Second opinion - San Diego, California
I got my autologous stem cell transplant in November / December 2014 and recovered throughout January / February. While I had a bunch of unpleasant infections during the transplant, I have had none from January and onwards. Hardly even a cold.
So ... you do not per definition catch a lot of infections just because of the treatment. In my case even zero so far.
Best regards
Lev
So ... you do not per definition catch a lot of infections just because of the treatment. In my case even zero so far.
Best regards
Lev
Last edited by Lev on Mon Dec 07, 2015 1:36 am, edited 1 time in total.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Second opinion - San Diego, California
Lev,
How do you feel now? What is your life like? Are you still on chemo?
Mermaid
How do you feel now? What is your life like? Are you still on chemo?
Mermaid
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Mermaid - Name: Nanz
- When were you/they diagnosed?: 2015
- Age at diagnosis: 67
Re: Second opinion - San Diego, California
It sounds like you are doctor shopping to find one that does not do stem cell transplants. In my opinion there is nothing wrong with that in this situation as not doing a stem cell transplant for myeloma is a very viable option that is these days that many patients and doctors are willing to do. Doing any procedure especially a SCT is a patient choice.
Have you discussed asked your current doctor about not wanting to do a SCT? I would be surprised if he sent you away if you did not want to do a SCT. If he did indeed you would probably be better off finding someone else or someone who has experience with and is comfortable with the non-SCT approach.
I have not gone to Dr. Berenson but it is my understanding he is one of the best in treating myeloma with none SCT approaches and this is not based on any kind ideological objection to them, he used to do SCTs himself.
Have you discussed asked your current doctor about not wanting to do a SCT? I would be surprised if he sent you away if you did not want to do a SCT. If he did indeed you would probably be better off finding someone else or someone who has experience with and is comfortable with the non-SCT approach.
I have not gone to Dr. Berenson but it is my understanding he is one of the best in treating myeloma with none SCT approaches and this is not based on any kind ideological objection to them, he used to do SCTs himself.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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