I was diagnosed in August, 2013. Of course, my doc said I should have a SCT. That notion scared the hell out of me - - especially since I was beginning to feel so good after CyBorD treatment. I am 65 and that age puts me at a higher risk than younger folks. Quality of life is very important. I chose not to have a SCT.
I see Dr. Berenson several times a year and he and my local oncologist / hematologist work together to keep me well. I am in remission and I feel pretty damn good. My treatment now is the same as many people who have had a SCT. These newer drugs (like Velcade & others) are keeping all of us alive.
In my opinion, SCT will decline even more as a standard of care as even newer drugs are developed. And, let's face it, hospitals and centers performing stem cell transplants are a big business.
Forums
Re: Dr. James Berenson
Jojo,
That's great! Can you please tell me if your multiple myeloma has risk genetics? Such as chromosome 17 deletion. All other doctors really push for the stem cell transplant with high risk genetics.
Thanks.
That's great! Can you please tell me if your multiple myeloma has risk genetics? Such as chromosome 17 deletion. All other doctors really push for the stem cell transplant with high risk genetics.
Thanks.
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Debbie W - Name: Debbie w
- Who do you know with myeloma?: mom
- When were you/they diagnosed?: june 2014
- Age at diagnosis: 71
Re: Dr. James Berenson
Debbie,
I've never been told my multiple myeloma had high risk genetics so I wouldn't think it had. I was stage 3 when diagnosed, but as I've (and we've all) learned, staging of multiple myeloma is different then other cancer staging.
I was absolutely petrified of the SCT. I was feeling so wonderful after my series of treatments that I didn't want to undergo the six months to a year, and possibly longer, having to live the aftermath of what it does to your body. Quality of life is important to me.
Everyone in my family was willing to go along with whatever I decided, but I still felt that maybe I should go ahead. If I were lots younger, with young children, I'm sure my feelings about having the SCT would have been different.
It was recommended by my doc to go to Moffitt, and I did travel to Tampa and I really liked the doctor, facilities etc. But it was just too far away for my caregiving help, etc. So, I decided, on my own, to go to a closer hospital.
I did have all the many tests at the closer one in preparation for being a candidate for the SCT. I couldn't stand the facility or most of its staff (won't bore you with that) but, again, I chose it because it was closer to my home and my cousin would house me even closer as one needs to be real close to the hospital.
The last test of the battery of tests (including a bone marrow test that they screwed up) was a lung function test. The transplant team turned me down because there was something in my lung function test that could possibly cause me harm (like possibly death!) with the high dose chemo given as part of the SCT. I don't have COPD or emphysema so I'm sure there is nothing major - - I feel this hospital didn't want their numbers screwed up should I die there.
There was a small part of me that didn't like the fact that I was rejected (like I was thrown off the bus), but the 99% part of me was so relieved!!! You have no idea how excited I was that I would not be having the SCT. It was as if God had stepped in for me. It was bashart (a Yiddish word meaning fated or pre-destined).
I celebrated with a glass of champagne and clicked my heals! Dr. Berenson is wonderful and so is my local oncologist / hematologist. I feel fortunate and well even with this stinking disease!
I've never been told my multiple myeloma had high risk genetics so I wouldn't think it had. I was stage 3 when diagnosed, but as I've (and we've all) learned, staging of multiple myeloma is different then other cancer staging.
I was absolutely petrified of the SCT. I was feeling so wonderful after my series of treatments that I didn't want to undergo the six months to a year, and possibly longer, having to live the aftermath of what it does to your body. Quality of life is important to me.
Everyone in my family was willing to go along with whatever I decided, but I still felt that maybe I should go ahead. If I were lots younger, with young children, I'm sure my feelings about having the SCT would have been different.
It was recommended by my doc to go to Moffitt, and I did travel to Tampa and I really liked the doctor, facilities etc. But it was just too far away for my caregiving help, etc. So, I decided, on my own, to go to a closer hospital.
I did have all the many tests at the closer one in preparation for being a candidate for the SCT. I couldn't stand the facility or most of its staff (won't bore you with that) but, again, I chose it because it was closer to my home and my cousin would house me even closer as one needs to be real close to the hospital.
The last test of the battery of tests (including a bone marrow test that they screwed up) was a lung function test. The transplant team turned me down because there was something in my lung function test that could possibly cause me harm (like possibly death!) with the high dose chemo given as part of the SCT. I don't have COPD or emphysema so I'm sure there is nothing major - - I feel this hospital didn't want their numbers screwed up should I die there.
There was a small part of me that didn't like the fact that I was rejected (like I was thrown off the bus), but the 99% part of me was so relieved!!! You have no idea how excited I was that I would not be having the SCT. It was as if God had stepped in for me. It was bashart (a Yiddish word meaning fated or pre-destined).
I celebrated with a glass of champagne and clicked my heals! Dr. Berenson is wonderful and so is my local oncologist / hematologist. I feel fortunate and well even with this stinking disease!
-
JoJo
Re: Dr. James Berenson
JoJo, can you private message me?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dr. James Berenson
Dear Goldmine (Andrew):
I saw your reference to Johns Hopkins. You said they rarely recommend ASCT. I had the impression they did. I may be heading in that direction. Did you talk to Dr. Carol Ann Huff? And, are you still "smoldering" - or are you taking a drug-only approach (and not getting an ASCT?).
I'm curious if you're in the Washington, DC area and if you go to a local oncologist? (sounds like you may be in Maryland?)
Bill
I saw your reference to Johns Hopkins. You said they rarely recommend ASCT. I had the impression they did. I may be heading in that direction. Did you talk to Dr. Carol Ann Huff? And, are you still "smoldering" - or are you taking a drug-only approach (and not getting an ASCT?).
I'm curious if you're in the Washington, DC area and if you go to a local oncologist? (sounds like you may be in Maryland?)
Bill
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weagle - Name: William Eagle
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 57
Re: Dr. James Berenson
William, I saw Dr. Huff for a second opinion. I am not being treated at Hopkins. She told me that they rarely recommend transplant but they do them, especially in connection with clinical trials.
I was never smoldering. I underwent an auto transplant at Hershey Medical Center in January 2014. So far so good.
I was never smoldering. I underwent an auto transplant at Hershey Medical Center in January 2014. So far so good.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Dr. James Berenson
Hi Weagle,
Dr. Huff is an amazing oncologist who will choose the best therapy for each patient. She factors in how aggressive a patient wants to be and offers a plethora of choices. Her philosophy is to do what's best for the patient--she takes neither a pro- nor anti- transplant stance.
There is no one-size-fits-all when it comes to this disease and you cannot go wrong with an oncologist who is willing to know you and offer you the best that science has to offer.
I owe my life to her willingness to think outside the box and provide options for me (including two allo transplants, even though I was her first patient to do so).
Good luck!
Dr. Huff is an amazing oncologist who will choose the best therapy for each patient. She factors in how aggressive a patient wants to be and offers a plethora of choices. Her philosophy is to do what's best for the patient--she takes neither a pro- nor anti- transplant stance.
There is no one-size-fits-all when it comes to this disease and you cannot go wrong with an oncologist who is willing to know you and offer you the best that science has to offer.
I owe my life to her willingness to think outside the box and provide options for me (including two allo transplants, even though I was her first patient to do so).
Good luck!
-
Dheidel
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