Hi all,
I'm interested what the response results of those of you are who opted to go without a stem cell transplant. Did any of you achieve complete remission, partial remission?
What treatment plan did you start out with, was it changed, etc. How long ago were you diagnosed, approx. age at diagnosis and how would you rate your health status from diagnosis till now. Your replies are appreciated.
Kate
Forums
Re: Chemo only treatment - no stem cell transplant
Kate.
I was diagnosed at age 19 and had a plasmacytoma removed from my chest with two reconstructions after it. I had 15 rounds of radiation to get anything the surgeon missed. Then I was monitored for 6.5 yrs til this past April and I was put on RVD (Revlimid, Velcade, dexamethasone). I got peripheral neuropathy from the Velcade, so they stopped that and I am now on Revlimid and dex.
I started as high as 5.5 g/dL m-spike in April and am now down to 0.8 or lower. My local oncologist says I'm in a very good partial remission now and my oncologist in NYC wants me at 0 for a complete remission. If I don't get to 0, I need a stem cell transplant (SCT), but being so close to it, I'd probably push just to continue the regimen I am on now. I have never had a SCT and don't see the need as long as the chemo works.
By the way, I took a 4 month break from September to December to go thru the sperm banking process. So I feel that, without that break, I'd already have a complete remission, but the doctors screwed up and I needed to take care of the banking before I started up treatment again.
So, again, my doc doesn't rush to the SCT, and I believe if I was at a different hospital I'd already have one when I was 19 or 20, even though I lived normally for 6 years without any treatment.
There are side effects with RVD so watch out for PN, blood clots, low white cell count, insomnia from dex, and weight gain from dex. I put on 30 pounds in 3.5 months from dex, but I needed the gain of weight hahaha. Some people say I look healthier now after being on chemo for 8 months than I did before I started therapy, and I would agree with them.
Let me know if you need anything else,
Mark
I was diagnosed at age 19 and had a plasmacytoma removed from my chest with two reconstructions after it. I had 15 rounds of radiation to get anything the surgeon missed. Then I was monitored for 6.5 yrs til this past April and I was put on RVD (Revlimid, Velcade, dexamethasone). I got peripheral neuropathy from the Velcade, so they stopped that and I am now on Revlimid and dex.
I started as high as 5.5 g/dL m-spike in April and am now down to 0.8 or lower. My local oncologist says I'm in a very good partial remission now and my oncologist in NYC wants me at 0 for a complete remission. If I don't get to 0, I need a stem cell transplant (SCT), but being so close to it, I'd probably push just to continue the regimen I am on now. I have never had a SCT and don't see the need as long as the chemo works.
By the way, I took a 4 month break from September to December to go thru the sperm banking process. So I feel that, without that break, I'd already have a complete remission, but the doctors screwed up and I needed to take care of the banking before I started up treatment again.
So, again, my doc doesn't rush to the SCT, and I believe if I was at a different hospital I'd already have one when I was 19 or 20, even though I lived normally for 6 years without any treatment.
There are side effects with RVD so watch out for PN, blood clots, low white cell count, insomnia from dex, and weight gain from dex. I put on 30 pounds in 3.5 months from dex, but I needed the gain of weight hahaha. Some people say I look healthier now after being on chemo for 8 months than I did before I started therapy, and I would agree with them.
Let me know if you need anything else,
Mark
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Barneasada - Name: Mark
- When were you/they diagnosed?: Jan 2007
- Age at diagnosis: 19
Re: Chemo only treatment - no stem cell transplant
Hi Mark,
<< I was diagnosed at age 19 and had a plasmacytoma removed from my chest with two reconstructions after it. I had 15 rounds of radiation to get anything the surgeon missed. Then I was monitored for 6.5 yrs til this past April and I was put on RVD ... >>
Wow, you started early. I had a 5 x 3 cm plasmacytoma removed from my neck. I'm getting radiation starting tomorrow, 10 days (so that might be called 10 rounds?)
<< I got peripheral neuropathy from the Velcade, so they stopped that and I am now on Revlimid and dex. I started as high as 5.5 g/dL m-spike in April and am now down to 0.8 or lower. >>
Well, I had PN prior to the surgery and I won't come near it
But I think you getting that low on your M-spike (mine is 4.6) on RD is great. This is good to know because the oncologist wants to also start me on RVD, but I want to wait till after the radiation treatment and then get the numbers checked, and might take a wait and see if they are good before I start on chemo. Somehow, I'm not in favor of Velcade for me. It's just a feeling.
So you started in April of last year on RVD and when did you drop the "V"?
Mark, sometimes 'things happen for a reason'. Maybe it's better for you to have done the sperm banking now then before or after the radiation. I think the 'don't rush' approach to the SCT is the proper approach, especially in light of some of the latest research / rethinking about the timing of SCT and of having tandem SCTs.
Thank you so very much for your response. You have no idea how helpful it is to me in my treatment considerations.
Kate
<< I was diagnosed at age 19 and had a plasmacytoma removed from my chest with two reconstructions after it. I had 15 rounds of radiation to get anything the surgeon missed. Then I was monitored for 6.5 yrs til this past April and I was put on RVD ... >>
Wow, you started early. I had a 5 x 3 cm plasmacytoma removed from my neck. I'm getting radiation starting tomorrow, 10 days (so that might be called 10 rounds?)
<< I got peripheral neuropathy from the Velcade, so they stopped that and I am now on Revlimid and dex. I started as high as 5.5 g/dL m-spike in April and am now down to 0.8 or lower. >>
Well, I had PN prior to the surgery and I won't come near it
But I think you getting that low on your M-spike (mine is 4.6) on RD is great. This is good to know because the oncologist wants to also start me on RVD, but I want to wait till after the radiation treatment and then get the numbers checked, and might take a wait and see if they are good before I start on chemo. Somehow, I'm not in favor of Velcade for me. It's just a feeling. So you started in April of last year on RVD and when did you drop the "V"?
Mark, sometimes 'things happen for a reason'. Maybe it's better for you to have done the sperm banking now then before or after the radiation. I think the 'don't rush' approach to the SCT is the proper approach, especially in light of some of the latest research / rethinking about the timing of SCT and of having tandem SCTs.
Thank you so very much for your response. You have no idea how helpful it is to me in my treatment considerations.
Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Chemo only treatment - no stem cell transplant
I was taken off Velcade in early September. I was on it from April til September and never felt anything in terms of PN til after I stopped. Who knows if I was not paying attention, or if it came on after I stopped.
RVD is supposedly the best regimen to get numbers to manageable remission, and the radiation I'm not sure was never an option for me as treatment but as getting whatever the surgeon missed.
I'm in no rush to get a SCT as long as I get close to 0 or achieve 0. But if I plateau in between 0.8 and 0, I am supposedly going to need one. :/ If your doctor says RVD is what they want to do over SCT, I'd go for the RVD. But, again, I'm no doctor and only recommend based upon my story and experience.
The whole issue of when to a SCT isn't an exact science and I appreciate doctors who do not rush into it and value quality of life over long hospital stays and crazy restrictions for going out in groups after SCT. I know I'm going to get at least one or two auto SCT since I'm so young, but hopefully by that time either a cure will be out or allo SCT will be much more of an exact science.
Best of luck, and hopefully your numbers will keep going down,
Mark
RVD is supposedly the best regimen to get numbers to manageable remission, and the radiation I'm not sure was never an option for me as treatment but as getting whatever the surgeon missed.
I'm in no rush to get a SCT as long as I get close to 0 or achieve 0. But if I plateau in between 0.8 and 0, I am supposedly going to need one. :/ If your doctor says RVD is what they want to do over SCT, I'd go for the RVD. But, again, I'm no doctor and only recommend based upon my story and experience.
The whole issue of when to a SCT isn't an exact science and I appreciate doctors who do not rush into it and value quality of life over long hospital stays and crazy restrictions for going out in groups after SCT. I know I'm going to get at least one or two auto SCT since I'm so young, but hopefully by that time either a cure will be out or allo SCT will be much more of an exact science.
Best of luck, and hopefully your numbers will keep going down,
Mark
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Barneasada - Name: Mark
- When were you/they diagnosed?: Jan 2007
- Age at diagnosis: 19
Re: Chemo only treatment - no stem cell transplant
There are a number of posters on this forum who never had a stem cell transplant and reached CR or sCR and have held it.
I personally started on VRD (Velcade once a week, Revlimid 10 mg - on 21 days, off 7, and 40 mg of dex once a week). That was 4 years ago. I am now on maintenance with a Velcade shot once every 2 weeks and 20 mg of dex once every 2 weeks that I take with the Velcade. I also get an Aredia infusion once every 2 months.
I have been in remisssion for 3 1/2 years. I work full time and am an avid cyclist, doing over 4,000 miles a year for the last 3 years.
I have been on Velcade (first infusion, now the shot) the entire time and never had any issues with PN.
Ron
I personally started on VRD (Velcade once a week, Revlimid 10 mg - on 21 days, off 7, and 40 mg of dex once a week). That was 4 years ago. I am now on maintenance with a Velcade shot once every 2 weeks and 20 mg of dex once every 2 weeks that I take with the Velcade. I also get an Aredia infusion once every 2 months.
I have been in remisssion for 3 1/2 years. I work full time and am an avid cyclist, doing over 4,000 miles a year for the last 3 years.
I have been on Velcade (first infusion, now the shot) the entire time and never had any issues with PN.
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: Chemo only treatment - no stem cell transplant
Hello Mark,
<< If your doctor says RVD is what they want to do over SCT, I'd go for the RVD. But, again, I'm no doctor and only recommend based upon my story and experience. The whole issue of when to a SCT isn't an exact science ... >>
My oncologist mentioned RVD. He didn't even mention SCT, even though I'm in excellent health otherwise. I've done quite a bit of research on SCT, and I would not want it as treatment for me! I'm still trying to talk myself into chemo.
<< If your doctor says RVD is what they want to do over SCT, I'd go for the RVD. But, again, I'm no doctor and only recommend based upon my story and experience. The whole issue of when to a SCT isn't an exact science ... >>
My oncologist mentioned RVD. He didn't even mention SCT, even though I'm in excellent health otherwise. I've done quite a bit of research on SCT, and I would not want it as treatment for me! I'm still trying to talk myself into chemo.
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Chemo only treatment - no stem cell transplant
Hi Ron,
<< I personally started on VRD (Velcade once a week, Revlimid 10 mg - on 21 days, off 7, and 40 mg of dex once a week). That was 4 years ago. >>
That's a plan I think I could live with. Actually, I'm not hot on dex, but once a week might be ok. They gave it to me after surgery, but I think it was a much lower dosage.
Thanks Ron, I appreciate your in depth reply to my questions.
Kate
<< I personally started on VRD (Velcade once a week, Revlimid 10 mg - on 21 days, off 7, and 40 mg of dex once a week). That was 4 years ago. >>
That's a plan I think I could live with. Actually, I'm not hot on dex, but once a week might be ok. They gave it to me after surgery, but I think it was a much lower dosage.
Thanks Ron, I appreciate your in depth reply to my questions.
Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Chemo only treatment - no stem cell transplant
I was diagnosed two years ago at age 52. At the time of diagnosis, I was borderline between Stage 1 and 2, with the only symptom being anemia. I just completed my initial therapy with carfilzomib (Kyprolis), Revlimid, and dexamethasone (CRD) as part of a clinical study for newly diagnosed patients, and am not planning to have a stem cell transplant at this time.
There were no changes in dosage during my treatment. I reached sCR and had no significant issues during the two years I was undergoing treatment. I have continued to work and exercise throughout the entire period.
There were no changes in dosage during my treatment. I reached sCR and had no significant issues during the two years I was undergoing treatment. I have continued to work and exercise throughout the entire period.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Chemo only treatment - no stem cell transplant
I'm a 51 years old multiple myeloma's from Israel. 5 years ago I was first diagnosed for a plasmacytoma after a fracture in my upper D4 vertebra. After surgery and some radiation, I continued with periodic blood testing which revealed, on December 09, that I didn’t beat the statistics and I joined the multiple myeloma family.
After 8 cycles of Velcade + dex and another 6 cycles of Velcade, thalidomide, and dex, I'm happy to be in CR for two years now with one year drug free
I'm doing sport almost every day (road cycling), sometimes even long rides of 100 miles and more. I also work as usual (including long inter-continent business trips).
My doctors always wanted me to go for an autologous SCT, but they respect my dilemma and admitted that with a slow progressing multiple myeloma like I had and with CR, they cannot definitively say that a SCT is a must now.
As everyone here will tell, each person has their own myeloma and I still don’t think that I have enough perspective to say that my decision not to go for ASCT was the right one. I guess no one can tell, even if I will relapse tomorrow.
So good luck with your decision. It's not an easy one!
Shay
After 8 cycles of Velcade + dex and another 6 cycles of Velcade, thalidomide, and dex, I'm happy to be in CR for two years now with one year drug free
I'm doing sport almost every day (road cycling), sometimes even long rides of 100 miles and more. I also work as usual (including long inter-continent business trips).My doctors always wanted me to go for an autologous SCT, but they respect my dilemma and admitted that with a slow progressing multiple myeloma like I had and with CR, they cannot definitively say that a SCT is a must now.
As everyone here will tell, each person has their own myeloma and I still don’t think that I have enough perspective to say that my decision not to go for ASCT was the right one. I guess no one can tell, even if I will relapse tomorrow.
So good luck with your decision. It's not an easy one!
Shay
Re: Chemo only treatment - no stem cell transplant
I was diagnosed in October 2011 with Stage 3 multiple myeloma (renal failure was the primary issue) and started Veclade, Cytoxan [cyclophosphamide], and dex (CyBorD, VCD) for 4 months. By the end of the chemo treatments, my M-spike was down to 0.3 g/dL and bone marrow biopsy showed 1% plasma cells. By June, the M-spike was not detectable and was proclaimed to be in complete remission.
Based on that, I went forward with stem cell collection but no transplant. Have been drug free and cancer free since then.
Was it the right approach? Who knows. I feel great and am just taking advantage of this period in my life knowing a relapse could happen at any time. Keeping the SCT and other drugs available for future battles is comforting.
Based on that, I went forward with stem cell collection but no transplant. Have been drug free and cancer free since then.
Was it the right approach? Who knows. I feel great and am just taking advantage of this period in my life knowing a relapse could happen at any time. Keeping the SCT and other drugs available for future battles is comforting.
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MGLarson - Name: Marvin
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2011
- Age at diagnosis: 40
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