Hi everyone,
I'm meeting with the transplant doctor on Monday and I suspect that he will be interested in deciding the "when," rather than the "if," of a transplant. I had my stem cells harvested in March 2011, shortly after my diagnosis at the end of 2010 and after a few cycles of Revlimid/Dex/Velcade. At that time my oncologist wanted to freeze the cells, and keep me on the Rev/Dex/Velcade regimen (it was a clinical trial).
I did very well in the trial until, after we had cut out the dex and the Velcade and dropped the Revlimid dose from 25 to 15, my Kappa Light Chains started creeping up again (this is the main number the doctor uses to track disease progress in my case.)
Finally last December they were up to about 15 and my doctor wanted to start a new type of treatment. At that time I went on Cytoxan/Velcade/Dex on a weekly basis.
Right now my Kappa Chain number has dropped down to 1.58 and the Lambda number (which has always been normal) is 0.63, this makes the ratio 2.51, which is still a bit outside of the normal range (in my test results it says normal would be 0.26 to 1.65.)
I had a PET scan recently which my doctor said was "quiet," with no areas of immediate concern. All of my other blood work is normal and my recent X-rays have shown no increase in bone lesions and some areas where lesions have disappeared (I'm also getting Zometa once a month again after discontinuing it for about 6 months.) I am fortunate in that other than the bone lesions I haven't had serious complications from the multiple myeloma.
It's hard for me to think about undergoing the rigors of a SCT when things seem to be so positive right now, but I understand that this would actually be the optimal time to do it.
I was wondering if anyone here could offer an opinion as to whether or not a SCT makes sense as my next stage of treatment. I am just torn and not sure what to do.
On the one hand I am concerned that my Kappa number spiked upwards like that, although I do wonder if it was just that we dropped the Revlimid to too low a dose for it to be effective. If a SCT might allow me to have less treatment afterwards and get into a good deep remission for longer than drug therapy, it would be worth it, I think...
One question I had is how long stem cells can be frozen and still be viable. Mine have been frozen for about three years now. Should this issue be part of my decision?
I'm having trouble finding any research to help me make a decision, based on my relatively young age (54). Obviously I want to do whatever necessary to have as many healthy years ahead of me as possible...
Thanks for any help in making this difficult decision!
Karen
Forums
Re: Looking for help with stem cell transplant decision
To do a transplant, or not, is always a difficult decision. Is there any reason why Revlimid wasn't in your regimen when you restarted treatment? My oncologist feels that if a regimen worked before then it's the one to start with again, If it doesn't work the second time then it's time to start trying other combinations.
If a stem cell transplant is done it seems to be more successful when your are in a very low level of Myeloma. It isn't a guarantee, but not having one and continuing with chemo isn't a guarantee of a good response either. I had a transplant after my induction therapy. I had significant bone disease at the time, but had had a good response to my regimen of Revlimid and Dex with Zometa infusions every 4-6 weeks. I had almost a 3 year response to the transplant with no drugs during that time except for a continuation of the Zometa infusions. I restarted treatment again in 12/12 with the same regimen as my induction therapy with excellent results.
Where I am treated they say that the stem cells are viable for 10, or more, years. So, yours should be good after 3 years.
Whatever you decide to do know that it is the right decision for you,
Nancy in Phila
If a stem cell transplant is done it seems to be more successful when your are in a very low level of Myeloma. It isn't a guarantee, but not having one and continuing with chemo isn't a guarantee of a good response either. I had a transplant after my induction therapy. I had significant bone disease at the time, but had had a good response to my regimen of Revlimid and Dex with Zometa infusions every 4-6 weeks. I had almost a 3 year response to the transplant with no drugs during that time except for a continuation of the Zometa infusions. I restarted treatment again in 12/12 with the same regimen as my induction therapy with excellent results.
Where I am treated they say that the stem cells are viable for 10, or more, years. So, yours should be good after 3 years.
Whatever you decide to do know that it is the right decision for you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Looking for help with stem cell transplant decision
Thanks, Nancy!
My doctor seemed to feel that I would have a better response with a new drug, one that my body hadn't "seen so much of" already. I also think he has always been somewhat concerned about the risk of secondary cancers with Revlimid. He seemed quite relieved to have me off it. I had read that this risk seemed to be focused on those who had been treated with melphalan (for a SCT) only. At any rate, I do wonder about whether returning to Revlimid maintenance therapy, perhaps back at 25 mg along with a lower dose of dex (right now I'm on 40 mg/week) might be an option.
As I understand it, I can try drug therapy again, but if I become resistant to it and come out of remission, then I'll be in less of an optimal place for a SCT, and getting me back into remission a third time could be harder.
My oncologist also mentioned that treatment with drug therapy would probably result in a remission of 1 1/2 to 2 years at most, whereas a SCT would hopefully result in a longer, deeper remission. I'm pretty sure that's why he's leaning towards my having one now. That, and the fact that I'm "young" and otherwise healthy and would likely tolerate it very well.
Karen
My doctor seemed to feel that I would have a better response with a new drug, one that my body hadn't "seen so much of" already. I also think he has always been somewhat concerned about the risk of secondary cancers with Revlimid. He seemed quite relieved to have me off it. I had read that this risk seemed to be focused on those who had been treated with melphalan (for a SCT) only. At any rate, I do wonder about whether returning to Revlimid maintenance therapy, perhaps back at 25 mg along with a lower dose of dex (right now I'm on 40 mg/week) might be an option.
As I understand it, I can try drug therapy again, but if I become resistant to it and come out of remission, then I'll be in less of an optimal place for a SCT, and getting me back into remission a third time could be harder.
My oncologist also mentioned that treatment with drug therapy would probably result in a remission of 1 1/2 to 2 years at most, whereas a SCT would hopefully result in a longer, deeper remission. I'm pretty sure that's why he's leaning towards my having one now. That, and the fact that I'm "young" and otherwise healthy and would likely tolerate it very well.
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Looking for help with stem cell transplant decision
My SCT kept me in remission for 3 1/2 years. I won't have another because the first one was pretty hard, but I was 71. If I were younger I would do it again.
3 1/2 years of quarterly blood and urine tests with no treatments was worth the 18 days of discomfort.
3 1/2 years of quarterly blood and urine tests with no treatments was worth the 18 days of discomfort.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Looking for help with stem cell transplant decision
Hi, I am kind of in the same predicament with the decision of ASCT or not. Although I am much older 63. My induction was Velcade and dex. Just finished in Dec 2013. I now have moderate - severe neuropathy in my feet. I am going in for stem cell harvest in a week or so.
I am really interested in this week's poll to see if I can get some more opinions. Keep writing and I also will post any thing that might be helpful.
I am really interested in this week's poll to see if I can get some more opinions. Keep writing and I also will post any thing that might be helpful.
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molly may
Re: Looking for help with stem cell transplant decision
Molly May,
I am now 73 years old and had my SCT almost one year ago. My circumstance may be somewhat different than yours as my induction therapy worked so well, that the Mayo Clinic could not find any evidence of multiple myeloma when I arrived for my SCT. Even so, they recommended that I go forward with the SCT. With the SCT, I obtained/retained complete remission and am thankful that I made the decision to go forward with it.
The procedure was not easy for me due to the fact that the port I had implanted for my induction therapy had to be removed and replaced with a Hickman device. As often occurs with the removal of a port device, I developed several blood clots, so a blood thinning regimen was put in place for several weeks before the actual stem cell procedure could begin.
Unfortunately, without the Hickman, the stem cells had to be harvested using a large needle inserted deeply into my (alternating) wrist areas (ouch). That required four day, five hour sessions laying very still, with my arms spread out in a cross like fashion during the actual harvesting. To say it was very painful would be an understatement. Having stated that, I believe it was well worth the pain and discomfort.
It's your decision whether to go forward with the SCT or not and as I wrote earlier, my circumstance was unusual in that without the Hickman device, things became more difficult. I did receive the Hickman, post SCT, and having it made all of the blood sample drawing and medicating painless and so much more convenient.
As for me, if neccesary, I would have another SCT, provided any induction therapy needed prior to the SCT, would be done using a Hickman in lieu of a basic port device.
Best of luck to you.
I am now 73 years old and had my SCT almost one year ago. My circumstance may be somewhat different than yours as my induction therapy worked so well, that the Mayo Clinic could not find any evidence of multiple myeloma when I arrived for my SCT. Even so, they recommended that I go forward with the SCT. With the SCT, I obtained/retained complete remission and am thankful that I made the decision to go forward with it.
The procedure was not easy for me due to the fact that the port I had implanted for my induction therapy had to be removed and replaced with a Hickman device. As often occurs with the removal of a port device, I developed several blood clots, so a blood thinning regimen was put in place for several weeks before the actual stem cell procedure could begin.
Unfortunately, without the Hickman, the stem cells had to be harvested using a large needle inserted deeply into my (alternating) wrist areas (ouch). That required four day, five hour sessions laying very still, with my arms spread out in a cross like fashion during the actual harvesting. To say it was very painful would be an understatement. Having stated that, I believe it was well worth the pain and discomfort.
It's your decision whether to go forward with the SCT or not and as I wrote earlier, my circumstance was unusual in that without the Hickman device, things became more difficult. I did receive the Hickman, post SCT, and having it made all of the blood sample drawing and medicating painless and so much more convenient.
As for me, if neccesary, I would have another SCT, provided any induction therapy needed prior to the SCT, would be done using a Hickman in lieu of a basic port device.
Best of luck to you.
Re: Looking for help with stem cell transplant decision
I always found this thread to be enlightening wrt this subject.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
The secondary cancer effects from Rev are indeed a real concern and I'm glad you are discussing this subject with your doc. Drug cocktails with Revlimid aren't the only game in town.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
The secondary cancer effects from Rev are indeed a real concern and I'm glad you are discussing this subject with your doc. Drug cocktails with Revlimid aren't the only game in town.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Looking for help with stem cell transplant decision
Hi Karen,
That decision is a really tough one. I can share my situation but I'm not sure if it will help because I am considered high risk and it sounds like you are probably standard risk. My high risk designation is based on how fast my doctors perceived my disease to be progressing. No cytogenetics were ever obtained. I had 6 cycles of induction RVD followed by harvest and an auto transplant last October. I recovered really fast and so far,well, from the transplant.
However, 8 weeks post transplant my light chains were up a bit and more disturbing to me was that I had bumps appear on my skull again. I assume these are plasmacytomas but my doctors are not sure. I went back on RVD at the same induction dose at 90 days post transplant. The bumps went down for a couple of weeks but now they are back a little bit. I had 2 cycles of the consolidation (same as induction dose) and am now on a maintenance dose of one Velcade shot every other week , 20 mg dex each week and 21 days of Revlimid, followed by one week off.
If my numbers don't hold steady, we will probably go for Pomalyst and Kryprolis. My light chains and the ratio are up a little but my M-spike is the lowest I've had. Diagnosis was near 6 (can't remember the exact), pre-transplant was .9 and now .35. So, for me, it's a mixed bag.
The thing is, I don't know where I'd be without the transplant. The drugs might have gotten me to the same place, or maybe my M-spike wouldn't be this low. I feel like if I'd had a lower risk disease, I probably would have waited for first relapse.
However, if I hadn't had the transplant, then I would have always wondered if I'd done everything I could have. Both my doctors were urging me to do the transplant.
It's so hard, we all are trying to look into a crystal ball and figure out which road will buy us the most time. Even after having gone through this, I still don't know the answer but I'm glad I tried it and it's behind me. I'm lucky I had an easy recovery. Both doctors are now mentioning the possibility of an allo but I think I'm going to just do the drugs now and maybe do a clinical trial down the road.
Best of luck in your decision and treatment .
That decision is a really tough one. I can share my situation but I'm not sure if it will help because I am considered high risk and it sounds like you are probably standard risk. My high risk designation is based on how fast my doctors perceived my disease to be progressing. No cytogenetics were ever obtained. I had 6 cycles of induction RVD followed by harvest and an auto transplant last October. I recovered really fast and so far,well, from the transplant.
However, 8 weeks post transplant my light chains were up a bit and more disturbing to me was that I had bumps appear on my skull again. I assume these are plasmacytomas but my doctors are not sure. I went back on RVD at the same induction dose at 90 days post transplant. The bumps went down for a couple of weeks but now they are back a little bit. I had 2 cycles of the consolidation (same as induction dose) and am now on a maintenance dose of one Velcade shot every other week , 20 mg dex each week and 21 days of Revlimid, followed by one week off.
If my numbers don't hold steady, we will probably go for Pomalyst and Kryprolis. My light chains and the ratio are up a little but my M-spike is the lowest I've had. Diagnosis was near 6 (can't remember the exact), pre-transplant was .9 and now .35. So, for me, it's a mixed bag.
The thing is, I don't know where I'd be without the transplant. The drugs might have gotten me to the same place, or maybe my M-spike wouldn't be this low. I feel like if I'd had a lower risk disease, I probably would have waited for first relapse.
However, if I hadn't had the transplant, then I would have always wondered if I'd done everything I could have. Both my doctors were urging me to do the transplant.
It's so hard, we all are trying to look into a crystal ball and figure out which road will buy us the most time. Even after having gone through this, I still don't know the answer but I'm glad I tried it and it's behind me. I'm lucky I had an easy recovery. Both doctors are now mentioning the possibility of an allo but I think I'm going to just do the drugs now and maybe do a clinical trial down the road.
Best of luck in your decision and treatment .
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Looking for help with stem cell transplant decision
I went through a similar thought process as Joy, except that I had a CR from frontline therapy of Velcade/Doxil/Dex in late 2010-early 2011. So I wondered if a transplant was necessary, but came to the same place; if I didn't have it and things went badly I'd wonder if I'd made a mistake. In the end I had about 30 months before my levels started to creep up, and now I'm getting Velcade injections with Dex, which seems to be knocking them back down.
Some doctors prefer to wait and see if the cancer can be controlled without a transplant, but I suppose that runs the risk of not being able to get it under control.
It really is an individual decision, and one for which there may not be one right answer. Work your way through it until you reach a place you're comfortable with and then hope for the best outcome.
Some doctors prefer to wait and see if the cancer can be controlled without a transplant, but I suppose that runs the risk of not being able to get it under control.
It really is an individual decision, and one for which there may not be one right answer. Work your way through it until you reach a place you're comfortable with and then hope for the best outcome.
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Ron - Name: Ron
- When were you/they diagnosed?: Nov. 2010
- Age at diagnosis: 63
Re: Looking for help with stem cell transplant decision
Hi - I'm 58 years old, male. I decided not to have the SCT, rather choose Quality of Life for now.
I was diagnosed in June 2012 and postponed treatment until February 2013 (not the wisest choice, but my doctor treated me based on how I felt even though my rbc was under 10). I am self-employed and pay for my own insurance. If I don’t work, no money, no pay medical insurance and start way too early drawing down on what is supposed to be for retirement for my wife and I (no pension here). But I couldn't afford not to work - I had to travel each week and did not want to stop until I had to.
I found work locally and started started on Velcade (weekly), dex and Revlimid (25 mg) - did that through May 2013. I continue to be on the Revlimid 25 mg today as maintenance. My myeloma is not gone, but controlled. Though my M-spike continues to move up, the light chains ratios remain normal which is what my doctor goes by. I have continued to work 40-50 hrs week since starting treatment. Mild neuropathy in feet, but that’s it for major side effects.
I knew by going the chemo way I was limiting the ability to have a SCT. So far, I have not regretted that. My doctor and I discussed that at some point - another year or so - we will be discussing changing drugs / treatment - it won't last forever.
A year ago I was thinking the end-of-life as I knew it. Today, I am planning vacations and where I am riding my bike next.
Cheers
I was diagnosed in June 2012 and postponed treatment until February 2013 (not the wisest choice, but my doctor treated me based on how I felt even though my rbc was under 10). I am self-employed and pay for my own insurance. If I don’t work, no money, no pay medical insurance and start way too early drawing down on what is supposed to be for retirement for my wife and I (no pension here). But I couldn't afford not to work - I had to travel each week and did not want to stop until I had to.
I found work locally and started started on Velcade (weekly), dex and Revlimid (25 mg) - did that through May 2013. I continue to be on the Revlimid 25 mg today as maintenance. My myeloma is not gone, but controlled. Though my M-spike continues to move up, the light chains ratios remain normal which is what my doctor goes by. I have continued to work 40-50 hrs week since starting treatment. Mild neuropathy in feet, but that’s it for major side effects.
I knew by going the chemo way I was limiting the ability to have a SCT. So far, I have not regretted that. My doctor and I discussed that at some point - another year or so - we will be discussing changing drugs / treatment - it won't last forever.
A year ago I was thinking the end-of-life as I knew it. Today, I am planning vacations and where I am riding my bike next.
Cheers
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picante - Name: John P
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 57
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