K_Shash,
Thanks for all the info. I actually have two labs per month and always have at least one office visit with my local oncologist. My Velcade treatments are, as they show on the Velcade website, for first-line treatment, i.e. days 1, 4, 8 and 11 with 10 days off. Labs include IgA, SPEP, IFE, kappa & lambda free light chains, plus CBC. My last labs show no gamma globulin spike on SPEP. My IFE shows a faint globulin protein spike. IgA is at 146.
My oncologist works with USC Norris and their myeloma specialist in Southern California. Also, I had to stop my Revlimid and have the rash dissipate before adding the Velcade. So I have been on this Velcade / dex combination for about four months. USC suggested to go one more month at my current treatment and then cut it back before harvest.
One of the side effects from Revlimid is a rash. On the suggestion from USC, my doctor stopped my Revlimid. Reducing the dosage was not an option for me. I am having much better results from the Velcade as it turned out. A little neuropathy for now is something I can deal with. For now, I can at least have my cells harvested and have that in the bank while I finish up some things for Mom. After that, I will be free to have my transplant later on this year.
Good luck and thanks again, Castaway
Forums
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: How did you decide whether to have a SCT or not?
Cathy,
Yes, I have harvested stem cells in preparation for a SCT when I finally choose to have one. I collected enough for up to three SCTs during my first year of treatment.
Yes, I have harvested stem cells in preparation for a SCT when I finally choose to have one. I collected enough for up to three SCTs during my first year of treatment.
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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: How did you decide whether to have a SCT or not?
This is a familiar debate. As others have detailed, there is no clear scientifically-verified answer. I have posted at length before on it so I will be brief here.
I had an excellent response to VRD induction and easily could have justified not having an early transplant. My oncologist was strongly in favor of early transplant and had some studies to support his position. I saw a second oncologist who rarely recommends transplant and she had studies and logical arguments to support her position.
I made my decision to go forward with the transplant based on these factors:
I had an excellent response to VRD induction and easily could have justified not having an early transplant. My oncologist was strongly in favor of early transplant and had some studies to support his position. I saw a second oncologist who rarely recommends transplant and she had studies and logical arguments to support her position.
I made my decision to go forward with the transplant based on these factors:
- I was age 61 at diagnosis, which I consider to be relatively young;
- It may turn out that, in the future, studies will demonstrate that early transplant gives patients in my position the best chance of long-term survival and, if that were the case, I would surely regret not having the early transplant;
- Undergoing transplant will not limit my ability to take advantage of other newer treatments should that prove necessary;
- The only downside that I could see was the discomfort of the recovery from the transplant and its side effects, which appeared to me to be largely temporary;
- If I delayed the transplant, if I needed it later, my physical condition at that time might render me ineligible.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: How did you decide whether to have a SCT or not?
Thanks, Castaway, Kevin J and Andrew, for all the insight you gave all of us into your decision making.
I will be 68 in April. And that is raising a new concern!
How old is too old for a transplant?
As a minimum, I do plan on harvesting my stem cells soon after the induction therapy. I hope to maintain my active life during the maintenance therapy phase, after the next few months of the induction chemo.
Assuming I keep up my physical strength for the next 5 to 7 years (when one would expect a relapse of the high kappa free light chains), these years would still reduce my physical ability to withstand the ordeal of a transplant.
I would appreciate any guidance and thoughts on this concern.
I will be 68 in April. And that is raising a new concern!
How old is too old for a transplant?
As a minimum, I do plan on harvesting my stem cells soon after the induction therapy. I hope to maintain my active life during the maintenance therapy phase, after the next few months of the induction chemo.
Assuming I keep up my physical strength for the next 5 to 7 years (when one would expect a relapse of the high kappa free light chains), these years would still reduce my physical ability to withstand the ordeal of a transplant.
I would appreciate any guidance and thoughts on this concern.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: How did you decide whether to have a SCT or not?
Well, after my first course of treatment had little effect, a stem cell transplant was recommended by my specialist.
A one-time harvest yielded more than enough stem cells, and I was scheduled for only one transplant. And needed no maintenance therapy afterwards.
I've been doing fine, in partial remission for three years.
A one-time harvest yielded more than enough stem cells, and I was scheduled for only one transplant. And needed no maintenance therapy afterwards.
I've been doing fine, in partial remission for three years.
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RossD8
Re: How did you decide whether to have a SCT or not?
I am doing an auto transplant right now - I went active from smoldering myeloma to symptomatic myeloma about 6 weeks ago.
In my humble opinion? If something is going to prolong my life - GO FOR IT. I feel the best I have in a long while - and I am only in induction. My bone marrow is making haemoglobin (instead of getting litres of irradiated packed red cells through transfusions), so fatigue is becoming less. With that, my depression has lifted, as well as my anxiety.
Me? I say go for it! What's the worst that can happen?
In my humble opinion? If something is going to prolong my life - GO FOR IT. I feel the best I have in a long while - and I am only in induction. My bone marrow is making haemoglobin (instead of getting litres of irradiated packed red cells through transfusions), so fatigue is becoming less. With that, my depression has lifted, as well as my anxiety.
Me? I say go for it! What's the worst that can happen?
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: How did you decide whether to have a SCT or not?
Kevin J wrote:
Totally, I am pushing for another stem cell collection (so I have enough for three transplants) it seems that a double (which uses two units) is POSSIBLY better.
I have yet to convince my haemotologist, but I will.
Yes, I have harvested stem cells in preparation for a SCT when I finally choose to have one. I collected enough for up to three SCTs during my first year of treatment.
Totally, I am pushing for another stem cell collection (so I have enough for three transplants) it seems that a double (which uses two units) is POSSIBLY better.
I have yet to convince my haemotologist, but I will.
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: How did you decide whether to have a SCT or not?
I never thought twice about my transplant. I was diagnosed in 2012 at the age of 54, in otherwise excellent health. Given that transplants are the standard of care, they generally work reasonably well for some period of time, and I had little doubt that I'd tolerate the procedure well, so it was an easy decision.
I was in the hospital for 15 day, back on my feet within a week and a half of getting back, and back at work within 90 days. I greatly enjoyed much of my time off from work since I felt well and was able to get out and walk a lot.
Of course, all of this is a crap shoot. Myeloma medicine is evolving extremely rapidly and it may turn out that some combination of novel drugs will work just as well as the transplants do. Or it may turn out that the next therapy down the road (say, daratumumab) will end up removing the need for transplants. At the very least, we seem to be moving in that direction.
I was in the hospital for 15 day, back on my feet within a week and a half of getting back, and back at work within 90 days. I greatly enjoyed much of my time off from work since I felt well and was able to get out and walk a lot.
Of course, all of this is a crap shoot. Myeloma medicine is evolving extremely rapidly and it may turn out that some combination of novel drugs will work just as well as the transplants do. Or it may turn out that the next therapy down the road (say, daratumumab) will end up removing the need for transplants. At the very least, we seem to be moving in that direction.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: How did you decide whether to have a SCT or not?
Very interesting discussion. My husband almost participated in Dr. Richardson's trial that Mikeb is in (thanks, Mikeb!), but we chose to opt out for a few reasons, one of which is to maintain as much control and flexibility with his early treatment (I.e., number of cycles of induction meds) based on his young age and aggressive myeloma.
The current plan is to go for early transplant. But I am now wondering if it makes sense to hold off for the new form of melaphalan scheduled for approval later this year. I saved the article about it to bring in to our next visit to our myeloma specialist [see related Beacon forum posting].
Both myeloma specialists we have seen do not feel that early transplant is necessarily the best course, but our doctor has recommended it in my husband's case. It is scary to have these options without knowing which will lead to the best outcome.
The current plan is to go for early transplant. But I am now wondering if it makes sense to hold off for the new form of melaphalan scheduled for approval later this year. I saved the article about it to bring in to our next visit to our myeloma specialist [see related Beacon forum posting].
Both myeloma specialists we have seen do not feel that early transplant is necessarily the best course, but our doctor has recommended it in my husband's case. It is scary to have these options without knowing which will lead to the best outcome.
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: How did you decide whether to have a SCT or not?
Hi, there are only so many treatments for myeloma, and each one will only last so long, so ruling out one of them will take you to the end of the line of available treatments faster than trying them all. (Of course, whilst you are on your journey, new drugs will be developed to go on the end of the line.)
The SCT is a pretty rough process, but if you don't have it whilst you are a younger patient (as you are), you may not be able to have it later. I had it in 2010 and have been in total remission since. No medication at all for the last 5 years.
Of course, everyone is different, particularly in their response to treatments and the side effects. My advice is, if you are on a treatment that is working, and the side effects are bearable, then stay on it till it stops working. Then consider the available treatments open to you.
Good luck,
Peter
The SCT is a pretty rough process, but if you don't have it whilst you are a younger patient (as you are), you may not be able to have it later. I had it in 2010 and have been in total remission since. No medication at all for the last 5 years.
Of course, everyone is different, particularly in their response to treatments and the side effects. My advice is, if you are on a treatment that is working, and the side effects are bearable, then stay on it till it stops working. Then consider the available treatments open to you.
Good luck,
Peter
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Peterjaygee
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