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What regimens are those with t(4:14) myeloma taking
I have IGA kappa myeloma with T(4:14). I wondered what regimens other myeloma patients are on with this same set of myeloma characteristics and how long since you've been diagnosed. My myeloma specialist says that he treats with Revlimid at 25 mg a day for 3 weeks and a week off for maintenance after an SCT. He says that he has patients with the same characteristics who were diagnosed as long as 8 years ago.
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slegier
Re: What regimens are those with t(4:14) myeloma taking
slegier,
I also have an IgA Kappa myeloma with a t(4:14) diagnosed in February, 2011. Went through 4 cycles of RVD induction followed by an ASCT (after two months off the meds, which seems to be atypical). 25mg Revlimid (2 weeks on/1 off), 1.3mg/m2 Velcade (twice weekly with the Revlimid schedule), and 20mg Dex day of and after Velcade. I was blessed with a sCR verified by a biopsy just prior to the transplant. (Thank you, God!)
After about three months of recovery post-transplant I underwent another 4 cycles of RVD consolidation. Similar to the induction, the only changes were a bump down of Revlimid to 15mg, and the Velcade schedule was simply moved to once weekly.
Currently I am on RV maintenance at 5mg Rev (2 on/1 off) and Velcade every other week. The Velcade is in there based on my risk factors, several studies showing improved outcomes with Velcade, and the fact that I have tolerated it well so far. How long do I go? I don't know at this point - We (my doctor and I) will re-evaluate around two years out.
One thing to bear in mind with treatment plans - There are really no hard and fast rules to this. There are a lot of very intelligent doctors out there who have their own ideas as to what's best, but in the end they are all guessing in some way. (Albeit they are making very educated guesses.) In my opinion, you should talk with your doctor and map out a plan that meets your needs, balancing the ongoing toxicity against keeping the beast at bay, and possibly adjust it based upon how comfortable you are with the associated quality of life changes.
Hope this helps,
Russ
I also have an IgA Kappa myeloma with a t(4:14) diagnosed in February, 2011. Went through 4 cycles of RVD induction followed by an ASCT (after two months off the meds, which seems to be atypical). 25mg Revlimid (2 weeks on/1 off), 1.3mg/m2 Velcade (twice weekly with the Revlimid schedule), and 20mg Dex day of and after Velcade. I was blessed with a sCR verified by a biopsy just prior to the transplant. (Thank you, God!)
After about three months of recovery post-transplant I underwent another 4 cycles of RVD consolidation. Similar to the induction, the only changes were a bump down of Revlimid to 15mg, and the Velcade schedule was simply moved to once weekly.
Currently I am on RV maintenance at 5mg Rev (2 on/1 off) and Velcade every other week. The Velcade is in there based on my risk factors, several studies showing improved outcomes with Velcade, and the fact that I have tolerated it well so far. How long do I go? I don't know at this point - We (my doctor and I) will re-evaluate around two years out.
One thing to bear in mind with treatment plans - There are really no hard and fast rules to this. There are a lot of very intelligent doctors out there who have their own ideas as to what's best, but in the end they are all guessing in some way. (Albeit they are making very educated guesses.) In my opinion, you should talk with your doctor and map out a plan that meets your needs, balancing the ongoing toxicity against keeping the beast at bay, and possibly adjust it based upon how comfortable you are with the associated quality of life changes.
Hope this helps,
Russ
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Russ - Name: Russ
- Who do you know with myeloma?: Me, Myself, & I (and a few others)
- When were you/they diagnosed?: February 2011
- Age at diagnosis: 41
Re: What regimens are those with t(4:14) myeloma taking
Russ - Are you using Velcade SQ or infusion?
I guess I should mention that my initial therapy was Velcade twice a week for two weeks then a week off. In addition I had Cytoxin once a week. I was almost to remission (by IGA numbers) when they decided to do the stem cell gather. I was off medication for almost two months because of delays and then I never recovered back to where I was IGA-wise before they did the SCT. I did go into complete but not molecular remission. I am now 4 months out from SCT but having some breathing problems that they are investigating before they put me on the Revlimid.
I guess I should mention that my initial therapy was Velcade twice a week for two weeks then a week off. In addition I had Cytoxin once a week. I was almost to remission (by IGA numbers) when they decided to do the stem cell gather. I was off medication for almost two months because of delays and then I never recovered back to where I was IGA-wise before they did the SCT. I did go into complete but not molecular remission. I am now 4 months out from SCT but having some breathing problems that they are investigating before they put me on the Revlimid.
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slegier
Re: What regimens are those with t(4:14) myeloma taking
Russ - Have you incorporated curcumin in your regiment?
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slegier
Re: What regimens are those with t(4:14) myeloma taking
slegier,
SubQ Velcade had not been approved yet when I started induction, and I just haven't switched over for a number of reasons. While I am needle phobic, and probably would much rather have a simple shot than an IV, I have not had any site reactions nor PN with the IV. I also get Zometa every other month, so I need an IV for that, as well.
I have incorporated curcumin into my routine, but only did so really post-transplant. My transplant doc didn’t have any personal animosity to supplements, but asked that I not take any other than B6 and D prior to the transplant. (He showed me a journal article he wrote in regards to a patient who failed to engraft, and they traced it to the ingredients in the random “men’s health” supplement he was taking right up to transplant day. It was suggested to me that I really do not want to be a footnote in a medical journal, and I agreed.) I take 8g a day, and have discussed it with my docs who are on board.
For myself, I was real nervous with the idea of single agent Revlimid as my maintenance routine, and it was agreed that we should go a little further even though it is not the standard. (But hey – One size DOES NOT fit all.) My doc and I are also sorting out the length of the routine, as continuous therapy until the end of time brings its own risks.
Regards,
Russ
SubQ Velcade had not been approved yet when I started induction, and I just haven't switched over for a number of reasons. While I am needle phobic, and probably would much rather have a simple shot than an IV, I have not had any site reactions nor PN with the IV. I also get Zometa every other month, so I need an IV for that, as well.
I have incorporated curcumin into my routine, but only did so really post-transplant. My transplant doc didn’t have any personal animosity to supplements, but asked that I not take any other than B6 and D prior to the transplant. (He showed me a journal article he wrote in regards to a patient who failed to engraft, and they traced it to the ingredients in the random “men’s health” supplement he was taking right up to transplant day. It was suggested to me that I really do not want to be a footnote in a medical journal, and I agreed.) I take 8g a day, and have discussed it with my docs who are on board.
For myself, I was real nervous with the idea of single agent Revlimid as my maintenance routine, and it was agreed that we should go a little further even though it is not the standard. (But hey – One size DOES NOT fit all.) My doc and I are also sorting out the length of the routine, as continuous therapy until the end of time brings its own risks.
Regards,
Russ
-
Russ - Name: Russ
- Who do you know with myeloma?: Me, Myself, & I (and a few others)
- When were you/they diagnosed?: February 2011
- Age at diagnosis: 41
5 posts
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