Hi Multibilly,
I am glad I make sense to somebody!!!
Just from reading some of your other posts it sounds like the Doctors are still not sure if you need treatment at all. I have read others on the Forum that are struggling with the decision to start treating or not. It must to be tough to try and make that decision. I did not have to worry about that decision. I had 90% plasma cells, 3 compression fractures in my back, pneumonia and a blood clot in my leg. I had no problems knowing I should start therapy ASAP.
I try to avoid recommending Doctors or individual drugs. I do not want anyone to think I am advertising for a specific Hospital or drug. I do make an exception in mentioning Sloan Kettering because they are sponsors of the Beacon. That is a great thing and they should be commended because this site is a great resource for patients. Here is a link to another thread where a patient asked advice about potential allo and I mentioned T Cell depleted allo at Sloan. His experience has been a good one.
https://myelomabeacon.org/forum/post7374.html#p7374
I am not exactly sure if you were asking where to do an allo or just looking for a Doctor that might try to do something different than long cycles of proteasome inhibitors/IMIDs/DEX. You may find this interesting. The study that convinced me to do an allo had nothing to do with allo transplant. Here is what the study said:
"Multiple myeloma cancer cells thwart many of the drugs used against them by causing nearby cells to turn traitor – to switch from defending the body against disease to shielding the myeloma cells from harm – Dana-Farber Cancer Institute scientists report in the October issue of Cancer Cell.
The researchers found that immune-system cells known as plasmacytoid dendritic cells (pDCs) essentially assume a new identity in the presence of myeloma – promoting the growth and survival of malignant myeloma cells, helping them fend off drugs, and depleting the overall strength of the immune system. The discovery not only helps explain a little-understood aspect of myeloma biology, but also suggests a new angle of attack on the disease. Researchers found that compounds that alight on specific sites on pDCs restore the cells' original disease-fighting character and remove a trigger of myeloma cell growth."
""This is the first time that immune system cells have been found to be converted to another function," says Chauhan, who is also a principal associate in medicine at Harvard Medical School. Investigators don't yet know how the conversion occurs, but they suspect the proteins cause a different set of genes to be activated within the pDCs."
http://www.sciencedaily.com/releases/2009/10/091005123043.htm
I figured that by doing the allo early it would make the therapies work better. Studies have come out recently with titles like "the Therapeutic Effect of Lenalidomide Is Enhanced After Allogeneic Stem Cell Transplantation: Results of a Case-Control Study"
https://ash.confex.com/ash/2011/webprogram/Paper43648.html
If you would like to email privately or ask any other questions that would be great. Nothing makes me feel better than reading a post like I recieved from Brian in the other thread.
Mark
Forums
Re: Looking for Feedback on Recommended First Round Treatmen
Well, I had a DEXA scan today that shows good, normal bone density numbers. I also got a second and third opinion on my xrays, PET/CT scans, BMT and earlier bloodwork panels, and everyone is now calling my case smoldering since nobody can find any CRAB involvement.
However, one of the docs did comment on the "significant jump" in my lambda free light chains from early November to early December (it went from 9.1 to 18.2 mg/dL...normal range is 0.57 to 2.63). I realize that two data points don't make a trend, but can one potentially write this off to normal fluctuations at this point or its this truly a very significant jump that I should be concerned with? I will be getting new urine and serum tests in 2-3 weeks as part of an ongoing monitoring effort and that will obviously give me an important new data point. But I'd appreciate any comments in the meantime.
However, one of the docs did comment on the "significant jump" in my lambda free light chains from early November to early December (it went from 9.1 to 18.2 mg/dL...normal range is 0.57 to 2.63). I realize that two data points don't make a trend, but can one potentially write this off to normal fluctuations at this point or its this truly a very significant jump that I should be concerned with? I will be getting new urine and serum tests in 2-3 weeks as part of an ongoing monitoring effort and that will obviously give me an important new data point. But I'd appreciate any comments in the meantime.
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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 Feedback on Recommended First Round Treatmen
I chose the SCT because I was working with two onocologists one in Rapid City S,D, and the other in Omaha because the hospital at Rapid City didn't do them and the University of Nebraska Medical Center in Omaha was a primary provider for my insurance. That was the best decsion I have made. I still am going to both centers though the doctors have changed because of career changes.My experiences during to SCT, I felt were not life threatening and if were not for the other (blood and urinary infections) problems it wasn't that bad. I 'm starting my maintenance program today with only Revlimid and later Zometa. I trust my doctors to do the best they see fit and the outcome for me is great. I am also diabetic so some of the same symtoms can be blamed on either one as, 
of this day I have no nerve problems to speak of and only have a few concerns with bone involement which have been addressed. Things are looking good and will continue into the future. My transplant date was 6-6-2012. I recieved Velcade with an injection prior to SCT on a four month cycle.
of this day I have no nerve problems to speak of and only have a few concerns with bone involement which have been addressed. Things are looking good and will continue into the future. My transplant date was 6-6-2012. I recieved Velcade with an injection prior to SCT on a four month cycle.-
WJPetersen
Re: Looking for Feedback on Recommended First Round Treatmen
Latest abstract from the 2013 ASCO on early versus delayed ASCT. Conclusion: Transplantation-eligible patients who receive RVD as initial therapy followed by early vs. delayed ASCT result in comparable overall survival. In carefully selected newly diagnosed myeloma patients with lower ISS stage receiving RVD as induction therapy, planned delayed ASCT results in 5-year survival rates close to 90%.
Thought it good to include it with this thread.
http://meetinglibrary.asco.org/content/117675-132
You can find a lot of incredible, cutting edge information here:
http://abstracts2.asco.org/ConfCatView_132_S.html
Just type in "myeloma" or your favorite search word such as a multiple myeloma drug (you may have to use alternative names like carfilzomib instead of kyrpolis).
While some of the abstracts are pretty heady, many are very understandable for the layman.
Thought it good to include it with this thread.
http://meetinglibrary.asco.org/content/117675-132
You can find a lot of incredible, cutting edge information here:
http://abstracts2.asco.org/ConfCatView_132_S.html
Just type in "myeloma" or your favorite search word such as a multiple myeloma drug (you may have to use alternative names like carfilzomib instead of kyrpolis).
While some of the abstracts are pretty heady, many are very understandable for the layman.
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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 Feedback on Recommended First Round Treatmen
Thanks, Multibilly, for the link to that ASCO abstract.
One of the things I've learned over time, mainly as a result of reading articles here at the MB, is that you have to read abstracts really, really carefully to make sure you pick up all the relevant details.
So, for example, in the case of this study, a couple of things that are important are not necessarily clear unless you look really closely. For example
- The patients in the delayed transplant group didn't just get a delayed transplant (or none at all if they didn't relapse). They also got *maintenance therapy* after their RVD induction therapy. See the following language in the abstract: "delayed transplant (received planned maintenance therapy after collection with intent to proceed with ASCT at first relapse ...)" It's not clear that the upfront transplant group also got maintenance therapy; probably some did, and some didn't.
- This wasn't a randomized trial, with patients being randomly assigned to one therapy versus another. Instead, the doctors and patients chose whether to do a transplant up-front or with a delay, probably based at least partly on each patient's response to induction therapy. That's pretty clear from the characteristics of the patients in the two patient groups. 31 percent of the upfront transplant patients had stage 3 disease, compared to only 10 percent of the delayed transplant group. High-risk cytogenetics also were more common in the upfront transplant group versus the delayed transplant group.
Most likely, what you are seeing in a comparison of these two groups, given that this is a retrospective analysis, is what you would expect to see, namely: The patients who got upfront transplants were the patients who had more advanced disease and disease which did not respond as well to to induction therapy. That's why their doctors advocated that they get an upfront transplant.
On the other hand, the patients who got induction+maintenance+a delayed transplant at relapse were probably those who responded well to induction therapy, which is why their doctors didn't push for a transplant up-front.
So should we be surprised that (a) the delayed transplant group had a high 5-year survival, particularly since they were given maintenance therapy, and (b) the delayed transplant group had higher 5-year survival than the upfront transplant group?
I'm not saying that this isn't an interesting study. I'm just saying that we should be careful about drawing too many conclusions based on its results.
One of the things I've learned over time, mainly as a result of reading articles here at the MB, is that you have to read abstracts really, really carefully to make sure you pick up all the relevant details.
So, for example, in the case of this study, a couple of things that are important are not necessarily clear unless you look really closely. For example
- The patients in the delayed transplant group didn't just get a delayed transplant (or none at all if they didn't relapse). They also got *maintenance therapy* after their RVD induction therapy. See the following language in the abstract: "delayed transplant (received planned maintenance therapy after collection with intent to proceed with ASCT at first relapse ...)" It's not clear that the upfront transplant group also got maintenance therapy; probably some did, and some didn't.
- This wasn't a randomized trial, with patients being randomly assigned to one therapy versus another. Instead, the doctors and patients chose whether to do a transplant up-front or with a delay, probably based at least partly on each patient's response to induction therapy. That's pretty clear from the characteristics of the patients in the two patient groups. 31 percent of the upfront transplant patients had stage 3 disease, compared to only 10 percent of the delayed transplant group. High-risk cytogenetics also were more common in the upfront transplant group versus the delayed transplant group.
Most likely, what you are seeing in a comparison of these two groups, given that this is a retrospective analysis, is what you would expect to see, namely: The patients who got upfront transplants were the patients who had more advanced disease and disease which did not respond as well to to induction therapy. That's why their doctors advocated that they get an upfront transplant.
On the other hand, the patients who got induction+maintenance+a delayed transplant at relapse were probably those who responded well to induction therapy, which is why their doctors didn't push for a transplant up-front.
So should we be surprised that (a) the delayed transplant group had a high 5-year survival, particularly since they were given maintenance therapy, and (b) the delayed transplant group had higher 5-year survival than the upfront transplant group?
I'm not saying that this isn't an interesting study. I'm just saying that we should be careful about drawing too many conclusions based on its results.
Re: Looking for Feedback on Recommended First Round Treatmen
Thanks Ricardo,
All great points for everyone to consider.
All great points for everyone to consider.
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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 Feedback on Recommended First Round Treatmen
Just to reinforce something Multibilly said ... If you are going to search the ASCO abstracts, it is definitely best to use generic drug names like lenalidomide and bortezomib rather than brand names like Revlimid and Velcade. It's pretty rare for abstracts to use brand names in either their titles or text.
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StillWalking
Re: Looking for Feedback on Recommended First Round Treatmen
Just did a quick test to confirm what I posted above about using generic drug names versus brand names when searching ASCO abstracts.
If you do a search for "Revlimid", you get one abstract. On the other hand, if you do a search for lenalidomide, you get 82 abstracts.
So generic names are definitely the way to go.
If you do a search for "Revlimid", you get one abstract. On the other hand, if you do a search for lenalidomide, you get 82 abstracts.
So generic names are definitely the way to go.
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StillWalking
Re: Looking for Feedback on Recommended First Round Treatmen
For completeness of this thread, I thought I'd ask this new question here. I'd be very curious to hear people's experience with the combo of doxorubicin, Velcade and Dex as an initial treatment for new diagnosed multiple myeloma patients. Note that I am not currently considering an ASCT and I am investigating treatment through the use of chemo only at this time.
If I get no responses on this thread, I might post this same question as a new topic.
Thanks in advance.
If I get no responses on this thread, I might post this same question as a new topic.
Thanks in advance.
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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 Feedback on Recommended First Round Treatmen
I was finally diagnosed in May 2013 with Stage 3 multiple myeloma, Lisons everywhere, and 92% plasma cells in my biopsy. I had a Hg level of 9.7 and elevated pulse rate. I am 68.
I have been through two cycles of RVD supplemented with VALTREX, Aspirin, etc. My Hg is now back to 13, my bone pain has gone ,and I during my off week I feel better than I have in years. My pulse rate has gone from 75 down to 60. I am riding my bike again-- although gingerly.
I also take Curcumin and eat a lot of antioxidant foods daily.
For me it is working great. Apparently a lot depends on the result of the FISH test and Cromosome testing. Hope the improvement continues.
Best of luck to you.
I have been through two cycles of RVD supplemented with VALTREX, Aspirin, etc. My Hg is now back to 13, my bone pain has gone ,and I during my off week I feel better than I have in years. My pulse rate has gone from 75 down to 60. I am riding my bike again-- although gingerly.
I also take Curcumin and eat a lot of antioxidant foods daily.
For me it is working great. Apparently a lot depends on the result of the FISH test and Cromosome testing. Hope the improvement continues.
Best of luck to you.
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Pjorg45 - Name: Paul Jorgensen
- When were you/they diagnosed?: May 1013
- Age at diagnosis: 68