[Conundrum One]

SCT or no SCT - a confusing decision

by Conundrum One on Wed Apr 29, 2015 10:01 am

Hi group, I am 55yrs old, IgG lambda light Chain, no abnormalities on FISH, ~30% plasma cell neoplasm on bone marrow biopsy, Only "CRAB" symptoms are "Bone" issues in my shoulder and ribs at diagnosis (had 8 rad treatments for these). No other health issues.

Just finished 3rd round of Revlimid, Velcade, and dexamethasone (RVD). My lambda is down from an original of about 5500 and this weeks test shows 20.1 (normal range), kappa has gone up from 3.8 to this weeks test of 6.2 (still in normal range) IgG is Low 302 (orig 470), IgA is Low 56 (orig 101) and IgM is very low <20 (orig 29), Waiting for M-spike results but expect there to be none because last round showed no monoclonal band, originally was 0.2.

It would appear that a I may be in or very close to remission. I have one more round of RVD , then we do all the major testing again and talk about stem cell transplant. I have a couple of questions, first will the immunoglobulins go back to normal after I stop RVD? and second, I am leaning against a transplant and am looking for others thoughts on if they would or would not with these stats, also thoughts on a treatment plan if you chose not to do it.

I have read the studies posted here and also turned down a clinical trial where one are got the transplant and the other arm did not. I would really like to here personal experiences, they seem "real" as opposed to numbers in a report.

I have an appoint at Moffit to see my specialist June 11th and want to discuss all the options I can find.

Thanks for your thoughts!

[Ron Harvot]

Re: SCT or no SCT - a confusing decision

by Ron Harvot on Wed Apr 29, 2015 11:16 am

There is a lot of info on this within the Beacon site. A lot of us have posted our personal experiences both with and without an SCT.

I chose the without route. It has been 6 years and running for me. I lead an very active life style. I work full time, am athletically involved in bicycling competitively and travel. (going to Italy for 3 weeks in May.) I try and not let my diagnosis run my life and so far it has worked for me. My oncologist is not a big fan of ASCT as it is a blunt instrument method. The advantage of not doing the ASCT for me, is that I did not miss any work to undergo the procedure and recovery or have to significantly change my life style

However, it has not been a bed of roses either. I have been in continuous treatment, although at much reduced amounts and intervals. Since 2011 I have been on a maintenance style protocol. I have had very low immunoglobulin readings such as what your test results have shown. As a result in 2012 I came down with a serious infection, Meningitis and C-Diff and was hospitalized for 4 days. As a result by oncologist dropped Revlimid from my treatment and put my on IVIG infusions to boost the immune system. Since then I have responded well and have not had any infections requiring antibiotics since June 2012. I had unrelated heart valve replacement surgery last August and have made a complete recovery. I did a 12 hour 2 man bike race two weeks ago and completed a 60 mile bike rally last weekend.

The ASCT may enable you to have a period of no treatment at all, assuming it is successful and most are. However, you will have to rebuild your immune system which will be destroyed by the chemo before the procedure. This will take time. You will miss work for some period and you likely will be on maintenance for some extended period of time after the procedure. Then, if everything works out, you can have a period of remission where you will be free of any maintenance.

So that is the trade off and there is no right or wrong answer.

I am happy with my decision and others are happy with theirs doing the ASCT.

[coachhoke]

Re: SCT or no SCT - a confusing decision

by coachhoke on Wed Apr 29, 2015 11:17 am

I chose not to have SCT (just RVd). I have many lytic lesions in my back, but they have never been symptomatic. My BMB was 30 per cent plasma cells, M-spike 900 mg/dl, free kappa 1010 mg/L. EVERYTHING ELSE WAS IN NORMAL RANGE. After 9 months of Velcade/Dex my numbers went down to normal range for Kappa and 200 for m-spike. After two years of just Revlimid maintenance everything remains the same so I stopped everything. Most docs wouldn't agree with my decisions, but I feel upon relapse (or disease progression) I will have many options. It's a little more complicated than that (QOL issues, etc.) but that was my decision.
It is indeed a confusing decision.
Good Luck.
Coach Hoke

[bluemountain]

Re: SCT or no SCT - a confusing decision

by bluemountain on Wed Apr 29, 2015 3:10 pm

I did the stem cell transplant and it really did not slow me down much or cause many lifestyle changes. The four days in the hospital getting the kill ya chemo was the worst part by far. I only got sick one time at the hospital and that was from the smell of the food coming off the elevator...gotta say Duke's food at the time was horrible. We had to stay in Durham for 3 weeks but that was not terrible. I felt week but only got sick once and my daily labs were always fine...no fevers, no issues. I also worked VIA internet while at Duke and went back to work about a week after I got home...pretty much full time. I traveled to Central America about 8 weeks after transplant and never got so much as a runny nose. I was week and I am still not perfect and never will be. I have extensive back damage from the plasma cytoma that started this journey but the SCT was not a big deal.

[Multibilly]

Re: SCT or no SCT - a confusing decision

by Multibilly on Wed Apr 29, 2015 3:38 pm

Hi Donna,

Welcome to the forum!

As Ron mentioned, this subject is indeed discussed quite a bit on this forum. Here is a fairly recent opinion article by Tom on the subject:

https://myelomabeacon.org/headline/2015/03/13/myeloma-in-paradise-when-to-get-a-stem-cell-transplant/

The above thread includes a useful set of links from the Beacon staff below:

https://myelomabeacon.org/forum/no-early-stem-cell-transplant-t4838.html
https://myelomabeacon.org/forum/stem-cell-transplant-or-not-t4390.html
https://myelomabeacon.org/forum/upfront-stem-cell-transplant-t4219.html
https://myelomabeacon.org/forum/early-stem-cell-transplant-t3686.html

I also found these threads to be insightful:

https://myelomabeacon.org/forum/anderson-giralt-transplantation-debate-t4201.html
https://myelomabeacon.org/forum/post7776.html#p7776

[Conundrum One]

Re: SCT or no SCT - a confusing decision

by Conundrum One on Wed Apr 29, 2015 6:34 pm

Thanks for all of the links, Multibilly, I have already read most of them and was hoping others with similar stats to mine would share their experiences. As I am leaning against a SCT (unless my multiple myeloma specialist has a very convincing argument), it is good to see that folks are positive about the choice not to have one. The rest of my blood work came back this afternoon and shows no M-spike and No IgG Lambda protein band. At this point (after 3 cycles of RVD) the only thing still out of wack is the IgG, IgM and IgA, which concerns me and I suspect is a result of the Revlimid.

I still have a while till I have to make this decision.

Thanks to all who have responded so far!

[K_Shash]

Re: SCT or no SCT - a confusing decision

by K_Shash on Thu Apr 30, 2015 11:44 am

Hello Donna,

The decision to postpone the ASCT indefinitely may have been a lot easier for me as I am 68 year old now (I expressed all my thoughts and Quality of Life, lost time and the pain concerns in my thread, "Stem cell harvest at 68 & transplant at 75 - why bother?"). However, the other factors I considered were:

I was absolutely Asymptomatic prior to the urine tests showing high protein, which was eventually found to be caused by all the IgG leaking through the Kidneys. Even with 30% Plasma Cell reading from the BMB, 1,073 Kappa reading and numerous lesions on the long bones (none of them big enough to be concerned with, it seems) I was cleared by my Oncologist for all physical activities. My Cytogenetics are "Trisomies only".

I am IgG Kappa and though my Kappa FLC's didn't come down as dramatically in the 3 rounds of RVD, I am responding very well. My HMO doesn't allow Stem cell Harvesting and Storage anymore, either. The new approach is that with the 'novel agents' I can have a successful Stem cell harvest, if and when the ASCT is warranted.

Ron Harvot, Dan from Arizona (who has set the best example for all of us for managing this Myeloma Monster) and many others have managed well on the Maintenance Therapy. Also, I know of half a dozen other Myeloma patients that are doing well for 10 -15+ years on the Maintenance Therapy, from my Physician friends and well known Oncologist-Myeloma Expert my wife works closely with. One of them doesn't even want to change from the old Thalidomide since it has been working for over 15 years.

My Oncologist advised us, and a lot of literature supports that opinion, that there are a dozen or so newer drugs in the 'pipeline' and the RVD like therapy can be available if a patient stops responding to these drugs.

I came to the conclusion that a horrible 6 months wasn't worth the investment for Drug Free 3 years (at best) or possibly gaining 3-years after I am well over 75. However, you are much younger and you would have different considerations.

I assume you have read the discussion on PeggyB's topic: "How did you decide whether to have a SCT or not?"

I am sure I would have thought differently if I had higher Risk factors or if I could not have tolerated the RVD treatment. Again, it is a personal decision and many have done remarkably well during and after the ASCT.

Wishing you all the best.

K_Shash

[Louise Naczek]

Re: SCT or no SCT - a confusing decision

by Louise Naczek on Wed Jun 03, 2015 4:25 pm

Hi,

I have also decided against the SCT. I was diagnosed with myeloma in August 2013.

I am on Rev 21 days, Velcade 2 x a month, and dex 10 pills once a week. I have been doing well on the maintenance. I do pick up infections.

I am still doing research on the transplants. So far I haven't found anything to completely convince me to go ahead with it. My doctor tells me that more & more research is saying to hold off.

Any help with this would be appreciated.

Thank You.

[Rneb]

Re: SCT or no SCT - a confusing decision

by Rneb on Wed Jun 03, 2015 5:47 pm

Diagnosed 5/14/12--surgery--large Plasmacytoma in left frontal Sinus and Rib Fx's. ( Walnut sized sinus tumor)
Standard risk Myeloma.

Starting in July 2012, I responded well , first to Radiation ( extensive) and then Induction with Velcade and dex; I did Prep for, and harvested cells, for SCT; ( ie. doses of Cytoxan, cell stimulators, etc) 4 transplants worth of cells are on ice as of April 2013. ( A Just in case, decision )

Several surgeries since for hip and bone damage; Spinal Injections, etc. I declined SCT in April 2012.

I have done well on low-dose Revlimid (10 Mgs) ( NO DEX) since. Zometa IV 4x/ year, now.
Been in total remission since Dec 2014. ( ZERO M SPIKE--Normal B2, SPEP, etc)
Before that, I was always .1 or .2 since Induction, with good B2, SPEP, etc .

I am back to work on an increasing basis --and am near 80 % of condition / stamina as I was in 2010- 2011--when things started getting "weird" with my body, etc. ( infections, fatigue, bony changes, PN, etc)

Wish I was a stud like Ron and Andy and others, here. I'm not. But I'm functional and can do most everything I need to keep my job and take care of my family (as a single parent).

My MD brother pushed for STC in 2012. I declined. Since 2012--the data seems to increasingly say --you live as long on "maintenance" as you do with SCT--and suffer no adverse results from the SCT process.

Newer drugs and studies seem to validate my decison--however, this is a weird disease--one size definitely does not fit all.

It is an individual decision process.

Good luck.