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Remission without relapse - can it happen?

by dogmom on Mon Jan 25, 2016 11:08 am

Has anyone ever gone through induction therapy and a stem cell transplant and had no relapse ever?

I guess this is too much to hope for, but just thought I would ask?

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58

Re: Remission without relapse - can it happen?

by JimNY on Mon Jan 25, 2016 12:09 pm

Basically what you're asking is whether some people can be cured of their multiple myeloma. As you might expect, this is a frequent topic here in the forum (just do a forum search on the keyword "cure").

If you define cure the way you have, which is no relapse whatsoever after initial treatment, then I think it fair to say that this happens only very rarely unless the patient's initial treatment includes an allogeneic (donor) stem cell transplant.

JimNY

Re: Remission without relapse - can it happen?

by dogmom on Mon Jan 25, 2016 2:34 pm

Yes, I am sure that is true. I am a med tech and have worked in the field all of my life. Running tests on blood, CSF, urine, etc., is what I know. That side of me knows the answer, but in this case the scared wife wishes it could be more. I guess all I can hope for is a long-term remission. Time to find that cure.

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58

Re: Remission without relapse - can it happen?

by Ron Harvot on Mon Jan 25, 2016 3:11 pm

Many people can be in a remiisive state without a full remission and be stable for many years. I define a remissive state as one in which there is low level stable disease. Ongoing maintanence treatment may exist but the disease is in check and not progressing. For example a person could have a low M spike of say .2 that goes on for years but it does not progress. For a full remission there would have to be no evidence of the disease though all the standard tests plus no evidence in the bone marrow.

So can a person have low level disease kept in check indefintely wihtout a relaplse? I believe it is more common than those having long term complete remissions. How common, don't know if any studies exist on the topic.

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Remission without relapse - can it happen?

by Nancy Shamanna on Mon Jan 25, 2016 4:03 pm

An article by Dr. Vincent RajKumar, from 2013, discusses the topic of low residual disease. He seems quite optimistic that patients will survive longer than previously, with the newer novel drugs. In his article, he mentions Revlimid and Velcade, but now there are other myeloma treatments too.


URL to article: https://myelomabeacon.org/news/2013/08/10/complete-response-multiple-myeloma-treatment/

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Remission without relapse - can it happen?

by dogmom on Mon Jan 25, 2016 4:14 pm

That is a very interesting article. I take away that you do not have to have a complete response to live a long productive life with myeloma.

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58

Re: Remission without relapse - can it happen?

by Ron Harvot on Mon Jan 25, 2016 4:29 pm

Yes you can have a long productive life without having achieved a complete respons or MRD negative status. I personally am going into year 7. My anniversary is in two weeks.
I work full time, am very active physically through biking (did over 5,000 miles last year), and travel for both work and pleasure, including two trips to Europe for "biking" vacations.

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Remission without relapse - can it happen?

by JPC on Mon Jan 25, 2016 5:18 pm

There was a study posted just last year by Dr. Andrejz Jacubowiak (I hope the spelling is close) from the U. of Chicago Med Center that had a previously not used and not studied induction regimen of Kyprolis-Rev-Dex as initial induction; single ASCT; KRD consolidation; and KRD maintenance.

The KRD regimen was reported to have achieved response rates pretty much greater than any other I have seen, with responses of CR and MRD - of over 80%. Responses kept improving including in the maintenance stage. The regimen was so new that they could not calculate progression free survival (PFS) yet (not to mention OS).

It is generally true that when a new regimen comes out that has better response than an older regimen, that the new regimen will turn out to have better PFS and OS. There is recent data on PFS and OS from the Cal-GB and IFM studies on RVD-ASCT-maintenance. One can hope that the Jacubowiak approach will ultimately come to show better results. I will go a bit farther than that and speculate that it is more likely than not that the results of KRD-ASCT-Cons-Maint will be noticeably better than the current standard of care, and I hope by a wide margin. On top of that, adding Elo and Dara into the mix should help further; and where Elo has been studied in a four drug regimen with RVD, the overall side effect profile has been no worse than RVD.

The Kyprolis "on-label" approval has not yet made it into the front line, however, I have heard at some centers this year, that the better insurances are starting to approve KRD for initial induction, but this has occurred only in the last half of 2015. I understand that there are those that would like to see and rely on the hard data. That data will be valuable, but will take some time. In the meanwhile early reports are good, and the next thing to check for is if the KRD regimen has better PFS than RVD and CyBorD, and by how much is PFS improved. The other thing that I have heard that I am optimistic about is that Kypolis, elo, and dara all appear at this early stage to perform better against some of the major cytogenetic abnormalities.

Finishing the thought to Dogmom's original question and all the good comments on this thread, all of these possibilities that I discussed would probably still not get to permanent complete remission, but hopefully are very good steps in the right direction until we do get there.
Last edited by JPC on Mon Jan 25, 2016 5:22 pm, edited 1 time in total.

JPC
Name: JPC

Re: Remission without relapse - can it happen?

by Nancy Shamanna on Mon Jan 25, 2016 5:21 pm

Good luck to you, Cathy! Hope that your husband does really well! In the last seven years, I have had quite a lot of different 'chapters' in my life with myeloma: initial dx with compression fractures, which were very painful/ induction chemo/ Auto stem cell transplant/ one year on low dose Revlimid/ about 3 1/12 years on no treatments (myeloma not detectable for some of that time), and then the last 18 months on treatment again, with Revlimid/Dex.

I am again at a really low level of myeloma, but of course am nervous about the disease. (Who wouldn't be??) The truth is though, i am able to live al nice life too! I work part time, volunteer, sing in a choir, try to get enough exercise, enjoy my family and especially being a 'nana' to my two wonderful grandsons! I am so grateful to have reached this stage of my life.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Remission without relapse - can it happen?

by Richard in Boca on Sat Aug 20, 2016 12:26 pm

I was diagnosed 2005 and had a stem cell transplant with my own cells in 2006. Starting in January 2007 I began the standard treatment of dexamethasone and Revlimid, It is now August 2016 and I am still able to live alone and exercise 4-5 times a week, bike ride, and travel for pleasure. Outside of the normal side effects, my blood values have been stable and I look forward to many more years doing what I enjoy doing. Growing old can't be helped but it beats the alternative of dying young.

Good luck and call each day as a remission and not a cure.
Richard

Richard in Boca

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