[Mark11]

Re: Repeat initial therapy after 7 years in remission?

by Mark11 on Fri Aug 12, 2016 2:50 pm

Hi Lyn,

Your comments back up what I stated. Twenty seven months is considered a long remission for a relapsed myeloma patient. Wife101's husband had a seven-year drug free remission. That projects to 3.5 years - about twice as long as the 21 months you mention for Ninlaro, Revlimid, and dexamethasone.

You wrote:

I’m not sure that the toxicity of the second stem cell transplant is worth it, especially if there is ongoing maintenance regardless of which treatment you select.

Why do you have to use maintenance? I never used any maintenance. I used high-dose therapy twice in 2011 and have no long-term side effects at this time. Note the Mayo Clinic study.

"Auto-SCT2 has an initial risk of significant toxicity but it may also provide the potential of having a prolonged time off treatment in appropriately selected patients. On the other hand, novel agents such as thalidomide, lenalidomide or bortezomib are associated with a higher risk of grade III or IV toxicities such as neuropathy, myelosuppression and thrombosis."

If the novel agents are associated with a higher risk of grade 3 or 4 side effects, wouldn't that be the therapy to worry about with regard to toxicity?

Mark

[lys2012]

Re: Repeat initial therapy after 7 years in remission?

by lys2012 on Fri Aug 12, 2016 2:53 pm

Hi there!

I am in similar situation. My initial diagnosis was in January 2010 and I did Velcade, high dose dexamethasone, a round of cyclophosphamide, and then an auto stem cell transplant. No maintenance.

I have been in remission until this last year when my M-spike has reappeared and is starting to climb (6 years off all meds).

My doctors have discussed my treatment plan, but have decided to continue with watch and wait until I get more symptoms.

The treatment plan is to repeat my initial therapy, but with slightly altered dose Velcade, with low dose dex (I refuse to do high dose ever again), and with cyclophosphamide plus a second transplant.

It looks like I will probably start treatment in the next 6 months based on my rising M-spike.

So same regimen. Worked well first time, so the thoughts are to do it again, and save the other drugs for another line of treatment. I am young too, only 38, so this dictates some decisions about my treatment and trying to have long windows where I am med free, and saving some meds for later rather then using them all at once.

[kshornb]

Re: Repeat initial therapy after 7 years in remission?

by kshornb on Fri Aug 12, 2016 5:28 pm

Hi Lys and Wife101:

I have just received results after my autologous stem cell transplant and thankfully I am in stringent complete remission (sCR) with minimal residual disease (MRD). Both of you have had tre­men­dous response and a lengthy time without maintenance. I hadn't noticed if you had mentioned what stage and cytology your myeloma was when you were initially diagnosed. If I am stepping out of bounds by asking, my apologies. I just think it's relevant to those of us that may request more information from our doctors that are recommending a maintenance regimen of Revlimid after a transplant if others that were in a similar stage etc., could possibly get by for a period of time med free.

I would certainly like to have some time med free, if it's been done and was successful before.

Thanks for any information you can share.

Kathleen

[Wife101]

Re: Repeat initial therapy after 7 years in remission?

by Wife101 on Fri Aug 12, 2016 7:26 pm

Hi Kathleen,

My husband was stage 1 at diagnosis, only found after a plasmacytoma was discovered and removed. His cytology is normal. He also achieved sCR after his stem cell transplant. The remission lasted 7 years without any maintenance therapy.

Thanks once again to all who have commented and we stand with all multiple myeloma warriors.

Stay strong!

[lys2012]

Re: Repeat initial therapy after 7 years in remission?

by lys2012 on Fri Aug 12, 2016 10:12 pm

Hi,

I don't mind answering. I was never really give a stage.

I was diagnosed with "advanced myeloma". I was diagnosed through the ER then admitted to the internal medicine ward for a bone marrow biopsy to confirm my diagnosis, and was on high dose steroids the same day.

I had a rare issue of hyperviscosity from having a very high M-spike, so I needed to start treatment right away when they finally figured out I had multiple myeloma. I had been going doctor to doctor being unwell for several years. Lived with multiple myeloma at least two years according to my hematologist, so my experience is not really typical.

[JPC]

Re: Repeat initial therapy after 7 years in remission?

by JPC on Sat Aug 13, 2016 7:09 am

Wife,

Best of luck to your husband and yourself. All you can do in decision making is to learn all you can and then let the dice roll. You did your due diligence, tried your best, and you have my wishes that it turns out very positively, like the first line of treatment.

Good luck to you.

[kshornb]

Re: Repeat initial therapy after 7 years in remission?

by kshornb on Sat Aug 13, 2016 7:16 am

Lys and Wife101:

Thank you so much for sharing your information, it has been very helpful.

Lys:

I am so happy to see that even though your disease was already advanced that you have had a very good response. Do you know if you have any chromosome involvement (t(4;14), etc.)?

Kathleen

[lys2012]

Re: Repeat initial therapy after 7 years in remission?

by lys2012 on Sun Aug 14, 2016 1:59 pm

Hi Kathleen,

I have standard risk myeloma. No bad cytogenetics. Sensitive to treatment. I do have youth on my side, relatively speaking for myeloma, and after my transplant I had to do a lot of physical exercise, but got I back into shape, and was back to my active lifestyle and no long-term issues just, some back pains and annoying neuropathy sometimes (like most multiple myeloma'ers)

I think being active, eating well, and other lifestyle factors have helped me keep my myeloma at bay. Be active everyday, drink water, don't take too many toxins like packaged food or even things like NSAIDS (keep the kidneys happy), limit meat (I eat vegetarian most breakfast and lunches), etc.