[Reinie]

Stem cell transplant or not?

by Reinie on Sat Nov 08, 2014 4:29 pm

Hi,

I was diagnosed with multiple myeloma in August 2014. I am completing my 4th round of treatment which includes Velcade, dexamethasone and cyclophosphamide along with a monthly pamidronate iv bone strengthener. I am responding extremely well to the treatment and feeling good ) I am extremely optimistic and have no secondary health issues.

My doctors want to do 2 stem cell transplants and this is where my questions come in. I have been reading many stories of people who chose not to have a transplant and are doing really well. I understand that everyone is different and many variables come into account although is it possible to go on a low dose maintenance program following my chemo and prolong or better yet forego the transplant??

I am eating healthy, exercising, getting acupuncture and am searching for an integrative oncologist in the Toronto area to ensure that I'm taking all of the necessary supplements.

Any advice or opinions would be greatly appreciated I am seeing my doctor on November 13th to discuss the transplant and want to ensure that I have all of the right questions ;()

I am grateful to have found this site! It's reassuring to find others who can relate to what your going through! There is so much you don't know and so many questions after being diagnosed, thanks to you all

[Multibilly]

Re: Stem cell transplant or not?

by Multibilly on Sun Nov 09, 2014 8:56 am

Reinie,

This is a very reasonable question to be asking.

Below are a couple of links that gets into the question of whether to transplant or not.

If you go the non-transplant or delayed-transplant route, I might envision the doctor extending your current induction therapy out to essentially become a consolidation therapy and then graduate you on to low-dose maintenance, while adjusting doses (and perhaps even the drug mix) along the way. Admittedly, all these treatment phases can get quite blurred, especially in a non-transplant setting. But if you want to go this route, I think you need to make it clear with your doctors ASAP what your intentions are so that they can adjust your treatment program accordingly.

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

https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html

[Mark11]

Re: Stem cell transplant or not?

by Mark11 on Sun Nov 09, 2014 5:30 pm

Hi Susie,

The big question I would have is if the transplants will keep you off drugs after you have completed them. I did a tandem auto-allo back in 2011 and my QOL is currently back to pre-diagnosis levels (other than the damage the myeloma did to my back) since I am currently off all pharmaceutical drugs other than Zometa once every 3 months for my bones.

Dr. Rajkumar wrote an excellent paper about maintenance therapy that was discussed in this thread:

"Dr. Rajkumar on maintenance therapy," Beacon forum thread started May 1, 2014

In the paper discussed in that thread, Dr. Rajkumar wrote:

When these studies were first published, I had pointed out reasons why caution is needed, and stated that we need more data to determine whether all patients should receive post-transplant maintenance with lenalidomide.4 I still feel that way. But why would someone like me who has worked with lenalidomide from the outset not recommend routine maintenance? What is it that I am worried about?

"Let us first examine the setting: post-transplant maintenance therapy. Autologous stem cell transplantation is not curative in myeloma but prolongs overall survival. Subsequently, three randomized trials found that the timing of stem cell transplantation (early vs transplant at first relapse) does not affect overall survival, but we generally favor early stem cell transplant since it provides a longer time without therapy or toxicity. Routine maintenance, even with an orally administered, well-tolerated drug, threatens the concept of “time without therapy,” which in fact is the major allure of early autologous stem cell transplantation.

IN FACT, INDEFINITE MAINTENANCE UNTIL DISEASE PROGRESSION VIRTUALLY ENSURES CONTINUOUS LIFELONG DRUG THERAPY FOR MYELOMA PATIENTS, AT A TIME WHEN MEDIAN OVERALL SURVIVAL FOR YOUNGER STANDARD-RISK PATIENTS IS APPROACHING > 10 YEARS. A clear overall survival benefit will still justify this approach, particularly if therapy is reasonably well tolerated. Chronic myelogenous leukemia is a good example in this situation. However, we simply do not have data that survival is convincingly prolonged, at least as of now. Even in the U.S. study that found a survival benefit, we know that not all subgroups derived an improvement in survival. And we do know that some patients can be harmed."

http://www.ascopost.com/issues/may-1,-2014/maintenance-therapy-in-multiple-myeloma.aspx    

Here is another good thread to read about the side effects of Revlimid as a maintenance drug. QOL is very important to me, so continuous therapy is something I am trying to avoid at all costs.

"Side effects of Revlimid as maintenance drug," Beacon forum thread started Jul 12, 2010.

Good luck with your decision. There are many threads discussing autos and the QOL of patients taking never ending cycles of myeloma drugs. The search box for the forum is your best friend!

Mark

[LisaE]

Re: Stem cell transplant or not?

by LisaE on Tue Nov 11, 2014 12:50 am

Hi Susie,

If you're in Ontario, then Cancer Care Ontario's Myeloma protocols will determine what's easy to get and what's hard to get. Princess Margaret has an excellent myeloma centre.

My husband had a fantastic response to CyBorD, but developed lung scarring from the Cytoxan. That's extremely rare, and was discovered during pre-transplant testing. We choose to move ahead with stem cell collection while they determined what the problem was with his lungs. Because it's 99% certain to be the Cytoxan, high-dose melphalan was determined to be too risky so we did not go to transplant.

Getting scheduled for the collection is MUCH more difficult than getting scheduled for the outpatient transplant here, and that's likely true in Toronto as well. Whether or not you choose to go ahead with early transplantation, you probably want to have the collection done if you've had a good response.

We're in BC, and here it's not common to use maintenance treatment. You and your doctor can request it if there's a compelling reason, but it's not normally given under the current protocols. We chose to "watch and wait" rather than have additional cycles of chemo. If and when he re­lapses, we'll likely be offered RVD [Revlimid, Velcade, dexamethasone] under the com­pas­sion­ate access program since he can't use Cytoxan.

[Nancy Shamanna]

Re: Stem cell transplant or not?

by Nancy Shamanna on Tue Nov 11, 2014 10:26 am

Hi Susie, I have also heard that there is a trend towards having two auto transplants in Ontario. Just listening to myeloma specialists at the last annual Myeloma Canada conference in Edmonton, AB, made me aware of that too. It is not an issue for me, since I had my auto transplant almost five years ago. This is the sort of protocol used in some treatment centres in the US, as I have gathered from my reading on the Beacon.

If I may put on my 'advocate' hat, I have a question too. If there were more treatments available to us, such as Pomalyst, or Kyprolis, would this advice be the same?

I had the opportunity to attend an 'advocacy' summit last week in Toronto, sponsored by Myeloma Canada. As you probably know, each province has its own set of treatments paid for by the provincial government. In Ontario, there was a 'Myeloma Awareness Day', held at Queen's Park (the legislature), last Wednesday, November 5. The number 1 'ASK' is to have more accessibility to Velcade. i.e. It needs to be available both for induction chemo and for treatment on relapse, if one relapses.

As a country of myeloma patients, I think the no. 1 'ASK' is for Pomalyst to get thru the Candadian Drug Pricing Review. THEN, we can advocate for its inclusion in our provincial formularies. I for one will feel reassured when Pomalyst is available here, outside of the 'special access' program currently available. That program is set to expire for new patients as of December 31, 2014. I don't need Pomalyst yet, but who knows ?? And it is reported to be a good drug for us too.

[Nancy Shamanna]

Re: Stem cell transplant or not?

by Nancy Shamanna on Wed Nov 12, 2014 11:11 am

Hi again Susie! I am afraid I may have bombarded you with TMI yesterday (too much information!). Sorry about that. As a newly diagnosed patient, you will have a lot on your plate initially navigating the landscape of myeloma treatments. Please keep us posted on what you decide to do, and whether you can find an integrative oncologist in the TO area.

When I had my ASCT in January 2010, I did ask afterwards whether I would be getting a second transplant. Enough stem cells had been harvested for at least two of those. But since I had responded well to the first transplant, that was not deemed to be necessary, and those stems cells are still frozen down in storage!

But the decision to do two transplants as a treatment program is used sometimes, as we know. Being an older patient than you are now, by nearly 20 years, I am very hesitant to ever undergo another transplant. That's probably one reason why I am really interested in advocacy for the newer drugs and also for improvements to our health care system that could benefit myeloma patients!