[Terri Michigan]

Trip to Chicago for a second opinion

by Terri Michigan on Thu May 01, 2014 11:09 pm

Toady I had my trip to Chicago for a second opinion.

The doctor I consulted with is a multiple myeloma specialist & they do stem cell transplants there. His advice was to start chemo within the month and, after about 4 months, have a stem cell transplant.

I had a very strong felling that is what he would say, as did my local oncologist. I, however, am on the fence about the whole stem cell transplant thing. So he told me to do as much research as I can between now & 4 months or so and make a decision. At the very least, he said I should harvest as soon as I get into remission in case I decide to have one down the road.

He said there is a study going on right now. One case treat with chemo & once you fall out of remission again then do the stem cell transplant. The other case is to do chemo then stem cell transplant ASAP. He said that, as of now, they have no proof that one way works better then the other.

My husband and sister that I brought along with to help me make this decision, since I am so torn about it all, spoke with 2 women while in the waiting room. One had no stem cell transplant and was doing exactly the same as her friend that had one. The other lady they spoke to had 2 of them a couple years apart & wouldn't have done it any other way.

Needless to say, all of my talk & bringing my reinforcements left me just as confused as before the visit. I know this debate has been gone over so many times ... I can't believe there is no evidence to prove one way is definitely better then the other. Then I also think, why would insurance companies keep paying for stem cell transplant if they don't help.

Any links you can provide on this subject is appreciated and of course any personal advice you have is welcome also. What has made you decide to have or not have the transplant?

Keep fighting everyone & dominate this stupid disease!!! (((Hugs))) to all involved in this journey.

Terri

[Multibilly]

Re: Trip to Chicago for a second opinion

by Multibilly on Fri May 02, 2014 6:54 am

Hi Terri,

Did you see this earlier thread?

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

There is indeed a new trial going on that will attempt to better answer the question of upfront versus delayed transplant from a PFS, OS and QOL standpoint. There is also a similar trial going on in France.

Dr. McCarthy is a key figure in this effort, as is Dr. Paul Richardson.

This youtube will give you an overview of some of the trials he is doing (simple to understand)

https://www.youtube.com/watch?v=vZrO8WPsQWQ

This is a deeper dive on the subject (technical).

http://asheducationbook.hematologylibrary.org/content/2013/1/496.full

And this will give you details on the trial itself.

https://www.roswellpark.org/clinical-trials/list/210611

Lastly, this was an encouraging (with caveats outlined in the video) update from Dr. Nooka at ASCO 2013 on the subject http://myeloma.org/ArticlePage.action?articleId=4119

There is no perfect answer here, so take your time, do your research and evaluate what you think is best for you. Best of luck to you.

[Terri Michigan]

Re: Trip to Chicago for a second opinion

by Terri Michigan on Fri May 02, 2014 1:55 pm

Multibilly, thanks for that list, I thought I saw it before but wasn't sure where to find it again.
I will check out all of the info you have provided. Thanks for your words of encouragement.
Terri

[Multibilly]

Re: Trip to Chicago for a second opinion

by Multibilly on Fri May 02, 2014 3:05 pm

BTW, this is a more detailed overview of Dr. Nooka's presentation, courtesy of the Beacon. Note that he nicely categorizes the PFS comparison data using lots of different criteria and also compares the various response types of the two approaches. The same caveats he mentions in the above video link still apply.

https://myelomabeacon.org/docs/asco2013/Nooka-EarlyVsDelayedASCT-MM.pdf

And here is Dr. Orlowski's presentation on the subject at ASH 2013.

http://www.slideshare.net/spa718/multiple-myeloma-transplant-ravi-vij

And another paper on the subject by Dr. Kumar, et al.

http://www.ncbi.nlm.nih.gov/pubmed/22009602

Cheers.

[Terri Michigan]

Re: Trip to Chicago for a second opinion

by Terri Michigan on Fri May 02, 2014 11:31 pm

Thanks for all of the info. Out of curiosity, what did you decide to do? Did you have the transplant & if so when? How is everything going for you currently?
I am sure you have this all written up somewhere here so even a link to your journey would be great.
Terri

[Multibilly]

Re: Trip to Chicago for a second opinion

by Multibilly on Sat May 03, 2014 12:57 am

I'm smoldering and I have simply been researching this disease. As a smolderer, I do not require treatment. But , I've come to the decision that I will not opt for a transplant as a front line treatment should I progress. I won't currently go quite as far as saying I won't consider it as a salvage therapy should I later relapse or become refractory, but that would also be my leaning.

It largely came down to me deciding that I didn't want to fundamentally wipe out my own immune system and take on the down time, lifestyle limitations and many risks of a transplant, including the very real chance that the transplant simply wouldn't work or only provide me with a very temporary improvement. I simply feel that with the current drugs and newer drugs on the horizon, coupled with their documented good success, that it simply isn't worth going through a transplant.

Making this decision as a smolderer was really quite liberating for me. Having a game plan, should I progress, eliminated a lot of my stress and worry about the disease and really allowed me to intellectualize my condition.

But don't get me wrong regarding my general view of transplants. Transplants have literally saved the lives of some folks on this forum and were there only chance for life for some folks.

You will find folks that would have done it no other way when it comes to their transplant experience. But you will also find folks for which it was a painful and debilitating waste of time and they regret their choice of going forward with a transplant.

To be clear, I'm not condemning their use for others. I'm simply saying that they just aren't my personal choice and that I fully respect the decision of a person to go either way.

You really need to take inventory of your own situation and do your own research and understand what makes sense for you intellectually, lifestyle-wise and spiritually. For a balanced view of your options, I'd also encourage you to seek out the advice of well respected doctors that would not likely consider transplant as a default front line treatment approach. At the same time, it's good to hear the advice of doctors that take the opposite approach and fully embrace transplants.

After all, you have some time to sort this all out.

[Cheryl G]

Re: Trip to Chicago for a second opinion

by Cheryl G on Sat May 03, 2014 2:29 pm

Multibilly has supplied some good links. I thought the Orlowski slide deck was particularly interesting, although I was surprised by his concluding comments because they didn't seem to complete reflect everything that was presented earlier in the slide deck.

Another article worth looking at is this one here at the Beacon,

Early Or Late Stem Cell Transplantation For Myeloma? New Study Finds Both Strategies Yield Similar Overall Survival

As I mentioned in a comment on the article, it's never been clear to me why the article hasn't gotten more attention.

If you read the article, be sure to look at the survival curves. They tell a story which, in my mind, is a bit more nuanced than what you would get from the article abstract or the Beacon's coverage of the article.

What I find interesting about the overall survival curve is how the transplant group survival plateaus at the end. This seems to contradict the criticism that is often leveled against transplantation that it restricts, or makes less effective, treatment options in the long run.

On the other hand, this was not a randomized, prospective trial, so the results have to be interpreted with care. There does seem to be evidence that the early transplant group got better therapy. However, that may be because the early transplant group had more aggressive disease. (I always worry in studies that are not prospective and address transplantation that the early transplant patients may have harder-to-treat disease, since exactly those patients are the ones that you would expect to give more consideration to an early transplant.)

[Terri Michigan]

Re: Trip to Chicago for a second opinion

by Terri Michigan on Sat May 03, 2014 6:59 pm

Thanks for all the added opinions & articles.

Wow, some of you overwhelm me with your knowledge on all this stuff My, I am not that book smart so to speak. I have my own strengths in life & things I do well at, but knowledge isn't my best attribute. Some times I read these things & get totally lost & confused. I like it spelled out in plain old every day terminology. A lot of it goes over my head. But I am doing my best to make a educated decision about what is best for my future. So I appreciate all the advice.

Insurance is different for everyone but just curious, I have already had a 2nd opinion. Do the insurance companies usually pay for more then one consult about this? Or maybe if I wait down the road I could get another opinion?

Also any idea if insurances usually pay to have you harvest cells & keep them stored for later use? This is actually an option I am going to investigate.

I have been lucky that my myeloma has been slow acting. Had my 1st solitary plasmacytoma at @ 45 yrs. Then radiation at almost 50 yrs old, then needing to start treatment right after I turn 50 yrs. If everything could keep going at this pace I could be good for a long time

Thanks for sharing your knowledge & experiences everyone.
Terri

[Mark]

Re: Trip to Chicago for a second opinion

by Mark on Mon May 05, 2014 9:56 pm

Hi Cheryl G.,

Thanks for the informative post.

"What I find interesting about the overall survival curve is how the transplant group survival plateaus at the end. This seems to contradict the criticism that is often leveled against transplantation that it restricts, or makes less effective, treatment options in the long run."

As far as I am aware, only one doctor says this, but I have not seen him or any other doctor show a peer reviewed study that shows that patients that do autos are more difficult to treat later.

Here is another study that would question that "theory". This study was retrospective as well, so all the caveats you mention above apply to this one as well. This was done to show the differences in treatment patterns for relapsed/refractory patients between US, Europe, and Asia.

"We designed a multicenter, retrospective study that enrolled 294 patients with relapsed multiple myeloma, from 14 sites (122 from Europe, 107 from US, and 65 from Korea). Patients were refractory to Bz [bortezomib, Velcade], defined as no response to prior Bz-containing regimen or disease progression within 60 days of a Bz-containing regimen. Patients were also relapsed, refractory, intolerant, and/or ineligible, to treatment with an IMiD (thalidomide or lenalidomide). The date patients satisfied the above entry criteria was defined as time zero (T0)."

"Patients younger than 60 years and THOSE WITH PRIOR TRANSPLANTS WERE MORE LIKELY TO RESPOND to T0 regimens."

https://ash.confex.com/ash/2011/webprogram/Paper43819.html

Mark

[ivanm]

Re: Trip to Chicago for a second opinion

by ivanm on Thu May 08, 2014 11:42 am

If I may offer the following thought. You are 45 years old. You have to have a long term plan and approach for managing the disease. The gruesome reality of multiple myeloma right now is that there is no cure, save for, arguably, allogeneic transplant with 8-10 HLA match donor. The frontline vs. salvage autologous transplant issue is not settled. Moreover, if I recall correctly, the novel agents v. auto/allo is not settled either.

So two things are unclear: whether it makes sense to do a transplant in the first place, and whether, if you do, should it be as frontline or salvage. That said, I'd posit that in the long run it may not matter whether you do it as upfront therapy or salvage therapy, or whether you do it at all. Whatever you do, each therapy becomes less effective as time goes on. If I am not mistaken, this is regardless of the therapy, whether it will be novel agents or auto stem cell transplant, or allo (donor) transplant.

The reason is that the disease has not adapted and has not evolved genetically early on. You will notice that most second generation agents and experimental agents for relapsed patients extend overall survival only marginally, as compared to first generation agents as an upfront therapy.

To put it differently, if you go novel agents + Revlimid upfront, or transplant upfront + Revlimid maintenance, you are buying yourself X number of years. If I recall correctly, right now, X could be as long as 5. Mark and Multibility probably can reference the particular studies.

Then, you will see that that median overall survival may be extended somewhere from a year to several years with a salvage therapy, for e.g. in the case of elotuzomab + Revlimid. Some salvage therapies may be somewhat more effective than others, but, nonetheless, you are looking at a few years at the most, as compared to the effectiveness of the frontline therapy, which could be 5 years.

If you start looking purely at statistics and data, which a rational mind tends to flock to, but may not necessarily be the best approach to adopt spiritually and mentally, you will find out that for a young patient such as yourself, data is discouraging.

Why am I saying all of this? I am saying it because, in the interim, I think you will be fine whether you do an auto transplant upfront or as salvage, or not do it at all (assuming of course you are not refractory to novel agents). However, absent a miracle, i.e. cancer breakthrough in the next 5-7 years, you may be looking at an allogeneic (donor) transplant as the only chance for a meaningful longevity.

Of course, there are some of those that go on Revlimid maintenance for 10 years and such, I wish you to be the lucky one and go on Revlimid to an old age. I personally do not bank on that for myself.

If you decide to go the transplant route, you should carefully consider how it may impact your eligibility for clinical trials. I have not researched this in depth, but some trials for chemo agents do not take allo patients, for example.

Thus, say as an example you've figured out that elotuzomab or PVX-410 is where the future is, and you estimate that you may have to rely on these trial meds prior to FDA approval. It behooves you to make sure that they take transplant patients. I am giving this only as an example of course because these two will likely be approved before you need them.

For myself, I was diagnosed at 37 in 2011. Did an auto stem cell transplant as a follow up to Revlimid-Velcade-dexamethasone, after I was in remission. The allo did not work much for me since I relapsed 4 months after the transplant. Fortunately, Revlimid maintenance has done miracles for me so far.

Other than that, a transplant can be rough. Benefits are dubious. If I was you, I'd stick with novel agents as long as they work and will consider auto or allo transplant when they stop working. Those are things of course you need to solve with your doctor.

Each person is different. I know that, in retrospect, probably I shouldn't have done the auto transplant. Just my perspective as a patient. I am not a doctor.

Anyways, best of luck to you. I think all of us that are younger are in the same boat and we have to help each other and see our kids grow up.