[baegerter]

Re: Looking for Feedback on Recommended First Round Treatmen

by baegerter on Mon Dec 17, 2012 2:08 pm

I'm not a doctor and I can't say what treatment regimen is best for any one individual. My recomendation would be to get multiple opinions, from respected treatment centers, on both initial treatment and any major change in direction.

People tend to prefer the treatment they've chosen, if successful. Knowledge and options are increasing, but I personally like to make decisions based on numbers (statistics).

For myself, I chose the UAMS protocol which usually includes a tandem transplant. They've seen over 10,000 myeloma patients and they were able to provide at least some of the numbers I was looking for (for example, the presentation at http://myeloma.uams.edu/upload/docs/Myeloma/Cure_of_Myeloma101410.pdf).

Each person is unique, there's a lot of missing data, and myeloma treatment is still somewhat of an art. In the end its a personal decision, you go with it and don't look back, at least until the next decision point, and you pray a lot.

Just my opinion ...

[Mark]

Re: Looking for Feedback on Recommended First Round Treatmen

by Mark on Mon Dec 17, 2012 4:19 pm

Hi Ron,

My apologizies if my post was offensive to you. I had to rush off to Church Sunday AM and should have written that post a bit differently. Input from patients is great and your story is inspiring. It takes "true grit" to continue excercising at the level you are after a diagnosis like Myeloma. Keep it up!

Let me go back to my view on where this thread ended up going. A newly diagnosed patient had written about a potential treatment plan. Take note that he was just diagnosed in Nov . 2012. I tried to post to show the downside to the treatment plant that most (all) of the patients in the thread were presenting as optimal. As we all know, there is not optimal treatment plan in myeloma. Try and put yourself in Multibilly's shoes. He mentions a treatment plan and first gets an advertisement from Suzierose for carfilzomib. She goes on to tell him how terrible his life is going to be because of the PN he will get from bortezomib. How irresponsible was that commentary?

Than we move on and everyone starts discussing how bad everyone's QOL is after an auto. Actually most clinical studies (not patient opinion) say things like this about long term QOL after High Dose Therapy.

"CONCLUSION The intensive treatment programme was subjectively being well tolerated by the majority of patients. The duration of declined quality of life after administration of HDM seemed to be short. The duration of subjective recovery after PSCT remained uncertain, but in any case was present at the 6 month follow-up. Together with the rather good results in survival, the evaluation of quality of life invites further exploration of double transplantations in multiple myeloma."
http://lib.bioinfo.pl/pmid:15654905

QOL is poor during and right after the auto, but they quickly return to baseline for most patients. I would also note that all the people that said QOL was poor after an auto had never done one. I am no fan of auto transplantation because I do not view it as very effective therapy compared to allo transplant. I did have to do one because my Insurance Co would only pay for tandem auto-allo and not Induction to allo like my Doctor and I wanted. I would point out that I felt "normal" (whatever that is anymore!) about one month after the auto. For most patients it does not lead to a poor QOL for the vast majority of patients.

I thought it would be helpful to point out the statistic in my first post because it is one that applies to all myeloma patients. It does not matter if you did "total therapy", never ending cycles of carfilzomib or Velcade along with Revlimid and DEX or allo transplant. If you are relapsed and not responding to those two classes of drugs, the patient has tough times ahead. For example, well known non-transplant myeloma Doctor James Berenson typically recommends Velcade/Doxil/DEX because it is active and does not start resistance to Revlimid early in disease course. It is not necessarily optimal to use the best drugs first. While it is the majority opinion to use Velcade or carfilzomib with IMID with steroid as Induction, but it is not the only way to treat and no study shows that study to increase overall survival in patients.

I hope that clarifies the point of my post.

Mark

[Mark]

Re: Looking for Feedback on Recommended First Round Treatmen

by Mark on Mon Dec 17, 2012 4:31 pm

Hi George,

I agree with you. We needed someone to stop Suzierose's advertisement for carfilzomib with some reality when it comes to side effects. Dr. Paul Richardson of Dana Farber agrees with your point. In this video just taped at ASH he comments at about 60 minutes in that the PN from Velcade is a manageable side effect. He also comments that 1 in 5 patients on carfilzomib have cardio/pulmonary or renal toxicities. He describes those side effects from carfilzomib as "real trouble". Dr. Richardson also says there is not enough data to say carfilzomib is more effective than Velcade.
http://myeloma.org//ArticlePage.action?articleId=3815

Mark

[Mark]

Re: Looking for Feedback on Recommended First Round Treatmen

by Mark on Mon Dec 17, 2012 5:08 pm

Hi Terry L,

The most important question is how are you doing on the trial? I am hoping for some good news. As you can tell I must have been a little "cranky" Sunday AM!!!

I know you have read a lot of my posts. Hopefully you realize that I try and be informative and tend to look at myeloma therapy differently than most because my treatment plan was so much different than most everyone elses. I would point out that I have been posting about the importance of testing for MRD via molecular methods and immunophenotyping for a while. You are "preaching to the choir" when it comes to advanced testing techniques for MRD.

Dr. Richardon mentions in the video that maybe adding elotuzamab or one of the other antibodies to the RVD or CRD platform will be the start of an R-CHOP type of regimine for myeloma. Lets hope so!

Mark

[terryl1]

Re: Looking for Feedback on Recommended First Round Treatmen

by terryl1 on Mon Dec 17, 2012 5:55 pm

Hi Mark, I enjoy your posts a lot. I am in VGPR officially and hoping for an "upgrade". I am waiting for results from my end of the 8th cycle BMB and PET CT which I had this past Friday. Obviously, I am anxious. Truthfully, I am sweating bullets! My disease has gone down 99% as per the FLC assay...I am light chain only and all my blood counts are now normal. My FLC's are a still slightly abnormal, though. I;ll keep you posted. Regards. Terry

[Multibilly]

Re: Looking for Feedback on Recommended First Round Treatmen

by Multibilly on Mon Dec 17, 2012 8:08 pm

Mark wrote:
> Hi Ron,

>
> Let me go back to my view on where this thread ended up going. A newly
> diagnosed patient had written about a potential treatment plan. Take note
> that he was just diagnosed in Nov . 2012. I tried to post to show the
> downside to the treatment plant that most (all) of the patients in the
> thread were presenting as optimal. As we all know, there is not optimal
> treatment plan in myeloma. Try and put yourself in Multibilly's shoes.

No worries about everyone's comments on this thread. They were all appreciated and your concern for my reaction is also appreciated. All the comments on this post have generated a LOT of questions for my doc, who I will talk with tomorrow. What I have discovered is that this is really a chess game where you need to think ahead several moves, and where the chess pieces may also change in nature over time and you also may find yourself quickly playing with some altogether new pieces with clever, new properties along the way.

> ....majority opinion to use Velcade or carfilzomib with IMID with steroid as
> Induction, but it is not the only way to treat and no study shows that
> study to increase overall survival in patients.
>
Thanks Mark. So based on your own experience and earlier concerns about "using up the best chemo treatment first and being stuck in a corner later", just what you recommend I investigate as a front-line course of chemo treatment and which progression and type(s) of transplants would you ideally use, if not VRD followed by an ASCT?

[Ron Harvot]

Re: Looking for Feedback on Recommended First Round Treatmen

by Ron Harvot on Tue Dec 18, 2012 1:41 am

Mark,

So you went the Allo transplant route and were successful. I never seriously considered that route since I was not diagnosed as a high risk patient and didn't want to roll the risk dice. I know doner based transplants offer the possibility of long term remission and in some cases even a cure. However a 20% potential death rate with over 50% GVHD is what also has been published. That level of risk, given my situation was not even considered. You obviously weighed the risk and came to a different conclusion. I note Arnie has posted a piece on his Donor transplant and seems to be doing ok. However, Arnie did not go the Allo route as his first choice for treatment.

Ron

[Ron Harvot]

Re: Looking for Feedback on Recommended First Round Treatmen

by Ron Harvot on Tue Dec 18, 2012 2:02 am

MultiBilly,

The discussion I would have is whether you should have an ASCT now or have your stem cells harvested but put it off until first relapse. The other route is to go more aggressive and do the double ASCT or Total Therapy as advocated by UMAS. Then the most aggressive is the Doner stem cell transplant that Mark went through.

There is no right or wrong answer. There is however risk levels that should be considered.

Sorry if all we did was confuse things by this discussion.

I chose a minimalist route going with the long term cocktail approach with VRD. Mark has pointed out that such course has its own risks as it may lead to a weak immune system long term and cause less options upon relapse. But that is all speculation at this point and new drugs are coming out all the time. So I rolled the dice electing the least invasive approach. Only time will tell if my decision was right but so far it is working.

Good Luck

Ron

[Gary P]

Re: Looking for Feedback on Recommended First Round Treatmen

by Gary P on Tue Dec 18, 2012 10:42 am

MultiBilly, you have been given some really great incite into first level treatments, and I note that a few doctors have chimed in as well. My philosophy had been to find the best myeloma doctors, do all the research that I could, then as your own best advocate make a decision that is right for you. With this in mind I would like to provide you with some bedtime reading. The first is a consensus treatment plan for multiple myeloma patients put together by the worlds most renowned multiple myeloma specialists. This is over a year old, but would not change much in that time frame.

International Myeloma Working Group consensus approach to the treatment of multiple myeloma patients who are candidates for autologous stem cell transplantation

Michele Cavo,1 S. Vincent Rajkumar,2 Antonio Palumbo,3 Philippe Moreau,4 Robert Orlowski,5 Joan Bladé,6 Orhan Sezer,7 Heinz Ludwig,8 Meletios A. Dimopoulos,9 Michel Attal,10 Pieter Sonneveld,11 Mario Boccadoro,12 Kenneth C. Anderson,13 Paul G. Richardson,13 William Bensinger,14 Hans E. Johnsen,15 Nicolaus Kroeger,16 Gösta Gahrton,17 P. Leif Bergsagel,18 David H. Vesole,19 Hermann Einsele,20 Sundar Jagannath,21 Ruben Niesvizky,22 Brian G. M. Durie,23 Jesus San Miguel,24 and Sagar Lonial25, on behalf of the International Myeloma Working Group

You can find it at the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3293742/

To me there is a treatment continuum for multiple myeloma with the "Less is Best" approach of Dr. Berenson(who would say that RVD in the recommended dosing schedule is too toxic) on one end and Bart Barlogie who is at the "More is CURE" at the other end of the spectrum. If you notice neither of them are noted in the above opinion. Those listed above I would call the "Balance approach" or it is by far the majority view, and right in the center of this continuum.

I will send you one other bit of published material from the Mayo Clinic which has their internal consensus opinion for myeloma treatment called mSmart. You can find it at the following link: http://msmart.org/newly%20diagnosed%20myeloma.pdf Good Luck and God Bless/Gary P

[Stan W.]

Re: Looking for Feedback on Recommended First Round Treatmen

by Stan W. on Tue Dec 18, 2012 12:10 pm

Ron Harvot wrote:
> MultiBilly,
>
> The discussion I would have is whether you should have an ASCT now or have
> your stem cells harvested but put it off until first relapse. The other
> route is to go more aggressive and do the double ASCT or Total Therapy as
> advocated by UMAS. Then the most aggressive is the Doner stem cell
> transplant that Mark went through.
>
> There is no right or wrong answer. There is however risk levels that should
> be considered.
>
> Sorry if all we did was confuse things by this discussion.
>
> I chose a minimalist route going with the long term cocktail approach with
> VRD. Mark has pointed out that such course has its own risks as it may lead
> to a weak immune system long term and cause less options upon relapse. But
> that is all speculation at this point and new drugs are coming out all the
> time. So I rolled the dice electing the least invasive approach. Only time
> will tell if my decision was right but so far it is working.
>
> Good Luck
>
> Ron
Ron,
This is still new to me. I was diagnosed with SMM in April 2012. Went to Dr. Jagannath for a second opinion. He explained things in a simplified manner. I'm IgG Kappa. I also went to the NIH where I could have gotten into the Carfilzomib trial or, the trial with oral version of Velcade. I was still in a very confused state. Dr. J didn't consider me hi-risk. NIH did. Obviously the differing protocols doesn't help one decide which way to go.
Dr. Jagannath asked if I'd participate in a trial with a bone strengthening drug (BHQ-880). I accepted. 6 months later and I still don't have any symptoms. I'm due for a BMB and scans next month.
I've been trying to gather as much info as possible. You mention starting with a less invasive approach. Where are you at now and, how are you feeling? Are you still on the cocktail of drugs or, did you do the SCT? This disease and how it affects us so differently sucks! And, the way the drugs and side effects work on us differently doesn't help one to form an opinion. It's somewhat of a leap of faith.
Thanks for you input