[Castaway]

Complete response, but doctor wants to add Revlimid

by Castaway on Wed May 20, 2015 2:35 pm

Hello all,

I wanted to see if I can get some opinions on my current treatment and what my oncologist wants to add.

Sometime in November, I received a call from my oncologist that I had reached a complete response. I was diagnosed in January 2014 at Stage 3 IgA. My first treatment was 25 mg Revlimid and 40 mg dex per week. All went well until I had a reaction to Revlimid (rash).

With that said, my treatment changed to Velcade / dex. The Velcade seemed to work extremely well, and my bone marrow biopsy (BMB) indicated a complete response. My SPEP and IFE had shown no monoclonal protein.

At that point, I was told that a stem cell harvest should be done, and I did so, collecting a little over 5 million cells. My plan all along was to do the cell collection first and wait about a year to do the transplant due to several commitments.

I am still showing very good labs, with both IFE and SPEP showing no monoclonal protein. Although I worry every time I have the draw, then wait for the results.

So, I get to my concern about my visit with my oncologist yesterday. He wants to add 15 mg of Revlimid for 21 days on, 7 days off, to my current Velcade / dex until my transplant sometime next February or March. I kind of question this move. There is a study showing that the rash issue that a lot of people have is not so much the Revlimid itself but the high dose like I had at 25 mg. So its possible that I could tolerate the lower dosage. But why add the Revlimid at all is my question.

Would that deepen my response even more and hold me over till next year? And couldn't I just stay on what is working now with Velcade / dex. I am on a lower maintenance of Velcade / dex since my harvest in March. I was doing Velcade on days 1, 4, 8, 11 and dex at 40 mg once per week. Now my Velcade is once per week for 4 weeks, then a week off. Dex is now at 20 mg once per week.

Any thoughts on this?

Thank you, Castaway

[Bar-none]

Re: Complete response, but doctor wants to add Revlimid

by Bar-none on Wed May 20, 2015 10:53 pm

Hi Castaway,

Oddly, I did not have the Revlimid rash at all with the 25 mg, only dry skin. Then, after my transplant, I did 2 more cycles of consolidation with 25 mg and still no rash.

Then I start 10 mg maintenance, and here comes the rash. The good news is that a Zyrtec usually took care of the itching and now it has gone away after a time.

Would definitely address your concerns directly with your doc at your next appointment.

All the best! BN

[Castaway]

Re: Complete response, but doctor wants to add Revlimid

by Castaway on Thu May 21, 2015 9:41 am

Bar-none,

Thanks for your input. The rash that I had didn't have any itching issues. but it did cover 60% of my body. I guess that I am more concerned about adding Revlimid to my current treatment of Velcade and dexamethasone that has worked very well on its own. My oncologist feels that it would help keep me at a complete response until my transplant next March.

I just feel that its one more drug that I might not need to take while I wait for the transplant. My feelings were that I could be on one or the other. Revlimid / dex or Velcade / dex, but my oncologist felt I should be on all 3.

Thank You for the input,

Castaway

[Salzmav]

Re: Complete response, but doctor wants to add Revlimid

by Salzmav on Thu May 21, 2015 9:36 pm

If the doctors want to do it, then I say trust them.

I was on induction therapy of Velcade (aka bortezomib), dexamethasone, and cyclophos­pha­mide. I then underwent high dose melphalan, then had an auto SCT 5 weeks ago. I have had one of the best responses they had seen at this stage. The next bloods will show if I have any paraproteins left. My kidney function and all my bloods have returned to normal (creatinine, etc) , and there is no evidence of light chains. I am still anaemic, but Hgb takes the longest to recover. I have just started on thalidomide, and I have regular Zometa injections.

I say trust your doctors – they really are the experts here. And there are that many different com­binations of 'types' of myeloma (IgA, IgG, etc) and other factors (genetic mutations) that every one has to have a treatment specifically tailored for them; it is certainly not a one size fits all. So my treatment may fail miserably on another.

So, again, trust your doctors, or even get another specialist opinion.

Cheers, and all the best .

[JBenton9758]

Re: Complete response, but doctor wants to add Revlimid

by JBenton9758 on Fri May 22, 2015 10:44 pm

I initially underwent the RVD treatment regimen (Revlimid, Velcade, and dex) and had no reaction to any of them. I am now on maintenance of 25 mg Revlimid with dex and haven't had any rash symptom. If you read all of the info on Revlimid, you will find hundreds of reactions that people had during their time on Revlimid. As an individual, one can have one, some, or many of these symp­toms. Truth is that the reactions seen during trials might not have been from Revlimid and could have been from something entirely unrelated. But it had to be reported along with the per­centage having that reaction.

I've been with three clinics and three doctors, including the highly overrated one at Emory, and I'm convinced that there are no experts on this disease. All seem to feed the patients with pretty much identical data, and it's simply what they have heard or been told. They will declare a complete re­sponse that should mean you have no cancer, and yet your cancer comes back. There is no one or clinic that declares that anything is a cure. Even the much touted transplant had a cure rate of less that 1% based on the last information I was given. In fact, there are at least two studies that showed that current regimens, like RVD and others, are at least as good as the transplant in terms of length of survival and time until onset of symptoms. When I pushed two oncologists on this fact they both relented that it was true.

So what about your treatment? Take control and become an equal partner with your doctor in de­termining WHAT, WHICH, and even IF you should take a particular drug or combination of drugs. If you start from the premise of wanting to be cured, then there's only one strategy that makes sense. That strategy in it's simplest form, is "do what you need to do to stay alive and keep the disease stable" until some cure for this is found. When taking a medicine it must (1) work and (2) provide a reasonable quality of life that is acceptable to you. Miss either one and it's a bad choice.

This is MY LIFE and I have chosen to be in control of it in all its facets. The doctor works for ME, not the other way around. While I appreciate and respect his opinion, it is just that, an opinion. For no one really understands why this disease occurs, or why it comes back when, sup­posed­ly, the trans­plant destroys your entire immune system.

So I've chosen to stay alive for as long as I can using the myriad of drugs available in the hopes that a cure will finally come one day. After all, treatment and outcomes have come a long way in the past 10 years, and that gives me hope for the future. Along the way, my over­riding goal is to max­i­mize my quality of life. Without quality of life, they might as well start dig­ging my grave, because life without quality and enjoyment just isn't worth it.

[JPC]

Re: Complete response, but doctor wants to add Revlimid

by JPC on Sat May 23, 2015 8:26 am

Hello Castaway:

In my recent readings, and research, the majority of doctors think maintenance is the thing to do, even with CR, that it prolongs the first interval to relapse. It is not universal, though, and some doctors (and some posters) prefer to go without maintenance, particularly in the CR case. Usually, the maintenance, if done, is for a year or two of Revlimid, but Velcade is also sometimes used. Some doctors (not the majority in my research) will go with maintenance until relapse.

The latest research I think relates to minimal residual disease status. Minimal residual disease (MRD) is a more detailed test done on the aspirate at the bone marrow. Recent studies show that MRD negative (MRD-) has longer PFS and OS that CR or sCR. The general idea, I be­lieve, is that if you are at MRD- status by the most sensitive test available, then the need for im­mediate maintenance may not be there.

I have had a doctor recently tell me that "if you are CR, there are still myeloma cells that are floating around, maybe millions and millions" (reminded me of Carl Sagan). If you are MRD-, however, the myeloma has been knocked down to a much lower lever.

If you are CR but MRD+, my (non-doctor) read of the research is that you probably should go with the maintenance, finding a regimen with your doctor that you can tolerate. If you were confirmed to be MRD-, whether or not the maintenance helps is still unknown (too new to re­search that yet), and if you were inclined not to take maintenance, then this would be a better reason.

Regards, JPC

[JPC]

Re: Complete response, but doctor wants to add Revlimid

by JPC on Sat May 23, 2015 8:31 am

Hi Castaway:

After I posted, I realized that you were not the maintenance case. Your case is somewhat dif­fer­ent, but related. Sorry about that. There is a another thread where posters are discussing lags be­tween induction and SCT without any treatment, you might find that one helpful if you had not yet seen it. Regards,

[Castaway]

Re: Complete response, but doctor wants to add Revlimid

by Castaway on Sat May 23, 2015 10:39 am

I want to thank everyone with the great info. Just got an email from Express Scripts to give them a call before the Revlimid can be delivered. I have been through this monthly process before. I should be happy that my wife's insurance covers the Revlimid with little out of pocket.

I am just struggling with adding it now. When I was first diagnosed and my treatments were Revlimid / dex, I was told by my myeloma specialist that I could stay on that path for several years if I chose to do so, as long as it kept the myeloma in check without any side effects.

I suppose I will give the Revlimid a trial run at 15 mg instead of 25 mg as far as the rash issue. I always took the Revlimid at night, as it made me sleepy. Not any other issues with it.

At this point, I will have to speak with my oncologist during my Zometa treatment next week.

Thanks to all,

Castaway

[antelope1225]

Re: Complete response, but doctor wants to add Revlimid

by antelope1225 on Sun May 24, 2015 2:58 pm

Hi Castaway.

I agree with you that I would not want to take Revlimid unless it seemed necessary. I would want to stay with a routine that works until it quits working.

Revlimid lowers my red blood cell and white blood cell counts, and therefore I am anemic and more prone to infection when taking it.

Just my opinion.

Cathy

[mikeb]

Re: Complete response, but doctor wants to add Revlimid

by mikeb on Sun May 24, 2015 5:34 pm

Just a quick comment on JPC's point about maintenance therapy and MRD status.

I'm MRD negative and receiving Revlimid maintenance. When I "achieved" MRD negative status last July, I asked my myeloma specialist if I should continue with the rest of the planned two-year maintenance treatment (which was 14 months more at that point). He said yes be­cause "the work­ing assumption is that there are still myeloma cells in you even though we can't detect them, and we want to knock them back as far as we can."

I know that whether to do maintenance therapy is one of the big questions open to debate in the multiple myeloma community now. There are lots of factors that need to be considered when mak­ing an individual decision about it. But, as my case shows, it is not unheard of to continue main­te­nance even after getting to sCR and MRD negative. Time will tell if this is the "right" decision for me, but I'm comfortable with it for now at least.

Mike