[Karen]

Deciding on next steps after Revlimid stops working?

by Karen on Tue Aug 27, 2013 4:27 pm

Hi all,

I have been on Revlimid since I finished my initial phase of treatment (Revlimid/​Velcade/​dexamethasone) in July 2011. This was part of a Phase 3 clinical trial. At that time I was pronounced in "Very Good Partial Remission" and started a "maintenance" schedule of 25 mg Rev. and dexamethasone. Gradually my doctor and I decided to take me off the dex as I was having many side effects, and we reduced the amount of Rev. to 15 mg a day for 21 days. I've been on this dosage schedule since about January 2012.

During the time since then all of my "numbers" have been in the normal range (calcium, kidney function, CBC, etc), except for the Kappa Free Light Chains, which have been very very slowly going up and got out of the normal range in December 2012. (right around the time I stopped taking the dex.)

When I was diagnosed they were at about 16; my latest blood work showed them at about 4. The Lambda levels are normal. My paraprotein levels have always been very low or zero and are currently around .3.

I have no other health issues and have had no fractures or bone problems since I was first diagnosed (when I broke my scapula.) There are still lesions in my arms but the orthopedic oncologist has not seen any new ones or any worsening.

Given this continued slow increase in the Kappa chains, my doctor feels that the Revlimid may not be working any longer. At today's visit, he suggested stopping the Rev. for a month and seeing what the blood work looks like next month. At that point I assume we'll have to discuss next steps, but I really don't know how to make this decision. As I see it I have so many options (not that I'm complaining about that, mind you) but which is best? If the Kappa number is up again, but only slightly, is it safe to wait a while longer before starting any new treatment? He and I both agree that we don't want to let things get to the point at which my bones are in trouble. But, we of course don't know exactly what that point is.

a) I could go back on a higher dose of Rev. plus dexamethasone and live with the side effects. The plus side of this would be that I would still be in the clinical trial and thus the cost to me would be low.

b) I could try one of the newer drugs like Pomalyn, or go back to Velcade, which I also responded well to.

c) I could think about a SCT (I have had the harvest done.) My doctor says that as I am "young" (54) it's best to do a SCT earlier rather than later. I know many people come through this just fine but I am really conflicted about it. I asked him about studies I've read that have said that some people have just as good results from drug therapy now as from the SCT. He says that these are mostly cases of older people who may not be great candidates for SCT.

Can anyone help me sort through these options and make an intelligent decision? And apologies that this is so long

Karen

[Ricardo]

Re: Deciding on next steps after Revlimid stops working?

by Ricardo on Tue Aug 27, 2013 5:12 pm

Hi Karen,

Sorry to hear that some of your numbers are starting to creep back up again. I hope this is just something temporary, and that you find out that Revlimid is actually still working.

One quick question before everyone starts making suggestions for different potential treatment alternatives ... If you went back on dex as well as Revlimid, would the clinical trial your participating in allow you to add in Biaxin as well? Or would that mean you'd have to go off the trial?

I ask because, as you may have heard, adding Biaxin to Revlimid and dex tends to improve response versus just Revlimid and dex alone. There is some debate whether you can get the same effect by just adding in more dex, and leaving out the Biaxin, as the primary effect of the Biaxin seems to be strengthen the effect dexamethasone has against myeloma. But it's not 100 percent clear.

The Biaxin-Revlimid-dex combination is known as the BiRD regimen, by the way.

[Karen]

Re: Deciding on next steps after Revlimid stops working?

by Karen on Tue Aug 27, 2013 7:32 pm

Hi Ricardo,

Thanks for the reply!

The clinical trial was looking at initial treatment of Revlimid and Dex alone vs. Revlimid, Velcade and dex. So I don't think it would allow me to add anything new onto that and still stay in the trial. Apparently there is some leeway in dropping down dosages or even taking out a drug (as the doctor did with the dex) but not in adding one.

As a matter of fact, I wonder if now I am officially out of the trial, since I agreed not to take the Revlimid this month. Now I'm starting to second-guess myself and am wondering if I should have suggested adding the dex (at a low dose) back in. I really hated the side effects, which is probably why I didn't suggest it But it might be worth it to see those numbers go down.

[Dr. Jason Valent]

Re: Deciding on next steps after Revlimid stops working?

by Dr. Jason Valent on Wed Aug 28, 2013 8:26 am

Great question Karen.

It seems like you have been monitored and treated very well. In the situation you describe, my preference is to reintroduce dexamethasone first. I realize that most side effects come from the dex, but perhaps reintroducing 20 mg weekly instead of 40 may minimize the side effects. I can't remember if this trial provided specific guidelines about reintroducing dex or the dose. I will try to look this up. It would also be very reasonable to include Velcade with this but it may not be necessary.

This would also be a reasonable time to consider high dose chemotherapy and transplant.

I would not move to an alternative agent such as pomalidomide or carfizomib as it would be good to reserve these for later therapy.

[Karen]

Re: Deciding on next steps after Revlimid stops working?

by Karen on Wed Aug 28, 2013 10:24 pm

Dr. Valent,

Thank you very much for your reply. If it helps at all, the study protocol # (if that is the right term) is S0777.

I am wondering now if I should take this month off from the Revlimid, or contact my doctor and suggest trying the dexamethasone again, at a lower dose. Not that I'm terribly concerned that my condition will deteriorate too much in a month, but if I wait a month before deciding, will I be officially out of the trial?

That is very interesting about holding off on the new therapies until needed; that makes sense.

I know that high-dose chemo/transplant can be a good option. Right now I think I am just not mentally ready to do it - unless I am told that there are no other options. My doctor says that he thinks I would come through it with no problems, and I believe him, but I also know it's not exactly a walk in the park. I suppose everyone reacts differently. When I had my stem cell harvest, the transplant doctor gave me a pamphlet about the SCT which really freaked me out - detailing just how debiliated one would be afterwards, and for how long, and so forth. I understand that it may well be something I have to do, I just need to get myself into a place where I can accept it. I guess I am still hoping that I will respond well enough to drug therapy so that I won't need it just yet.

Karen

[Dr. Jason Valent]

Re: Deciding on next steps after Revlimid stops working?

by Dr. Jason Valent on Thu Aug 29, 2013 4:29 pm

I could not find anything specific in the protocol guiding what to do next (I was assuming it was the S0777). If you are not ready for transplant, that is certainly OK. I would restart the dex at 20 mg and follow the labs.

Best wishes!

[NStewart]

Re: Deciding on next steps after Revlimid stops working?

by NStewart on Sat Aug 31, 2013 12:26 pm

Karen-
Just a note about the dex at 20 mg. When I first was on Rev and Dex it was 15 mg Rev and 40 mg of Dex. What a nightmare that was. When I restarted treatment last Dec with 15 mg Rev my oncologist asked me how I had done with the 40 mg of Dex. I told him that it was horrible and dreaded having to do that again. So, he prescribed 20 mg instead. What a difference! Most of the really bad side effects are either gone or so minimal that I can deal with them.

I take the Dex right before I go to bed so that I sleep through that first night. The second night I take a 5 mg Valium which helps me sleep and keeps the cramping from appearing except maybe minor cramps in my feet. I don't have any huge crashes or mood swings. The biggest problem I have is excessive sweating that starts some time during the first night and lasts most of that first day. Since I know when things happen and how long they last, I'm prepared for the effects. It's been so much better than when I was on 40 mg of Dex.

Good luck with your treatment. It sounds like adding the Dex back in, but at a lower dose, might be the smartest way to restart and then go from there.

Nancy in Phila

[Karen]

Re: Deciding on next steps after Revlimid stops working?

by Karen on Fri Sep 06, 2013 7:28 am

Thanks, Nancy! It's good to hear about your experiences with the 20 mg of dex vs the higher dose, since I have been rather dreading going back on it, but it seems that perhaps the lower dose won't be so awful. Do you experience increased hunger on the 20 mg? That was the side effect (other than the sleeplessness) which I hated most - that feeling that you're ravenous even after you've just finished a normal meal. Even with trying to fill up on salads and other healthy foods, I still gained some weight. Still carrying it around, too, because dieting is not much fun when you're dealing with this other stuff!


Karen

[Jill Seiter]

Re: Deciding on next steps after Revlimid stops working?

by Jill Seiter on Thu Nov 12, 2015 4:23 pm

My husband is in a similar situation. He has been treated with tandem stem cell transplants in 2003 and was put on maintenance with thalidomide, which kept him in near complete remission until 2012. Since then, he has been treated with Revlimid, Velcade and dex. The dose of dex had been cut back to 2 tablets instead of 5. His monoclonal protein is slowly but consistently going up now.

My question is, If he already had tandem stem cell transplant and has stem cells stored, is this still an option for him even though he has had chromosome deletions and translocations since he relapsed in 2012 and is now considered refractory?