[TerryH]

Re: Complete response, but doctor wants to add Revlimid

by TerryH on Sun May 24, 2015 5:38 pm

Hi George,

I can completely understand why you've asked your question, and I would have the same res­er­va­tions that you have were I in the same situation.

I mean, you've achieved a complete response. You're taking Velcade and dex to sustain, and perhaps deepen, that response. And you're going to do a stem cell transplant.

So why layer on Revlimid on top of the Velcade and dex?

JPC is probably right that it could give you a longer time until you relapse. Maintenance ther­a­py of any sort almost always delays relapse. But the important question is: What does it do for your overall survival? And what's the cost to you in terms of quality of life, not to mention actual dollars and cents?

In most cases, extended treatment with one drug desensitizes the myeloma to that drug. So, while you get an extended remission, your myeloma either won't respond to that drug (and others similar to it) when you relapse, or it will respond to the drug (and similar drugs) for a shorter period of time. On net, your overall survival isn't much affected.

Here's another thing to consider. What does your doctor want you to do after your stem cell transplant in terms of maintenance therapy? Has he discussed that with you?

If he's going to recommend Revlimid maintenance therapy for you after your transplant, and if you would seriously consider that, then you have to wonder even more what the benefit is to taking the Revlimid now.

I guess that, if I were in your shoes, I would ask the doctor to explain to me why he wants to do what he wants to do, including what he will be recommending you do after your stem cell trans­plant. Maybe there are things he is taking into account that he hasn't described to you, but, once he explains it to you, will help you understand (and accept) his logic.

Good luck with your decision!

[Castaway]

Re: Complete response, but doctor wants to add Revlimid

by Castaway on Mon May 25, 2015 8:54 am

Thank you all for the replies,

I am thankful that we all have The Myeloma Beacon to post our questions and our replies. With several opinions about my post, it gives me a better idea on making decisions. I can usually take care of things on my own, but having others that might have gone down this road already really helps.

I should have mentioned that my oncologist where I live is only a few miles from my home. My myeloma hospital and specialist is about 200 miles away. They are the only one's contracted with my insurance.

My local oncologist fortunately works with several patients who have multiple myeloma and hospitals where they have gone. One is where I am going. Two other patients of his with multiple myeloma have decided to not undergo even the stem cell harvest. Just stay on a meds treatment plans. Not sure what that decision was about, unless they didn't want the initial high-dose chemo and Neupogen. I feel like my frozen cells are like money in the bank.

I called Express Scripts on the Revlimid order and, due to the holiday, they will have to call me later this week or next week for the initial consultation. So that gives me time to talk with my oncologist Wednesday.

I was just thinking that I would save the Revlimid for after-transplant maintenance. Kind of like the stem cells, Money in the bank. Not use everything up at one time.

Thank You,
Castaway

[antelope1225]

Re: Complete response, but doctor wants to add Revlimid

by antelope1225 on Mon May 25, 2015 3:52 pm

TerryH did a great job of expressing my thoughts - much better than I expressed them.

I appreciate that she mentioned overall survival and how taking a drug usually desensitizes myeloma to that drug. So taking Revlimid now could make it less effective later.

I mentioned the cost to your quality of life, but have taken Revlimid for 2 years, so I am not opposed to taking Revlimid.

I like my oncologist because when I asked if I could refuse a certain drug he said, "Absolutely! You are in the driver's seat." After the last few years of living with multiple myeloma, I appreciate that but I know that not all oncologists are so willing to discuss treatment options.

Cathy