[CathyAnn]

Re: Revlimid trial for smoldering multiple myeloma

by CathyAnn on Wed Aug 03, 2016 6:06 pm

Jacquie,

Sorry to hear you have had to join us, but it is great that your doctor recommended a trial for you. I am also a high-risk smoldering myeloma patient. I am currently enrolled in the ECOG trial of Revlimid vs. observation and am in the observation arm. My comments below are assuming you are talking about the same study.

I understand that they have had difficulty recruiting patients for this trial because of the narrow inclusion criteria. For myself, since I am in the observation arm, there are two differences from the care I would be receiving outside of the study.

The first is that I am seen every four weeks instead of every 3 months. The study does not pay for your visits or testing, so if you have co-pays or co-insurance, you will be paying for three times as many visits (plus parking, of course).

Also, the blood work has to be done within 24 hours of the visit, so the doctor doesn't have the results when I see him and he always has to follow up with me about a week later. If I was outside the study, I could have the labs done ahead of time and discuss them with the doctor at my visit.

My personal situation has changed and I actually will be withdrawing from the study. I was working at the same place where the study was, but now I'm not working, and will be going on my husband's insurance. The co-pays and co-insurance are much higher, and we have to think of our budget. I feel really bad that I have to do this. Having said that, if it works for you, I strongly encourage you to enter the trial. It's the only way we are going to answer important questions about whether treatment even helps. You have to do what's right for you, though.

Cathy

[pappystrout]

Re: Revlimid trial for smoldering multiple myeloma

by pappystrout on Tue Aug 09, 2016 12:40 pm

I thought that I had read somewhere that there is a chance of developing a secondary cancer when using Revlimid. I could be wrong, but I think that my oncologist had discussed the possibility of taking Revlimid while I was smoldering, but that developing a secondary cancer was possible. I could be wrong on this.

[Helen521]

Re: Revlimid trial for smoldering multiple myeloma

by Helen521 on Sat Sep 24, 2016 9:25 am

Hi Jacquieh,

I was wondering if you had made a decision to proceed with the trial or not. My father was recently diagnosed with smoldering multiple myeloma and we now found out it is high-risk smoldering multiple myeloma. He was presented with the option to participate in this study. He is currently weighing his options. I was just curious what you decided to do.

[Jacquieh]

Re: Revlimid trial for smoldering multiple myeloma

by Jacquieh on Tue Sep 27, 2016 10:57 am

Hello Helen,

I’ve been on 25 mg of Revlimid for the last two months and my M-spike has lowered considerably. I have one more month to go before another bone biopsy.

In the beginning, my side effects were horrendous, but for the most part they have now disappeared.

If your father is considering Revlimid, I advise he take the tablet before bed (if possible). Trying to navigate life while taking it in the day was difficult.

Hope all goes well for your father and family.

Jacquie

[Helen521]

Re: Revlimid trial for smoldering multiple myeloma

by Helen521 on Wed Sep 28, 2016 10:29 am

Thank you for sharing your perspective, Jacquie. That is encouraging to hear your M-spike has been decreasing with this clinical trial. I hope it continues to do so. Best of luck with your bone marrow biopsy next month.

My father has some follow-up tests next week to rule out lesions before he can be a part of this trial. Thank you again for your input.