[jane84]

Revlimid at relapse after SCT & VDT induction?

by jane84 on Thu Mar 12, 2015 11:50 am

Hello,

My haematologist told me my last bloodtests and MRI confirm a first relapse. I was diagnosed in November 2012 with Stage III myeloma, and only achieved VGPR after an autologous stem cell transplant (ASCT) in March 2013 and consolidation with Velcade and dexamethasone till August 2013.

He wants me to try Revlimid and dexamethasone, as I had thalidomide, Velcade and dex as induction therapy.

Is it really possible to get a much longer remission with Revlimid? Can you stay on Revlimid for years ?

Also, I had a really bad time while on dexamethasone. Are there people who only had Revlimid?

I am taking green tea, curcumin, vitamins B and lipoic acid tablets everyday. Will I have to stop them once on Revlimid ?

I would love to hear about long term remissions after short first remission.

Thank you!

[Loretta 2005]

Re: Revlimid at relapse after SCT & VDT induction?

by Loretta 2005 on Fri Mar 13, 2015 5:14 pm

Jane84,

I have been on Revlimid since March 2008, initially 25 mg with dexamethasone 20 mg for six years. Then Revlimid 20 mg, dex 12 mg, on down to Revlimid10 mg, dex 2 mg now for six months.

The dexamethasone was the most problematic, since it caused very severe bouts of diarrhea, but that is now resolved with the lower dose. Over the course of therapy, we have tried three months off of dex, but my IgG really started to rise. For myself, even such a small dose of 2 mg of dex keeps me well.

I also was stage three at diagnosis, with over 70% plasma blasts on my initial slides. My ten-year anniversary will be in two months – I am doing great thanks to Revlimid and my great physicians and oncology nurses.

As always, keep your oncologist informed of all you misgivings, and trust them to help you make the best decision for you.

[jane84]

Re: Revlimid at relapse after SCT & VDT induction?

by jane84 on Sat Mar 14, 2015 7:45 am

Loretta 2005, thank you and congratulations for your 10th anniversary.

Another question: Do you take the dexamethasone and Revlimid in the morning?

[Multibilly]

Re: Revlimid at relapse after SCT & VDT induction?

by Multibilly on Sat Mar 14, 2015 8:14 am

Hi Jane,

Loretta gave some great advice. Also note that a lot of specialists have generally moved to using lower dose dex schedules in the past 2-4 years. I don't know what dex dosing schedule you were on when your first treated, but the new norm might be less than what you were on.

One other thing you might want to discuss with your doc is trying prednisone instead of dex. Some folks tolerate prednisone better than dex.

Best of luck to you.

[jane84]

Re: Revlimid at relapse after SCT & VDT induction?

by jane84 on Sat Mar 14, 2015 2:03 pm

Hi Multibilly,

Thanks for the tip about prednisone. I'll ask my doc when I have my next appointment in April.

I think I had 40 mg of dex twice a week in induction therapy, and, as I was complaining about it, it was lowered to 20 mg during consolidation. I still had much trouble with the lowered dose.

Good luck to you too!

[NStewart]

Re: Revlimid at relapse after SCT & VDT induction?

by NStewart on Sat Mar 14, 2015 6:47 pm

Jane84-

I was on Revlimid 15 mg and dex 40 mg as induction therapy and achieved VPGR prior to my transplant. It took about 7 months before I achieved CR after transplant. I relapsed almost 3 years post transplant and was restarted on Revlimid at 15 mg and dex at 20 mg. This com­bi­na­tion brought my m-spike down to 0.6 g/dl within 3 months from 3.8 g/dl and have been stable at 0.6 g/dl since. I have been taking Revlimid and dex for 2 1/4 years now with my Revlimid now at 10 mg. One of the people in my support group who was in the trial for Revlimid 10 (?) years ago is still taking it with no real problems.

I take my Revlimid in the morning and my dex at night. I tried taking the Revlimid at night, but it kept me awake. I started taking the dex at night so that the worst of the side effects happened over night. I have one night of difficulty sleeping, but have found that one Tyelonol pm (which has Benadryl [diphenhydramine] in it) helps me get to sleep on the night that I have problems sleeping.

Ask your oncologist about the other things that you are taking. I don't drink green tea so have no suggestions about that. I take curcumin on the recommendation of my oncologist, so that shouldn't be a problem. I don't take alpha lipoic acid so can't comment on that.

Good luck with this new regimen,
Nancy in Phila

[jane84]

Re: Revlimid at relapse after SCT & VDT induction?

by jane84 on Sun Mar 15, 2015 2:07 pm

Nancy, it's good to hear some patients get a long remission with Revlimid, I hope I will be one of them.

I will try to take the dex at night. Funny you take the Revlimid in the morning, as I read it makes you feel tired. I will try anyway.

Thank you for your support, I often read your comments and it really does help !