[Warcun]

Duration of Revlimid maintenance

by Warcun on Wed Jun 18, 2014 11:56 am

My wife is currently going through the decision making process of whether to continue with her Revlimid maintenance therapy.

She is 67 and was diagnosed in late 2011 with IgG Kappa Light chain expression multiple myeloma. She had an autologous stem cell transplant in July 2012. The pre-transplant high dose chemo was really tough on her! For her first year following transplant she was on dex and Revlimid. At her one year follow-up visit, the transplant oncologist (not her local oncologist) took her off of dex due to adverse side effects which got progressively worse following transplant -- bone and joint pain, tremors in arms and legs, neuropathy, extreme fatigue, post-menapausal hot flashes. She has continued on the Revlimid during her second year post transplant.

She is not an athletic person and developed meniscus tears and bone-on-bone contact in both knees followed shortly thereafter with De Quevein's syndrome in both wrists and had surgery on both knees and wrists. Fatigue has been and continues to be a major issue for her. I find it beyond coincidental that she has had such joint and connective tissue damage while on maintenance therapy. Most recently she developed osteonecrosis of the jaw from the monthly Zometa infusion she has been getting.

At a recent multiple myeloma presentation, the presenting oncologist mentioned that it is recommended that Revlimid maintenance therapy be capped at 2 years. In a post to the Beacon there is also a reference that "In January 2011, the DSMB recommended to stop LEN (Revlimid) due to the increased incidence of second primary malignancies (SPMs). The median duration of maintenance treatment with LEN was 2 years (IQ range= 1-3)."

Now my wife's transplant oncologist has recommended that she "d/c the Rev". Her local oncologist wants to her continue Revlimid until disease progression. Her blood tests have continually shown that she is in full remission. However, she has asked the local oncologist to arrange for a ClonoSIGHT test to be performed to help her with her decision.

At this point, making the decision to continue or stop Revlimid maintenance seems no better than flipping a coin based on medical input (at least from this caregiver's perspective). If anyone out there has identified concrete clinical data for decision making about Revlimid, I would appreciate hearing about it.

Thanks.

[Dr. Edward Libby]

Re: Duration of Revlimid maintenance

by Dr. Edward Libby on Thu Jun 19, 2014 1:15 pm

Hello from sunny Seattle (its almost summertime!),

Your question is a major concen for myeloma doctors around the world and there is no absolutely correct, 100% right answer. I think many if not most myeloma oncologists would recommend disccontinuing Revlimid after two years of use post autologous stem cll transplantation. There are a number of published expert consensus opinions on this subject. Two that I refer to frequently are the National Comprehensive Cancer Network (NCCN) Guidelines and also the MSMART guidelines from the Mayo Clinic.

The NCCN recommends Revlimid post transplant but they do not give a recommended duration. This is probably because the committee felt that we don't have enough information and research to know what the risk/benefit ratio is.

The Mayo Clinic (MSMART) guidlines recommend that oncologists consider limiting the duration of Revlimid after transplant to12-24 months.

Personally I would follow the transplant oncologist's recommendations as he/she is probably more in touch with the research surrounding this issue.

[indy mike]

Re: Duration of Revlimid maintenance

by indy mike on Thu Jun 19, 2014 3:42 pm

Thanks for your response Dr. Libby.

Aside from the post autologous setting such as the first relapse setting, are their protocols for length of treatment? I had assumed treatment with Revlimid would continue as long as it remains clinically effective, but these posts got me thinking. The dosage probably comes into play as well.

Assuming the therapeutic level of 25mg achieves a good result, what would be the recommended length of treatment at a maintenance level?

Thankns.

[Dr. Edward Libby]

Re: Duration of Revlimid maintenance

by Dr. Edward Libby on Thu Jun 19, 2014 7:21 pm

Hello again,

The research on using Revlimid for maintenance in settings other than after a transplant is even less clear. A study was presented at ASH (the FIRST trial) in 2013 that suggested that newly diagnosed NON- transplant patients did better if they continued their Revlimid and dexa­metha­sone indefinitely rather than stopping it after 8 months.

In terms of maintenance Revlimid after relapse in non-transplant patients, it would be reasonable to continue it indefinitely and many oncologists would do so.There are research studies that will help to answer this question.

The biggest concern with Revlimid maintenance right now is increased risk for second cancers. The patients that are at an increased risk for second cancers with maintenance Revlimid are those that have received the drug melphalan [Alkeran] either as their transplant drug (melphalan is the standard transplant drug for myeloma) or orally.

[Beacon Staff]

Re: Duration of Revlimid maintenance

by Beacon Staff on Thu Jun 19, 2014 11:02 pm

Following up on Dr. Libby's posting, the Beacon published the following news story about the FIRST trial that he mentioned:

Continuous Revlimid-Dexamethasone Therapy Delays Progression And Improves Survival In Older Newly Diagnosed Myeloma Patients (ASH 2013)

The Beacon also covered in a news story research related to the finding Dr. Libby mentioned regarding melphalan and secondary cancers associated with Revlimid:

Revlimid And Secondary Cancers: Melphalan May Be The Culprit

[goldmine848]

Re: Duration of Revlimid maintenance

by goldmine848 on Fri Jun 20, 2014 7:33 am

Thank you for posting the links, especially the one on the risk of secondary cancers. A careful reading of that study shows that the increased risk is largely for those who took oral melphalan with the Revlimid as opposed to those who received a single high dose of melphalan as part of a stem cell transplant. In deciding whether to do Revlimid maintenance this was an important factor for me.

[kullybunnny1]

Re: Duration of Revlimid maintenance

by kullybunnny1 on Fri Jun 20, 2014 7:48 am

I've just received my ASCT and will get my 100 day post-transplant check-up soon.

As a relatively young multiple myeloma patient (49), what questions should I ask my doctor for Revlimid maintenance therapy going forward?

I'm a little intimidated by the knowledge others have of their pathology results and I really just need the duration of maintenance therapy e.g. 12-24 months at certain dosage; DVR treatments or is it continued until I have relapsed. Thanks.

Kully

[Wayne K]

Re: Duration of Revlimid maintenance

by Wayne K on Fri Jun 20, 2014 10:39 am

Just to muddy the water. I went 3 1/2 years post transplant with no maintenance. I started Revlimid 3 months ago because of a rise in my M spike and light chains. They are now coming back down. I'm on Revlimid alone, no steroid.

[Warcun]

Re: Duration of Revlimid maintenance

by Warcun on Tue Jun 24, 2014 4:26 pm

Thanks Dr. Libby. My wife's local oncologist is performing a bone marrow biopsy tomorrow and has now told us that, if there is still no sign of the cancer, he is going to discontinue the Revlimid and warfarin she has been on for the past two years. We are hoping for the best.

[Joanne in Texas]

Re: Duration of Revlimid maintenance

by Joanne in Texas on Sat Jul 26, 2014 12:03 pm

I had an autologous stem cell transplant in 2009. I have been on Revlimid only since then. I have had good lab work every time I have gone to see my oncologist. I do have bone pain and really bad cramps all over my body at time. There are days were I feel like I have energy, but when I get to doing things, I tire easily. I have been battling multiple myeloma since 2003. I am 46 years old.