Anyone have Revlimid response w/o 5q deletion?

[jfensterer]

Hi There,
My Mom (Dorothy) was diagnosed w/MDS last April. She gets Procrit 1x every 2 weeks and Neupo 2 x a week. She was transfussion free until she started Revlimid 85 days ago. Since that…as expected all counts have bottomed out, she feels terrible & it looks like someone took a bat to her arms because of all the bruises.
We jointly decided with the Dr. that quality of life at this point was more important. BUT, we will see in the next couple of weeks if her marrow might have improved.
Anyone out there that had improvment w/o the 5q deletion & if so, was the improvment seen after the week off? I would so appreciate any info. My Mom is my best friend and I want to get her any additional info or help her as much as possible.
Many Thanks- Jan

[Rackon]

Hi, Jan. I hope I our story will be of help. I understand how worried you must be feeling – this is such a frustrating and puzzling disease.

The short answer to your question is “yes”.

But it’s been a bumpy road. Here’s the long answer.

Please keep in mind that this is only our experience with Revlimid – people have very individual reactions and tolerances to this drug. Most of the anecdotal reports indicate it takes 4-8 weeks for the drug to do its thing and it doesn’t help everyone. Rvl is not a sure thing.

This has been our road thus far.

My 86 year old dad has been on Revlimid off and on since April. (He’s my best friend too – I’m an only child).

He was diagnosed with CMML in 2002 (some docs say it’s a variety of MDS, some give its own classification). He does not have the 5q- or other genetic anamolies.

He received Aranesp injections (EPO) every 3-6 weeks for over 3 years and remained tranfusion free. His white cells and platelets stayed in the normal ranges. In February, the disease progressed to the point that even increased doses of Aranesp stopped working for him, so we were back to transfusions.

Dad is one of those people who builds anti-bodies even to irradiated blood, so his transfusions started getting closer and closer together, holding less and less well – some weeks we were up to 2 TXs a week (4 units). We were fighting to keep his Hg counts in the upper 8s. He could go from a 9.8 to a 6.0 in only 3-4 days. This obviously was not a good progression.

Our onc-hematologist had previously had success treating with Thalidomide, and was very pleased with several of his patients’ progress on Revlimid. So Dad started on 10 mg Rvl a day the end of March, first of April.

As a frequent visitor to this site, I was prepared for all his blood cell lines to drop, and indeed all cell counts plummetted after 10 days – 2 weeks on the 10 Mg dose. The doc gave my dad about 8 days off and then restarted him on 10 mg every other day, essentially halving the dose. Although the HG didn’t bounce back, the other cell lines did so immediately.

Dad tolerated the lower dose much better and had been on it around 2 weeks, down to 1 TX a week when he fell and broke his hip April 22. He was admitted and taken off Rvl and Coumadin…the orthopedists waited 5 days for the Coumadin levels to come down before his hip was replaced. The hospital gave him 3 units right before surgery because he’d been on coumadin along with the Rvl and the surgeon was concerned about bleeding during the operation.

Dad was then off Rvl for around 12 days and started back on it after he got to rehab.

But a funny thing happened. His HG stayed in the upper 9.8 range for much longer and he went almost 3 weeks post surgery before he needed another transfusion. He hadn’t held that long since in months.

His next 2 TXs were 2 weeks apart – not as dramatic but still much better than the 2x a week he’d had to undergo in February and March

This week, on Monday his CBC showed an 8.6 HG, down from 9.6 last week, so I took him for a cross-type & match on Tuesday, with a TX scheduled today. This was typical for the last several weeks.

But I got a call from the bloodbank yesterday – our doc was cancelling the TX: dad’s HG had gone UP from 8.6 up to 9.6 ON ITS OWN, from Monday morning to Tuesday afternoon.

We’re hoping this is a sign that the Rvl is really starting to kick in and his marrow is recovering. His platelets are up too. (I know all about those awful looking arms.)

It’s way too early to say we’ve turned the corner, but this is still very good news – his counts have maintained for periods but he has *never* had his HG go UP on its own since he was diagnosed.

As for side effects, Dad has had the occassional diarrhea, gas pains and dry, patchy skin that often goes along with Rvl therapy. He also has other health issues to deal with: chronic, renal failure (non-dialysis), the hip recovery, heart arrhythmia, acid reflux and its attendant loss of appetite. But the crisis issue – the CMML – is on the improve, at least this week. For now, he is remaining on Rvl therapy.

I’m guessing you might see some improvement in your mom after she’s been off the Rvl for a week or so. Improvement may not be dramatic, but her cell lines should start to bounce back. Response varies so much from individual to individual. It’s quite common for patients on Rvl to do much worse before they start to do better – that was certainly the case for my dad. I assume your mom is also off Coumadin now too – that should help the bruises.

I suspect my dad was in much worse over-all health than your mom when he started on Rvl, EPOs having failed for him, so we had little to lose by trying Rvl. (The doc had given us the “if things continue in this direction you might want to get your affairs in order” talk. Of course, things have also been complicated by Dad’s broken hip.

I can tell you that the oncology doc tolds us that if Rvl works for you, it’s probably going to do so within 6-8 weeks. Several folks on this forum have reported that their cell lines bottomed out on Rvl, only to see them rebound 4 or 5 or 7 weeks later. Depends on the person and the dosage. Some people can’t tolerate Rvl in either strength. It can be very scary watching a loved one you’re hoping will get better actually get WORSE for weeks while all you can do is hope the drug will kick in.

Dad’s progress has been a bit difficult to track since he was on again off again for the first 6-7 weeks. But we did see progress about week 6 from the beginning, even with breaks in the regime – his TXs holding longer. This week, 6 weeks after he started back after the surgery and 11 weeks after we started the journey, suddenly his improvement has jumped forward.

I’m hoping and praying this trend continues.

I suggest you check out some of Patti’s posts about herbal supplements etc. I think it’s absolutely critical you help your mom’s body cope with the effects from the Rvl and her disease. Good nutrition is extremely important – difficult with my dad who has little appetite.

One other thing our doc told us: he has had very good luck with Revlemid (and Thalidomide before that) in treating CMML patients and MDS patients without the 5q deletion. He has several people who have been on it longer than dad and a couple of those folks are in remission – no TXs for one lady (who got into a study) for 10 months!

If your mom was having problems and no repsonse on the lower dose 5mg Rvl, I can certainly understand why you’d back off the therapy…especially since she was doing well on Procrit & Neupo without transfusions. It IS a quality of life issue. I hope you’ll keep us posted on her progress now that she’s stopped Rvl – its such a new drug that we’re all learning about it as we go – docs included.

Good luck, and feel free to email me if you have any specific questions.

[CathyW]

I have had a positive response with Revlimid w/o the 5q deletion. I started with 25 mg dose and later it was dropped to 10 and then 5 mg because of my blood counts dropping. My counts started improving around week 6. My counts had improved so much that my doctor called Dr. List (the Revlimid expert) to find out when I could go off the drug. Dr. List told him that his patients that went off the drug relapsed within 3 to 5 weeks. So he plans to keep me on Revlimid. I don’t have any horrible side effects so I guess that’s okay. My platelets dropped last month from 138 to 113 so I am a little concerned. I see the doctor next week and I hope that the drug is still working for me.

[Rackon]

Cathy, thanks for sharing.

Many people on Revlemid have much lower platelet counts than yours. Dad’s dropped from 131 to 71,000 to 31 in about 10 days. You can clot on your own pretty effectively to 71 – our onc told me he doesn’t get real concerned unless you drop below 50. Right now his our going up from 84 to 91. Don’t panic!

Are you transfusion free?

Glad you’re doing so well – hope it continues.

[CathyW]

I have never had a transfusion. I was dx at the end of December and started the Revlimid about 3 weeks later.

[frank]

Hello,

how can you guys get your doctor prescripted the Revlimid, my doctor cannot give it to me since i don’t have the 5q deleteion…

need an answer…

Frank

[TEMBO]

Hello CathyW;

Thank you for your posting. My husband has the same situation as Frank. My husbands docs at MD Anderson will not use Revlimid since he does not have the 5q deletion. I have sent my husband’s records to Dr. Alan List. His response was there was nothing to do at this point….continue observation with MD Anderson, and if his situation changes let him know.

MD Anderson, on the other hand, wants to put my husband in the hospital for four days and administer four drugs ie, thymoglobulin, cyclosporine, methylprednison, and GCSF. The doctor has hopes that this could stop the disease, and put my husband in remission.

Did you have any treatment prior to Revlimid.

My husband’s white cells seem to stay around 1.6, his hemoglobin around 9.7. His platelets are in the normal range, however doc say that with the amount of potential platelet stem cell material available his platelets should be much higher.

Your diagnosis seems similar to my husband, I am still trying to get an understanding of this particular type of mds, and hope I might get a greater understanding with what you have experienced. Thank you again for your postings.

God Bless,
Karen

[CathyW]

Karen,
I wish I could help. I have no idea how or why my doctor prescribed revlimid for me. I think I am lucky that it is working. It is the only treatment I have had for this disease. MDS is so confusing. I really don’t understand it. Part of the difficulty in dealing with it is that there doesn’t seem to be any standards or protocals that you can count on. What works for one person may or may not work for someone else with a similar dx. Feel free to e-mail me if you think I can provide you with any other details that might help.
Cathy

[lucym]

TEMBO, Frank if they will not prescribe the Revlimid how about the Decitabine? It was approved for all types of MDS. My Mom (who has progressed to AML)just started it today.
Lucy

[Neil]

Hi Karen,
You mentioned your husband was looking at: thymoglobulin, cyclosporine, methylprednison, and GCSF.
Is the first drug actually antithymocyte globulin (ATG a horse serum)?
If so, has the doc provided any info on:
Side effects?
How many MDS patients they have tried this on?
How many MDS patients responded to this treatment?
It has worked well on Aplastic Anemia patients. They have hypo-plastic marrow. If he has hypo- plastic marrow the supposition is it may help him. BUT the protocol has not been that successful on MDS patients regardless of the hypo-plastic marrow.
Would be inclined to ask lots of questions and be satisfied with the response before agreeing to the program.
You might want to check the NIH site http://www.nih.gov
and review their statistics on their trials. They tried it for a while.
Would also ask if there are any differences between the MDA trial and the NIH trials.

[TEMBO]

Hello Neil;

Thanks for the info. Yes my husband is hyperplastic.

1.The study says Thymoglobuolin is a type of ATG made from rabbit plasma. I think they refer to this rabbit plasma as ALG.

2. The Dr. head of the study said the most common side effects are chills and fever.

3. The last time I talked with the Dr. in charge of the study, they only had 15 people in this particular study. The Dr. said the above side effect was the only one up to May that had been experienced. It was not possible for me to talk with any of these people, because of the privicey laws?

4. My husbands Hemotalogist said the success rate was about 40%, but he did not differentiate between aplastic anemia, hypoplastic, and hyperplastic. The research nurse said they have had about an 80% improvement of some degree with this study. She continued that at first they did not include hyperplastic, but have found they too benefit. However, the written information on the study does not even refer to hyperplastic situations.

When I asked so many questions, they sent me two lengthy documents of studies that I could not even begin to understand. I finally gave up. The studies were mainly about ATG horse serum only.

Thanks for the NIH site info. I will do some more research.

Neil, you have been so helpful on this forum. You have certainly given this alot of thought and study. My husband’s mds sub class is RCMD. Would my husbands dx be anything like your dx?

Thank you again for all your input.

God Bless,
Karen

[Neil]

Hi Karen,
The rabbit serum is Antilymphocyte globulin (ALG). It is much less toxic than ATG. Have not seen too much published on the success of ALG. It has been used in European countries for quite a while. Heres a qoute from a AAMDS publication that is about 2-3 years old. “ALG (a rabbit serum)- and cyclosporine has been very successful in treating Aplastic Anemia, but not nearly as effective against MDS. The effects of ATG or ALG in MDS patients are short lived, lasting , on average, about 10 months. This therapy is used most often on patients with hypoplastic MDSwhich is the form of the disease that nost closely resembles aplastic anemia, for which immunosuppressive drugs are the standard treatments. Immunosuppressive drug therapy also has been successful in treating people with earlier stages of MDS (RA).”
It might be wise to be pre tested to determine if he is likely to develop anaphylaxis. Think they use a small amount of ALG under the skin to see if there is any reaction—like an allergy test.
Would keep asking more and more questions. The more you can learn the better. You can ask if they will speak to some of the people on the trial and see if they would talk to you about their experiences. That would not violate any confidentiality laws. The conversations would be of a personal nature between you and them. The docs would not be involved. Would be much like this forum.
Not sure how similar my RCMD is to your husband. My primary problem is low platelets. Range between 8,000 and 10,000. HGB is about 11.6, RBC 3.84, WBC 1.2. Am on Procrit to boost my reds. Is has really helped for over 2 years.
I have 3 lines that are cloning and producing many, many abnormal cells. There are still some normal cells in each line that are enough to get by pretty comfortably.
Primary day to day concerns are over accident, spontaneous bleeds, infection. But so far so good.

[TEMBO]

Neil;

Your quote from the AAMDS Pub makes me think about something the MD Anderson Hematologist said. My husband has a history from 1999 of an autoimmune disease. My husband does not test positive for Rheumatiod Arthritis, however our local Rheumatologist finally called it Rheumatoid Arthritis by elimation. For a number of years he was on Enbrel, which now the Rheumatologist says some of his patients are having bone marrow failure due to the Enbel.

The MD Anderson Hematologist thought this four drug protocol might reset my husbands bone marrow system, and not only put the mds in remission but the rheumatoid arthritis as well. Therefore not having to be on any meds after the protocol.

Thank you for jogging my memory. Too much to keep sorted in my mind.

God Bless,
Karen

[Rackon]

Frank, I can’t tell you specifically how Dad’s oncology hematologist got the job done – as far as I know, he filled out the normal physician authorization and the nurse practitioner faxed it to Caremark & Celgene to get Dad enrolled in the program. As I mentioned, this doc had been using Thalidomide for some time before Revlimid and feels that Revlimid can be effective for different types of MDS including CMML. He has several patients without the 5q- on Revlimid at this time.

Just like any other drug therapy, the docs take into account lots of different parameters when deciding whether or not to prescribe Revlimid – not all MDS patients are the same and not everyone is a Revlimid candidate. I think it depends on your disease progression, your cell lines affected, other health problems and other factors. My dad has no auto-immune disease and as I said above, his main cell line affcted was Hg – his WBCs and PLTs were usually in the normal range even when he was on 2-4 untis HG a week.

There could be many reasons other than not having the 5q deletion why the doc won’t put you on Revlimid – this drug can be tough on your body.

You can PM me if you want my doc’s phone number for your doc to call him.

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