revlimid for 5q- with no history of transfusions.

[plantcollector]

I was diagnosed in 2001. I am fortunate that I have never had a transfusion. My hemoglobin runs about 8.0 or +. I lead a normal life. I do have a history of high platelets. I am now discontinuing Anagrelide which I have taken for 6 years. I now have “moderate” fibrosis. My doctor wants me to try Revlimid for three months. If I feel good, I am at a loss why to treat at all. Celgene’s website says that Revlimid is for patients who are transfusion dependant. That’s not me! Am I missing something here?

[Neil]

Is your doc a hematologist experienced in treating MDS?
How old are you?
Younger patients can get by with HGB at 8.0 but as they age they begin to feel the effects of low oxygen going to their organs.
Ever try Procrit or Aranesp?

[plantcollector]

Thanks for your reply. I am 67 years old. Somehow, my body tolerates a low hemoglobin number. It is usually around 8.0 to 8.5. I have never seen it under 8.0. My point is this – why treat anything if I feel okay? My doctor is a hematolgist associated with a cancer care center at a fairly large hospital in St. Louis. I have been told he was the chief of hematalogy at this hosptial, so I know he is experienced. I do not understand the big rush to take Revlimid if I feel pretty good. I do have high platelets, and I will not be taking Anagrelide any more. Besides being 5q-, I think I am also 20q- and have a translocation. I don’t recall exactly what that was. Other than Anagrelide, I have never been treated for MDS (no transfusions). I just had another bone marrow biopsy, and the doctor told me that I am classified as 5q- syndrome. I believe that is a type of MDS. I do not have a MPD. Maybe I will go to another hematologist for a second opinion. Why pay for a very expensive three-month trial of Revlimid if I don’t need it now? Just wondering if someone else had a thought on this.

[Neil]

Having an experienced hemo is a plus.
The 5q- is probably why they want to try Revlimid.It has had some pretty impressive results with those with a 5q-.
The 20q- and high platelets is unusual. As a rule 20q- presents with low platelets. It also has a pretty good prognosis.
How high are your plts?
A second opinion could be a good idea. Would your current hemo set one up for you?
Your point about not treating your situation is valid. But you probably will never feel better than you do today. Something to cover with your hemo. It is tough to take a drug that will make you feel worse than you feel today.
Keep in mind as you get older your tolerance for low hemoglobin will decrease.
Have you discussed Procrit or Aranesp with your hemo? Both are covered by Medicare Part B and the balance by a supplement (assuming you have one).
If you go on Revlimid wouldnt Medicare cover the cost?

[Suzanne]

Unless things have changed having 5q- means different things as far as prognosis. I have not heard of it being a “classification” of MDS, although it is fairly common in those of us that have one of the classifications and Revlimid is particularly effective as a treatment for those that have it. I was told it was a good thing in the RA and RAR categories and a negative indicator in the RAEB classifications when I was diagnosed. Having more then one chromosome change also influences both prognosis and effectiveness of different treatments. MDS is still rare enough that most Hematologists have not seen very many cases and most of the cases they have seen are in older patients (and I meant a lot older then you and me). Unless they are in a Center of Excellence for MDS that does research on MDS treatments, most doctors have little experience and are limited to the few approved treatments.
My original Hemo would have sent me for induction chemo right away. When I went to Hopkins they took a wait and see approach because I was symptom free until the disease started moving. Right now I am on the “wait and see” list again because the 5q- is showing up on my bone marrow tests after 4 years of being in complete remission. Everything else is fine(all counts are in the normal range) so they aren’t in a hurry to try the Revlimid but they will start it as soon as they see any evidence of the MDS returning. My understanding is that they are watching for my counts to drop and the specific MDS cells to show in a bone marrow test. However relapse is a totally different thing then initial onset of the disease.
I can understand why you would not want to start a drug until you know what benefit your DR. is looking for. My understanding is that they have not taken anyone off revlimid unless it did not work or stopped working. So they are making sure I have something there to treat before they start something that I could have to deal with every day for the rest of my life.
Ask questions, get answers, and go to a center of excellence for a 2nd opinion

[Zoe]

Plantcollector, Are you into herbs? Just curious what type of plants you collect?

I agree that someone experienced with MDS is a real plus. Most oncologists don’t really know a lot about it. I wonder though, if your doctor is considering Revlimid because he worries about your hgb being so low for so long. Even if you feel good, is there concern about organ damage? I would go for the second opinion.

If he is classifying you are 5q syndrome, he is saying you have no other chromosome abnormalities. That is part of the definition from what I have seen. The high platelet count would also go along with that.

Suzanne, I am finding that they are starting to look at 5q syndrome in its own category since it has such classical symptoms. I believe it is a new WHO classification.

I have read your byline many times and felt so encouraged. I have read that 5q with excess blasts is almost invariably deadly, but you are living proof of the fallacy of that statement. It is such a blessing to have this group!

Zoe

[Suzanne]

Zoe, You are so right. I emailed my Dr after reading about the 5q- syndrome in the WHO designations. He said that it is entirely different then those of us who have the 5q- with MDS/AML.
Plantcollector, He also said that the 5q- with the 5q-syndrome is a good thing and that it is a “good kind of MDS”whatever that means -probaly easier to live with for an extended time period- so I think you are luckier then many of us. At least I had it right that in some cases 5q- is a good thing and in others it is a negative. There are so many unknowns, so many new things happening and so many different opinions about this family of diseases.

[plantcollector]

I really do appreciate everyone’s input on this. Yes, I have always believed that in my case that 5q- was a positive thing. After the latest bone marrow biopsy (last month)my new doctor said that the pathologists agreed that my condition was 5q- syndrome. However, I do have other chromosome anomolies. But maybe in my case they are not causing any problems. I do want to get a copy of the report just so I can know more of the technical “stuff”.

In answer to a question posed by one of you – one of my hobbies is NATIVE plants. That involves finding, photographing, trying to identify and collecting (pressing) specimens of native plants.

I have now decided to wait and not take Revlimid at this time. I am not transfusion-dependent. I have never had a transfusion at all. The day may come when I need to be on that drug. But for now (by some lucky happenstance) I am doing what I would call very well. Reading this forum has been enlightening to me. This is my first opportunity to have any contact with real people who have a similar condition. I will continue to read, learn and hope.

[sdrake]

I did not realize that sometimes -5q was a positive thing and in other instances it is considered negative. Dad has CMML and has the -5q. I have always thought it was a “good” thing because it made Revlimid a good option. Dad has been on Vidaza for about 2 1/2 years with good results. It appears it isn’t working as effectively. Dad’s spleen is enlarged again and his latest BMB showed 5.6% blasts in the bone marrow and 2% in the peripheral blood. He has been off Vidaza since the middle of June. He is going through the process of getting Revlimid. We are expecting it any day now. We are all hoping it will be as effective for him as the Vidaza has been. I would be interested in hearing anyone else’s experiences with Revlimid after taking Vidaza.

Thanks,
Shari

[chuckk333]

I, for one feel that getting other opinions from experts in MDS is a very good thing, especially since you are not planning treatment. I have been in the “watch & see” since my first dx in May 06. I too feel good, and with the blessing of the expert 2nd & 3rd opinions I have received. They say just watch your counts every 2-3 mo. and as long as they are holding, just live healthy and continue with your life.

[plantcollector]

I am not sure what platelets of “88” means. I am finding out that there are a lot of things I do not know. My experience has only been with high platelets – up to 1,800,000 at one point.

[chuckk333]

Wow, thoe platelets counts are high!! Usually people don’t add a K after their count numbers, but 88 means 88,000.

[Kolu]

My father who is 76 years was diagnosed with MDS a month ago. With a bone marrow biopsy they believe he has got the 5q syndrome. His platelet count is very high and he is currently on Thalidomide. Since he had to be given transfusions every 3-4 weeks now he is given Eprex injections to stimulate blood production. This has not dropped his RBCs much but the platelets have gone up quite a bit. Now the doctor is thinking of giving him Lenalid the Indian version of Lenalidomide.I am very worried about him and any feed back is much appreciated.

[helenr]

Hello Kolu

I have sent you a private message re MDS which I hope will be helpful. Helen

[lindajo]

Washington University in St. Louis is a Center of Excellence. Dr. John DiPersio is a great hemotologist with experience also at Memorial Sloan Kettering in New York. I don’t always agree with him but he is very knowlegeable. Have you been there? Cleveland Clinic would be a great choice for a second opinion.

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