[Suzanne]

Hey, Thanks for remembering ancient history with this disease. After 4 years of complete remission it looks like some from of the disease is sneaking back. My counts are fine but the 5q- in my bone marrow cells are back and increasing. Hopkins is watching and at this point we plan to try Revlimid starting in January.Hoping to buy more uality time. However our disease is not predictable and they say I am not even typical of what they know so they definitely do not know what will happen or what will work.So I guess I need to be back in people’s prayers. Thanks for checking on me.

[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.

[Suzanne]

I believe what they call secondary MDS can be caused by chemotherapy for other cancers. You are at a treatment center with a great reputation for treating MDS

[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

[Suzanne]

Dear Gail, I was in contact with your Mom too. I think we both had the 5q-. I was just thinking about her in the past day or so when I realized that I had not seen her post inquite a while. I was actually thinking about “those of us that have been here a while. All of us in that category know your Mom.I wish her spirit well and peace to you all.

[Suzanne]

Quality of life was an issue for me. My original Hemo suggested the heavy Chemo right away but Hopkins, a Center of Excellence, suggested a wait and watch direction. They tried one drug trial and tested my sister for a match for a BMT (she did not match) And you are right they did not go the heavy chemo route until I developed AML. There are people who have gone into remission from MDS fromsome of the drug treatments. I have seen them on this forum. I have not seen anyone who went into remission without some kind ot treatment to kill the bad cells. Some of the new treatment seem to at least slow the development of the disease. As far as I know Aranesp and Epogen are used to stimulate white blood cells to keep you out of danger for infections and have no effect on the underlying disease. Someone who knows more may correct me on that.

[Suzanne]

You are close to right. Before they said I was in remission they destroyed all the mutant cells with drugs. Since the chemo I have had many blood tests and bone marrow biopsies(each is just a small sample of course) and so farmy blood counts have been in or very close to normal range & they have seen no cells with the MDS mutation or the AML mutation The chromosome abnormality I had was also corrected and has stayed that way. As far as I know remission is when there are no signs or symptoms of the disease.

[Suzanne]

Bone marrow tests can be made less unpleasant with drugs. She will probably need a new one since so much time has elapsed anyway. If she does not fit the quidelines that the drug is approved for,see if you can find a drug trial for the drug that she qualifies for. Then the drug company will cover the cost of the drug –ie the phase II trial mentioned in the prior post.

[Suzanne]

It depends on what “long term means” to you I guess. There are more then a few of us living in remission or surviving with the disease in control with treatment-and more all the time as they develop better ways to deal with the diseases. I saw a post from someone a week or so ago that had been in remission from AML for 16 years-mentioned it to my nurse practitioner at Hopkins and she said that they have patients with that kind of long term remission. I don’t think anyone yet can forecaste under what circumstances that might happen for who tho-Hang in there.

[Suzanne]

I did two rounds of heavy chemo. They called it Induction and consolidation. I was in the hospital 30 days or more each time. In essence they destroyed my bone marrow-counts down to nil both times and hoped when it came back it would be healthy and it was. It was long enough ago that I am sure they have made changes in the drugs they use by now. Seems to me I had three different ones the first time and repeated two of the three the second round. It was not as hard as I thought it would be. I was otherswise very healthy. I did get a blood infection and a fungal infection during the process but they were able to take care of both & it was expected and common I was told. Some time during the 1st year after I had a round of shingles and another infection we all carry in a latent version. But again they got it taken care of quickly and said it was very common after chemo. There are many more treatments to choose from now. There were no approved treatments when I was diagnosed-just trials.

[Suzanne]

Hey George! Glad to know there is someone else out there beyond me. Hopkins just told me that they still want CBC’s every 3 months and a BMB every 6 month on me. I told them it gives me mixed feelings-glad that they care and are watching me so closely but also the feeling that they still think the AML or MDS could come back any minute! How often do they check on you? CBC’s don’t bother me but I could do with fewer BMB’s so I hope someday they go to once a year! Did you have MDS that progressed to AML or just AML? My docs say that makes a difference.

[Suzanne]

PS. My news too is good. My routine end of the year BMB shows I am still in remission for both MDS and AML-So I will happily celebrate going into my 4th year of complete remission!

[Suzanne]

Terry, I am so glad to hear your good news. Enjoy your holidays and I hope 2007 is a good one for Bob. Some of us old timers in this disease have to hang around to encourage trhose new to it!

[Suzanne]

Sandy, Not an easy question to answer. #1 they did not even consider a non related donor for me at that time. As I remember,they said if my back really got against the wall they wouold look at a Mini using the child of mine with the best chromo match. I also had read everything I could find about transplants and already decided that I did not want to go that route before the results were in that my sister did not match(my Doc says he would have pressured me if my sis had matched) Somehow taking the one step and one decision at a time has worked out for the best for me. I guess I never asked what my chances were.NIH said that they did not think anything would work (they ran the BMB that showed the progression to AML) and thank goodness my Docs at Hopkins disagreed-As with you, things moved very fast. I know as we got further into it they raised my chances for “longer survival” with every milestone I passed. I got to the better then 50% and then we stopped talking about it. I don’t think they have any idea what will happen with me-We are too individual in the course of this disease as well as individual in the way they choose to fight the battle with drugs. Any kind of sub-type of AML was never mentioned . The only “sub type” I had was in the MDS. And they tell me that I am in remission for both diseases and that either could come back.

[Suzanne]

I think like all else Induction is different for different people but I have to say it was not nearly as bad as I was expecting. You actually receive the drugs a very small part of the time. The rest is watching and taking care of any problems and infections. I am not sure whether induction is different in preparation for a transplant and even three years ago I found that different places were using slightly different combinations of drugs. I did loose my hair & all food tasted like cardboard but they were able to keep the nausea you hear so much about taken care of with drugs.In a cancer center, they have lots of experience making it as easy as possible

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