[Suzanne]

Karen, I went to Hopkins for a presentation on new treatments and future possibilities, a vaccine was one of the four categories they talked about. I too had heard about research
into a vaccine at MD Anderson 2 or more years ago but then heard nothing more. The presetation at Hopkins talked about it as a “pilot” research project-that is before even a phase 1 study. The gist of it was that they are just starting to try it with humans. They were starting to use it
with patients with CML-I believe they said they had worked with 9 people so far. The theory was that for some reason our immune system does not recognize defective cells and kill them like normal people They were usung it with people who had had the disease for at least 5 years. My notes are a little sketchy since the presentations were fairly complex even tho meant for the lay person. What I remember is that this direction is more as a preventative for relapse or to encourage the system to get kill off new cancer cells They even talked about trying a booster after a period of time. I think from what I have written in the margins that it is being used after the patient has used Gleevec but as I say my notes are sketchy and this is definitely in the very earlystages of reasarch. My Doc gave the presentation and I toldhim to hurry up in case I need it. But they aren’t even considering doing it with me at this point as a preventative.

[Suzanne]

Hey guys! The reality is that there is no clear answer as to what might give an individual the best chances for the most quality time to remain on this earth if they have this disease.

I have been on this forum a long time and my gut feeling is that we have probably lost about the same number of people who tried the transplant as those that tried other pretty serious treatments. You have to factor in that a good number of people weren’t eligible for a transplant when they traveled a different path of treatment.And some did not have the time or the contacts with knowledgable docs to have any choices.Stem cell instead of a full marrow tranplant is quite new as are the mini and the midi tranplants. There are also people who are trying other new treatments that they have no way of knowing whether they could be a “cure “or give significant disease free time or not because the patients surviving in remission are only a year or two out from the treatment. The same goes for the stem, midi and mini. I have certainly known people who did a transplant in what looked like the best scenario-matched sibling- and either had the bone marrow not engraft or their own old cells come back. We also have some that made it through and are feeling better every day but have no quarantee they won’t relapse. The same goes for a few of us who tried heavy chemo and experimental drugs to get into remission.Some of us made it throughand others either never made it into remission or relapsed.
Then there are those who are using drugs -not with a lot of chance to get into remission but to keep the disease under control and live with it hoping that something better will come along and keeping as high a quality to their days as possible in the meantime. And those who have elected to try natural things to support themselves pretty much the same way-to improve the quality and lengh of time. And in each case some have done better then anyone predicted and in others the disease won.
If we are lucky and under the care of a center of excellence or doctors that are envolved with research each of us will have choices. Now that some drugs have been approved even people with just a knowledgeable Hemo will have some choices.
As far as I can tell the reason that they say that a Transplant is the only cure is that they do have patients that had a transplant that are disease free more then five-maybe 10 years out and they don’t have patients that tried anything else in that category. However none of the treatments we are trying now were there five years ago. And they are working on new ones in many places. (at a talk I went to at Hopkins recently they were talking about turning genetic signals on and off in cells and very early work in vaccines to prevent relapse.)
Anyway this is the long way of saying there is no right answer. You are taking chances with your life no matter which way you go. Each person has to look at the choices they have as an individual and do the best they can to make the decision that they feel is the best one for them given all the pros and cons their doctors give and their families come up with after researching and talking to people on this forum. There are no right or wrong decision and no way of knowing what would have happened if you had chosen another route.

[Suzanne]

Sounds to me like they do not have a definite diagnosis.Can’t tell you how long to wait. I believe if they do a bone marrow test they will know whether you have MDS. I would go to a Hemotologist that is familiar with MDS and find out. Put Mono in a search engine. We used to call it “the kissing disease”& thought of it as a teenage disease. It does make you very tired and you usually run a low fever. And poeple other then teenagers do get it. For your sake lets hope it is mono.

[Suzanne]

It wasn’t 5-6 months to get approved. You have to remain disabled for 6 months before the start of benefits. However the 6 months ran from the date you were considered to have become disabled. Even tho I applied later.I was declared disabled as of the date I stopped working (the date I put on my application as the date I became disabled) Can’t remember but I am sure I had blood test results for that period-they were testing everything pretty frequently at that point.

[Suzanne]

I qualified for Soc Sec disability with no problem with MDS-RAEB. Just supplied them with a description of the disease, the FAB life span chart, a copy of my bone marrow test results and a copy of my blood counts showing that my white count was low enough that I should not be out in public. They put my request through on a rush status.I supplied all the information I could with the application forms figuring that the medical personel reviewing the case might not have ever heard of MDS. I never asked my docs about disability although I am sure they cooperated if they were contacted. A volunteer that the AA-MDS Internation Foundation put me in touch with told me to apply. It had not occured to me since I could walk and talk and had no visable or physical disability other then that an infection could do away with me.
Don’t know the rules about private disability insurance but a friend of mine just qualified with a fractured hip that made it painful to more around.
I have also been told that there are attorneys that specialize in helping get you through these systems.

[Suzanne]

According to my notes from the talk at Hopkins Dragogen is a “cousin” of Vidaza. I would ask the docs what the difference is in effectiveness and side effects. When I was looking at treatments they had that kind of statistic. They also often told me that one treament vrs the other was more effective in disease with a specific characteristic-ie 5q-chromosome change or type of disease.

[Suzanne]

you know I don’t remember what my counts were during chemo -only that they took things down to zero and kept my RBC and platelets at a safe level with transfusions until my own counts came back to a certain level.

[Suzanne]

Marsha. If you are running around having fun while you have shingles you do have a light case! I got them a few months after I finished the heavy chemo and I told my docs I would rather have chemo again the a recurrance of shingles-talk about something hurting! They too told me it was not unusual and my body fought it off just fine but I sure did not feel great during the fight!Glad your case is light!

[Suzanne]

Don’t get discouraged. It felt like forever for those counts to start back up and there were a couple of “false starts” Once they really started they moved up pretty fast-but it seems to me it was about three seeks before they started. There was a marker I had to hit to go home and I went home at about 30 days on the first round. With the consolidation they were even slower to come up. I was afraid they weren’t going to come back. They let me out before I hit the markerthat time because my Dr. recommended letting me go home and come in every day as an outpatient. I was getting really “stir crazy”
Hopkins wanted a “clean bone Marrow” (they told me the best was nothing showing at all after the chemo and no sign of the chromosome abnormalities. Then they wanted no sign of either the MDS or AML in the new cells that came back. My understanding is that both types of cells have abnomalities that they can see in the smear. They have not mentioned what % they see of blasts since I went into remission and I see nothing about that on my bone marrow test results. The only thing I can figure is that what they do see are normal and will mature or kill themselves just as they are supposed to when the marrow is functioning correctly.
Hopkins was very interesting. I will start a new subject line with what I learned there when I have time to look at the material again.

[Suzanne]

Gloria. Same thing happened to me -sudenly AML and the chemo wasn’t exactly pleasant but not nearly as bad as I espected. they kept everything under contrrol and luckily even tho I was supposed to have a type of MDs that was chemo resistant and AML coming from MDS is consideered to have a lower chance of success anyway-the forst round put me in complete remeiison. I went on to a second round of chemo and a year of a trial of Zarnestra to try to prevent relapse. Today, I seem to be healthy and no sign of either the MDS or the AML in my bone marrow tests. My counts are pretty normal and I am taking no medication. that is why I say the AML turned out to be the best thing that happened to me-Hang in there and I hope your husband has the same luck! By the way, I learned at the presentation on new research direction at Hopkins that the Tipifarnib that some of you have mentioned is Zarnestra-just another name.

[Suzanne]

I am meeting a friend tonight that I met probably through this forum-I’ve forgotten-She had treatment for secondary MDS ( breast cancer treatment)she had full chemo and a really rough time at Hopkins. I was on the Zarnestra trial and being checked often at that point and went upstairs to visit with herduring her chemo stay while I waited for my CBC results. She too is in remission and for an even higher risk disease. I know part of her expectation is to be around while her young daughter grows up. She is also doing a lot for awareness work and fund raising for both breast cancer and our disease. I will tell you more after I see her tonight at the talk our Docs are giving at Hopkins re developments in treatments. We will be trying to find each other witha few more pounds & hair instead of a scarf or wig!

[Suzanne]

I had Ara-c in both chemo rounds and VP-16 in one so your mom and I have some similarities in treatment. I had Daunorubicin but no trisenox. Tell you mom I am thinking about her wishing her well and looking at the world through very similiar eyes. I too know that feeling when you see a bruise, feel tired or those counts drop just a little bit on a CBC. They have now put several months between blood checks for me-That makes it easier not to worry.

[Suzanne]

Dennis, I am officially “in Remission”! And there are others on the forum who are-not many but some. You can see from my signature line what I did to get there. Two rounds of heavy chemo and a year on a trial of Zarnestra hopefully to get through the period when relapse was most likely and catch any bad cells that chemo might have missed and prevent them cloneing or whatever. It has been 2 1/2 years since they announced I was in remission with the 1st round of chemo. At first I just figured I was buying time and either the MDS or the AML would come roaring back any minute. They told me that the more time that passed in remission the better chance I had( For extended time I think since there is not supposed to be a cure other then a transplant) –so I am beginning to have a little hope that we might have beaten this thing at least for a significant period of time. Today I can say I feel like my old self. I did not realize until I began to feel that way how many small effects there were from the diseases and/or the drugs.I don’t think about it all the time any more and I don’t think of myself as a sick person who temporarily feels ok. I am back living life in an ordinary way-but with a special understanding and appreciation for every day, how lucky I am and an awareness that it isn’t forever and that trouble can come with little warning like a truck without lights!True for everybody whether they have an illness or not but most don’t think about it.

[Suzanne]

that is about right. It usually takes a week to get the marrow results and another week to get the cytogenetics(sp?)that is pertaining to any chromosome changes.

[Suzanne]

Yes they are using Zarnestra instead of chemo for older patients. Last I heard it had about a 30% improvement rate. It is a pill-easy to take and few side effects. It should be in phase three trials now-They were hoping for early approval because of the good results and so few alternatives for patients in their 70’s and 80’s but FDA wanted the phase three conmpleted. contact Dr. Judy Karp at Johns Hopkins 410-502-5399.She has been very involved with the research on this drug and would know where you might get it.

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