anyone not receiving treatment?

[g-masews]

I’m curious if anyone, whether newly diagnosed or longtime patient receives no treatment whatsoever. It seems that each time a new forum member signs on, they describe their diagnosis and the treatment they are receiving. My husband was diagnosed almost four years ago and the dr. didn’t have any faith in any of the drugs available at that time. He saw an SCT as the only choice for treatment. When we declined, we were somewhat dismissed, although that dr. left that practice shortly after. As I said, it has been almost four years and he doesn’t see anyone except has his counts monitered every 90 days or so by our regular dr. He also has no symptoms, or of course, he would contact a hemotologist immediately. Just wondering if anyone else takes a “no interference” tactic or if every other dr. thinks it mandatory to do ‘something’? He isn’t transfusion dependent, which may be one of the big differences.

[Laural]

I have gone the “no interference” route as much as possible, as my MDS is secondary to initial treatment for ALL. My docs also wanted to go the BMT route initially, but the risks seemed way too high for me as a young mom at the time. I have had periods of treatments, most recently with Clofarabine a year ago, but once the blasts stabilize below 3% and the other counts are holding, my body seems able to maintain the counts for awhile with no further treatment. This is not common for most, but works for me. I work full-time and have a family of 3 teens. My counts are monitored monthly right now.

[LynnI]

^^^ Have you ever been transfusion dependant? And if so, how long between transfusions?

Btw, how wonderful that you are doing so well and for so long.

Lynn

[wjw50]

I was diagnoised with MDS in 2006, I have not received any treatment, my doctor is a wait and monitor type guy. He does bone marrow aspirations 1 time a year and I see him every 6 months and I see my hemotologist every 6 months so I am monitored every 3 months between the two of them. I have had to have 1 iron infusion done due to no iron in my bone marrow. I am tired very often. Have had no other transfusions.
I have depletion of chomosome 7, and have low wbc’s and platlets, and an enlarged spleen. They consider me a 1.5 on the scale. I am typed for a transplant if needed. So far this works for me.
Although being a nurse and knowing the odds and all the blood counts so well. It is still scary.

[jaxem]

G
everyone is different. if a historical analysis of cbc’s show little or no change, why do anything but monitor periodically and transfuse when necessary. Or like Laural, treatment may cause the disease to wane for a long time, perhaps forever. Many patients are on a “wait-and-watch” monitor. My wife had a rapidly progressing RAEB-2 but with great treatment did well for almost 3 years. You didn’t state what your husband’s diagnosis was other than “int-2”. Is that RAEB-2 with chr. abnormalities?

[frank]

i am in “wait and see” situation from 2004.

i had blood TX every 6 weeks, no prograss. No BMT match in my family, failed on Vidaza(just once, had a complicated reaction), some other unsuccessful trails. Maybe i will try vidaza again in the future, but not until my twin daughter getting older enough.

everyone have their own situation, it is the decision made by my doctor(since any treatment is for high-degree MDS) and myself.

i knew at least 2 others in this forum were in the same situation.

Thanks.

[g-masews]

My husband’s classification was RCMD. He had at least 3 chromosome abnormalities of -20q, +3, and +8. 98% hypercellularity but less than 2% blasts, fortunately. This information came from his BMB in 2004. He hasn’t had another since. I worry that his blasts could be higher now but I would think something would show up in symptoms of some sort, somewhere. He shows no effects. We know from his CBCs that his platelets are dropping slowly over last six years from 100,000 in 2002 to 36,000 presently. That will eventually be a concern, but I don’t think there is yet anything that really helps platelets, is there? His HGB has never been below 10.0 so transfusions aren’t necessary, and although his white count is around 1.5-2.0, he fights infection well and never even catches a cold.
I was just curious about this, because so many seem to receive drug treatments as soon as diagnosis is confirmed.

[Jo L.]

G –
My husband is currently receiving Dacogen treatments, after having tried Aranesp and Neupogen. I often wonder what would have happened if we would have gone the “watch & wait” way instead of trying these things. At the time, John was feeling so lousy, we asked the doctor what could be done for him. He had one transfusion, then another after his first Dacogen round, but none since then. Would he have become transfusion dependent? I guess we’ll never know. We like & trust our oncologist, so we didn’t question his recommendations. If only there were a crystal ball that “knows all, sees all”, I’d pay big money to find the right answers.

Jo

[bianca1216jt]

Son dx raeb-2 with monosomy 7 8% blasts 4/08. High dose chemo (cytarabine). all blood counts returned to normal,0% blasts, no monosomy 7 docs still pressing hard for cord blood transplant 6/08 refused wait and see approch cbc check every month all normal, bone marrow tests clean. docs say it will come back but i have my doubts was told that the blasts would never go to 0% after chemo or that blood counts will not totally return to normal without transfusions 11/08 all is normal blood counts and no blasts. Hope i made right choice everyday but to go through the harsh prep for transplant and after weighing the risks of transplant i did not proceed or recieve furter treatments as of this posting.Good luck to all in what ever choices you make.

[jaxem]

bianca
I don’t relish the decision you have had to make. I pray it is the right one. Historically, statistics say it will come back & the “cure” is to replace his blood system with another. the younger you are, the easier that the cure will work. the prep is tough but again not as tough for the young. You might consider seeing Juliet Barker at Sloan-Kettering in NYC for another opinion. Good luck to you on whatever you decide.

[camiboxer]

My dad (RARS) diagnosed back in 2006 but previous blood tests show he had MDS upwards of at least a year prior. No transfusions or other forms of treatment as of yet.
He has his blood tested every 3 months with either his PCP or his hemo.
We keep getting told that whatever it is he is doing he should continue.
He might be a little more tired than his “normal” however he just blames it on age (68). He has some bruising every once in a blue moon but his platelets are well within normal range. He takes Plavix and aspirin for heart and carotid issues so perhaps the bruising is related to that and not the MDS. No other complaints from him.
Some days I think that if he had some form of treatment (transfusions perhaps) and his rbc’s could come up he might notice that in fact he was more tired than he thought but they say he doesn’t need it because he doesn’t complain of anything.
I suppose that it is best that he doesn’t have to add more meds to his current routine but I always wonder if he could feel better with something.

[moman]

Hi everyone, I was diagnosed 3 months ago with MDS
to add to the confusion the doc also called it PPancytopenia,I went to the Hutchinson center to get a second opinion, and was told i have 3 options, Wait and see, get on Dacogen or do high dose inductive Chemo try to get this in remission and hope for a donor,at age 69 i am not sure i want to try the transplant route.My local doc said that i would live a year longer if i got on Dacogen i asked how long would i be on Dacogen, his reply was,for the rest of your life. i find that a hard pill to swallow.I am going crazy trying to figure this nightmare out. any feed back welcomed.

[g-masews]

The first thing is to know what your classification is, what chromosome damage there is, if any, and what blood lines are affected (pancytopenia mean “all” blood lines)as some are probably worse than others. There is no time table for how long you’ll live with Dacogen or not as everyone responds differently. My husband was told 2 years at the most, almost 4 years ago. And he’s never had any treatment of any kind. Basically, how you feel and what you need in the way of supportive care, i.e. transfusions etc. will be what decides the route you go. A mini transplant is probabaly the most you would be able to receive, but the odds are still so poor you may just want to go day by day receiving care if and when you need it. Good luck.

[moman]

g-masews,Thanks for your reply.This was the final
Diagnosis after the initial biopse.
A)50 to 90%Celluar Bone marrow with evidence of a high grade Myelodysplasia,and about 20 % blast
B)Peripheral blood smear for Pathologist review:
-Pancytopenia
C)Flow cytometry, and Cytogenetics:
High grade MDS with 18% Blast
With the comment: The morphologic blast count is as high as 21% to 25% in some areas, which would classify this process as an AML ,or as RAEB in transformation Clinical correlation is required to select the proper treatment.. This is what my Doc wrote and what i have to go by. I have no idea what most of this means.He did say if i did nothing that i had less than a year to live.
I am 69 close to Seventy and except for a rash that itches like crazy i feel fine no fatigue or any thing like it.I am lost.Please give me any feed back that you can.
Moman

[Joan2438]

Maurice; If you go to www:aamds.org/aplastic and click on Online learning center, then MDS, you should get a talk by a doc from Cleveland Clinic that gives a good overview of MDS and the various treatment options. I found it very informative.

Good luck.

Joan

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