New to MDS

[Palacelaw]

Hi,

My mother just turned 53. She was diagnosed with MDS this past summer. She’s been on Procrit for some time. Today her doctor took her off of Procrit and put her on Vidaza because her hemoglobin counts were low. I am relatively new to this and was wondering if anyone could answer these questions:

If Vidaza doesn’t work what is the next step? What are the survival rates like for 53 year old women with MDS? Are there any clinical trials in Ohio that my mother could join?

Thanks for all your help,

Drew

[April]

Where does she live in Ohio?

[Palacelaw]

Near Lima, Ohio.

[April]

I do know that Cleveland Clinic is considered a Center of Excellence for MDS. You may want to check that out and see if she is willing to go and meet with some of the doctors.

[Palacelaw]

Thanks for your help. I really appreciate it.

[shirlsgirl]

Drew,

Welcome to this board! I’m sorry you had to come find it, but you’ll find a wealth of information and support. Best of luck with your mom! Jody

[eve]

hi drew

first and foremost – is your mom being treated by a doctor that is experienced with treating mds patients – has your mom been given a classification of mds

your mom is very young – has anyone mentioned a bmt to her – it is the only chance for a cure

you can check the cancer web site for any clinical trials and this (mds) site

there are some other drugs getting close to being approved among them is revlimid (easier to take than vidaza – it is in pill form) i don’t know if there are any trials open for that at this time

my dad is on vidaza (he is much older than your mom) it has allowed him to go a longer time before getting txs

this forum is a great place to exchange and get information

good luck

eve

[Palacelaw]

My mother is being treated by a doctor in Lima, Ohio. I don’t remember his name, but I do have his card at home. I believe my mom has the RARS classification. I don’t believe anyone has mentioned a bmt to her. I read somewhere that the mean survival time for a RARS patient is 55 months. Is that accurate?

Thanks for all your help and concern.

[Lexingtongrn]

My friend is 65 and has CMML. He has taken Vidaza shots since July ’04. The doctor at Duke in Durham,NC told him the Vidaza shots just bought him some time and the only cure is a bone marrow transplant. We’re beginning the chemotherapy next week that you take before the transplant. He has a younger brother that is a perfect match.

[Neil]

Hi Drew,
If Vidaza does not work, the next step is not clear. There are too many factors to consider.
MDS patients are all differnt. We respond differently to the disease and to treatments.
Vidaza is a great drug—when it works. Stats to date indicate it helps 18% of those who were on the clinical trials.
There are various options beyond. Depends upon her classification, if she is transfusion dependent, if she has blasts in the marrow and or peripheral blood and many many more considerations.
Has she ever had chemo for the treatment of cancer?
As Eve said, an experienced hematologist is an absolute must. She must be treated by a doc that has seen this disease before, particularly the same classification. This is not the time for “on the job training! Many patients have more than one doc on their team. A hemo to handle the MDS and a GP or internist to monitor the rest of the body. In the vast majority of cases the complications created by MDS are more serious than the MDS itself. Many other organs might become involved. Following a very healthy lifestyle —outside of the MDS is important. Diet, rest, exercise and perhaps vitamins may be advisable—if her docs concur. Nothing should be taken without discussing it with her doc. I follow a low fat low carb diet, get in all the exercise I can comfortably handle and get plenty of rest. Take a multi vitamin, B-Complex with Folic Acid & Iron and vitamic C. If I feel a cold coming on I take about 4000mg of C before it sets in. This is all done with my docs approval.
In some cases the disease can be managed. In others transfusions (TX) can support a patient for many years. Know one who has had over 400 TX over 15 years.
Will send you some info if you included your e-mail address in your profile. Too long for The Forum. Be sure you examine the educational materials available on the home page for this site. They are very good.
I am currently responding to Procrit. Am one of the fortunate one who has had good results with it.
Neil

[sarah]

Hi Drew,
Welcome to forum. Sorry to hear of your mothers diagnosis. As you can already tell you will find a wealth of information and support among everyone here. How are her current counts? Any blasts in marrow?
Sarah

[Terri]

Hi Drew, My husband is 59, dx in August 03, they do not think he is a candidate for a BMT, No siblings and I guess at his age they do not want to risk an Unrelated donor. He is on Vidaza.
This is the second time he is taking, Last time 6 months of it, He stabalized and his Blast returned to normal. We had 7 months and the blast did return, He is on the Vidaza again. Counts are holding still the hgb has been 11.7 for the past two weeks, RBC normal, Wbc just a little high at 13.9 and his plts are now up to 77 they were down in the 40s so I am hoping that his counts will start doing better.
Every one reacts differently, We do use a nutritionist as well for diet, vitamins and supplements.
I wish your Mom well with the treatment.

[Neil]

Hi Drew,
RARS is one of the better classes of MDS for one to have. Think 55 months is an old prognosis. One that is a bit out of date.
Docs will focus on keeping her TX independent. Some drugs can help. Procrit, Aranesp, possibly Vidaza, Decitabine.
If TX is necessary, she can survive for a very long time. Recent stats have not been developed for a long enough time to know how long. Would venture a guess at at least 15 years if TX keeps count stable. A discussion with an experienced hematologist can clarify her risk status.
If TX is used, make absolutely certain she gets irradiated/filtered blood. This is a must. It will prevent downstream problems and make sure she does not have difficulty getting matched blood way into the future.
Better to approach these issues now rather than have them surface later on.

[Palacelaw]

Thanks for all your help. My mother had a CBC on 1/13. Her white blood cell count was 5.09, her hemoglobin was 10.3 and her platelets were 220. She received her first Vidaza injection yesterday. My mother’s primary concern is that she keep her medical insurance. She is the primary breadwinner now as my father lost his job. Are there any financial considerations available for MDS patients?

Thanks again for all your help and support. I don’t feel so alone now.

Drew

[Neil]

Hi Drew,
The only routine considerations would be if she were participating in a clinical trial. Or if the doc can get the drug mfgr to pick up the cost.
Could be difficult now that Vidaza is FDA approved.
He WBC and Platelets look good. Need support for the red cells.

[Author]

Posts