Father diagnosed with MDS July 2007

[Fahmi Choudhury]

Hello all, Hopefully everyone is doing fine. My father was on 6 cycle Vidaza treatment ending on July 2010. The oncologist is going to do a bone marrow biopsy and see if the Vidaza had any effect. I have heard many good stories about Vidaza. But unfortunately, Vidaza has only created lower and lower blood counts for my father. He has been requiring red HBGs and platelet transfusions every weekly for the last 8 weeks. He has been severely week and fatigued and have severe nausea. He has stopped eating literally. I am not sure what to do anymore. After stopping the Vidaza, his nausea has increased tenfold. Did anyone experience anything like that? Please suggest. Thanks.

[Mary4Mike]

Haven’t heard of nausea and loss of appetite, however, there are good drugs that can counter these side effects. Megace for appetite and there are several anti nausea drugs. Keep trying until you find one that works. There is no excuse for unending nausea and I have heard those exact words from the medical community.

All the best to you father. Hope the BMB shows promising news.

[maueenh]

Fahmi

My father had great success with Vidaza but he did have a similiar reaction to Dacogen. When you refer to 6 cycle what period of time are you referring to?

My father received it monthly for 10 months until suddenly it stopped working. It’s important that he gets nutrients so try Ensure or some other high protein drink.

Maureen

[Fahmi Choudhury]

Mary, Maureen,

Thank you for your reply. One cycle Vidaza refers to 7 shots of Vidaza every 28 days. His BMB just came back. It was inconclusive as the bone marrow was too dry. So the doctor said it could be bad or good. Bad in a sense that the body is not producing enough marrow, and good in a sense that Vidaza has killed all the bad marrow cells and now the body is trying to regenerate them. I hope and pray its the later one. Mary, we have tried few anti-nausea medication such as estimatol, gravol.Both seems to be noth working. On top of that, for the past 5 weeks he has been having severe stomachache. They have conducted Ultra-sound test but did not find anything. I need to mention that my father suffers from fistula in his peri-anal area for more than a year now. He has gone through over dozen surgeries in that area everytime there is an infection there. Due to the infection it causes pain and he has been on some high end pain medications as well. We do not know how he is having stomachache. Mary did your husband or Maureen did your father suffer from any stomachache. Hope both are doing well. Thanks.

[Breakofdawn]

My father was also diagnosed with MDS,(at age 63) IN June 2010, We are devasted, and don’t know much about the disease, We are learning via internet,and what the doctors say, which I feel that their isn’t much hope from what I have read. Any information you can give me would help!! This is my email Breakofdawn1168@peoplepc.com I am so sorry about your father, God Bless your father and your family, I wish the best for all of you, As I wish the best for my father too!!

[Mary4Mike]

Fahmi,
My husband never had stomach aches of upsets, but he did have severe right side pain. He ended up having an absess in the liver which ultimately went away (long story) and got relief. Kytril, zofran and anzemet are a few prescription meds for nausea due to chemo. They are usually given prior to treatment. Infection could be causing the problem or if he is taking antibiotics for it, that could be the it. Sorry I couldn’t be more help.

Mary

[Mary4Mike]

Breakofdawn,

There is always hope. Read some of the posts on here and you will see that many have had this disease for years. There are treatments to try and things that can be done to boost energy, etc. If your doctor doesn’t offer anything, I would be looking for one that does.

All the best and God bless,

Mary

[Gio]

Hi Breakofdawn.

My dad has just been diagnosed with MDS. He will turn 70 in November. I too am devastated. We only received preliminary results from the bone marrow biopsy. I pray his condition will be classified as Low Risk. I pray God will grant him another 10 years with us – I am not ready to see him go. The prospect of loosing him as early as a few month from now is tearing me inside. I will keep your dad in my prayers too.

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