Help with Myelofibrosis and Vidaza

[Jag2112]

Greetings everyone…and happy new year.

This is my first post on this forum as I just stumbled across it now. I wish I had found it earlier.

Anyway, a quick synopsis of my story.

My father, who is 70, was diagnosed with Idiopathic Myelofibrosis about 18 months ago. Before the diagnosis, he was pale, a little tired, but otherwise in good shape.

After meeting with an oncologist and going through a bone marrow biopsy, the MF was confirmed. Since then, he’s been on Procrit, Aranesp, Prednisone and Thalamid – nothing really improved his condition.

To clarify – his WBC and PLT’s were fine. His Red Count was typically around 2.8 and his hemo was consistently below 10.0

So it went for nearly a year before he had to submit to routine transfusions. He had 8 in all – all at 3 week intervals.

Finally, realizing that the transfusions just weren’t doing the trick, we opted to have his spleen removed 4 months ago. It was “enormous” to quote the surgeon. We always knew it was based on this pain my father had in that region.

Post-surgery, his red count and hemo went back to normal levels, but his WBS and PLTs sky-rocketed.

He hasn’t needed a transfusion since the surgery, but he hasn’t really felt all that well due to the high white counts and plt’s.

Today, unfortunately, 117 days since his surgery, his red and hemo really dropped as his white count jumped to 60.0 and his plt’s around 500.

The oncologist is doing a second BMB to see how the MF has progressed and is now suggesting Vidaza to help control the marrow and hopefully stabilize his numbers.

Sorry for the lengthy story.

My question to the group is centered around Vidaza and what, if any, success stories people have had with it in relation to MF or MDS.

I’m concerned that our oncologist may simply be grasping at straws, trying everyone under the sun instead of focusing on one treatment…but that might be my frustration talking more than anything else.

Any responses, suggestions, or simply prayers would be appreciated.

Thank you,

John
(Jag2112)

[eve]

dear john

my dad (82) has been on vidaza for 14 treatments
he has mds and myelofibrosis – the treatments have allowed him to go longer between txs -he now gets tx every 4 to 5 weeks, where before the treatments it was every 2 to 3 weeks – the doctor is now lowering the dosage to see if they can get him to go even longer between txs – the side effects are not as bad as most other chemo

is the doctor treating your dad experienced in treating mds patients – that is very important

good luck
feel free to ask any other questions you might have

eve

[Jag2112]

Thanks for responding, Eve.

I don’t believe my dad’s doctor is very experienced dealing with patients with MF or MDS – and he has hinted to that fact on several occasions.

He did refer us to Dr. Fruchtman of Mt. Sinai Medical Center in NYC. Dr. Fruchtman is supposed to be an ‘expert’ in the field, but when we met with him some months ago, I was less than satisfied with his approach and his dismissive behavior.

In any case, thanks again for responding. We’ll see what his next BMB uncovers after which we may very well attempt some treatments on Vidaza…

Oh – you mentioned your dad has had 14 treatments… Is that 2 months worth? I was told that Vidaza is taken 7 times in 7 days each month.

Is that your dad’s schedule as well?

-John

[Suzanne]

John, If you haven’t already, take you father to one of the “centers of excellence” if you are dealing with MDS. I honestly don’t know if the same places are expert in the myelofibrosis. Because there are not consistant results to any treatments for MDS, Dr’s do not know what will work for any given patient so in a way they are “grasping at straws”- somehow “educated guess” sounds better to me.Since Vidaza is the only “approved treatment so far,other then supportive care, that is what a local hemo can get. If you are at a center of excellence doing research they have access to trial drugs that might have a better chance of success. The beginning, when you first learn of the diagnosis is alway scary but often things settle down once you know more about your dad’s options. Many of us are well beyond the time periods given in the first prognosis and have had and are still enjoying a very high quality life (valuing every day) Suzanne

[Suzanne]

John, I just read your reply to Eve. I had a very negative response when I first went to a center of excellence too. Others have reported that enough that I now know that reaction is common.I guess they do do many consultations and second opinions. My whole feeling changed once I became a patient there and they were in charge of my care.I have strong personal relationships with all envolved in my care and I trust their advice completely. If your feelings are really strong, try a different Dr.at Sinai or another center.

[Jag2112]

Thanks Suzanne.

Can anyone suggest some centers of excellence in the New Jersey area? Is Mt. Sinai the only local one available, or are there other options?

Thanks again,

John

[eve]

hi john

my dad is being treated by dr silverman @ mt sinai – he has had 14 treatments (each treatment being the weeks cycle of shots)

we are very satisfied with dr silverman (not necessarily with the wait we always have in his office, and the difficulty sometimes reaching him when we are not in the office) – we see dr silverman once a month and have a cbc done weekly at a local hospital (which happens to be a center of excellence)and the results are faxed to mt sinai

eve

[paml]

Hi John,

As I’m sure you’ve researched, Myelofibrosis (MF)is a Myeloproliferative disorder (MPD). There is a MPD Foundation. You can find them at the following address,

http://www.mpdfoundation.org.

There is also a listserv for patients and caregivers with mpd’s, you can find the signup address for this listserv at the following link,

http://listserv.acor.org/archives/mpd-net.html

While MPD’s and MDS have many similarities, they are also like patients with these diseases, there are also many differences. From my research the three physicians that are mentioned as experts with mpd’s are John Camoriano at Mayo in Scottsdale, and Drs. Tefferi, or Mesa in Rochester.

I’m unable to comment on the high WBC you mention, however I’ve read that the rise in your Dad’s PLT count maybe a normal post surgical reaction. Interferon and Hydrea are two treatments that are also often mentioned with regard to MF. The successful treatment for MF will control the spread and take over of the fibrosis in the marrow as this will push the blood cell growth into the long bones and organs.

Best Regards,
Pam L.

[KATHY1]

Hi John, My mom’s oncologist did not specialize in treating MDS. When she started on Vidaza she was not on any antibiotics or nutritional supplements which I think are fairly important when getting this treatment. Needless to say she passed away after her first round of Vidaza because of a lung infection.

Memorial Sloane Kettering is I believe a good option for you. Just find a specialist.

Kathy

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