My father's journey

[Lisa Lynne]

My father was diagnosed in April of this yr.with MDS. He is 84 yrs.old. He has had 5 rounds of IV Vidaza thus far with very minimal side effects. Now, due to recurrent neutropenic fevers, his hem/onc. md. is advising we stop the treatment, as he feels the Vidaza itself may be causing the fever. He has been hospitalized twice with the fevers, each with negative cultures, so this may true. We had a second opinion of a physician at H.Lee Moffitt in Tampa, who advised if going off the Vidaza, to start on Procrit and Neupogen together and to also get bloodwork for "TCR gene rearrangement" and "flow for LGL". We are getting those drawn this Mon.but have not started on the Neupogen and Procrit, as our appoint.with his hem/onc.is not until this Thurs.and we haven't discussed with him the advice of the other md. Any thoughts on this treatment option? Has anyone done the Vidaza, stopped, and then just received the Procrit and Neupogen, and if so, what was the response. We are afraid, that if we just "watch and wait", that of course, the counts will decline, and worse case scenario, he will progress to an acute leukemia.
Please, if anyone has been in this position, let me know of your experiences.
I feel I am racing against the clock to research and come up with best course of treatment. I am a nurse, and this is still overwhelming for me. Any advice would be greatly appreciated.

[Birgitta-A]

Hi Lisa,
Hopefully your father will get better if he if will get Neupogen and Procrit ! I think all patients with low very WBC:s should try Neupogen or similar drugs. Procrit and similar drugs have best effect if the patient’s own EPO from start is less than 500.

When they mention T-cell receptor gene rearrangement and flow cytometry for large granular lymphocytes they are perhaps thinking of another dx than MDS. You could ask them why these tests are done.

Do you know anything about your father’s blast cell count?
Kind regards
Birgitta-A
70 yo, MDS Interm-1 dx May 2006, Neupogen 2 injections/week since neutropenic fever Sept 2007

[mannythedog]

Lisa,

Hello. I am Scott Schultze. My father died 12/23/2008 of Hypo cellular bone marrow leukemia. I can rehash every thing he went through, but I will let you read for yourself. {this site Dad has hypo-cellular acute bone marrow Leukemia by mannythedog}

I came to this site looking for, what is next. I had been all over the net and landed here. My father and I talked, and he agreed to let me document what was happening to him, and I also included my fears and emotions. I left it here on this site for those that would have questions. I am blunt on some points and will answer privet things on the sensitive stuff near the end that I did not publish.

Overall, you are a care giver. It is a tough job, but it is also a honor. The chance to be there is a blessing.

Bottom line. Read this, and if you have any questions, please letter me on this site. There are also many people here that have had different forms of this disease and will be more than happy to talk. They have been a true blessing to me.

Lisa, my prayers are with you and your dad.

Scott.

http://forums.marrowforums.org/showthread.php?t=327