Going to the Oncologist/Hemo with my Dad - Finally!

[PeppersMommy]

Good Morning All,

My Dad has finally agreed to allow me to attend his Hemo/Oncology appointment with him today. Thanks to all the support and advice I received here I was able to lovingly change his mind, and for that Im ever so thankful!

Now....what to ask the Dr.?

I know I need to find out what subtype of MDS he has, but what else am I going to need to know?

For some background - my Dad has been having Vidaza therapy monthly since May 2011. His dr. Has recenly said they are stopping this as it seems to be doing more harm than good. My Dad now has a blood test weekly and transfusions every 2 weeks.

Any assistance would be greatly appreciated as I feel like Im playing catch up and my parents have been blindly following 1 dr.'s advice, but cannot answer any of my questions.

Thanks Friends!

[melger]

My first question would be, is he a candidate for a mini stem cell transplant? You would be amazed at how many people your father's age are having success.

Do you have any history about your father's disease? Blood counts? Bone Marrow Biopsy results? I would ask for those as well, because a lot of people on here can be more helpful to you if they knew to what extent your father's disease has progressed to.

Also, why would they stop Vidaza now. It took 6+ months for Vidaza to begin to take effect with my mother. 4 to 6 months is the standard. This would be a very important question.

Please let us know if you need anything. We are all here to help.

[bebop]

I would ask if he is an expert in mds! I can't imagine a dr stopping after 2 months!

[PeppersMommy]

The appointment didnt go well. I provided the dr all the research I found on age not being a barrier for "mini stem cell" transplants. The dr said HE doesnt believe in them because 50% of the patients wont live through the procedure. So I asked the dr honestly how long does my Dad have left he said 6 months maybe 1 year. He followed that up with saying, "Im sorry to say it is a grim situation". I told him then the 50% chance sounds like great odds to me the dr again said HE doesnt believe in it. I felt like I was in a movie....surreal is all that comes to mind. Of course my Mom began to cry and my Dad had an empty look on his face.

Today I called the City of Hope in Duarte, CA for a 2nd opinion. My Dads ins will not cover it so I will rally the family because my Dad is NOT READY TO LAY DOWN AND DIE WITHOUT A FIGHT!!!

Does anyone know of another place in So Cal for a 2nd opinion?

[bebop]

is he not on medicare? that should cover a second opinion. I really think you should encourage your dad to find a dr that specializes in mds! fight for him hon! that dr gave up too soon on the vidaza!

[melger]

CHANGE DOCTORS IMMEDIATELY! PLEASE! Don't walk, run! My mother's first doctor said the same thing. It is so disheartening to hear a doctor with 0 hope. 50% sounds a heck of a lot better than 0%. Are you in California? I would try to get an appt. at Fred Hutchinson. Is that a reasonable travel for you?