Anyone from Georgia going to AAMDS Conference

[Al's Wife]

My husband was recently diagnosed with MDS and I am hopefully going to go to the conference in July to learn as much about this disease as I can. Just wondered if anyone else from Georgia is going to be there.

Linda
Husband diagnosed with MDS 5-26-2010. I think he is RCMD INT-1 risk group. I've had two differing opinions given to us, so that's why I'm not sure of his classification.

[bebop]

hi. I am from Ga too but not going to the conference. I found a place online to get a packet sent to me from this site but darn cant remember where I found it. The packet has tons of info. I think it was on the aa mds site. My Dad has mds rcmd.

[Al's Wife]

Hi Bebop,

I've gotten a lot of info both from the doctor's office as well as online but am hoping to go to the Conference to see what's on the horizon. Sorry your Dad has this disease. We went to Emory for a second opinion last Friday and the doctor at Emory admitted he had never seen a case like my husband's before with the particular chromosomes that are affected. Not being a medical person I am at a loss with the bone marrow report but I have tried to read up online and figure them out. Probably not a good thing as I may be reading too much into them.
Linda

[bebop]

yeah I feel like I am on overload! I have not seen my dad's biopsy report and probably a good thing! lol I research it to death. Unfortunately my Dad decided not to do the chemo or other treatments other than his transfusions. He is growing weaker all the time. We go back to the dr today and will see what is going on with him. She never mentioned chromosones to us though. Good luck hon.

[Bob Macfarlane]

I am actually from Florida but spend most of my time in Georgia. I will be attending and I also have been diagnosed with RCMD. Keep you husband healthy and moving. The median life expectancy with RCMD is thirty five months. That is scary but I am into my fifth year of being diagnosed with a bone marrow biopsy. In 2001, I had a doctor tell me he expected I had MDS. I refused the biopsy because in 2001 there was nothing they could do about MDS and I had no desire to be hurt just to satisfy the doctors curiosity.

I am not staying at the conference hotel. I found a place in Virgina for less than 1/2 the price and within walking distance of the DC Metro.

[bebop]

hi Bob. when my dad was diagnosed in March this year they gave him 6 months. He is sliding pretty fast. He will be 81 in August. I don't think he will make it that long. He is really weak now. I take him back to the dr this afternoon and will have his new cbc results then.
Have a wonderful time at the convention.

[Bob Macfarlane]

Hope you don't mind but this ol' Christian that happens to worship in a Southern Baptist church will be giving your dad some knee time...Deacon Bob

[Al's Wife]

Bepop,

You and your Dad are certainly in my prayers too. I obtained the whole bone marrow biopsy report. It of course looks like Greek to me, but I have been trying to deciper it. As I said above, probably not a good thing. Try to keep your spirits up and spend as much time with your Dad as you can.

Bob,

What kind of treatment have you had so far? My husband is doing much better. He just finished his first round of Vidaza last Monday. He gets an IV 5 days every month. So far, so good. We just hope he's one of the ones that benefits from the Vidaza. So we'll have to wait and see. When they first diagnosed him on May 26th, it was devastating; but we've slowly adjusted and thanks to all of the forums and the people who have battled this disease and are so positive, it has helped immensely.

God bless all.

Linda

[bebop]

Bob heck no hon! prayers are always welcome! thank you so much! not sure if I said it or not but Dad told them at the time of diagnosis that he did not and would not do chemo. it was his choice and I fully support him. He only has one kidney and the chemo could have destroyed that so yeah I agree with him.

Originally Posted by Bob Macfarlane

Hope you don't mind but this ol' Christian that happens to worship in a Southern Baptist church will be giving your dad some knee time...Deacon Bob