Newbie says hi, has questions!

[jennie]

Hi everyone~ I am new here and have been reading everyone's posts. I can not begin to tell you what a relief it is to read how you all seem to go on with your lives and continue to educate yourselves. You have certainly helped me to educate myself!! You have helped me to have a much, much more hopeful attitude toward my future. I have a few questions, but first, some of my info:

The doctors I am currently seeing are at Weill Cornell in NYC. The last time I was there (two weeks ago) they said they couldn't tell if I was heading into MDS without another BMBiopsy, and if I got any worse they would probably do ATG. They keep saying I have bone marrow failure, but can't be more specific. Here's the whole story:

I became very weak during workouts (yes, another person who was very healthy and active before AA) a year ago, had levels of HGB 8, RBC 2.4, WBC 3, Platete 130k and the first tx, bmbiopsy by March. That first dr. said MDS with no chromosomal abnormality, wanted to start me on revlimid immediately. 2nd opinion dr. wanted to do more tests, didn't think I did have MDS, but had no idea what I had. The current drs., 3rd opinion at Weill Cornell, a 2nd tx and another BMB in June. They started me on Procrit in April, and it took awhile, but with Procrit alone I had stayed at Hgb @ 10, WBC and Platelets rising too. Unfortunately I have dropped some the last month, but I continue to purify my diet, try to get rest and exercise, and otherwise research supplements, etc.and possible future treatment, if needed.

My questions to all of you are these:

If AA is thought to be auto-immune in nature, should ANA titers be positive? Or does it not manifest that way?

Do you think it is possible I have already contracted Hep C from tx? because I donated blood many times over the years, and never tested positive for it before... I tested very very low viral load a few months ago.

thanks everyone, for your inspiration. I'm sure I will have many more questions! I will probably post this at other forums as well. Can't hurt to search out the most data!

Jennie

[Monica Meyer]

Originally Posted by jennie

Hi everyone~ I am new here and have been reading everyone's posts. I can not begin to tell you what a relief it is to read how you all seem to go on with your lives and continue to educate yourselves. You have certainly helped me to educate myself!! You have helped me to have a much, much more hopeful attitude toward my future. I have a few questions, but first, some of my info:

The doctors I am currently seeing are at Weill Cornell in NYC. The last time I was there (two weeks ago) they said they couldn't tell if I was heading into MDS without another BMBiopsy, and if I got any worse they would probably do ATG. They keep saying I have bone marrow failure, but can't be more specific. Here's the whole story:

I became very weak during workouts (yes, another person who was very healthy and active before AA) a year ago, had levels of HGB 8, RBC 2.4, WBC 3, Platete 130k and the first tx, bmbiopsy by March. That first dr. said MDS with no chromosomal abnormality, wanted to start me on revlimid immediately. 2nd opinion dr. wanted to do more tests, didn't think I did have MDS, but had no idea what I had. The current drs., 3rd opinion at Weill Cornell, a 2nd tx and another BMB in June. They started me on Procrit in April, and it took awhile, but with Procrit alone I had stayed at Hgb @ 10, WBC and Platelets rising too. Unfortunately I have dropped some the last month, but I continue to purify my diet, try to get rest and exercise, and otherwise research supplements, etc.and possible future treatment, if needed.

My questions to all of you are these:

If AA is thought to be auto-immune in nature, should ANA titers be positive? Or does it not manifest that way?

Do you think it is possible I have already contracted Hep C from tx? because I donated blood many times over the years, and never tested positive for it before... I tested very very low viral load a few months ago.

thanks everyone, for your inspiration. I'm sure I will have many more questions! I will probably post this at other forums as well. Can't hurt to search out the most data!

Jennie

Dear Jennie,
Hope you have signed up for the meeting Dec. 15th in Manhattan. Then you can ask different questions and we should learn more about AA & MDS.
Look forward to seeing you there.
Monica Meyer

[seniorrico]

Jennie,
Have you had any blood transfusions? If so,
how many?
Warren Dx MDS RAEB Feb. 2006

[Ruth Cuadra]

Monica,

Can you give us the details of place and time for this meeting? Other members in the New York area may be interested in attending.

Thanks,
Ruth

[Vince W.]

Originally Posted by Ruth Cuadra

Monica,

Can you give us the details of place and time for this meeting?

From the MDS Foundation website:

MDS Patient Support Group Meeting to be held in New York City on Friday, December 15th, 2006

This FREE event will be held in New York City from 9:30-2:00 p.m. Breakfast and lunch will be served.

This meeting is free of charge and open to MDS patients and their guests. Patients and their families will have the opportunity to participate in this informal discussion regarding their quality-of-life issues living with MDS. New therapies and patient treatment options will be discussed. You will also be given the opportunity to participate in a question and answer segment.

Our guest speaker will be Dr. Lewis Silverman from Mount Sinai Medical Center.
For reservations and further details, please call Audrey Hassan at 800-637-0839.

[jennie]

Warren-
I have had two transfusions, probably having another this week. I have been dropping again
How about you? You and I started this journey around the same time, sounds like. I am curious that you got diagnosed so definitely. Do you know what they saw in your marrow that gave you that definite a diagnosis? My doctors don't seem sure enough to tell me anything more than bone marrow failure. I don't really understand why they aren't sure...
Jennie

[Monica Meyer]

Originally Posted by Ruth Cuadra

Monica,

Can you give us the details of place and time for this meeting? Other members in the New York area may be interested in attending.

Thanks,
Ruth

Dear Ruth,

The invitation for the meeting is from The MDS Foundation in Crosswicks, NJ. The phone no. is 1-800-637-0839 and you ask for Audrey Hassan. She will register your name and then tell you what hotel it will be at. The guest speaker will be Dr. Lewis Silverman from Mount Sinai Medical Center,NYC.
It is 9:30AM -2:00PM and breakfast and lunch will be served. I had put this information on this forum and somehow it has disappeared.

Yes, I would like to meet members in this area.

Thanks,
Monica Meyer

[Dawna5]

Originally Posted by jennie

Warren-
I have had two transfusions, probably having another this week. I have been dropping again
How about you? You and I started this journey around the same time, sounds like. I am curious that you got diagnosed so definitely. Do you know what they saw in your marrow that gave you that definite a diagnosis? My doctors don't seem sure enough to tell me anything more than bone marrow failure. I don't really understand why they aren't sure...
Jennie

Hi Jennie,

I'm curious as to what the results of your BMB were? did they tell you anything? what is your cellularity %, my son has a hypoplastic bone marrow, and really, that's all I know that this stage, it's frightening for sure, I wish I had some answers. He's having his second BMB in Jan, first one showed no abnormalities just decreased amount of cells. His diff counts have been holding over a year now, in the normal range of low. Do you know what your diff counts are? Anyway, I can relate to your frustration, it's so hard not to have the "answer". What makes me very worried is my mom had MDS RAEB T, and I can't help but worry that there is some genetic connection. Hang in there and I hope we both get some answers soon.

[mannythedog]

I hope you are feeling well, and that things are progressing in the positive direction for you. I am doing research and was wondering at what platelet level you received your first transfusion, and did it make you feel better, and how long until the next. For my reasons, please see mannythedog, " my father has hypo-celluar acute bone marrow leukemia" for more info on my father. He is at 27 now, and Dr. stated no transfusion until 10.

Thanks.

Scott