AA patient for 17yrs.

[peter v. c.]

If you need an ear or need someone to chat feel free to contact. Just went through BMT ( July 09 ). I was diagnosed 17 years ago. Share a lot of experiences that no book or internet information can cover. We all might share the same condition but we all have different ways of handling.

[squirrellypoo]

Hi Peter.

Ooh, another summer transplantee! If you look in the Transplants forum here, you can see threads from Vera, Laura, tserdogan, and myself who all had our BMTs around the same time this summer and have been sharing our experiences. I'd be interested to hear what yours was like and how you're doing now. 17 years is a long time to battle this!

[Neil Cuadra]

Welcome Peter. I hope you are doing well post-transplant.

You might find it interesting to compare histories with Andrea Pecor, who has had AA since 1980.

[Deanna16]

Originally Posted by Neil Cuadra

Welcome Peter. I hope you are doing well post-transplant.

You might find it interesting to compare histories with Andrea Pecor, who has had AA since 1980.

I was born in 1980 I really appreciate those who have been dealing with this for so long posting and lending a shoulder and ear....it gives me great hope

[peter v. c.]

..and I was surprised by the quick replies to my post and the genuine interest and concern. I posted on the Bone transplant part of the forum. Please feel free to e-mail mpcarbon@oh.rr.com

[Laura]

Hi Peter,
In a few days, I will have had aplastic anemia for 15 years. Well I don't think I can say I have it anymore as I had a BMT 6-18-09. Where did you have your transplant? How are you doing? Did you have any GVHD?

Laura

[peter v. c.]

I agree. I still say I have AA even though I had my transplant July 09 at the Cleveland Clinic. Knock on wood no gvhd. Doing very well outside a few things like hurting my sciatic nerve ( about over with that with help of physical therapy ). I should have known better, being bad off for 3 years prior to BMT, lost muscle and strength, but was feeling like superman after leaving hospital.

[Jeffsam]

Hi Peter,
This is my first post. I just found marrowforums. How are you doing after your transplant? Before your transplant did you have ATG, and did you ever get any cancers or any other side effects from the treatment.
It's great to find other people who I'm able to relate with about my disease. Over the course of the years I also got small lymphotice lymphoma and the PNH clone. The AA just recently came back with a vengence and my neutrophil count went down to zero for several weeks. I had ATG/cyclosporine treatent April 28,'10 and lucky for me I got a good boost in my counts about 2 weeks later. It looks like a bone marrow transplant is the way to go for me. I think that it will be at Moffitt in Tampa in Sept. '10. I'm still waiting to get an initial consult. When I find out more I'll update in the bone marrow transplant forum.

[Julianna]

Hi everyone... this seems like the place to be!

I was diagnosed with AA in 1996 aged 20, and now at 34 - MDS, and I am preparing for transplant sometime soon. Should know more after this next Wednesday, my first appointment at the transplant unit.

A bit scarey, but bring it on I say! There's quite a few in the same boat. I don't feel so much like an alien now.

I am in Australia - not many of us here (my age anyway).

Take care all,
Jules

[peter v. c.]

See a lot new people going through a lot of new things. Hey Jeff never did the ATG / cyclosporine treatment. I was too far past that window to try. I been doing well as good be expected. Building up the immune system seems the most difficult. Catch a cold it goes on for weeks not just a few days and any other aliments, but their is no comparison to we all have been dealing with having AA. I was fortunate to have a good donor and a positive outlook. I just wish they had this type of treatment years ago. I hope you get this reply.

[fibogann]

Originally Posted by Julianna

Hi everyone... this seems like the place to be!

I was diagnosed with AA in 1996 aged 20, and now at 34 - MDS, and I am preparing for transplant sometime soon. Should know more after this next Wednesday, my first appointment at the transplant unit.

A bit scarey, but bring it on I say! There's quite a few in the same boat. I don't feel so much like an alien now.

I am in Australia - not many of us here (my age anyway).

Take care all,
Jules

Hi Julie/Jules,

Would you mind to tell us what happened in between 20-34 years? Were you still under treatment then or were you in a remission while under some form of treatment? Was it a relapse that caused you to decide on a transplant?

I'm also from Victoria, Au.

Thanks

Peter

[Julianna]

Hi there Peter,

Wow... are you in Victoria, Australia? Cool. I've been doing really well in the past 10 years or so, living normally with a dip in my counts every now and then, but no transfusions. I was on Cyclosporin for about 5 years. But have been treatment free after that for all these years until now.

Last year my platelets started to go down but my Dr didn't seem worried (averaging platelet count about 60-80). But this year they have dropped to stay in the 20s and because of my AA history, they did a bone marrow biopsy. They found some cytogenic abnormalities and diagnosed MDS. Because of my former treatment for AA I'm not eligible for any clinical trial drugs to help me. The only known cure is BMT, and because of my age and good health I am a perfect candidate. And they've recently found me an unrelated matched donor. So I am planning for transplant sometime in the next few months, in Brisbane where my family are (Mum and Dad).

Thanks for asking!

Jules

[fibogann]

Hi Julianna,

Thanks for your response.

I wasn't aware there were restrictions in place for those having previous treatments for AA to be ineligible for clinical trials - perhaps those were specific restrictions on certain trials?

I'm glad on that you have a matched MUD ready for a BMT. Continue to be positive and build yourself up physically and mentally for the BMT, and I wish you all the best.

Peter