30 y/o woman with AA dilemma

[1aplasticdiva]

Hello everyone. I must say I never imagined needing to be apart of a forum like this but honestly I need you guys. I don't know which way to go. I was diagnosed in 9/2009. I have rituxan in 12/2009 and ATG in 2/2010. I was kept on cyclosporine until 8/2010 then switched to prograf. I had to have platelets about every three weeks and blood about every 12 weeks up until 3/2013. My counts fell (hgb 6, platelets 5) and every since then I've needed platelets every week and blood every other week. My doctor just took me off of the prograf since I haven't responded to it. He said my only chance of survival is a BMT. However I don't have a match. All I have is my parents who are naturally half matches. We've searched the database for 3.5 years and I haven't found anyone. Im lost. I don't know what to do. None of the medication is working. Do I insist that my doctors do ATG again? I got a second opinion and that doctor also feels that another round of ATG won't help. Do I have a half match transplant? Its so risky. Has anyone here ever had one? I've tried reaching out to the NIH but they are really challenging me to get very specific records which is tough because most of my records are in Wisconsin and the last year are in Dallas. No one in my family has AA, no one knows what Im going through. I don't know what to do. Im very afraid that I will make the wrong choice. Is there another medicine I can try? Im lost.

[1aplasticdiva]

By the way, I live in the North Dallas area. Anyone else with AA nearby?

[Neil Cuadra]

1aplasticdiva,

I'm sorry that you have nothing but less-than-wonderful options. You never know when an NIH evaluation might get you into a trial, and that option could turn out to the best choice for you. So I suggest that you do whatever is necessary to get your medical records from Wisconsin and Texas. You might have to pay a copying fee to get copies of your medical records, they you have a right to them. You don't have to contact the doctors themselves. The hospital or other institution probably has a medical records department you can talk to.

When you have no full match for a transplant, one of the choices is a haploidentical transplant (a half match from a parent), but graft success is statistically better with a better match, and less likely to to lead to relapse. Another choice is umbilical cord blood (one or two units), which don't need to be an exact match and can produce less risk of graft-versus-host diseases, but usually with a longer recovery time.

[NLJabbari]

Hello 1AplasticDiva,

Sorry to hear that you're in this situation. I agree with Neal in that you should do whatever you can to get a hold of the medical records (info.) that NIH has requested. I went through the same process of getting my son's records for an evaluation from NIH. They did ask for very specific info. We were advised to go through "Medical Secretaries" a separate dept. at our hospital for the information requested.
Fortunately for us, I was able to put together a list of the items NIH was requesting and I emailed it directly to my son's Dr. She had one of her clinic secretaries retrieve my son's MR info. and the Secretary faxed the "Summary" directly to Olga (Dr. Young's assistant) @ NIH.

The following is the list I emailed my son's Dr.
Maybe you can do the same. I know that some Q's do NOT apply to you like #11, but I'm just trying to give you an idea of what you might do.
You should also request a Medical Release Form to be emailed to you from both the Hospital in WI and TX. You must sign and send it back giving them permission to share information with NIH. The sooner the better...

Example of the List I emailed my son's Dr:

1. Recent Medical Summary (last 3 mos.)

2. Brief History: Date of diagnosis, CBC at diagnosis, CBC pre-ATG, Initial Treatment (hATG 4days plus CsA, G-CSF, etc…)

3. Copy of Fanconi Report/Result

4. Copy of Telomere Report/Result

5. Response time post ATG:

6. Date weaned off all meds:

7. Relapse Date:

8. CBC w/Diff @ relapse before “reinitiating” CsA

9. Current History/Physical

10. Current CBC w/Diff and Reticulate

11. Most recent Copy of PNH Report

12. Most recent Kidney & Liver Function Results

13. Most recent copy of BMB Report w/Cytogenetics, w/Flow Cytometry, and FISH

14. Number of PRBC Transfusions since "reinitiation" of Cyclosporine (in 2012)

15. Patient Demographics

16. Physician Contact Information

FAX: (301) 402-3088
Attn: Olga Rios

Lastly, I would like to share this VERY RECENT Article...it is very interesting and encouraging news. News that we found to be very exciting as my son does not have a perfect match either. So far they have found 4 potential (9 of 10) matches. This article talks about the use of Cyclophosphamide Post Transplant and how it helps with engraftment and GVHD. Very good news.

BTW, have they been able to find any mismatches for you? 9/10?

http://www.sciencedaily.com/releases...1113143133.htm

Well, I hope this helps a little. You're doing the right thing by reaching out to get more info.

Take care

[1aplasticdiva]

Wow. Thank you so much for the tips! I think once I receive my complete medical records from Wisconsin I'll sit down with a medical secretary have her help my pick out the pertinent information. Some of it recognize, some I don't. I am going to keep trying and pushing. I have my mother as a half match which is okay. Im sure of the exact hla matches. This cyclophosphamide sounds very promising! I like hearing things like that. Once my medical records come I can send those to Ms. Olga and continue on my journey.

Thanks!!!

[Marlene]

Look into Johns Hopkins. They are doing half-match BMTs with post cytoxan with good success with people with refractory SAA. Contact Dr. Brodsky.

[Mswiz]

I only had a partial response to horse ATG done Sept 2013 and my counts have been low needing red blood transfusion anywhere from 6-12 weeks. I have also been considered in the SAA range.

I wanted to get away from transfusions as my iron is too high now from over 40 units so doc was going to try eltrombopag but since the cost is so high, he said we would try EPO first. My hem went from 7.8 to 10.4 in a couple of months with weekly shots and I feel as if I'm out of the fog, although I still get fatigued.

Thought I would share my trend in the right direction as I had been dreading nconsidering a BMT earlier that spring.