Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > AA
Register FAQ Search Today's Posts Mark Forums Read

AA Aplastic anemia

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Mar 2, 2010, 08:14 AM
peter v. c. peter v. c. is offline
Member
 
Join Date: Mar 2010
Location: amherst ohio
Posts: 9
AA patient for 17yrs.

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.
Reply With Quote
  #2  
Old Tue Mar 2, 2010, 11:03 AM
squirrellypoo squirrellypoo is offline
Member
 
Join Date: Nov 2008
Location: London, UK
Posts: 458
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!
__________________
36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
Reply With Quote
  #3  
Old Tue Mar 2, 2010, 03:21 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
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.
Reply With Quote
  #4  
Old Tue Mar 2, 2010, 11:24 PM
Deanna16 Deanna16 is offline
Member
 
Join Date: Dec 2009
Location: New York
Posts: 39
Talking tee-hee

Quote:
Originally Posted by Neil Cuadra View Post
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
__________________
~Dee~ ) 29yr, wife and mom of 3 :: Dx Moderate AA 9/09, treated with IV iron, currently "watch and wait" :: RBC,Platelets "ok" - low WBC and ANC
Reply With Quote
  #5  
Old Fri Mar 5, 2010, 11:17 PM
peter v. c. peter v. c. is offline
Member
 
Join Date: Mar 2010
Location: amherst ohio
Posts: 9
Doing great

..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
Reply With Quote
  #6  
Old Mon Mar 8, 2010, 09:31 PM
Laura Laura is offline
Member
 
Join Date: Aug 2006
Location: Minnesota
Posts: 433
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
__________________
Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
Reply With Quote
  #7  
Old Sun Mar 14, 2010, 06:54 PM
peter v. c. peter v. c. is offline
Member
 
Join Date: Mar 2010
Location: amherst ohio
Posts: 9
Laura

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.
Reply With Quote
  #8  
Old Thu May 27, 2010, 12:32 PM
Jeffsam Jeffsam is offline
Member
 
Join Date: May 2010
Location: Delray Beach, FL
Posts: 3
Also Dx sAA 17 years ago

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.
Reply With Quote
  #9  
Old Thu May 27, 2010, 07:14 PM
Julianna Julianna is offline
Member
 
Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
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
__________________
Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
Reply With Quote
  #10  
Old Thu May 27, 2010, 07:42 PM
peter v. c. peter v. c. is offline
Member
 
Join Date: Mar 2010
Location: amherst ohio
Posts: 9
Hi again

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.
Reply With Quote
  #11  
Old Fri Jun 4, 2010, 09:45 PM
fibogann fibogann is offline
Member
 
Join Date: Aug 2006
Posts: 194
Quote:
Originally Posted by Julianna View Post
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
__________________
Peter Lim, Dad to Stan, age 17 at time of dx Feb 2002VSAA; tx. ATG, cyclosporine, predisone; alternative herbal supplm & shark liver oil, off all meds 5/2002 normal blood counts. Only on shark liver oil.
Reply With Quote
  #12  
Old Tue Jun 8, 2010, 06:13 AM
Julianna Julianna is offline
Member
 
Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
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
__________________
Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
Reply With Quote
  #13  
Old Mon Jun 14, 2010, 10:03 PM
fibogann fibogann is offline
Member
 
Join Date: Aug 2006
Posts: 194
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
__________________
Peter Lim, Dad to Stan, age 17 at time of dx Feb 2002VSAA; tx. ATG, cyclosporine, predisone; alternative herbal supplm & shark liver oil, off all meds 5/2002 normal blood counts. Only on shark liver oil.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
AA, MDS & PNH Patient Support Meetings -- Ontario AAMAC Canada 0 Thu Jun 9, 2016 01:14 PM
brand new AA patient with celiac disease susansr AA 12 Mon Dec 8, 2014 04:16 PM
Help me regarding treatment plan for AA patient dhruba_bd AA 20 Thu Jan 20, 2011 11:51 PM
Sibling was not tested for pediatric AA patient Becca Pediatrics 3 Sat May 8, 2010 08:36 AM
Recoverd AA Patient here for support. Denny54017 AA 12 Wed Apr 30, 2008 02:01 PM


All times are GMT -4. The time now is 06:20 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org