My cousin diagnosed with Aplastic Aneamia

[Uk2013]

Hi all I'm new to forums so forgive me if I'm a bit slow in responding as this is all new to me, my cousin aged 32 has been diagnosed with severe aplastic Aneamia
he has had a course of immunosuppressive drugs ATG which we just found out was unsuccessful, he has a sister who was not a match for bone marrow transplant and a brother who is only half a match, I would really be greatful for some advice, as we are all very concerned for him. The next course of action is to use his brother half Mach for transplant, has anybody else experienced this type of treatment, also to everybody else with this difficult condition I wish you all the best ,many thanks for reading this post

[NLJabbari]

Hello UK2013! I'm no expert, but I believe that common protocol in the U.S. would be a second round of ATG (horse). I don't think half a match is a very good match for bmt, but not sure what your cousin's docs are planning for him. How long ago did he undergo the first ATG treatment? Did they wait at least 6 months for a response?

Sincerely,

Norma

[Uk2013]

Hi Norma many thanks for your response, the doctors will discuss
On 25 of this month what the next course of treatment will be
My concerns are that he has already had one course of atg
Which was not successful so what if he has another course
Which fails also I'm unsure as to why the doctors don't test his immediate family for a match like uncles cousins as he has a large extended family
I never thought such a condition could happen to someone so young
And pray he can overcome this, any further help advise would be helpful
Thank you

[Uk2013]

It's was three months since the atg they did a bone marrow
Biopsy and confirmed the atg didn't work

[Hopeful]

Hi UK2013,

Where is your cousin being treated? It would be unusual to see any improvement in the marrow at 3 months post-ATG. It is more typical to look for a rise in blood counts first, which can occur 3-9 months after ATG.

You may want to get a second opinion with an AA expert. Professor Marsh at Kings Hospital has been recommended on this forum.

[Uk2013]

Ok thanks, he is being treated at kings hospital under professor marsh
They said they should see signs of recovery
After 3 months but have not, so they suspect it hasn't worked
just got to hope the transplant is more successful

[NLJabbari]

Hello again. We didn't see a response till around the sixth month. Do you know if your cousin had Horse ATG or Rabbit ATG? It was my understanding at one point that European countries used Rabbit ATG as a first option. In the states it is believed that Horse ATG is a better option or at least that's the latest I've heard from my son's Hematologist.

If the doctor decides that a bone marrow transplant is the next best option, be sure to ask if the search for a MUD--Matched Unrelated Donor will be an International Search? It would be nice to find a 10/10 match.

BTW, do they know what caused your cousin's AA...is it Idiopathic (unknown cause)?

[Uk2013]

Hi once again thanks for the help and thanks for your info
The consultants said if no changes in blood response after 3 months then
Atg hasn't worked, I'm not sure why they have not waited longer
My cousins atg was diagnosed as idiopathic
Unkown cause, I just really hope he can find a really good match
Donor, why won't the consultants test immediate family?

[ssdavi71416]

My response did not start until 4.5 months after ATG. My recommendation would be to keep taking the Cyclosporine while waiting for a BMT match. How old is your cousin? Depending on age they might not do another round of ATG and move right to BMT. Here is a great article written by the experts in the field.;

http://bloodjournal.hematologylibrar...1185.full.html

[Uk2013]

hi my cousin is 32 years old

[Hopeful]

Originally Posted by Uk2013

I'm unsure as to why the doctors don't test his immediate family for a match like uncles cousins as he has a large extended family

Hi Uk2013,

They don't test family other than siblings because the odds of them being a full match is about equal to the general population, and the cost of doing the genetic testing is high. Of course, the extended family could always join the marrow registry and than they will be included in the pool.

I hope your cousin's counts start to improve. Look for even slight changes as a positive sign...like increased time between transfusions.