2nd ATG

[ccartbmw]

Hi Everyone,
I had a second ATG treatment in April. Except for shingles everything was going great. Met with Dr Paquette in August my levels were doing great HGB was 11.1 and my platlets were 141. Doctor was happy as were my husband and myself. He told me he would see me in 3 months and start to taper me off of the cyclsporine.Until today when I called him because I was not feeling good for the past few days. He told me to go have my levels checked. To my surprise and his my levels have dropped alot. My HGB 8.9 and my platlets to 49. Has anyone experienced this type of drop after having it go up after ATG treatment. He wants me to have another test next Friday (in one week) He seems to think it could be from the cold I have. Help any input might make me feel better.

[Dan2008]

How fast are you tapering the CsA? A fast taper can precipitate a sudden drop in Platelets?

Dan

[ccartbmw]

Hi,
He has not tapered at all. He was going to start when I saw him in November. I take 250 a day. 125 in the morning and 125 in the evening. My levels just started going down after going up in August.

[Kate]

Can anyone tell me where my family can get information on the cost involved to have a family member tested to be a Bone Marrow Donor? My great Nephew has gone through his second ATG in August...first was done 6 years ago. His APA has not improved, and doctor is now talking about doing a "Non Matching BMT".... My grand daughter, his cousin, is the same Blood Type and would like to have her Marrow tested to see if it would be compatible.
Thank you for any help you may provide.
Kathy Latshaw
kmdunn68@aol.com

[sandra]

Hi Kate,

If you are talking about the public registry, then you can register online at:

http://marrow.org/

The cost is 52$, and you promise to be available on a general basis, not just for one specific patient. Actually, joining online is the easier way to do it, you just fill up a registration form and they sent you a kit containing a cheek swab. It is that simple, no blood test! And then nothing will happen unless there is a specific patient that matches your genetic profile. Only then you will be contacted, and an additional high resolution blood test will be run, to see if that you are indeed a match. Also, at any time during the entire process you have the right to opt-out. If you need more information about the donation process, you can check out this link:

http://www.marrow.org/DONOR/When_You..._fo/index.html

If you are talking about being tested privately, then you are talking about a test that costs more than a thousand for sure (I'm not completely sure, but I seem to remember the price being somewhere between 1000 and 4000$). The insurance won't cover it, since it only covers testing for immediate family (siblings and parents, sometimes half-siblings). If you wanna go this route, the best way to do it would probably to use the same lab that your nephew's doctor used, ask them to give you the information.

Sandra

[Ruth Cuadra]

Kate,

I'd like to add my experience to Sandra's reply. Some insurance plans will cover the testing of prospective donors. When I was searching for a donor, my husband, sons, brother, sister, mother, aunt, and uncle where all tested at no charge to me. Since you are dealing with a specific individual who is related to the patient, you should check the particulars of his insurance to verify what the cost would be.

Regards,
Ruth Cuadra

[Kate]

Sandra and Ruth,
Thank you both so much for your information....I will be sharing this with my family members tomorrow. We have all been feeling so 'useless'...Aplastic Anemia is such a scary disease.
Gregg (my great nephew) had to have 5 units of platelets and a Red Blood transfusion this afternoon. Platelets had dropped to 8,000...Hemat. to 23. His latest pic line had to be removed yesterday...due to infection. Now we are waiting for word from Strong Memorial about possibly putting another port in. His veins are pretty 'shot' by now....
Thank you again for your time and information. Also, are either of you familiar with 'non matching' BMT's??? If Gregg's Bone Tap in October shows no improvement, the doctor will be going for a non matching BMT. This has us terrified...as no one is telling us how successful they have been.
Sincerely,
Kate

[sandra]

His doctor is probably talking about a partially matched unrelated donor (or partial MUD). That means if no 6/6 match (low resolution) is found in the database, then he's willing to start testing partial matches (5/6).

You can also use the other site for AA, Aplastic Central, for getting information.

http://aplasticcentral.com/test/toas...n=topics&fid=2

Sandra

[Ruth Cuadra]

Kate,

A lot has been learned in the last few years about which mismatches pose the most serious problems and which have relatively less significant problems and so are most like having a matched donor. Not all 5/6 donors will be mismatched in the same way so, if there are multiple possible mismatched donors they will be evaluated based on the kind of mismatch. Mismatched donors are not unusual, particularly for children and young adults who can more easily overcome any difficulties.

Regards,
Ruth

[Kate]

Thank you again for your help....and you provided us with some much needed encouragement about this possible non matching BMT. I think all of us are worried about how his vital organs are going to be able to withstand a BMT, after being given the drug treatments for over 6 years.
Gregg has an appointment at Strong Memorial on Oct. 10....his doctor will then schedule him for another Bone Marrow Tap.... the outcome will determine the 'next step' of his journey.
Thanks again for your help and kindness.
Kate