3rd ATG treatment

[Janire]

Hi everyone! In 2007 I started with this disease. After a first ATG treatment, we waited 6 months and it didnt work, so we tried another ATG. This one started to work 9 months later...we were arranging BMT. After 2 years of remission my doctor told me to leave the ciclosporine...very slowly, I was scary to leave it, and now 1 month ago when I was taking only 25mg of ciclosporine a day, I suffered a relapse. First my platelets fell down and then the rest....:-( Tomorrow I will go to the hospital for a 3rd ATG treatment...somebody here have already pass for a 3rd ATG treatment?? I am upset and discouraged. My doctor said than the better solution and the only definitive cure is a bone narrow transplant but I am terrified of it because I dont have brothers or sisters and it would be a non related donor...I am 31 years old. Please, give me a ray of hope!! Thank you

[Neil Cuadra]

Janire,

I'm sorry to hear about your relapse, especially after you and your doctor were so patient about lowering your cyclosporine dose.

Repeated doses of ATG have been a successful treatment for many patients, including some of our forum members. Some forum members have had AA for 20 years or more and I recently met a woman in her 60s who was diagnosed with AA as a child.

You might like to read Andrea Pecor's story and the thread by peter v. c. for words from long-term patients. Andrea is still doing fine after 5 rounds of ATG.

Being just into your 30s you are probably a good candidate for a transplant if you are otherwise healthy. I'm sorry you don't have the benefit of a matched sibling, and deciding between treatments can be hard, but keep in mind that it's a benefit to have multiple options. My wife, who was diagnosed with AA and then with MDS, had an unrelated donor transplant while in her 40s. She was cured. Every patient's situation is different but I think you have multiple reasons to be optimistic.

Doctors and transplant specialists are getting better and better at non-related donor transplants. Transplants still have many risks but fewer than ever before. Transplant procedures for unrelated donors are so refined that for senior citizens they actually prefer a younger matched unrelated donor over an older matched related donor!

Good luck with your ATG. I hope your recovery will be swift and your counts will rebound. If you have time, let us know how it goes and feel free to use these forums to talk to other patients.

[Hopeful]

Sometimes just reintroducing cyclosporine can recover your counts. Have you discussed trying this with your doctor?

Do you mind posting your taper schedule and when you first noticed your counts falling? I am tapering now and am scared of the same thing happening!

[KimO]

My daughter was able to completely recover her counts after relapse by going back on her therapeutic dose of cyclosporine (300 mg per day). She had been off of it completely for 14 months after a 9-month taper.

[squirrellypoo]

Originally Posted by Neil Cuadra

Being just into your 30s you are probably a good candidate for a transplant if you are otherwise healthy. I'm sorry you don't have the benefit of a matched sibling, and deciding between treatments can be hard, but keep in mind that it's a benefit to have multiple options. My wife, who was diagnosed with AA and then with MDS, had an unrelated donor transplant while in her 40s. She was cured. Every patient's situation is different but I think you have multiple reasons to be optimistic.

I'm totally biased because an unrelated, anonymous donor cured me two years ago (I was 30 at the time of the transplant). I'd advise that you start the search for a donor now, even as you go through the ATG, because knowing that you have a 9/10 or 10/10 donor out there will give you peace of mind knowing that you CAN be cured if the ATG doesn't work out.

Matched siblings are best, but a matched, unrelated donor can be very, very good. And my experience was so good that I can't imagine anything could have been better or easier if it was my brother that had been the donor...

[Hopeful]

Originally Posted by KimO

My daughter was able to completely recover her counts after relapse by going back on her therapeutic dose of cyclosporine (300 mg per day). She had been off of it completely for 14 months after a 9-month taper.

Hi KimO,

How long did it take your daughter to recover her counts after restarting the cyclosporine?

[KimO]

Shauna's counts continued to drop for another two to three weeks after restarting the cyclosporine -- although the rate of declined slowed during that time. The Hgb continued to drop somewhat after that because of the lag caused by how long red cells last in the system. However, by four weeks (we were on weekly blood draws) her platelets and neutrophils began to inch back up and were back in the normal range approximately 2 months after restarting cyclosporine. Hgb was back into normal territory approximately 3 months after the restart.

[Hawaii Bill]

My doctor wanted to do a second ATG on me after my relapse from the first one. I chose to go back to a "therapeutic" dose of the cyclosporine (CSA) of 200mg twice a day, based on the recommendation of Dr Paquette at UCLA.

At the time, I was receiving 1-2 units of red blood every 2-3 months, and platelets were holding steady in the low 20's (before ATG tx, I was getting 2 units of red blood every 2 weeks, and platelets weekly).

I had one more red blood tx after I started the new dosage. After that, my counts stopped declining and started climbing. Nine months later in May 2009, my hemoglobin was 11 and my platelets were 60k. Today, my hgb is 13 and my platelets are 80k and slowly climbing.

The AA resources state that both ATG and CsA are effective in treating AA, and that the combination is better than either used separately.

That means that CsA alone can be used as treatment. it's just that by the time many AA patients are diagnosed, they need the most effective treatment possible because of their bone marrow status and their ANC level.

For someone with moderate AA (as I was when I saw Dr P), it's my opinion that CsA alone can be a good idea. But CsA does have its downsides!!!! I worry about the increased cancer risk.

Perhaps you can seek another opinion???

Best wishes!!!