Question about High Dose Cyclophosphamide

[Dre's Wife]

Hello everyone!! It has been a while since I've posted a thread. My husband Andre is still in the hospital fighting daily for his life. I really do admire his strength.

Andre has had multiple infections for a very long time and the antibiotics were not clearing them up. As a result, he has been getting daily granulocyte infusions and he had his infected thumb amputated this past Monday. He is doing a lot better now and the doctors are looking at different ways to treat his Aplastic Anemia.

Andre wasn't successful with his first treatment of ATG/Cyclosporine so now the doctors want to try High Dose Cyclophosphamide. Is there anyone on the forum whose Aplastic Anemia was treated this way??

If so;

How successful is this treatment for Aplastic Anemia and how did your body react to the treatment....side effects, etc...??

[Neil Cuadra]

Erica,

I'm sorry to hear that Andre isn't making more progress.

I know that there are Marrowforums members who have had cyclophosphamide treatment for severe AA. If you search these forums you'll find a number of discussions about cyclophosphamide. Be sure to search on the brand name too: Cytoxan.

Be aware that cyclophosphamide can cause infertility in both men and women. The chances of this side effect increase with age and with the length of the treatment time. If that's a concern be sure to bring it up with Andre's doctor.

You might contact Dr. Brodsky at Johns Hopkins since he's one of the experts on this treatment.

[Marlene]

Hi Erica,

My husband did the High Dose Cytoxan at Hopkins back in 2002 under the care of Dr. Robert Brodsky. I highly suggest you get a meeting with him directly to discuss your options. HiCy is most successful when it's done as the first line of treatment. And, the efficacy drops for those who failed ATG/Cyclo.

John had a difficult time with the treatment. Mostly from the anti-fungals and anti-biotics used after the treatment. It took him 84 days for his white count to kick in. During that time, lots can happen as you already know. But everyone responds differently and there's really no way to predict how he'll do. John is going on his 10 years anniversary this June and he is in a partial stable remission. His white count is normal, his HGb stays at about 12 - 12.5 and platelets are in the 120K range.

Have they discussed a BMT as an option? Hopkins also does a new protocol using HyCy after a BMT to minimize graft vs host disease. So please speak with Dr. Brodsky to find out all of your options.



Please contact them and discuss your options.

[Dre's Wife]

Thanks Neil and Marlene for your response to my post. Unfortunately, Andre is the only child. The National and International bone marrow registries have been checked and so far there is not a match. Andre's attending doctor spoke to another doctor friend of her's from San Diego, California and she was the one who told her about high dose Cytoxan. I'm worried about the treatment because I really don't know how Andre is going to respond to it. His body has already been through so much. I'm going to give the doctor information about Dr. Brodsky and hopefully they will contact him also to get further information on how to treat Andre.