confused and scared

[leesa]

In March of 2013 my mother was diagnosed with Paroxysmal nocturnal hemoglobinuria (PNH) which has turned into Severer Aplastic Anemia... Her doctor sent us directly to Boston Mass. where she did a round of ATG, which was about 8 weeks ago now... it seems that the ATG did stick once or twice. Her red and white blood cells will hold their own for 7 to 10 days. The highest her platelets ever got was 35,000... within a few days there right back to two or three or four thousand, she needs them every 2/3 days... we go for bone marrow transplant consultation on May 30th my question would be... do we go through another round of ATG... or just go ahead with BMT? My mother is in good health other than the SAA and PNH... but she is 67 years old... also she has two siblings that are matches, so is there a higher percentage for a successful transplant if you use a male or female sibling donor? I am so glad to hear that some for you have had a successful BMT and are still doing great!!! I am confused and scared….

[Neil Cuadra]

leesa,

You've got all the right questions, but the answers aren't easy. You'll find a number of discussions here about the transplant decision. You're certainly not alone in facing the choice of a transplant or further drug treatment.

It's great that your mother is in good health and has matched siblings. That's what gives you this choice. It's just too bad that the best choice of treatment isn't obvious.

Are you satisfied that your mother's doctor is giving you enough information, including explanations for his or her recommendations? Have you considered getting a second opinion about the appropriate treatment? Would the transplant be a "mini-transplant" with less chemo/radiation then a full transplant?

I know I'm asking questions instead of answering them but I can address one issue you asked about. Other things being equal, male donors are preferred to female donors who have ever been pregnant. One trend we hear about sometimes is that doctors may prefer a young perfectly matched unrelated donor to an older related donor. It's worth asking if that applies here or if it's clear that a sibling would be preferred.

[leesa]

Neil
Thank you for the quick reply. A mini-transplant has never been discussed.... I believe because she has the PNH a complete transplant would be necessary but that is a great question for me to ask. we seem to be satisfied with her doctors ... our problem lies that where in Maine and the hospitals up this way doesn't deal with a lot of Aplastic anemia patients... not to mention when you add in the PNH... so her doctors here communicate with her team of doctors at Mass General... we did spend a week there at MGH when they gave her the horse serum (ATG). Her team of doctors did seem quite confident and yes I would say that they explain things quite thoroughly... But come-on let's face it....it was a lot of terminology, a lot of scary things Like horse serum... she was covered in bruises, we were in a big city far from home… needless to say I did some pretty serious Goggling....lol

It’s my understanding that if the ATG did work she would still be constantly checked for signs of relapsing… Because the only way to get rid of this PNH would be to have the transplant... As I stated before a mini-transplant has not been mentioned…but I will be sure to ask...ty

As far as her siblings donors go... her 3 years younger brother has got a few medical issues going on I'm not really sure what exactly they all are... and her 2 year older sister has had four children but would appear to be healthier than the brother... I'm not sure if we would pick the donor or is that something the doctors would do after examining both of them…?

[Neil Cuadra]

Originally Posted by leesa

As far as her siblings donors go... her 3 years younger brother has got a few medical issues going on I'm not really sure what exactly they all are... and her 2 year older sister has had four children but would appear to be healthier than the brother... I'm not sure if we would pick the donor or is that something the doctors would do after examining both of them…?

Once the doctors learn who is available as a donor (related or unrelated) they make a recommendation based on the medical tradeoffs while considering both the health of the donor and the patient. Since there is such a minimal risk to the donor, chances are that either your aunt or uncle could be an eligible donor, even if your uncle has more medical issues than your aunt. The reason they consider pregnancies is that mothers-to-be accumulate additional antibodies that men or never-pregnant women wouldn't. It seems unlikely that the doctors would have absolutely no opinion and leave the choice entirely up to the family, but if that happens then either choice would be fine, so you still shouldn't have to worry about it!