Father diagnosed MDS or AA hypocellular and treated with ATG

[vicid]

Hi, my father was not diagnosed exactly. One hospital said that it can be MDS and at the same time the other hospital said that it is AA. Then two hospital advise to give thymoglobulin, We choosed the first hospital because the doctor in the second hospital left there. Last month the drugs came from Europe, it was a rabbit thymoglobulin and brand is Genzyme. I think they did not know exactly how the drug is applied. 3.75 mg/kg x 5 days ATG. First day some of the ATG is wasted because its using time is exceeded it was said like that. and just 200mg sandimmune neoral capsule had given every day after 2 days ATG treatment had begun.After 4 weeks we left hospital and now waiting for a response. Every week platelet transfusion and twice a week blood transfusion we need. Now he is feeling very tired(is it normal?)and sandimmune is 300mg a day. Ferritin levels are also above 2000 and still not using any drug to decrease ferritin.Just I want to mention about and want to hear your ideas about diagnosis and treatment. Also I hear sandimmune and neoral is different, however our drug is sandimmune neoral. What are we using now sandimmune or neoral?

Father 09.2009 diagnosed MDS or AA,hypocellular. 12.2009 ATG, already no response

[Marlene]

I would go for another opinion. They really need to pin down the diagnosis to treat this effectively.

ATG can be used to treat some forms of MDS but I would continue to pursue a definitive diagnosis.

At this point you probably don't need to treat the iron unless iron overload was a problem prior to him getting AA/MDS. Do you know what his baseline FE level was before he started getting transfusions?

You really need to be seen/treated by doctor who has experience with these type of blood disorders.

[Neil Cuadra]

May I ask what city or country you are in, vicid?

[vicid]

Turkey, capital city ANKARA,
I read some research about ATG, and understood that ATG is mostly helpful in AA, and less for MDS, isn't it.

Also there is some posts that are diagnosed AA/MDS, I thougt it is a complicated illness.

[Neil Cuadra]

Most MDS is hypercellular (too many cells) but 10% to 20% of the time MDS is hypocellular (too few cells).

When MDS is hypocellular it can be hard to distinguish from AA since there aren't many cells to examine. That's one possible explanation for the uncertainty over your diagnosis. ATG (commonly used to treat AA) has been found to be more effective for hypocellular MDS than for hypercellular MDS. That's why it's important for you to get to the most experienced doctors you can find and get a precise diagnosis.

[Hopeful]

Vicid,

I am sorry to read of you and your father's struggles.

Here is a good article on the treatment of MDS with ATG:
http://www.nature.com/leu/journal/v1.../2403124a.html

I was told that age under 60 years old was one of the better predictors of response to ATG. I am not sure why this is.

I've heard of a European protocol using rabbit ATG at 3.5 mg/kg/day given over 6 hours for 5 days. This may be what your father got and may explain why there was "something left in the bag".

Be sure that the doctor's are checking your father's cyclosporine levels and that the trough levels are not exceeding 400, whatever brand of cyclosporine that he is using.

I would talk to your father's doctors about starting chelation therapy for iron overload if your father has had over 20 units of packed red blood cells.

Please try and get another opinion on how to proceed. It seems like something is still going on if your father is requiring 2 RBC transfusions a week

[vicid]

sorry I specify wrong,
one RBC transfusion in two weeks, It becomes nearly 20 transfusions, so as you say iron chelation therapy has to begin. is there an absolute treatment for ıron overload?
Also I wonder is fatigue normal after ATG, It takes one month after ATG but fatigue is extreme for my father and it seems it is not related with shortness of RBC?
And does anybody know that the neoral said in forum is same with sandimmune neoral capsule?

[Hopeful]

Vicid,

It is my understanding that Sandimmune is the original Cyclosporine and that Neoral is "Cyclosporine Modified". They have different bioavailability and are not absorbed by the body the same way. So, they are not interchangeable.

I've never heard of "Sandimmune Neoral", as they are two different drugs. You may check the packages and look for the word "Modified". If one package says "Modified" and one doesn't, you know that they are different.

I think that the iron build up and transfusion dependence (along with being on Cyclosporine) could be causing the fatigue in your father. After a month, I don't think that ATG is the cause.

Hope this helps! I'm not an expert but am basing this on what I've learned through my experience and research.

[vicid]

You can see the drug package,through the link below,

http://www.shenyounet.com/en/wp-cont.../08/neoral.jpg

sandimmun neoral

can you check?

Because it is not clear in the prospectus.

[Hopeful]

To my knowledge, this version of the drug is not commonly available in the US. I found a couple of articles that state "Sandimmun Neoral" is the microemulsion or "modified" version of Sandimmun.

http://rheumatology.oxfordjournals.o...tract/39/2/156
http://ndt.oxfordjournals.org/cgi/co...tract/16/2/373

Based on this, I think "Sandimmun" and "Sandimmun Neoral" have different bioavailabilities and shouldn't be used interchangeably. The newer Neoral formulations are better from an absorption standpoint.

Make sure that your father's dosage doesn't exceed 5mg(of drug)/kg(his body weight)/day. Make sure he isn't eating/drinking grapefruits.
Also his cyclopsporine trough level should be measured to make sure it isn't excessive because of interactions with other drugs that he may be taking.

I am not an expert. Just sharing my opinions.