[Arlene]

Thank you for your responses. I so happy your husband’s transplant was so successful. My husband’s transplant would be an allogeneic transplant as he has no other family to test. AA-MDS foundation had a webinar with info on transplants and basically said transplants for MDS have around a 1/3 chance of not surviving the transplant, 1/3 chance of have complications or relapse of the disease within a year & die – so it is a hugh risk for a 33% chance of survival and we question the quality of life after transplant.

As you can see – we have great concerns about transplants. That is why we are asking to talk to patients or patient’s families who have had both type of transplants – auto vs allo. He is going to try Vidaza until he makes his final decision of whether to go for a transplant or not.

[Arlene]

Chuck – The drug is called Campath. It is a monoclonal antibody therapy that affects a certain antibody on the autoimmune gene. They also use it in CLL (chronic leukemia). When he was worked up for the transplant 4 yrs ago they found this special gene attached to the immunine type genes – thats why the cyclosporin worked (talking genes is a little above my comfort level for explaining – so please take this explaination w/ a grain of salt). Anyway – a doctor we saw in Denver – Dr. Matous from the Rocky Mtn Center got him involved with the NIH this summer. The trial has had a 80% success rate and my husband was the 32nd volunteer. We hoped for success. You can find the trial on the NIH web site – search for MDS trials or campath trials.

What have your doctors thought about your platelets dropping?

[Arlene]

Hi Chuck – I remember you when you first posted – we are also from Colorado. My husband was dx in 2005, was transfusion dependent, lots of genetic changes and was looking toward transplant. They did start him on cyclosporin and this kept him transfusion independent until this year. His platelets started dropping in January to the point he was running 30-35. His Hct started dropping May and was 30. He actually just completed a MDS Campath trial at the NIH in Bethesada, MD. This trial has had good success making MDS patients transfusion independent and we are now hoping and praying for a turn around (takes up to 6 months). They did find he had PNH also (new dx) and we are dealing with this now. His platelets are 15, h/h 9.4/26 – Whites are okay and he is pretty fatigued. He will probably get a transfusion tomorrow. We started looking into options when the cyclosporin quit working and his platelets started dropping. So that what he did when his platelets started dropping.

[Arlene]

jga_socal, I am not Pati, but my husband was on for 6 months and it worked very well. His main side effect was he did loose a little of his hearing. He was already a little hard of hearing, but it did seem to get worse. He would take it in the morning and he then stayed pretty close to home because of the diarrhea that would start shortly after taking it (lasting a couple of hours). He was around 2600 when he started and it dropped to around 1000 in 6 months. He now has blood drawn off every month or so because his HCT is pretty normal. He had labs drawn regularly to watch his creatine and liver (he was also taking cyclosporin at the same time which effects the same organ) but they always stayed pretty normal. It is a good drug. Arlene

[Arlene]

Josey, I am glad cyclosporin was approved for you. It sure has worked well for my husband. His platelets were running around 5000 and over a six month period they gradually increased to 135-145 and have stayed stable. Arlene

[Arlene]

Josey, my husband was dx w/ MDS Dec 05, but they thought at first it was AA. His platelets were extremely low, then his RBC followed, but his WBC always stayed a little low, but ok. Aranesp never worked. A Doctor out of City of Hope in Phx AZ started him on cyclosporin in 4/06 and he has had pretty much normal counts since. The doctor felt since he look so much like AA the cyclosprine may work.His chromosomes returned to normal also. There are so many types of MDS and so tx is kind of individual. Good luck. Arlene

[Arlene]

Dear Mark, I am so glad you for that your counts are going up. My husband has hypoplastic MDS, but has taken only cyclosporin and his counts are pretty much normal now. He has been on this drug for approx. 10 months and he is doing quite well. His counts prior to this were in the toilet (kind of like yours) and he was tx each week with either platelets or blood. Aranesp never worked for him. I have been wondering about the ATG and was thinking if the cyclosprin gave out, maybe they could add ATG. Was the infusion bad? I understand a person gets quite sick. I wish you lots of good blood counts! Arlene

[Arlene]

Dear J.clair, Cyclosporin is a drug they use in kidney,heart transplants, aplastic anemia – also in bone marrow transplants. It is a immune supressent – so a person has to be careful with the germs. They are a few studies w/ this drug and MDS. I found them on AAMDS.org. They work sometimes and sometimes they don’t. Moe has been lucky – AAMDS info states the average they work is 10 months, so the next few months are kind of scarey. Sometimes they give it with a drup called ATG. So far, just the cyclosporin has worked for Moe. There are lots of side effects, but Moe has had very few and all ones he can live with. Arlene

[Arlene]

Hi pigduck – My husband has hypoplastic MDS. They thought it was aplastic anmeia for a while, but then they found the abnormal chromosones. He was transfusion dependent, getting transfusions of blood and platelets weekly then a doctor from City of Hope in Phx, AZ suggested he start cyclosporin orally and his blood counts returns to vitually normal. He has been transfusion independent for 9 months and the bone bx done in Nov showed no chromosone abnormalities. We just pray everyday he stays in remission. Good luck. Arlene

[Arlene]

Hi Chuck,

Sorry it has taken so long to get back on – been out of town. Moe had orignally two and I do not totally understand how this is written – but as I see on this paper it is written 46, XY t(4;14) – then he went up to six written 46, XY, t (4;14) (Q25;Q32) (2) 46, XY(18) and at the presents time he has no abnormalities. Recently they reduced his dosage of cyclosporine to 50mg a day (down from 100). Yesterday he was dizzy, fatigue and has a bad taste in his mouth that would come and go – anyone else with this problem? Arlene

[Arlene]

Shari,

Cyclosporin is a drug kidney and heart transplants receive. Apparently it helps the body from rejecting the new organ. In my husband’s case he presented originally hypoplastic, so they thought maybe this drug would work as they thought his body was rejecting his bone marrow. So far it has been good. He has been on it since 4/06.

Arlene

[Arlene]

He has been very fortunate, his side effects are minimal, fatigue and some arthritis in his elbow (if you can even contribute to the cyclosproin). They are going to reduce his dosage this month and he is hoping he will get some energy back. How long was she on the drug?

Arlene

[Arlene]

Hi KWJ,
My husband and I travel to Phoenix,AZ last winter and he was able to get a platelet transfusion at the Good Sam Hospital. We did make the arrangements prior to leaving. They have a BMT Unit where they are very familar with MDS/AA – we can give you a name if you need it.

Arlene

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