Just placed back on Cyclosporine for relapse.

[Kim2007]

Before I had ATG and was on Prednisone as well. Now they are trying me on 600mg a day for 4-8 weeks to see if it helps me out. If not then we go with transplant. Has anyone been on just the Cyclo? Right now I have tummy ache but that is the only side effect I have noticed so far. Only took my first dose thus far.

[NLJabbari]

Hi Kim, Sorry to hear that you've relapsed. Have they found you a MUD?

My son had one round of ATG and CsA relapsed and then was on a high dose Cyclosporine. He did respond, but became dependent on the Cyclosporine.

Hope you do well and drink lots of fluids.

[Kim2007]

I have a related donor. Perfect match. He wasn't in the state by the time they figured out what was wrong and they went with ATG 6 years ago. They said transplant should be last option so they are trying me on Cyclosporine alone right now first. Before I was on steroid also after the ATG.

I was just curious what others experiences were with Cyclosporine alone.

[Kim2007]

Also they did tell me that most likely I will need it forever but they would taper me down to a lower dose. This is higher dose than I was on before after ATG but it is also a different kind than I was on before. The ones I took before stunk and were sort of oval shaped. These are Non - Modified Apotex it says on the bottle. Before I think I took Sandimmune.

I do hope that your son is doing a lot better now. Did he have a very good response? It took me a year to respond to normal platelets the first time. I didn't have as hard of a time with reds which never got completely normal or my wbc which got back to normal first. I had five good years and slowly started to dwindle about a year ago. I am wondering how long it might take until I see a difference in platelets if it is going to happen. They said they don't try it for longer than two months.

[NLJabbari]

I'm so happy that you have a related match. That is great news!

My son obtained full counts, but didn't respond until the 6th month (2004). His platelets were the first to respond and the WBC & Hgb followed. He was able to obtain 300K+ platelets and ANC in the 3-4K range and 12+ Hgb. He was on Cyclosporine (Gengraf) for about a year post ATG. Relapsed (2006) about 14 months later. He was then on (Sandimmune) but never quite recouped those counts.
The highest his platelets have been post relapse is around 180K, Hgb 9, and WBC/ANC have remained about the same.
He had another relapse in 2012 and was dx'ed with PNH clone as well. Platelets are still at 180K, WBC/ANC unchanged, but Hgb is at 7.5-8.5 range. He is currently back on (Gengraf) 400mg & 375mg

We are looking into Solaris to treat PNH

[Relentless Against SAA]

Are you on an H2 stomach acid blocker like Zantac? This can really help prevent the nausea.

Hope the Cyclosporine gives you great results!

[Kim2007]

I have pnh also but a very small clone percentage so it doesn't need to be treated.

[aussie danielle]

hi I am low grade myleodysplasia with a hemaglobin of 103, do you think the drs might do a drug therapy on me, I also have a separate hemorrageing permanent problem. this complaint cant be permanently fixed so between the two complaints I feel terrible I am currently asking the drs if i can have transfusions once a month to help me cope. The drs cant know which of the two things is responsible for the red cell drop I was diagnosed two years ago, with MDS and had a hemicolectomy 15months ago to remove the AVMs out of my bowel ,they for a reason known only to them left some in there and that is what could be bleeding again..i am in a real hard place...I live in country queensland and have no one I can talk to other than my doctor who is at a loss as to what to do....as well i only have one kidey so im concerned about the high doses of Prendisone..can any one help...please

[Chirley]

Hi, I suggest you contact the Leukaemia Foundation and request a support person. They are excellent and will put you on the mailing list for upcoming information sessions and brochures with information about MDS.

If you ever need to travel to Brisbane for treatment and need help, they can help with that too.

I don't know if they are having telephone forums this year but they usually have a forum once a month where, for the cost of a local phone call, you can talk to people all over Australia with MDS.

This is their free call number....... 1800 620 420.

There is also a website called Talk Blood Cancer with a section for people with MDS to post questions etc.

http://www.talkbloodcancer.com/

I can't answer your question about treatment. There are so many factors to consider....your bone marrow biopsy results, your blood counts, your blast count, your age, your general health, whether you can travel to Brisbane for treatment etc.

I think you have every right to ask for transfusions as often as you think you need them. The aim is to keep you comfortable and functioning well.

Do you know what your Hb (blood count) drops down to before you have transfusions now?

[aussie danielle]

Hello yes unless my blood drops to 90 they wont transfuse me and i find that to low, I cant function well on 90,thanks so much for your help Chirley,i so appreciate it...I will do as you say, as I am just plum out of puff ..literally and as I breathe tonite.
I feel as if im fighting this, so alone, because I have both problems the doctors here, just don't know, where to put me, and into what category I FIT ...My family don't live here they are supportive ,in so much as they keep spurring me onwards,they visit when they can.

My frustration is with the doctors who don't seem to know as much as I do about all of this. I dont have any blasts ,my platelets are a tad high, but no higher, than when i was diagnosed in 2011,my white sell count is fine.i have these fast drops in the hemaglobin that knock me flat.

I will look into my rights as far as a transfusion is concerned, maybe the L. Foundation would be a good one to ask about that. thanks chirley

[Chirley]

The haematologists at HOCA in Brisbane transfuse when the Hb is under a hundred. It's just a flat policy.

When I went to the local public hospital they seemed to wait until people were very symptomatic. I remember a man that used to sit next to me a lot (he was an ex Scotland Yard detective and very interesting) and they would let his Hb drop to the 70s and he would be breathless, need oxygen and get chest pain....I was disgusted, but the man didn't know to insist on having his Hb higher. It wasn't until the cardiologist wrote a letter stating he needed a higher Hb that they decided to transfuse him at 90.

I think that you have to speak up and tell them that you don't function well with a Hb of 90 and you'd like a cut off of 100. Every person is different and some people function well at 70 and others feel awful at 90.

I'm sure a town as large as Bundaberg would have a Leukaemia Foundation volunteer, maybe they can help you by going to an appointment with you. Your GP might be willing to write a letter requesting that you are transfused when your Hb drops below 100.

Does Bundaberg have their own haematologist or do they visit from Brissie? Can I ask who your haematologist is?

So many questions, sorry.