hypocellular mds

[sttery]

Hi, I am a female 74yrs. and was diagnosed 2 years ago with Hypocellular mds. My platelates and Hemoglobin was extremely low, and had to have a transfusion. Dr. put me on 300 mg. of cyclosporin. Both my platelets and hemolobin levels went up to a normal range. After a few months on 300 mgs.,Dr. lowered medication to 200 mgs. After a few months and normal blood counts, we again lowered medication to 100 mgs., and up until now counts remained in normal range. We are contemplating stopping medication, which makes me nervous. Has anyone on record been able to stop medications and counts remain normal??? If anyone has an info on this I would appreciate your input. Thank you, Mrs. C. Slutz

[Ryan Jay]

There is a major study coming out on Cyclosporine taper and relapse coming out very soon. Last I heard Dr. Scheinberg said that the statistics gurus were putting the finishing touches on it.

However, there was a study that came out from Europe a year or two ago that showed a slower taper reduced risk of relapse dramatically. From 60% for a fast taper down to 8% for a Very Slow taper.


I don't know if the study included MDS patients too.

Ryan

[Lisa V]

Do you know why it was classified as hypo MDS and not AA, Mrs. S? Do you have any chromosomal mutations? If so, it might make a difference which one you have.

My husband's diagnosis was changed from AA to hypo MDS when they discovered a trisomy 8 mutation. He had already had one ATG and relapsed after the (very rapid) cyclo taper, but resuming cyclo wasn't enough to turn it around, so he had to repeat ATG. At this point I came across a study suggesting that patients with tri 8 are likely to be cyclo dependent long term, so we have not tried another taper (although we've had to tinker with his dosage because of side effects).

If you also have trisomy 8, I would not attempt any further reduction. Even if you don't, I would do it extremely slowly, as Ryan suggests. It's certainly unsettling to feel like a guinea pig, but there are so many variations in these diseases and in individual response, that a certain amount of that may be unavoidable. The good news is that if cyclosporine alone was able to raise your counts the first time, it seems likely that resuming it again will turn things around if they do start to slip. That is unusual, for either AA or MDS.

[sttery]

I just cannot find any information on the above. I was diagnosed about 3 yrs ago. Been on Cyclosporine, first 300mgs, then 200mgs, now 100mgs. My blood has been in normal range for close to 2 yrs. What can I expect???? Has anyone had the above and did your blood stay in normal range or drop again?? Whatever information anyone has it would be appreciated. My email address is sttery@bellsouth.net.

[Hopeful]

That is great that you were able to achieve normal counts within 1 year on cyclosporine alone! Have you had a repeat BMB since your initial diagnosis? It would be telling to see if you still have hypocellularity and significant dysplasia (the dysplasia remains with MDS even after "recovery") or whether your marrow looks relatively normal now (which may indicate that you had more of a aplastic crisis). It may be beneficial to do this for your own piece of mind, if nothing else.

I think that with normal counts, your doctors will try to taper you completely off cyclosporine, while monitoring your counts.

You will always have to periodically monitor your counts, but even this can be spaced out with time.

Try to avoid illness, surgery, and other stresses to your marrow that could cause a relapse, but enjoy life in the meantime

[Birgitta-A]

Hi sttery,
In this article the author writes:"Hypoplastic MDS is a relatively infrequent subtype of MDS that frequently overlaps with aplastic anemia and for which there is evidence of significant immune deregulation. The bone marrow is hypocellular in 10% to 20% of patients with MDS, defined as bone marrow cellularity of less than 30% in patients younger than 70 years or less than 20% in those older than 70 years. Treatment approaches for patients with hypoplastic MDS depend on the center and the age of the patient. Our group has had an approach for these patients that is similar to that for patients with aplastic anemia".
http://asheducationbook.hematologyli...010/1/330.full

As Hopeful wrote you have responded very well to cyclosporine.

I have hypocellular bone marrow too but that depends on severe fibrosis that not is a positive sign.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Good result with Thalidomide + Prednisone.

[sttery]

Thank all who responded to my thread on Hypocellular mds. It has been 3 years since I was diagnosed and for 2 yrs. on 100mg. of Cyclosporine, my counts have been in normal range. In fact on my last 2 visits they have gone back to where they were before mds. I decided to stay on 100mg of Cyclosporine. I'm just too fearful of going off medication completely. My Dr. agrees. Very hard getting info on Hypocellular mds, so appreciate your inputs.

[Birgitta-A]

Hi sttery,
Yes, as you can see from slide 26 in this presentation from professor Hellström-Lindberg there is a small subgroup of patients treated with cyclosporin who will remain in complete response. I have heard her say that these patients actually seem to be cured.

http://socforheme.org/eahp/uppsala_files/Hellstrom.pdf
Kind regards
Birgitta-A

[Hopeful]

Hi Birgitta-A,

Thank you for posting this presentation.

Do you remember if Professor Hellström-Lindberg mentioned whether the patients that had a durable CR *required* cyclosporine to maintain their counts? The details aren't mentioned in the pdf.

thanks!

[Birgitta-A]

Hi Hopeful,
As far as I understand a cured person should not continue to take drugs. I think that Professor Hellström-Lindberg said that the patients didn't need any medication. What I do remember is that she said that this very small subgroup of patients perhaps didn't have cancer.
Kind regards
Birgitta-A

[chrplunk]

Originally Posted by sttery

Hi, I am a female 74yrs. and was diagnosed 2 years ago with Hypocellular mds. My platelates and Hemoglobin was extremely low, and had to have a transfusion. Dr. put me on 300 mg. of cyclosporin. Both my platelets and hemolobin levels went up to a normal range. After a few months on 300 mgs.,Dr. lowered medication to 200 mgs. After a few months and normal blood counts, we again lowered medication to 100 mgs., and up until now counts remained in normal range. We are contemplating stopping medication, which makes me nervous. Has anyone on record been able to stop medications and counts remain normal??? If anyone has an info on this I would appreciate your input. Thank you, Mrs. C. Slutz

Hello. I'm sorry I can't answer your question but I have a question for you... my mom is in the exact same boat as you now that you were two years ago... she just started the CsA about three weeks ago. Her platelet count dropped from the 'normal' range for her of 39 to 29 the first week then 19 last week. We are eagerly awaiting tomorrow to find out if it has dropped further. My question is when you were on the CsA, did your counts initially drop before they went up and also, about how long did it take for your counts to come up?? Thank you so much.

[sttery]

Hi Chris, Sorry I'm late in my response, but have been away. Hope your Mom's platelet count has gone up on your last visit. When I first was diagnosed I had to have 2 platelet transfusions and Dr. put me on 30 mgs of cyclosporine. Yes, my platelet count dropped on this doseage. I was then sent to a Specialist in Miami, Fl. He put me on 300mgs and then my counts started to go up. I have now been on 100mgs for close to 2 yrs. and my counts, as of last visit, were back to where they were before I was diagnosed. I consider myself very blessed. Sure hope your Mom will do well on cyclosporine. Please keep me posted. Will keep her in my prayers

[chrplunk]

Originally Posted by sttery

Hi Chris, Sorry I'm late in my response, but have been away. Hope your Mom's platelet count has gone up on your last visit. When I first was diagnosed I had to have 2 platelet transfusions and Dr. put me on 30 mgs of cyclosporine. Yes, my platelet count dropped on this doseage. I was then sent to a Specialist in Miami, Fl. He put me on 300mgs and then my counts started to go up. I have now been on 100mgs for close to 2 yrs. and my counts, as of last visit, were back to where they were before I was diagnosed. I consider myself very blessed. Sure hope your Mom will do well on cyclosporine. Please keep me posted. Will keep her in my prayers

THANK YOU so much for responding. Good news, her counts did go up this week. Plt went up to 24. While that's not astounding, they had been dropping 10 per week so an increase of 5 is great news. Also her WBC count hasn't been this high in two years. Thank you, and everyone, for your prayers. We're all in this together and this forum has been a real source of both knowledge and comfort for our family.

[sttery]

Hi Chris, So glad to hear your Mom's platelet counts did go up. Sure hope Cyclosporine works for her as it has for me. Keep me posted.

[chrplunk]

So it's been a few weeks and I wanted to update you and also ask you all a question. Mom's platelet count went back up into the 30 to 40 range and has been that way for six weeks. The CSa treatments continue with no real progress.

Question(s): about how long did it take for you to see a real increase in your blood counts?

Did you have issues with establishing a Csa blood level...especially when you initiated the Csa treatment. This is extremely frustrating...how long did it take for you to achieve the therapeutic trough range (150-180)? And on what dose? I do not understand why my mom's troughs vary so much. Is that even normal with this drug? Also how long did it take?