Danazol Question

[Beth]

Can anyone tell me if Danazol is in pill form? Does it work better than Testosterone injections for platelets? Anything else for platelets other than transfusion? Hovering from 10 up to 17. I can't seem to find an actual research study, but may be so exhausted not searching in right places. All cell lines low. Started Vidaza-first week only at this point.

Thanks.
Beth

[Sally C]

Hi Beth,
I won't go into great detail here as I have posted numerous times regarding the huge success my husband has had in a clinical trial at the National Institutes of Health in Bethesda, Md. He started in their Promacta (Eltrombopag) clinical trial in March, 2011. The trial is to see if it would increase platelets for MDS patients which he has and they also have a Promacta trial for AA patients as well. He has only had one red cell transfusion since. He had been transfusion dependent since 1/09 for red cells and especially platelets - around 55 to 60 transfusions in both '09 and '10. Please check out my posts under "Clinical Trials" and various other responses to posts such as yours. The Promacta is to increase platelets but, as with their AA patients, it has brought up his red cells as well. I have included the NIH contact information in some of my posts. He has tolerated it extremely well and I can't say enough about how wonderful NIH and their doctors and nurses are.
Please feel free to e-mail me directly if you have any questions.
shcalvert3@aol.com.
Good luck and God Bless,
Sally

[Beth]

Thank you so much Sally. As usual, searching the wrong thing. The last two wks he has had some kind of treatment every day but two. We have slept off and on all day trying to catch up with rest. It seems to take three shots a week to keep the white cells up and the Procrit does little for the red cells. They just keep dropping until another transfusion at 11-14 days. Platelet transfusions help briefly. This is such a roller coaster, confusing, complicated disease, especially if all three cells lines are affected. I am grateful though that there are some treatments now. Not sure why his doctor hasn't mentioned Promacta.

I am so glad your husband is responding in both cell lines. That is wonderful. Thank you so much for taking the time to respond. Sorry I am so dense.

Beth

[Sally C]

Hi Beth,
We are all somewhat "dense" with these complex, complicated, unpredictable diseases. You'll be amazed how much you will learn as time goes by - but how much more there is always there to learn.
Your doctor may not have mentioned Promacta because it's only available to MDS patients via clinical trial.
Ask any questions you have - there are many smart, educated people who have been learning, researching and living with these diseases for years. This forum is a storehouse of knowledge and full of people who want to help as well as provide information, personal stories and most of all - support - to anyone who wants or needs it.
And may I add that all 3 lines of my husband's blood were affected at first. There was a point that his neutrophils hit .00. But his white cells eventually normalized after receiving Campath in 3/09 at NIH. With the right treatments sometimes via trial and error, the right doctors, and perserverance there is always the hope and possibility of improvement!
God Bless and good luck!
Sally

[triumphe64]

Originally Posted by Beth

Can anyone tell me if Danazol is in pill form? Does it work better than Testosterone injections for platelets? Anything else for platelets other than transfusion? Hovering from 10 up to 17. I can't seem to find an actual research study, but may be so exhausted not searching in right places. All cell lines low. Started Vidaza-first week only at this point.

Thanks.
Beth

My Danazol comes in pill form. I only use it for red cells.

[cheri]

Hi Triumph....
What is your Danazol dose and how long have you been on it?

I started November 2011 on 200 mg/day and it helped with my platelets, but not red blood. Platelets stayed in the 40's and up for months
Then I upped it to 300 mg/day and seems like it has stopped working....

Anyone?

Beth--my Danazol is in yellow capsules, 100mg each...

Thanks......

[triumphe64]

I take 200 mg per day - one orange capsule.

It took several months to kick in so that I could reduce my cyclosporine amount for the same Hg result.