Danazol for TERC mutation

[Robi1Knobi]

Last week, I went to NIH and had my annual BMB, 23 tubes of blood taken, 2 echo's, 3 ultrasounds, a CT scan, MRI, PFT's and a 6 minute walk AND came off Danazol Tuesday ). I hope good things continue, platelets are still low at 50, but other than that, I'm feeling good! I did have a killer migraine Thursday , guess my body has to get used to hormone imbalances. Anyhoo, hope ya'll are doing good as well )

[Neil Cuadra]

Linda,

I'm really glad you're feeling well (other than the headache) and that most of your counts are OK.

They sure ran you through tests, didn't they? Wow! You beat my wife's record. She had 22 tubes of blood taken at NIH, when she wasn't expecting them to need so much. She ended up being a weak afterwards. That's like somebody who used to need blood transfusions making half of a blood donation!

[Greg H]

Hey Linda!

Congrats on your success!

So the plan is to just kick the Danazol habit and see what happens, as opposed to tapering?

Best of luck to you!

Greg

PS. When I visited NIH to enroll in the Danazol trial, the same visit was my final visit on the Campath trial. So I gave up 32 tubes that morning!

[Robi1Knobi]

Bad news: pulmonary fibrosis has gotten worse, but not sure its new job related (new environment, construction in building for mos, & stress exascerbated), or the fact that I've had 4 respiratory illnesses this year (3 between Jan-March (flu twice) and another now which required hospitalization June? I've started on inhalers this year, had 2 medrol packs, oxygen at night & prn.

Good news: Haven't needed 1 blood transfusion since I started the Danazol protocol & came off of it. Platelets are still low, but not low enough to need a transfusion. I'm going back to NIH in August, how're the rest of you?

[Greg H]

Hey Linda!

Sorry to hear about the fibrosis. I reckon it goes along with this odd mutation.

Glad to hear your Hgb is holding up. Mine is steady at 10.9 for the past few months. Like you, I have low platelets, but mine tend to swing low for a while, then back up, from the 60s to the 120s. Currently mired in the 70s.

Hope your NIH visit goes well and the fibrosis quiets down.

Take care!

Greg

[Robi1Knobi]

I inhaled some construction dust at my job last year, and it exacerbated the pulmonary fibrosis and I've been hospitalized twice for pneumomediastinum. At NIH in August, Dr. Young told me that I now need a double lung transplant, and later a bone marrow transplant. I had to get started on Promacta because my platelets were slipping down to 20's, even with staying on Danazol. Please be careful everyone, don't let this happen to you. I think I may die from this...

[Marlene]

I am so sorry to hear this Linda. I hope the Promacta gets those platelets up. I can't imagine having to deal with both of these diseases simultaneously. And thanks for the reminder to protect our lungs. At times I think we are overly cautious but hearing your story is a good reminder to stay vigilant.

Wishing you the best...Marlene

[Cheryl C]

So sorry to read your latest Robi1Knobi. You must feel daunted by the prospects of a double lung transplant and a BMT on top of that. You are in my thoughts and prayers. Thank you for the warning.