Danazol for TERC mutation

[Robi1Knobi]

Hi friends ). I just started a Danazol trial August 11th for my AA with TERC mutation, and pulmonary fibrosis. I haven't noticed any changes or felt any different. Dr. Scheinberg told me I am #1 out of 25 patients starting on the study. I hope to talk to some of you on here..Thanks, Linda

[triumphe64]

I've taken it for a couple of years now. It seems to have helped my condition a lot, but it took several months for me to feel the effect.

[Robi1Knobi]

How are you doing these days? I'm curious, how quickly did you see results from the Danazol? I have moderate AA, hgb 8.9 right now, platelets 52 and I'm debating over getting another blood transfusion soon. Do you have the TERC mutation also? Thank you, Linda

[triumphe64]

I have Pure red cell aplasia, so only my red cells are affected. My last Hg was 11.9 (below normal for men) but I have slowly been able to reduce my cyclosporine which is has more side effects for me than the Danazol. Unfortunately, none of the illnesses on these boards have quick fixes. Type A personalities must go wild.

[Robi1Knobi]

tell ME about it! A problem we can't "fix"...

[Becky B]

I am going out to NIH on Tuesday, 9/20 to enter the clinical trial. I am glad to see someone on the forum in the trial. It will be nice to chat!

[cheri]

triumphe64--
So THAT'S my problem...my type A personality.....I thought it was just the schizophrenia I've developed having MDS! LOL

[ewagirl12]

Hi! I'm also getting into the Danazol clinical trial at NIH. I'm going in next week for my bone marrow biopsy. I have moderate AA and my platelets are at 23 at the moment.

I feel alone with AA and quite a bit scared with the biopsy. Any updates on those who started this drug earlier?

Also, I'm looking for someone to just chat with about what we're going through.

[cheri]

We are discussing putting me on Danazol for MDS--low platelets are the issue.
My Dr said it takes a few months to kick in...I'm just worried about growing a beard!

[ewagirl12]

Originally Posted by cheri

We are discussing putting me on Danazol for MDS--low platelets are the issue.
My Dr said it takes a few months to kick in...I'm just worried about growing a beard!

I hope I won't grow a beard too . How are you?

[Greg H]

Hi y'all!

I've just been invited up to NIH for screening for the Danazol trial. But I have MDS instead of AA and my mutation is in TERT instead of TERC.

I look forward to comparing notes about the trial, assuming I make it through the screening.

I'm not too worried about growing a beard, since I've had one since Junior year in High School, but it would be nice if the Danazol put the hair back on the top of my head!

I've been reading some of the NIH journal articles on telomeres and wrote up what I found out so far here.

Let me know if you run across anything interesting. I see some of you have had family members tested. I was wondering if that's something I need to do. The articles make it pretty clear that the TERC and TERT mutations can run in families.

Take care!

Greg

[ewagirl12]

Originally Posted by Greg H

Hi y'all!

I've just been invited up to NIH for screening for the Danazol trial. But I have MDS instead of AA and my mutation is in TERT instead of TERC.

I look forward to comparing notes about the trial, assuming I make it through the screening.

I'm not too worried about growing a beard, since I've had one since Junior year in High School, but it would be nice if the Danazol put the hair back on the top of my head!

I've been reading some of the NIH journal articles on telomeres and wrote up what I found out so far here.

Let me know if you run across anything interesting. I see some of you have had family members tested. I was wondering if that's something I need to do. The articles make it pretty clear that the TERC and TERT mutations can run in families.

Take care!

Greg

Hi Greg,

Hope you made it to the clinical trial. I have two more days left for tests.

Any updates on those who started the Danazol already?

Thanks.

[Lou K]

Just made my appt for NIH to do tests and reevaluation to enter Protocol. I will be going in December. I have concerns about going on Danazol. Any comments from women going on it? I have AA and Pulmonary Fibrosis. Mutation is in TERT area and the first kind they have seen. Doctors have concluded my father, grandfather and Paternal aunt died prematurely from this condition assuming this from using their autopsies and oral medical history from me and my mother. They all had AA, PF and Liver disease. They are testing my daughter and my sister to see if they are carrying the mutation too.

[meljef]

Hi everyone. I am new to this forum. I just came back from NIH two weeks ago and am now enrolled in the clinical trial for danazol and pulmonary fibrosis. My med history also includes aplastic anemia, telomiere disease, ITP, alopecia, necrosis of the hips, and the occasional brain lesion thrown in for good measure. I have been battling something or other for the past 20 years. During the last two years, all 3 blood lines dropped to dangerous levels. They just now are cpming back finally. Still low but not dangerous anyway. I tried Campath, cyclosporine, ATG, etc. Nothing worked and some almost killed me. I started Danazol yesterday. I saw Dr. Young and Dr. Townsley at NIH. They acknowledge that Danazol works on my condition in the test tube but has not been tested on a human yet. So no promises. Not sure what to expect other than some gaining a bit of muscle mass. I guess this disqualifies me from the Hall of Fame. Does anyone know if Danazol makes your hair grow? My immune system likes to kill my hair. The cyclosporine actually reversed that and it all came back, but, now that I am off of it, I think it's only a matter of time. I know it can grow unwanted hair in women but I see conflicting answers in regards to men. Maybe this drug won't work and I am just delaying the inevitable, but at least I'll look good doing it.
(If you don't laugh, you're going to cry!)

[Becky B]

I have completed 5 weeks of danazol. Very few side effects. Weight gain and unusual muscle cramps. I have had problems maintaining my hgb but that might just be a progression of my condition. Prior to this year I had not needed a transfusion in a couple of years. This year I have had 4 with the 2 most recent transfusions within only 4 weeks of each other. Just in for the long wait. Nih stated it could be 3 months to 1 year before any benefits are seen. It is nice to see others in the trial. Hoping the danazol will help us all.

[Robi1Knobi]

I'm so excited to see so many of us on here, going through the same thing. It makes me happy to know I'm not the only one...I can't tell you how much I appreciate ya'll reaching out & sharing your experiences with me too. I was actually the 1st person that started on the Danazol trial in August, guess I got there first! All 3 of my blood levels have been increasing, hgb 10.8, wbc 2.1, platelets 71. Side effects: increased migraine headaches (6 last month), a FEW extra chin hairs, increased energy & (ahem) sex drive, and a little weight gain (5 lbs). My local hematologist told me that I'd grow more hair, so I'm keeping my eye on Groupon for hair removal coupons! All of you that have TERC or TERT, are your parents that also carried the gene alive? My Dad and Grandfather both died in their 40's from liver cirrhosis, and I know my Dad had COPD, probably undiagnosed pulmonary fibrosis. Drinking & smoking didn't help, neither did being Irish, there was no luck involved (. Do you guys work? How do you stay healthy? I take Juice Plus plus juice on my days off, try to avoid foods that I think I have an allergy too (dairy). I want to get tested for antigen white blood cell food allergy tesing, but they don't do that at NIH, and its a $750 test. I think it'd be important to know if we are allergic to foods, so our immune systems don't have to work so hard. I haven't need a blood transfusion since May 2011. I use an incentive spirometer I got from work for my breathing, whenever I'm short of breath I use it and I cough & then its easier to breath. Love, Linda

[Greg H]

Hey Linda!

That's great news about your counts improving! That gives us all hope. The side effects don't sound too terrible; my local doc noted that the couple of female patients he'd had on Danazol did in fact experience some unwanted hair growth and voice deepening. I'm not much sure what to expect, as a guy, in terms of side effects. But Dr. Dumitriu assured me they haven't seen any breast or prostate enlargement when using Danazol outside of this trial.

I'm having PRBCs every other week at this point, so I'm not expecting miracles, but I'd like to lengthen the transfusion interval. What was your Hgb hanging at when you started the trial?

Not sure about my relations and TERT/TERC mutations. I hope to begin to work on getting some of them tested once I'm in the trial. I go for screening right after Thanksgiving.

Continued good luck!

Greg

[Robi1Knobi]

By the way Greg, thanks for the info about the Greek restaurant. I'll be back at NIH on Valentine's day 2012, and will check it out! There's also a vegetarian restaurant I want to go to, got a www.restaurant.com gift certificate at 80% off for it, so that's on the list too!

[Robi1Knobi]

Do any of you have www.caringbridge.com websites? Its a great way to tell your story & also give updates to friends/family. I have a site on there, just type in /lindarobicheaux after the website.

[Robi1Knobi]

Just wanted to update my thread, I have searched for who does TERC & TERT research & found a Dr. Christine Garcia in Dallas at UT Southwestern. I'm going to see her today so she can get a baseline on me. How fortunate that someone who studies only TERC/TERT is in Texas!! Its a 4 hour drive from Austin, but maybe what they learn from me can help others. I'll let you know how it goes )

[mausmish]

Excellent that you're able to find a specialist so close to home!

[Greg H]

Hey Linda!

Neat! I will have to search for her on PubMed and see what's she's published on the subject. Let us know how it goes and what she's working on.

Take care!

Greg

[Robi1Knobi]

You guys have done a fantastic job on your blogs, enjoyed looking at them. Thanks for encouragements, tomorrow won't be a big deal, just a PFT (yay) and a walk test. I return to NIH Feb 14th for a day of lovely testing, then took money out of my 401K to go to NYC with my honey ), his surprise Christmas/Anniversary gift. If we don't live life now while we feel good, who knows what tomorrow may bring. Seize the Day!!

[mausmish]

Thanks, Linda. What a super gift! I absolutely agree about seizing the day.

[annmonster]

I've been on Danazol for about 5 weeks for MDS..... side effects aren't too eventful.... but I have noticed that my breast size is decreasing .....what the heck ?? !!!!! Ah well , totally worth it if it stimulates some red blood cell growth- right ??