Home         Forums  

Go Back   Marrowforums > Treatments > Clinical Trials
Register FAQ Search Today's Posts Mark Forums Read

Clinical Trials Considering or participating in research studies

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Aug 28, 2011, 05:56 PM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Danazol for TERC mutation

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
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #2  
Old Mon Aug 29, 2011, 12:22 AM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 437
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.
__________________
Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/

Last edited by triumphe64 : Wed Dec 14, 2011 at 05:47 PM.
Reply With Quote
  #3  
Old Wed Aug 31, 2011, 09:00 PM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Hi Triumph!

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
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #4  
Old Thu Sep 1, 2011, 01:13 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 437
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.
__________________
Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
  #5  
Old Sat Sep 3, 2011, 03:53 PM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Type A

tell ME about it! A problem we can't "fix"...
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #6  
Old Wed Sep 14, 2011, 08:12 PM
Becky B Becky B is offline
Member
 
Join Date: Sep 2011
Location: Cheboygan, MI
Posts: 2
Danazol

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!
__________________
Age 41, Dx AA 1991, ATG 2004-no response, TERC mutation identified 2010 (nih), Father SAA (dec), Aunt AML (dec), Nephew AA (TERC), Sister (TERC)
Reply With Quote
  #7  
Old Wed Sep 14, 2011, 10:58 PM
cheri cheri is offline
Member
 
Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
triumphe64--
So THAT'S my problem...my type A personality.....I thought it was just the schizophrenia I've developed having MDS! LOL
__________________
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
Reply With Quote
  #8  
Old Wed Oct 5, 2011, 05:14 PM
ewagirl12 ewagirl12 is offline
Member
 
Join Date: Oct 2011
Posts: 4
Exclamation Going Into Trial

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.
Reply With Quote
  #9  
Old Thu Oct 6, 2011, 09:55 AM
cheri cheri is offline
Member
 
Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
Danazol

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!
__________________
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
Reply With Quote
  #10  
Old Thu Oct 6, 2011, 05:22 PM
ewagirl12 ewagirl12 is offline
Member
 
Join Date: Oct 2011
Posts: 4
HI

Quote:
Originally Posted by cheri View Post
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?
__________________
33 yrs old, diagnosed ITP in 2006, moderate aplastic anemia 2009, no transfusions, TERC mutation.
Reply With Quote
  #11  
Old Fri Oct 7, 2011, 10:15 AM
Greg H Greg H is offline
Member
 
Join Date: Sep 2010
Location: North Carolina
Posts: 660
One more for Danazol

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
__________________
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
Reply With Quote
  #12  
Old Tue Oct 25, 2011, 03:08 PM
ewagirl12 ewagirl12 is offline
Member
 
Join Date: Oct 2011
Posts: 4
Quote:
Originally Posted by Greg H View Post
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.
__________________
33 yrs old, diagnosed ITP in 2006, moderate aplastic anemia 2009, no transfusions, TERC mutation.
Reply With Quote
  #13  
Old Wed Oct 26, 2011, 01:09 PM
Lou K Lou K is offline
Member
 
Join Date: Oct 2011
Location: Johns Island, SC
Posts: 5
entering Telomere protocol in December

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.
Reply With Quote
  #14  
Old Wed Oct 26, 2011, 02:16 PM
meljef meljef is offline
Member
 
Join Date: Oct 2011
Location: Chicago,IL
Posts: 1
Cool

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!)
Reply With Quote
  #15  
Old Sun Oct 30, 2011, 06:26 PM
Becky B Becky B is offline
Member
 
Join Date: Sep 2011
Location: Cheboygan, MI
Posts: 2
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.
__________________
Age 41, Dx AA 1991, ATG 2004-no response, TERC mutation identified 2010 (nih), Father SAA (dec), Aunt AML (dec), Nephew AA (TERC), Sister (TERC)
Reply With Quote
  #16  
Old Sat Nov 12, 2011, 08:38 PM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Hi everyone!!

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
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #17  
Old Sat Nov 12, 2011, 09:55 PM
Greg H Greg H is offline
Member
 
Join Date: Sep 2010
Location: North Carolina
Posts: 660
Congrats!

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
__________________
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
Reply With Quote
  #18  
Old Sun Nov 13, 2011, 02:36 PM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Greg

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!
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #19  
Old Sun Nov 13, 2011, 02:44 PM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
again...

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.
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #20  
Old Wed Dec 14, 2011, 12:45 PM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Dr. Christine Garcia at UT SW

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 )
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #21  
Old Wed Dec 14, 2011, 02:55 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 450
Excellent that you're able to find a specialist so close to home!
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #22  
Old Thu Dec 15, 2011, 12:19 AM
Greg H Greg H is offline
Member
 
Join Date: Sep 2010
Location: North Carolina
Posts: 660
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
__________________
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
Reply With Quote
  #23  
Old Thu Dec 15, 2011, 01:56 AM
Robi1Knobi Robi1Knobi is offline
Member
 
Join Date: Mar 2007
Location: Austin, Texas USA
Posts: 98
Greg & Maus Blogs

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!!
__________________
Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
Reply With Quote
  #24  
Old Thu Dec 15, 2011, 10:13 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 450
Thanks, Linda. What a super gift! I absolutely agree about seizing the day.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #25  
Old Fri Dec 16, 2011, 09:54 PM
annmonster annmonster is offline
Member
 
Join Date: Nov 2011
Location: Los Angeles, Ca.
Posts: 46
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 ??
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Danazol side effect pvinod AA 4 Wed Sep 28, 2011 09:27 AM
danazol and zenapax (daclizumab) Wendy Beltrami Drugs and Drug Treatments 2 Thu Apr 5, 2007 02:45 AM
Danazol, cyclosporine and next... zenapax for Grant Wendy Beltrami Pediatrics 1 Wed Mar 21, 2007 04:54 PM


All times are GMT -4. The time now is 05:13 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2016 Marrowforums.org