Danazol for TERC mutation

[Robi1Knobi]

Hi friends :o). 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 :D

[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]

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 (http://forums.marrowforums.org/showthread.php?p=20217).

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]

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 (http://forums.marrowforums.org/showthread.php?p=20217).

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 :o(. 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 :o)

[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 :o), 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 ??

[Greg H]

Hey Ann!

Are you in the NIH trial, some other trial, or doing Danazol outside of a trial? Do you have a TERT or TERC mutation?

I've been doing some reading on the way(s) in which testosterone analogs increase red blood cell production. In the NIH trial, the hope is that the androgen will improve the telomerase cycle, lengthen our telomeres, and thereby improve blood production.

However, I found a study that explained that androgens can also increase the output of EPO from the kidneys, which can stimulate red blood cell production. I'd wager that this effect would be great for folks whose EPO is low, but maybe not as significant for folks (like me) whose kidneys are already screaming for blood.

Good luck with the Danazol!

Greg

[Robi1Knobi]

Its been 4 months on Danazol now & last Friday my labs: hgb 11.4, platelets 79, I don't remember my wbc or hct right now, but all are increasing.
I THINK my boobs are getting smaller, but they were small to begin with so what's a little smaller, that's what padded bra's are for anyway right ladies?
My hair on top of my head seems like its thinning :o(.
I figured out the increased migraines were because I was taking melatonin with 5-htp. The 5-htp increases migraines in studies, I quit taking it & stopped having so many. Now I just take plain melatonin, which has been shown to increase platelets in studies.
I'm doing just fine & want to continue to find things that make me happy, as I hope all of you do also.
Happy Holidays!! Linda

[mausmish]

Hi Linda - sounds like you're doing great! I could do with some boob reduction myself, ha ha. Sorry about the thinning hair. At a year post-BMT my doctors all say it's unlikely mine will ever get any better than the sparse fuzz I now have. It's a small price to pay in exchange for my life but all the same, I'd prefer both hair and life and hope your hair loss is temporary. Karen

[Robi1Knobi]

I'm headed back to NIH for some follow-up testing on Valentine's Day :o). Any of you going to be there then?

[Greg H]

Hey Linda!

I'm not sure back in Bethesda 'til May. How are your counts holding up?

Hope you have a great trip!

Greg

[cheri]

Hey Linda....
Re: Danazol---I have been on 200mg/day for several months....I too have noticed that I am losing hair on the top front of my head....about a quarter size hair ball in the shower.....has your hair loss slowed at all?
I have just increased to 300 mg / day and hope I don't go bald---and I was worried about a beard!

Greg--have you noticed anything? I wonder, if being a guy, there is any noticeable changes....

What doses are you guys on? Any improvement in Hgb levels? None for me so far.....

[Greg H]

Hey Cheri!

The NIH trial starts out at 800mg/day. Dr. Dumitriu told me that the dosage can be reduced if side effects are a problem.

So far, I haven't had any. My liver counts are fine, my kidney counts are fine, and there don't seem to be any other changes that I can detect. I am completely bald on the top of my head, and have been for years. I've been growing a nice crop of peach fuzz up there, but that started when I began taking a multivitamin that includes saw palmetto. I suppose the Danazol could be escalating the process, but I wouldn't swear to it. My wife thinks it's hilarious to see hair on my head and laughs every time I take off my ball cap.

As for my counts, both my platelets and my neutrophils have increased since I started the drug. On the red cell front, I still need transfusions every other Friday. I have my CBC every other Wednesday, just before transfusion, and my Hgb "in the trough" has gone from 7.1 when I started Danazol to 8.4 this past week. Absolute reticulocytes have gone from 40 to 79. I'm not ready to call that progress yet, but it seems like there is some glimmer of hope in those numbers.

Take care!

Greg

[Birgitta-A]

Hi Greg,
Very good that platelets, neutrophils and now Hgb and reticulocytes have increased :)! We can only hope that the counts will continue to improve.
Kind regards
Birgitta-A

[cheri]

Today I am getting a platelet transfusion for the first time since November!
They were 21k yesterday--quite shock since they had been holding in the
40's and up. And since I am now on 300 mg of Danazol....??????

I think it is the Revlimid....and my blood transfusions are more frequent now, which is the opposite of what the outcome is supposed to be. I'm also having these red splotches, more GI issues and wondering if it is counter productive....and how long I should wait before giving it a chance to work?
The best numbers I had a few weeks ago was when I was off the Revlimid....

Any input?
:confused:

[Birgitta-A]

Hi Cheri,
Yes, the lower counts could depend on Revlimid. In trials they evaluate the effect of Revlimid after 16 weeks - how long have you been taking the drug?

We know that about 25% of patients without the 5qdeletion will respond. There are no new studies about Revlimid in high risk MDS patients without the 5qdeletion - Revlimid is now always combined with other drugs. I have not seen a combination with Danazol but several with Vidaza and quite good results.
Kind regards
Birgitta-A

[cheri]

Hi Birgitta
I would have to look at how long I was on Revlimid because I stopped and started again a few times. Started 5 mg every other day; then went 5 mg a day for about a month; then off because of GI issues; then back on since end of Jan @ 5mg every other day.

I found out I need a procedure to remove a blockage in my ureter (tube from bladder to kidney) and not sure if that could affect counts...don't seem to have an infection. Wonder if that is what is also causing distress in my lower abdomen.

Need another PRBS transfusion tomorrow--talked to my Dr about whether Revlimid is counter productive or I need to stick it out....we'll chat again Monday. He's concerned about the low white counts (under 1) and upped my Neupogen to 4x week.

Every day is an adventure!!!!!!!!

[Birgitta-A]

Hi Cheri,
You know both Revlimid and Thalidomide are often "long-acting" - they can have an impact several months after the patient has stopped taking the drug. This means that you can say that you started to take Revlimid when you took the first tablet. If this is more than 16 weeks ago you should have responded now if Revlimid is working for you.

I don't think a blockage in the ureter can affect counts but it can probably lead to higher pressure above the blockage and this can give pains. If it is a stone it can damage the inside of the ureter - kidney stones can hurt very much as we all know. You will feel it in the back not in the abdomen.

Too bad with the low WBCs - hope they will increase with Neupogen!
Kind regards
Birgitta-A

[Robi1Knobi]

Hey guys! I had a good NIH visit Feb. 14th. I had a half-day of testing that included an Abdominal (abd) & also a transvaginal (violated!) Ultrasound (us). This was my 3rd time for them to get the abd us, since I didn't have enough urine in my bladder the last 2 times. I chugged water from 7-9am (3 bottles) and they got it this time :o). My hgb was 10.1, hct 37, wbc 2.7, platelets 52 (decreased from 70's since last month). I did have a bladder infection last month, maybe why my platelets went down 20 points? It was a good visit and the docs gave me 2 thumbs up :). I have to go back in 6 mos (August?) and have another BMB then. After my NIH visit, I met my hubby at IAD and we flew to NYC together, to do something on my "wish list". We spent 5 days close to Chinatown & Little Italy, and did most of the touristy things I've always wanted to do. I hope some of you are able to do things on your "wish list" too. Who knows how long we will feel good on Danazol? Dr. Dimitriu said that I could still be on Danazol after the study, so that was encouraging. However, I think it costs boocoo's of dollars. Anyway, those of you feeling good go have some fun!!
Cheri, you are having a rough time right now, I hope you find the cause of your decreasing numbers & kill it! Keep us posted, I feel like we are all holding each other up:p

[Robi1Knobi]

I bought some chinese herbs off of drugstore.com (Peter Lamas chinese herbs regenerating scalp serum) & have been using it on the front part of my scalp. I feel like its helping some, but its expensive & once this bottles empty, I may be tested to buy some of those hair-increasing lights from skymall lol.

[Robi1Knobi]

Greg, you made me lol with a visual of your peach fuzz :D. I'm glad that you and your wife are making the best of it...that's the only way right? I think we should all watch/listen to more comedies, that's great medicine!

[Robi1Knobi]

In case you are having trouble getting your meds before you run out (like I just did!), I suggest putting a weeks worth in a smaller bottle and when you get to that one, refill your medication :rolleyes:.

[Robi1Knobi]

Just updating ya'll on my levels, how are yours?? I feel great, haven't felt this good in years, hopefully you are all having the same, wonderful results?? Merry Christmas, enjoy each moment...HUGS, Linda

[ewagirl12]

Hi Everyone,

My platelets went up to 40 last year a few months after taking Danazol, but it seems that was short lived as my platelets now are hovering in the 16s and 20s. I'm very frustrated.

But on the good side, my red blood cells are now normal; this is the first time that happened after almost 5 years.

I wish my platelets would at least get to a safe level.

Still frustrated as ever and this disease is starting to wear down on me.

[Robi1Knobi]

Ann Monster, my hgb is holding steady at 12, wbc's 3, platelets 70 & I was a member of the IBTC before my breast size decreased (ever so slightly). I hope your levels go higher & higher too :o)

[Robi1Knobi]

I really have no complaints about side effects, but now I have acne on my face, some on neck & back. Its been almost 2 years on the study, so hopefully the acne will go away once I'm weaned. My blood counts haven't been this high in 12 years (since pregnancy with my daughter jump started this disease), and I've been living it up & feeling GREAT! I imagine alot of you are feeling good too, because noone else is hardly writing :o). xoxoxoxo

[triumphe64]

I don't have the TERC, but my Hg reached normal in March. I've reduced my Cyclosporine, and things are still normal. I also feel better than I have in years.

[Greg H]

I really have no complaints about side effects, but now I have acne on my face, some on neck & back. Its been almost 2 years on the study, so hopefully the acne will go away once I'm weaned. My blood counts haven't been this high in 12 years (since pregnancy with my daughter jump started this disease), and I've been living it up & feeling GREAT!

Hey Linda!

Thanks for the update. I've just posted one over on another thread. I also am doing well and feeling great with HGB just below normal.

I haven't wanted to jinx anything by asking what comes after the two years is up (I'm superstitious like that). Is weaning in our future?

I have had almost no side effects, aside from growing some peach fuzz on my bald pate.

Take care!

Greg

[Robi1Knobi]

I was told that they will start weaning my Danazol dose after my August visit. I don't know about everyone else, but since I've been feeling so great, I worked my butt off & paid off my credit card debt this last 2 years, also fixing our house so if I do get sick, we could sell it and get into a house that my husband can afford on his income alone. I know ya'll know what's important now, and a big house and car payment ISN'T it. I hope ya'll have been enjoying the freedom from transfusions, and almost feel like your old selves, I know I do...

[Robi1Knobi]

Anyone else suffering with hand tremors? Mine are really bad & people have been making comments on it, its embarrassing, looks like I'm having DT's from alcohol withdrawal (NOT the case!)

[Marlene]

Linda,

When was the last time you had your iron, B12 and folate checked? Also, magnesium.

M

[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 :o). 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 :o)

[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.