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  #26  
Old Sat Dec 17, 2011, 10:43 PM
Greg H Greg H is offline
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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
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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
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  #27  
Old Wed Dec 21, 2011, 05:44 PM
Robi1Knobi Robi1Knobi is offline
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blood counts increasing yay!

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 (.
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
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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.
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  #28  
Old Wed Dec 21, 2011, 10:56 PM
mausmish mausmish is offline
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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
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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
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  #29  
Old Thu Feb 9, 2012, 07:36 PM
Robi1Knobi Robi1Knobi is offline
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going back to NIH

I'm headed back to NIH for some follow-up testing on Valentine's Day ). Any of you going to be there then?
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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.
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  #30  
Old Thu Feb 9, 2012, 08:37 PM
Greg H Greg H is offline
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Hey Linda!

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

Hope you have a great trip!

Greg
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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
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  #31  
Old Sun Feb 12, 2012, 09:29 AM
cheri cheri is offline
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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.....
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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
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  #32  
Old Sun Feb 12, 2012, 09:50 AM
Greg H Greg H is offline
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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
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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
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  #33  
Old Sun Feb 12, 2012, 02:18 PM
Birgitta-A Birgitta-A is offline
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Danazol

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
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  #34  
Old Tue Feb 14, 2012, 09:39 AM
cheri cheri is offline
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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?
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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
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  #35  
Old Thu Feb 16, 2012, 02:50 PM
Birgitta-A Birgitta-A is offline
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Revlimid

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
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  #36  
Old Thu Feb 16, 2012, 07:21 PM
cheri cheri is offline
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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!!!!!!!!
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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
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  #37  
Old Fri Feb 17, 2012, 05:28 AM
Birgitta-A Birgitta-A is offline
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Revlimid

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
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  #38  
Old Mon Feb 20, 2012, 01:00 PM
Robi1Knobi Robi1Knobi is offline
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back from NIH

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 ). 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
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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.
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  #39  
Old Mon Feb 20, 2012, 01:04 PM
Robi1Knobi Robi1Knobi is offline
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hair loss

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.
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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.
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  #40  
Old Mon Feb 20, 2012, 01:06 PM
Robi1Knobi Robi1Knobi is offline
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Greg's hair loss

Greg, you made me lol with a visual of your peach fuzz . 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!
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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.
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  #41  
Old Tue Mar 20, 2012, 11:08 AM
Robi1Knobi Robi1Knobi is offline
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NIH Pharmacy

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 .
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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.
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  #42  
Old Sat Dec 15, 2012, 04:59 PM
Robi1Knobi Robi1Knobi is offline
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HGB 12.5, WBC 3.4, platelets 67

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
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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.
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  #43  
Old Wed Jan 9, 2013, 04:28 PM
ewagirl12 ewagirl12 is offline
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Short Update

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.
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33 yrs old, diagnosed ITP in 2006, moderate aplastic anemia 2009, no transfusions, TERC mutation.

Last edited by ewagirl12 : Wed Jan 9, 2013 at 04:29 PM. Reason: spelling
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  #44  
Old Thu Apr 4, 2013, 03:55 PM
Robi1Knobi Robi1Knobi is offline
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ann monster

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 )
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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.
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  #45  
Old Sun May 12, 2013, 05:39 PM
Robi1Knobi Robi1Knobi is offline
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acne

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 ). xoxoxoxo
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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.
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  #46  
Old Sun May 12, 2013, 06:23 PM
triumphe64 triumphe64 is offline
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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.
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began 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/
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  #47  
Old Fri May 31, 2013, 08:48 AM
Greg H Greg H is offline
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Quote:
Originally Posted by Robi1Knobi View Post
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
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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
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  #48  
Old Tue Jun 4, 2013, 11:21 AM
Robi1Knobi Robi1Knobi is offline
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Smile Weaning after August visit to NIH

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...
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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.
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  #49  
Old Wed Jul 31, 2013, 05:15 PM
Robi1Knobi Robi1Knobi is offline
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Tremors

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!)
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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.
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  #50  
Old Thu Aug 1, 2013, 08:00 AM
Marlene Marlene is offline
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Linda,

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

M
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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