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#76
Wed Jul 4, 2012, 03:17 PM
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Talking Telomeres 2012-07-04
Hi all!
It's been a while since I filed a Danazol progress report. Before starting on Danazol, I had a two-week transfusion interval. After about three months on the drug, that began to lengthen a bit. By April, I had a four week interval. That held in May, and I pushed it to five weeks in June. But I may have pushed it a little too far, because I'm having a transfusion on Friday after only three weeks. However, given that I'm being transfused at a solid 8.0 Hgb level, I expect to be back up to four weeks next month. I must say, it is much nicer having transfusions only every four weeks instead of every two. I had my sixth-month follow-up at NIH at the end of May, and really have very little to report, other than that I gathered from Dr. Dumitriu that he feels the Danazol trial is, on the whole, showing very good results. But nothing will be published for another 18 months or so, so he wasn't too forthcoming. The follow-up testing is mostly lung-oriented, since some of the folks on the trial have pulmonary fibrosis, and that disease is one of the consequences of the TERT mutation that I have. Fotunately, I don't, so there's nothing of interest to report on that score. I'll have a BMB at the one-year follow-up in November. I'm still taking 1500 mg of Exjade every morning, and that appears to be having a positive effect. My ferritin topped out at 5178 before I started on Exjade in early March. This week it stood at 3408. So the Exjade appears to be working. Happy Independence Day! 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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#77
Wed Jul 4, 2012, 11:46 PM
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Good news about both the transfusion interval holding fairly steady, and the Exjade. Happy Independence Day to you too, Greg.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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#78
Thu Aug 16, 2012, 10:17 PM
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Talking Telomeres 2012-08-16
Hi All!
When I last checked in with an update about my progress since entering the NIH trial of Danazol for bone marrow failure, I was pleased to report that my transfusion interval had stretched from two units every two weeks to two units every four weeks. And now it looks like we're doing some more stretching. I had my most recent transfusion of packed red blood cells on July 6 -- two units, as usual. My regular biweekly CBC on July 18 pegged my hemoglobin at 9.4 -- the highest number I have had two weeks after a transfusion in many months. Two weeks later, on August 1, when I should have been in transfusion territory, I turned in an 8.8. We generally don't transfuse, in my case, until the hemoglobin level slides pretty close to 8.0. So, at four weeks, no transfusion. A week later, August 8, hemoglobin at 8.7. Another week, August 15, Hgb at 8.8. Six weeks, and no transfusion yet. So, I appear to be resting on some sort of plateau, or, perhaps, turning some sort of a corner. We decided to wait two weeks for the next CBC, unless my symptoms tell me that my Hgb is crashing. On other fronts, my platelets, which had climbed into the mid-100s in the Spring, have retreated to a few points above 100. But they seem to be stable at that level for the past couple of months. My neutrophils and lymphocytes have just taken a big kick upwards in these last labs, but I won't put much stock in that until it's confirmed in subsequent labs. All in all, I am pretty pleased with the much-lengthened transfusion interval, and pretty well convinced the Danazol is having some impact. 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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#80
Thu Aug 16, 2012, 11:49 PM
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It's great too see that improving Hgb trend!! Has your ferritin level responded well with the reduced need for PRBCs?
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%  ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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#81
Fri Aug 17, 2012, 12:07 AM
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Wow! Awesome news, Greg!
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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#82
Fri Aug 17, 2012, 12:11 AM
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Greg,
That's great to hear. It took six or nine months for it to kick in for me, but my Hg has risen slowly over many, many months. My Hg finally reached the bottom of the normal range in April. I hope you continue to improve.
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Dallas, Texas - Age 81 - 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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#84
Fri Aug 17, 2012, 04:47 AM
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Danazol
Hi Greg,
Congratulations to the positive results! Kind regards Birgitta-A
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#85
Fri Aug 17, 2012, 06:33 AM
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I have on a funny hat and and raising a glass of sparkling seltzer in your honor, ,,,,,,!
 Good news, Greg! (Hug) Patti
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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#87
Fri Aug 17, 2012, 08:54 AM
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Hi Greg,
Wonderful, wonderful, wonderful! Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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#89
Fri Aug 17, 2012, 10:52 AM
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Nice work, Greg! Keep stretching out those transfusions.
What symptoms of low hemoglobin would cause you to alert the doctor that it's apparently transfusion time? We would predict my wife's counts based on how she felt, but we didn't always peg them properly.
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#90
Thu Aug 23, 2012, 02:20 AM
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Wonderful news, Greg! Celebrate every victory.
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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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#91
Tue Aug 28, 2012, 02:00 PM
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Quote:
Sorry for the slow response; been busy around here. Normally, when I go sub-8 on Hgb, I get pulse pounding in the ears -- especially at night -- shortness of breath on exertion, and dizziness when I stand up from my desk chair and walk away quickly. I also get odd chest pains. Not so much painful as like a little electrical shock. I suppose its some form of angina. I'm having none of that now, and I go for my 8-week CBC tomorrow. I'll report back. 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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#92
Mon Sep 24, 2012, 08:43 PM
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Greg,
We haven't heard from you in a while. We hope you're OK and just busy again.
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#93
Mon Sep 24, 2012, 11:31 PM
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Hi Neil!
Kind of you to ask. In fact, I was hoping to post a little update after my CBC on Wednesday. If all goes according to plan, that will show my HGB still in the 9s, and Friday will mark my 12th week with no transfusions. The Danazol appears to be working for my very odd form of MDS. It has been a bit busy 'round hear lately. My wife and I had the chance to rescue a couple of old letterpress printing presses from the basement of a local newspaper and have installed them in our shop out back of the house, where I have been cleaning, oiling, and otherwise getting them into working condition. Here's a photo of a Chandler & Price Old Style 8x12 Platen Press, manufactured in 1900. As you can tell from my overalls, it is pretty caked with grime. [IMG]  Time to Clean by GregHankins, on Flickr[/IMG] The other press is a 1966 vintage Vandercook Proof Press, a hand-cranked contraption that is far cleaner. I'll check back in with a CBC report later in the week -- and try not to be so scarce around here. 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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#94
Tue Sep 25, 2012, 01:05 AM
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Greg,
Love the post and the pic. Congratulations on the Danazol success! Fingers crossed for Wednesday. 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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#95
Tue Sep 25, 2012, 01:14 AM
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Quote:
We saw this printing press, over 100 years old, in the Public Museum of Grand Rapids last year. It works nicely and in all the time it's been in the museum it's needed only oiling and one spring replaced. What we liked best were the drawers of movable type nearby. When people talk about fonts and point sizes in their word processors, they should know that this is what they are really talking about.
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#96
Tue Sep 25, 2012, 01:20 AM
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Very cool, Neil!
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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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#97
Tue Sep 25, 2012, 08:39 PM
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Next time I see my brother I'll show him these posts.
He does volunteer work managing and physically restoring items and machinery for a Pioneer Village. He never seems to talk about anything else.....yawn! Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy. FISH reported normal cytogenetics but gene testing showed Xq 8.21 mutation Xq19.36 mutation Xq21.40. mutation 1p36. Mutation 15q11.2 deletion
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#98
Wed Sep 26, 2012, 08:03 PM
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You guys should all watch your p's and q's.
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Dallas, Texas - Age 81 - 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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#99
Sat Sep 29, 2012, 01:50 AM
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Great news about your 3 month anniversary.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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#100
Fri Oct 5, 2012, 10:08 PM
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Vitamin K 2 M4
Hi Greg,
I recently read an article (from a non trustworthy source) which seemed to indicate that some research has been done which shows that Vitamin K 2 can prevent telemere shortening. Have you seen any research articles on this? I can't seem to find out anything even vaguely associated with a clinical trial or any medical research but I don't have access to medical journal articles. Regards Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy. FISH reported normal cytogenetics but gene testing showed Xq 8.21 mutation Xq19.36 mutation Xq21.40. mutation 1p36. Mutation 15q11.2 deletion
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