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#1
Fri Aug 17, 2012, 08:35 AM
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Today's visit
As expected the news was not good. Three options: Hospice called in to make him comfortable - weeks not months usually with AML (doctor's words NOT mine).
Another clinical trial. Decitabine (Dacogen) I want him to do the Dacogen which he may be able to start Monday if he agrees to it. They are ordering oxygen for home. Dr Khoury said not much chance of anything working but I have seen it work for others. Port not an option because of low platelets. BP is very low so stopping all meds for BP. Waiting to gets labs and fluids I think. Kind of numb.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying. 
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#2
Fri Aug 17, 2012, 09:01 AM
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Contacted NIH
Dear Linda,
I just sent an e-mail to everyone I know at NIH with copies of your posts from yesterday and today. I also sent a copy to you as well. I hope they have something that can help you and Al. We are all praying for you - for God's Healing Hand as well as His strength to help you both go forward from here. Call on me if there is anything I can do. With love and prayers, Sally
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#3
Fri Aug 17, 2012, 09:10 AM
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God bless you, Sally. Thanks so much. We are waiting to get fluids and possibly blood. BP was very low and they have taken him off all BP meds and ordered oxygen for home.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#4
Fri Aug 17, 2012, 11:35 AM
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Dear Linda,
I'm am so sorry to hear the bad news for Al. It is so sad. I know Sally is getting in touch with NIH, hopefully they will have some good news, you sure do need it. Thank you Sally! We are keeping you in our prayers Linda! (Hug) God Bless, 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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#5
Fri Aug 17, 2012, 12:04 PM
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Linda I will continually keep you both in my prayers.
Prayers & Hugs Kim
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Kim daughter of Phil 76; Diagnosed 2011 with MDS, Refractory anemia with excessive blasts; Diagnosed 2012 with AML; Treated with Vidaza and Dacogen; Currently only being treated with blood transfusions
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#7
Sat Aug 18, 2012, 12:43 AM
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Linda, sending more prayers to both of you.
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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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#8
Sat Aug 18, 2012, 04:50 AM
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Dacogen
Dear Linda,
Now we hope that your brave husband will tolerate Dacogen and have a positive response! Kind regards Birgitta-A
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#9
Sat Aug 18, 2012, 05:21 AM
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hi linda,
don't stop to fight... I hope an improvement with dacogen... Ask also to your doctor if al can take coenzyme Q10 (ubiquinol form)... that can help for general welness. I think a lot to you. béné
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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#10
Sat Aug 18, 2012, 07:33 AM
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Hi Linda, ditto to what everyone else has said. Good luck on the dacogen. Sending prayers, positive thoughts and wishes to you both.
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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#11
Sat Aug 18, 2012, 10:02 AM
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Oxygen Concentrator
Linda;
I am so sorry for the news about Al. Please give him my love, and know that you are both in our thoughts and prayers. I understand that numb feeling - when Earl was first diagnosed - the one Dr. told me he had between 5 and 8 months. We have passed the 5 - and I am hoping for many more. I hope the Dacogen works for Al. Remember - if you are getting home oxygen - you want a concentrator, not the big green metered tanks. Too, PM me any time or call - I sent you a PM with my phone numbers. Whatever the Dr.s orders are - if you have a concentrator - you can up it if Al is feeling really bad, gets a cold, etc. Not much - just by a litre or so, and it generally helps not only to get the oxygen to the rest of the body - it might give him a little more energy. With the metered tanks - they will only refill it when the calculated time is up - so you can't add a bit if needed. And get one of the concentrators where you can refill the small tanks life if you are headed to the Dr.'s. Take care Honey - and if you need anything - please don't hesitate to call. ((((HUGS)))) Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS  . and I can't help the one I love the most.
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#12
Mon Aug 20, 2012, 08:53 AM
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Thinking of you and Al today and keeping you both in our prayers.
Hugs, Patti and Dean
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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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