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  #1  
Old Thu Aug 16, 2012, 05:27 PM
Al's Wife Al's Wife is offline
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Worst news ever

Just got this email from clinical trial nurse:
Unfortunately, blasts increased to 25-30% on his bone marrow. Sorry for this sad news. Dr. Komrokji advises him to stop the eltrombopag immediately. He is being taken off study."
Still trying to process.
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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  
Old Thu Aug 16, 2012, 06:26 PM
Sally C Sally C is offline
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My dear Linda,
I can't tell you how distressed I am to hear this news. All I can say is that I am sure all on the forums will be praying for you and Al. May God comfort you, give you hope and a way to go from here.
God Bless and many many hugs,
Sally
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  #3  
Old Thu Aug 16, 2012, 06:33 PM
milliken2 milliken2 is offline
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Love and Prayers Sent Your Way

Linda;
I am SO sorry for this news. I had so hoped that things would turn around for Al and you. Please know that you are both in our thoughts and prayers - ad if you need ANYTHING - let me know.

((((HUGE 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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  #4  
Old Thu Aug 16, 2012, 06:48 PM
PattiDean PattiDean is offline
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So Sad

Oh Linda,

It is so very sad to hear this news.

As Sally said, everyone on the forums will have you and Al in our prayers.

We will hope, believe and pray for you and Al.

God Bless

I wish I could reach through my computer and give you a 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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  #5  
Old Thu Aug 16, 2012, 09:13 PM
Mydad Mydad is offline
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Linda I am so sorry to hear. You and Al will be in my prayers.

Hugs and prayers,
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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  #6  
Old Thu Aug 16, 2012, 09:23 PM
Greg H Greg H is offline
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Linda,

I am really sad to hear this. This disease has thrown a lot at you guys, and it doesn't seem to be done yet.

I suppose the next question will be whether, at this point, to call it AML, and whether to treat it with induction chemotherapy or with something else.

I'm sorry the promacta trial didn't work out, but we are all still pulling for you.

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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  #7  
Old Thu Aug 16, 2012, 10:09 PM
tytd tytd is offline
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promacta

Hello Linda and Al,
I am very sorry to hear that the Promacta is having to be stopped. I truly appreciate you telling us your experience with it. I hope that perhaps the blast count will come down after the Promacta is stopped and get back into the MDS and not AML range. Then perhaps something else can be tried. Do not give up! Good Luck tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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  #8  
Old Thu Aug 16, 2012, 10:14 PM
Al's Wife Al's Wife is offline
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Thank all of you SO SO much. It's still just sinking in. I've concentrated so hard the last two years and three months on MDS that I'm embarrassed to say, I have no idea where to go now that it's transitioned to AML. I don't even know what induction means. Is that what he had with the Vidaza when he first began with the MDS or something stronger? I've tried to read a little today in-between spending time with him without him knowing how concerned I am. He knows the blasts are up and that he has been taken off the trial but we were both hoping and praying that there was a chance it was from the Promacta. I'm sure that's not the case, but it's probably going to take a day or two to get a grasp on things again.
We see the Emory doctor in the morning as Al absolutely refused to go to the ER tonight even though he was running a fever, coughing, and has had low oxygen level. He said he wasn't going to spend all afternoon in the ER when the doctor was going to see him at 7:00 a.m. And that was his final word! But at least does feel a little better this evening (on the outside anyway) after he and I both had our pity party.
Thanks for your support and your prayers. We really need them right now and I am so thankful for each and every one of you.
I'll let you know our options tomorrow. Any suggestions or info on what do we do next is greatly appreciated, remembering that Al has the bad cytogenetics.
God bless,
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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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  #9  
Old Thu Aug 16, 2012, 10:26 PM
Sally C Sally C is offline
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Dear Linda,
If ok with you I'm going to send your post to NIH and see if there is any other clinical trial they may have to help Al. None of us are going to give up on trying to help Al.
Just remember - God is with you both - and so is all you forums family.
God Bless and so much love and hugs,
Sally
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  #10  
Old Thu Aug 16, 2012, 10:44 PM
Al's Wife Al's Wife is offline
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Oh, Sally, thank you so much. I'm sure after talking with Dr. Khoury in the morning I'll be a little more clear-headed (or maybe not). Still too raw. But I'm going to need all the help I can get to figure out our next step.
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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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  #11  
Old Fri Aug 17, 2012, 03:03 AM
maria&lola maria&lola is offline
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Adding my prayers and will be thinking of you both tomorrow. All the best.
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  #12  
Old Fri Aug 17, 2012, 04:44 AM
Birgitta-A Birgitta-A is offline
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Induction therapy

Dear Linda,
How sad that Al's blast cells have increased! If this depends on Promacta the blast cells will hopefully decrease when the drug is stopped.

Induction chemotherapy means only treatment with drugs aimed at inducing a remission. Many drugs can be used but in MDS they often use Cytarabine. Then there are many trials where they combine different drugs for better effect: http://clinicaltrials.gov/ct2/show/N...cr=Open&rank=5
Kind regards
Birgitta-A
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