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MDS Myelodysplastic syndromes

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  #1  
Old Mon Aug 13, 2012, 05:25 PM
Al's Wife Al's Wife is offline
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Location: Jackson, Georgia USA
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Al admitted to hospital

Had the scare of my life yesterday. Al passed out and I couldn't get a response for a few minutes. He was on the floor and gagging and threw up. I called 911 and he was admitted to Emory. So far he has had two units of red blood which were at an all time low of hematocrit 20. The two units have only brought his hematocrit up to 26 so they may need to give him more. We will be here at least another night and when I know something I will post. He is better but was very weak. I did a terrible job of holding it together I'm afraid. I HATE MDS!
Till later,
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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 Mon Aug 13, 2012, 05:29 PM
PattiDean PattiDean is offline
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Location: Clearwater, FL
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Linda, I am so sorry to hear this!!

You are both in our thoughts and prayers!

Don't worry about keeping it together, I didn't do very well when Dean was in the hospital either. I think MDS wears us down both physically and emotionally.

Please keep us posted if you can.

Lots of love and hugs are being sent to you and Al.

God Bless!

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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  #3  
Old Mon Aug 13, 2012, 06:28 PM
milliken2 milliken2 is offline
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Al Is In Our Prayers

Linda;
Al and you are both in our prayers. I am fully aware of where you are - and almost wish the hema/onc would admit Earl to the hospital. He had 2 units of PRBC's and one large bag of platelets on Friday - and when we had his blood draw this AM - his Hgb was already down to 6.3
If this ever happens to you again - turn Al on his left side so that there will be less chance of the emesis (vomit) getting into his lungs and causing more problems. Also - elevate his legs with a couple of bed pillows and warm compress to the forehead. Warm dialates the blood vessels and gets the blood to the brain faster. Of course, if he has a fever, you would want to use a cold compress for better results. but that is only if he has not fainted.
Needless to say, you are both in our thoughts and prayers.

(((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.

Last edited by milliken2 : Mon Aug 13, 2012 at 06:30 PM. Reason: misspelled word
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  #4  
Old Mon Aug 13, 2012, 06:33 PM
Sally C Sally C is offline
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Dear Linda,
All I can say is God Bless you both and you are in my prayers.
Lots of hugs and prayers,
Sally
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  #5  
Old Tue Aug 14, 2012, 04:50 AM
Birgitta-A Birgitta-A is offline
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Location: Stockholm, Sweden
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MDS

Dear Linda,
We all hope that Al - who has been fighting so hard - will manage with supportive treatment! Good that he is in the hospital! Too bad that Promacta still not has been working - maybe the drug needs more time.
Kind regards
Birgitta-A
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  #6  
Old Tue Aug 14, 2012, 05:21 AM
maria&lola maria&lola is offline
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Sorry you're going through this! Hope Al is getting the best possible care and is feeling stronger soon. You're his rock I'm sure, but it's okay to be human...this MDS does a number physically and emotionally! Take care.
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  #7  
Old Tue Aug 14, 2012, 09:27 AM
Anne Yeomans Anne Yeomans is offline
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Location: Lakeworth, Florida
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AL

Sorry to here about Al. You both are in my prayers. Yes this thing has a mind of its own. God Bless.

Anneg
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  #8  
Old Tue Aug 14, 2012, 08:41 PM
wilmasdaughter wilmasdaughter is offline
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Prayers and thoughts

All my prayers are with you. It's difficult and everyone on this forum understands to some degree what you are going through.
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Jil, dtr of Wilma age 90; dx May 2011; MDS refractory cytopenia IPSS Int 1; platelets 35, WBC 3.5 & RBC 3.06
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