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.

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

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.

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

Linda I will continually keep you both in my prayers.

Prayers & Hugs

Kim

Linda I am sorry the news wasn't better. I know that feeling so well. I am here for you and if you want you feel free to pm me your number and I will call. if you need me I am here.
Elaine

Linda, sending more prayers to both of you.

Dacogen
 

Dear Linda,
Now we hope that your brave husband will tolerate Dacogen and have a positive response!
Kind regards
Birgitta-A

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

Hi Linda, ditto to what everyone else has said. Good luck on the dacogen. Sending prayers, positive thoughts and wishes to you both.

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

Thinking of you and Al today and keeping you both in our prayers.

Hugs,

Patti and Dean