Worst news ever

[Al's Wife]

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.

[Sally C]

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

[milliken2]

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

[PattiDean]

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

[Mydad]

Linda I am so sorry to hear. You and Al will be in my prayers.

Hugs and prayers,
Kim

[Greg H]

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

[tytd]

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

[Al's Wife]

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,

[Sally C]

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

[Al's Wife]

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.

[maria&lola]

Adding my prayers and will be thinking of you both tomorrow. All the best.

[Birgitta-A]

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