Tina,

I too am devastated. There are so many trials going on at Sloan Kettering (in NY, where many of us were treated), Fox-Chase (in Philadelphia), MD Anderson (Houston) and University of Washington (Seattle), as well as at the center where jay was treated. Do not give up...the new tyrosine kinase inhibitors have turned the tide for many. He is young. Get him into an aggressive, but promising protocol. If I can help in any way, let me know.

Cliff

Have they talked to you about clinical trials? If you need to do your own research - and I apologize if I am saying things you already know - clinicaltrials.gov has a pretty useable search engine. I am not sure where Jay is but if you don't feel you were given much by your doctor, can you get him to another research hospital fairly quickly? I hate the thought of you having to sit on this until next week, emotionally. I agree that of course you need to do something and am upset that your doctor was not immediately supportive in directing you, but someone will. Keeping you in prayers - extra ones.

Tina -

I don't even know what to say to this. I haven't been able to write much here recently, but I do make sure to read every day and I am always struck by the total devotion and concern you show for your son-in-law. I pray that you will find a promising trial for Jay. I wish you, your daughter, Jay, and all those who love him comfort during this very upsetting time.

Robin

Tina,

Reading your post felt like a punch to the gut. I remember when I had taken my dad to the clinic for his pre-transplant appointment - they gave us all of the information for pre-testing and set him up for a transfusion. We were on our way to a transplant! Then a few minutes later the doctor comes to get me to tell me that his leukemia was back. I don't tell you this to make you upset - I just want you to know that you are not alone and I know how you feel. Please, do not give up. There are trials that show promise. Jay is young - this certainly works in his favor. My thoughts and prayers are with Jay and all of you. Stay strong - all things are possible. Lots of love and hope being sent your way. xo

Tina - my dad is being treated at Dana Farber/Brigham & Women's Hospital in Boston - I just looked to their site to see what is happening for trials there and noticed that there is at least one for refractory AML. No idea whether this or something like it is relevant, but thought it couldn't hurt to pass it along.

http://www.dana-farber.org/Research/Clinical-Trials/Clinical-Trials-Search-Result.aspx?q=Acute%20myeloid

Robin

TIna,

I would be glad to email/ call my contact at Cornell Weil. I know older people who are doing VERY WELL on Plexxicon. Please please let me know. I will do anything to help.

Ed

Tina,
I knowe this is Jay's second transplant. His first was a sibling match and second an unrelated donor.
Were these two transplants done in the same hospital? From what you say, Jay sailed through both transplants
but then he relapsed shortly before the 100 day time frame.
Know this, I believe you are absolutely right, Jay needs more agressive treatment and maybe a more agressive, determined team of doctors.
We know Andrea, and others went into remission again fast with Ac220.
It seems like Jay is young and still strong enough to take another go round. It was wrong for the doctor to leave you all feeling desperate. There is so much hope still for Jay.
Even if it means changing all the plans for the move and Alex's job. To go to the the very best hospital that can treat Jay sucessfully. I encourage you to take the lead with Alex and keep your spirits strong to not take:" no" for an answer. . The right hospital, the right doctors and the right treatment for Jay is available.

I will ask my whole church to pray for Jay, Alex and you.
Keep the faith, It will work out.
Loads of love,
Sandra.
Romans 8:28
.

Tina. Where does Jay and your daughter live? I forgot where Jay has been treated. Is it U of Chicago?

Cliff

Cliff, for some reason I thought they were in NC - Duke, maybe? Hopefully, Tina will be by, or someone who better recalls the details than I do will be by!

Robin

Thank you all for your replies. I knew you would reach out to me and I am so grateful. Jay has been treated here at Duke Medical Center in Durham NC where I live. Alex and Jay have just rented a home in Winston Salem, NC. The transplant doc was the one they saw today. They are to see the primary onc next week. She is much more firey and I think she will help guide us. I plan to do some research this weekend and along with info I have learned from all of you, I will insist that we move forward. This can not be the end of this journey. No way.
Jay definitely had some trials along the way with his treatments but he handled them very well. I KNOW he has the strength to keep fighting. It was just such a shock. Everyone is doing a bit better this evening. Settling in with the news. Those kids are the best. Love them so much.

And all of you.
--Tina

Tina: we are all devastated -- your family is our family and it hurts when any of us have a setback. But that is how it should be viewed ... not as a defeat, just a setback. I do not know the medical knowledge to advise, but would say that if it seems your medical team is going to be aggressive and give it all that they have, then go with them. If not then seek another opinion at a close research hospital (another one affiliated with a major university). If they should get to the end of the line and do not give you any hope, then you know that there are some alternative treatments that have worked. But I would say that should be the last alternative -- after all other alternatives are exhausted. And it seems that there are other alternatives. I know it is hard for you, but please keep us up and let us help as much as we can. We are praying for you and Jay -- dave

Tina, I don't know what to say. of course,I'm terribly sorry to hear this news. I was so hoping this would do the trick for Jay. A young couple like this with their whole life ahead of them should never experience heartbreak like this. Jay is just a few years ahead of my oldest and I can't imagine how I would react to this news. You are a strong woman and I greatly admire you.

The Plexxikon trial is going on at a bunch of places but as far as I can tell the closest to NC would be Johns Hopkins in Baltimore, not exactly a $5.00 cab ride. But Eddie has related great results and it seems like Jay would clearly qualify. And I think they're also doing or have done a trial with AC220, another FLT3 inhibitor. Has anyone suggested a DLI? It seems like a pretty common treatment when one relapses and I have read about many successful outcomes, even after a second relapse.

All hope is not lost. I know you're exhausted and emotionally drained. Get some rest then strap on the gloves and get ready for another round with the beast. I have many clients well connected with the top medical professionals in New York. I'd be happy to make a few phone calls if you think that would help. And I will continue to keep Jay in my prayers. Good luck and God Bless.

Tina,
I am so sorry, devastating is right. I remember the news when I relapsed about 80 days after my transplant. I could not believe it, I felt fine, but my BMB showed a different story. My heart goes out to you, Jay, and family. I have felt the love that surrounds you all through your posts and I know you are all battening down the hatches and pulling together. Praying for healing, peace, comfort and guidance during this difficult time. Psalm 57 has been my comfort this week.
Take Care,
Suzanne

Oh Tina my heart aches for you and Jay. I can't even fathom the despair you are feeling right now. What a heinous decrease aml is but I am convinced Jay can triumph once again. Take all the advice of the vets to pursue more aggressIve treatment of at all possible. God is with you and your family and I a.m. convinced He will see you through.

My family will continue to prayer for your s

Peace and blessing s

Julie

Oh, Tina. This is the "terrorist" part of this disease--just when you least expect it, another enormous speed bump, and this is certainly a tough one. I am sure that being at Duke, you do have access to some great doctors, and almost certainly the oncologist will have some other ideas. Maybe another transplant is not the best option, but all the new drugs are running in trials all over the country, and if Duke is not participating, surely they will recommend where to go. It's awful, disrupting their lives like that, but clearly the job of recovery is not finished, and that has to take top priority. Like everyone, I dread the word "relapse" above all others, but I am also so encouraged to hear the voices of plenty of people who have lived through them to recovery, and Jay just has to be one of those!
My heart goes out to you all.
Shoshone