Andrea:

I missed Cliff's noon shout out, so I am doing it now. I don't usually get on this account until the evening, but got on early today. We are all praying for you and we have the greatest confidence that all will be well. Just keep on keeping on. You are going to win this thing! -- dave

Andrea,
I've been off the grid for a bit and was anxious to get back to follow your posts. You are continuously in my thoughts.

I'm happy you are making progress on the drug, that three teams of docs are on board AND working together, and that a game plan for the haplo is being put in place.

You are going to get to the other side of this ordeal. You will prevail. Our thoughts and prayers are wrapping you in caring arms and will help to carry you through to your complete recovery.

You are wonderful to keep us updated.

Therese

Hi and THANK YOU all! I was out most of today. I left at 9 to get the dog groomed so I could use a gift certificate for housecleaning. Frequently, the girls in these companies take one look at my 105 lb black German shepherd and say, "nope, we can't do this". Then i was off to the Temple Bone Marrow Clinic for look work and a consult.
So, the timeline to haplo is still on. But alas a debate.
There seems to be some issue with a haplo and my friend FLT 3 requiring an inhibitor "post transplant". So here we go. I have two sets of doctors who specialize in FLT3 mutations that have done many haplos and one who does the most haplos (two step) and wants to tweak a protocol for me, but its not been tried. Ughhhhh. I have two groups saying, Bozzi, you can do this and you will be fine and the newest saying well, the next appt to discuss.concerns is the week before transplant, but my nurse will help you........again arghhhhhh. So, here I am. I am praying for my answer, though i think I already know. I am reading every article. I am relying on every physician I know to offer an opinion. Opinions do not sway me, but instead clarify. There are two defined protocols being used at Hopkins which is also being used at Temple/Fox Chase, low GVHD and allows the full use of an inhibitor post transplant. My doc at Penn is also consulting with his guys from Hopkins.. Apparently, I am special.?
Both of my doctors today said, wow, you look great! How do you feel. My answer, "I feel cured" and I forgive you all for making the mistake that I was sick....hahaha. Apparently, I look healthy. I tell them , I FEEL HEALTHY.
So, I have a few days / week to decide what I will do.. I am taking parallel paths. There is a group consultation Monday with the group I have been treating with and they will consult my guy at Penn. Apparently the combo AC220, post transplant inhibitor and GVHD is the main issue.i also had a doc tell me honestly today that they just have not found the magic answer for us yet and that the FLT3 mutation is tricky. I appreciate honestly.
I told them I am not so naive to believe elapse isn't something I need to discuss, but I am taking the route I believe is the route of cure the 1st time. I need to believe in my team most importantly, and then secondly, I need them to believe they can cure me.
Cliff, you know, My family is my rock. I am living. I am cooking Thanksgiving the same as I do every year(just taking my portion first).. I love my life. My goal.......To KEEP on going for another 48 years! Who else would make the stuffing, casseroles, pies or my Italian Christmas Cookies- that you have to feel to know the right consistency?? Right?
So, off to,pray and reflect, then dance my heart out to clear my brain some!

Thal you all for continuing to think of me, pray for me and have airy in me. You have become my family and I annoy tell you how thankful I am.

BTW - has anyone heard from Ollie?

Peace, love and hope to you all.
Andrea

Andrea,
Nothing can stop you! Cooking the dinner, too, huh? You are some kind of amazing woman.

All that energy, drive, and determination will come to bear on your recovery.

Keep going. You're moving in the right direction. We're walking with you.

Therese

Andrea,
I have just got on the boards after coming home from treatment and am doing my shout of prayer for you! Praying that God guides you and posse of awesome physicians in Wisdom and discernment. You amaze me with your stamina. My husband will be cooking Thanksgiving dinner this year, but then he is a trained chef and does all the cooking. I am very blessed. Love that Determination!
Take Care,
Suzanne

Andrea,

You never cease to amaze me. What incredible fortitude and selflessness. You are going to be sailing some unchartered waters, yet your faith in your doctors (and I am impressed by their thoroughness and apparent lack of ego) is beautiful. But what has touched me (yes, I am emotional tonight), is that you asked about Ollie. You are just a beautiful person.

I have to admit that I too think of Ollie and pray for him. What I am hoping is that he is just tired of these threads and is doing something more personally fulfilling. I am not happy to not see his name popping up here and there, but I am going to think positive thoughts that Ollie is sitting at a bar somewhere telling AML stories to a yawning bartender.

Maybe all of this is just too "old hat."

Andrea, in all seriousness, your family should be more than proud to have a matriarch like you. Just amazing.

Be well. Prayers go out in the AM.

Cliff

andrea,
you truely are so amazing and brave about the whole thing!!! I admire your strength and determination. I have every confidence that an attitude like that will help you through your treatment!

I have learned so much in the short time since Ive become a member on this site! So its a Haplo transplant that you are having?? I am on the count down to a T-cell lymphocyte topup from my donor sister in the coming weeks! not sure of a date as yet, will know later this month after a BMB and chimerism test is done.

My prayers will be with you as you face the next part of your journey,

gemma x

Thanks Gemma!
This is the first time I am recognizing your post. I truly believe that so much of this journey lies between the ears. I have so much to live for. My husband and two children are amazing. Funny, little daily things that they torture me over are just funny now. The hi, hon, I am at the market and was wondering...... Or the daughter living on her own asking me 100 questions a day via text. My 16 y/o son usually figures things out, but he too will call to ask how long he should microwave something to heat up. I LOVE IT! And I know they need me......if only for the little things and I want to be here to answer every single question they have.
I long to be able to get back to the beach. My last visit was in early June on a whim. I missed my week that I rented a beachfront. It was the first time I was going to do it and I ended up in ICU and having induction. I want to see and hear the power of the ocean and fall asleep listening to waves as the sun beats down on my face. I have to believe it will happen and I believe further I will be there in June 2013.

Thanks for replying to my post. Are you also a FLT3 AML?

Andrea

Gemma,

May I ask what a T-cell lymphocyte top-up is? Did you get a T-cell depleted transplant?

Cliff

Hi cliff!
T-cell lymphocytes are basically jst one of the types of lymphocytes that we have in our blood. After my FLT3 mutation caused me to relapse after my BMT, my consultant put me on sorafenib tabs, 800mg a day to inhibit the protein. My marrow at de mo is about 85% my sisters so by doing a Topup of jst the lymphocytes which are the ones that specifically attack the leukaemic cells, they hope to initiate a graft vs leukaemia reaction!!!

Hope that answers your question!!!!

Gemma,

Yes it does! Did your marrow ever become 100% donor? Those lymphocytes are feisty little cells and very often do the trick,

Cliff

I actually spoke to my guy a Penn about this t-cell top up today. Obviously, I need to get to the step of transplant first, but this is essentially how is was described.
Here is my update and my decision.

All,
I have, after very serious thought, consideration, prayer and research chosen to go with my Temple/Fox Chase Group for the half match transplant. It will be un,manipulated. the other group just didn't give me the same confidence and could not address FLT3 specifically. They also misled me in terms of a post transplant inhibitor. They said to me they would use it, but told my up at Penn they weren't sure it fit into the protocol and would only consider it. I don't want to get to the gate and reach a finish line and not get the opportunity to walk the track with my trophy.
My current team is waiting for my clinical trial drug to get me into remission and then we go. The timing is undetermined -could be 4 weeks, could be 6. My bone marrow biopsy on December 3 will be the driver. If I am in remission, they do not want to delay, I would prep for transplant. There are slight tweaks being discussed. An example is I will be getting actual bone marrow instead of peripheral blood stem cells, all very technical reasons why, but it makes sense even to me.

The physician at Penn said, so you give up one Christmas at home for 40 more! Interestingly, my spectacular husband routinely says, we are giving up 12 months for 400. Therein was my answer.

So, I will know the timing within weeks. I feel a weight lifted now having made my final decision. I trust my doctors. They will be guided by God and I have complete faith in the medicine I have loved and trusted for my entire life.

Peace, love and hope
Andrea

Hi All,
I was informed today that the AC220 has done an incredible job, so they started planning my T-cell lymphocyte transfusion. They will contact my 100% unrelated donor to find out if he is willing to do it. So far he has been an angel and provided Bone Marrow Transplant the first time around and after my relapse provided Stem Cells (then once I relapsed again, they put me on AC220). Donors are angels sent from heaven. The plan is to keep me on AC220 during and after the T-cell lymphocyte transfusion. They plan to conduct the transfusion in two phases, each approx 4-6 months apart. I was also informed that they are planning a study to start giving AML/FLT3 patients AC220 post a transplant.

Andrea, I saw a friend who had a Haplo Transplant from her sister (50% match). She just made her 150 days post transplant and looked great. Initially she experienced GvHD issues, but she looked fantastic today, full of vigour !!!! I immediately thought of you when I saw her !!! It is going to be great. We should all plan to meet at one of your next 40 Christmases to celebrate victory for all :)

In His Grip,
Sami

Sami,
There is a study for post transplant inhibitor AC220. It is only being done in Seattle.
The T-Cell lymphocyte transfusion. Does this mean no full transplant only T cells? And them now long would they keep you on the AC220?

I am excited for transplant and certainly will throw the biggest party when I have my strength back and can eat normal again. My sisters are my angels. They both were so upset to not be full matches and this is another opportunity in their mind to help save me. Our families often feel helpless is this situation.

So good to hear from you. So far, so good. I have not had even one side effect from AC220 (knocking wooden table near me).

Be well.Andrea

I knocked on my head (wood) for you Andrea. My siblings were also sad when they were not matches, as if it were their fault. What is it about sisters that makes them ANGELS? Mine was an angel through it all.

I am so glad you are tolerating the AC220 well. Now let's just let it do its magic..

Be well,

Cliff