Sami,

Thanks for that wonderful post to Andrea. I am glad that she will get a chance to get things under control until the perfect donor comes along. Your words of encouragement are just so a propos.

Cliff

GO ANDREA!!

I just got word from my amazing husband that the entire DVHL - Delaware Valley Hockey League (my son has played for years and my husband has been a board member) , have engaged in our fight for life. The word is being spread and some of the high school hockey leagues are also engaging. My heart is warmed. I love our extended hockey family. I am humbled that they are spreading the word and our need for donors. My theory, if you tell someone, and they tell someone.........

Andrea Bozzi

Absolutely Andrea.

That is the only way. Then just pepper in some love and support and you are half-way home.

Cliff

I cannot even speak. I was accepted into the clinical trial program. They detected enough blasts. I start Monday. I am so happy. My bridge to transplant! Now, matchmaker, matchmaker find me a match!

Andrea B.

That's so good to hear Andrea!! Little wins until the big win comes!!! Also that is great to hear about getting the word out about donors, if you have a local or community newspaper maybe they could do a story to promote donation also. I know my friends, my husband's work and the school community felt helpless and wanted to know what to do, I already had a match donor (in my home state how lucky is that?!) so our local blood bank was inundated with school mums and the like donating blood and some going on the register. It really hits home when they know of someone needing it. We also appealed for blood and marrow donation through Facebook and many others then reposted on their pages also. Your match will come, just waiting for the right time. And all those sportsmen you know - my doc says young men make the best donors - probably because they feel a bit invincible at that age I think!

Enjoy your day xxx

Andrea,

You are ready to get better. I have such good feelings about this drug. Please let us know how it makes you feel. I want you to slide through this. That would be an amazing gift while you wait for the transplant.

"For Papa make him a scholar, for Mama make him rich as a king, for Andrea, well I wouldn't, if you find a match that is better than anything!"

Cliff

"For Papa make him a scholar, for Mama make him rich as a king, for Andrea, well I wouldn't HOLLER, if you find a match that is better than anything!"

Woops,,,,forgot a word

Hi Andrea,
Sorry for the late reply ... I am new to the Daily Strength, so it took me a while to realize you had replied to my post :) Here are my answers to your questions. Have you not had a transplant? >>> :( yes i did. I had two of them (within 6 months) from the same unrelated donor and relapsed in both cases. (But I am still alive and kicking :) - - How long have you been on AC220? 2 weeks? >>> almost 4 weeks. They do a random selection and I got the 60mg vs 30mg. - - When you say blood counts are low, is it worse than chemo? >>> No. In my opinion, it does not compare to Chemo at all. I only needed whole blood once so far and platelets twice. - - What hospital are you treating with? I do not know what MDA stands for. >> MDA stands for MD Anderson Cancer Center in Houston. - - You have no idea how happy I am that you popped on here. I would love to go through this process with this drug with someone that I could share info. >> absolutely, I have been through a lot and ... learned quite a lot. i have a plethora of lessons learned. I will be here for you, and most importantly, will NOT let you give up at all. This journey has been challenging for sure, but a great blessing! www.samilahoud.com

Hi Sami,
Thanks for the info and no worries about a late reply. Any reply is fantastic.
I was accepted and will get my first dose Monday. My research doc at The University of Pennsylvania called me last night and when I told him about you, his reply was, " yeah, I am not surprised how well he is doing, this drug is great." He has been working on AC220 since his days at John Hopkins 10 years ago, and has continued the research here at Penn.
The one thing he told me was to NOT go to transplant until the blasts are at 0, otherwise I am certain to relapse. My match has not yet been found, so I also have a consult next week at Jefferson University Hospital for a myeloablative haploidentical transplant. The person I am meeting is also a lead investigator for that particular transplant.
MD Anderson Cooper in Houston, huh. Well, I have family in Sugarland and in Stafford. I enjoy Houston and generally head down that way every few years for a visit.
I will let you know how things start to roll as I begin treatment next week. In the Iinterim, thank you so much for joining this group. You appear to have been through it and maintain positivity - I love that.
Be well. Peace, love and hope,
Andrea Bozzi

Andrea,
I'm thrilled beyond belief to read all of your good news. Onward and upward! Smiling tears of happiness for you.

Sami,
Welcome to the site and it is very informative to have your case shared here, especially since you and Andrea share so much in comon. Always so encouraging to follow along and see the postiive results.

Therese

Andrea,

That is great that you are in the trial. Yeah moving forward. I didn't know you we're at Penn. my sister is a doctor at CHOP in Philly and does research at U Penn. When I was diagnosed she called the head of the leukemia at U Penn and asked about the doctors at Mass General. The doctors at U Penn assured her that my doctors were great, otherwise she would have made me do my treatments in Philly. Also, I get down to Philly often, was there in June. Such good news. I am smiling as I know you are in great hands.

Abby

Andrea, I am so excited that you "qualified" for AC220. This is great news!!! We met a lot of people that did not qualify and were devastated. The first month you will have to conduct a bunch of EKGs and blood tests to make sure you are hanging in there. It's all a piece of cake. The medicine is in liquid form, similar to water, provided in seperate mini-bottles, and has to stay in the fridge, away from light (they will give you all the info). I have had no side effects to complain about. A very mild diarrhea - a blessing - keeps me regular :) and once in a blue moon, a very mild heart burn or slight headache. Really nothing worth mentioning. I can easily stay on this med for years if I have to and love it. I would like to share my overall lessons learned with you at some point, will probably do it in a seperate note. Until then, I would like to share this from my heart ... do not look at this journey as a dark and sad one. Enjoy it. Most people tend to live life driving the "easy" highway, not having the opportunity to experience life to its fullest. You have an opportunity to live both sides of life (the nice and the challenging). Grab that opportunity. To taste happiness without tasking sadness, does not make much sense. My late Aunt used to say, he who does not fall, will never truly grow up. You have an opportunity to taste life from both ends while letting your family, friends and blog followers experience it with you. I have people following my blog from all over the world at this stage. North America, Europe, Middle East, Asia, etc ... I am amazed how much they were impacted by it and got them thinking about life. Enjoy this ride. After all, we only pass through this life once. I would not exchange my journey for anything. My wife, kids, mother, sisters, relatives and friends are all stronger now and have a new appreciation of life because of my journey. I have made a ton of new friends through my blog and MDA, some are struggling with Leukemia and thus were able to bond like family. I could not ask for more. So, with that said, I am truly excited for you !!!! Stay strong Andrea !!! This is going to be an exceptional journey!!!! Again, I am very excited for you !!!- - Sami

Andrea, Great to know everything is moving forward smoothly. You are so courageous and full of life. you should be very proud of yourself. You are in my daily pray.

Sami, Thank you for joining this group. You brought so much light and life to us. You are so strong and positive - I pray for your recovery from this disease soon. I also have FLT3 mutation. Right now my condition is stable, I am 4 months post transplant.

Violet

Everyone, thanks for the information. I just got back from the clinic and I did get a flu shot, apparently as long as I am not doing chemo, I can have it. Interesting.

Sami - wow great perspective and I will absorb as much as I can. I have learned so much along the way. I cannot explain why I was chosen for this journey, but in the words of one wiser than me, "why not me?" I wish sometimes I could help others understand. My husband worries incessantly.

Abby, I am currently working with TEMPLE Bone Marrow Transplant in cooperation with Fox Chase Cancer Center. I am working with Penn for the clinical trial and I have a consult with Jeff for the haplo if it comes to that. I feel like I am in great hands.. My docs are all very honest with me and I appreciate their candidness. They know I am. It to win it.

Violet, I long to be post transplant. Thank you for your vote of confidence.

AND my PICC was pulled today. I have great veins so I asked for it to be pulled to reduce any other risk for infection or complication. I can get a real, REAL shower tomorrow!

Andrea