Andrea,

Thinking of you. Just wanted you to know that.

Cliff

Started the AC220 today.
A long day for me. I am exhausted, but the 15 EKG's all came out normal. Another biopsy was done, ouch. Several blood draws, but so far, so good.
I am optimistic!
Andrea Bozzi

Andrea,

Sure you are optimistic. You should be. That stuff is like gold in your veins. It will make you well. I am already visualizing a gorgeous bone marrow biopsy the next time they stick you. BTW, why did you get so many cardiograms?

I find that I don't dread bone marrow biopsies anymore, at least not the actual physical part. Waiting for the results...well, that's another story, but I was telling the truth when I said that I didn't even call my doctor about the last one and happened to find out when I called her nurse to renew my prescriptions.

Eat well, and as I continuously harp, negotiate with the nurses aids about your vital signs in the middle of the night -- especially since your ward team comes in so early. I found that the thing I craved the most in the hospital was SLEEP. It was also over-air conditioned, so I longed for a nice warm comforter. My wife would have brought one, but there was no way I was going to get various substances on a nice down comforter.

Keep us posted. I don't need to tell you that we love you, but I just did.

Cliff

Cliff you always provide copious feedback. Thanks - I too ALWAYS negotiated with the nurses regarding no vital signs after 11pm. As long as I did not have fever they always agreed and left me to sleep until 5:30am. By the way the # of EKGs are an AC220 protocol requirement and will be repeated more frequently during the first month. Reason being is that some patients have complained about heart palpitations on the higher AC220 doses and the FDA required that they repeat the studies with lower doses. I am very excited for Andrea. This is going to be great. I just had my BMA at one month of using AC220 and my blasts dropped from 85% down to 8%, reflecting only 1% in my blood. My physician was very happy when the results came out today. PTL - I am eagerly awaiting to hear the good news from Andrea!!!!

hi fellow aml FLT3 buddies!!!

Im a newbie to this site. Was diagnosed 30th April this year! Am from across the seas myself but am going through the same as yourselves!!!

Just to give you a bit of background on myself, i was diagnosed after only returning to work 2wks after my maternity leave ended!! Yes I fortunately was blessed with a beautiful daughter last Sept. She was 7 months old when i was diagnosed. She has been my strength through all of this!

I underwent two cycles of chemo before i received a bmt. My sister was my donor! nearly reached the 100 day mark before i got my bad news. blood counts were fluctuating so my doc ordered a bone marrow biopsy. results were not great! 85% marrow was still my sis, but the other 15% was leukaemic cells again!! needless to say we were all devastated. Am now on a drug called "Sorafenib" and will receive a stem cell topup from my sis in a few months!!!

Can i ask is sorafenib what ye are calling AC220?? so far it seems to be working for me, although i am only on it 3 wks! am experiencing some side effects; esp the hand/foot syndrome which is quite painful. would love if someone could give me a few tips???

look forward to hearing from you all x

Hi Gemb,
I am sorry to hear that you relapsed. I did twice, but the Lord provided all the strength I need to endure this journey. I started AC220 a month ago and it's been working great. The medicine name for AC220 is Quizartinib which is different than Sorafenib. AC220 is still a study medication where Sorafenib has been approved by the FDA mainly for the treatment of kidney cancer, however, has also been proven to help with AML/FLT3. On the other hand, AC220 specifically targets FLT3. I was put on Sorafenib before my second BMT and it did bring me to full remission after three cycles. I then had my BMT, however, relapsed again. Accordingly, since I was FLT3 positive, they decided to put me on the AC220 study. As far as side effects, I did have the ones you mentioned while on Sorafenib, however, none on AC220. Hang in there ! they have a lot of good medication for FLT3. You will do just fine. You have all the right numbers = young + related donor. I wish you the best !!!

Andrea,
Thinking of you each day. Stay as positive as you always are. This AC220 appears to be a miracle.
Sending healing wishes your way.
Therese

Andrea and Sami,

Good luck to both of you on AC220. From all accounts, it is the perfect drug to get rid of those blasts. AC220 and sorafenib are not the same thing. However, they are both tyrosine kinase inhibitors. I have learned from my daughter, the medical student, that tyrosine kinases are probably the most important enzymes in the body. They are involved in numerous cascade reactions. So in that way, AC220 and sorafenib are quite similar.

I am excited that you both are getting very appropriate treatment. AC220 is not a guinea pig drug. It has shown itself to have virtually miraculous effects and doesn't have the side effects of sorafenib.

Please keep up all up to date about your progress.

Also, a special shout out goes to Phil.

Cliff

Hi Gemb,
A baby, what a blessing. I am so sorry you have relapsed. I have relapsed two times now waiting for my donor. I started AC220 this week. I have noticed nothing yet.the taste is not bad, I haven't yet noticed side effects, but I also know it can take several days or weeks to have a stale dose in my system before any symptoms appear.
I talked to the research doc yesterday about inhibitors after transplant. Apparently, AC220 is being tested post transplant as well, but the study is taking place in Seattle only. As my time nears, I may have to consider a road trip knowing what we do about AC220.
I have been trying to get back into the swing of things, so forgive me for not paying too close attention. I am so far behind from the storm and not having power that I find the days are going way too fast. I also feel good, so I am doing everything I can and enjoying myself and seeing friends. It is a lot of work being ultra careful though.
So, to all of you......I pray, I hope and I trust God is watching over us. I have never in my life, met a more wonderful, beautiful, group ever.

Be well. Peace, love &hope.
Andrea Bozzi

Gemb -- welcome aboard. You have come to the right place for help. I have never had a relapse, but there are many on this forum who have and they are already helping you. I see Cliff helped with the med question -- he is such a blessing to everyone with his medical knowledge and desire to help. So, please keep us up on things and don't give up. There are lots of alternatives. We are praying for you -- dave

Andrea,

I just have to say that your grit and determination are incredible. That is why AC220 will get you into remission and you will find your Mr. or Ms. Right (Bone marrow match, that is), and sail off over calm seas t o a new life of health and happiness. I am exorcizing the AML from you as I write (you didn't know I could do that, did you?). In all seriousness, I pray for your good health every day, and that is not just an idle claim.

Cliff

Cliff,
I hope I can continue the grit and determination. You make me feel so good about this process every day without fail. Your messages are fantastic.
I am on Day 3 of liquid gold and so far, so good. I feel great. A little sleepy in the afternoon, which is different for me. I don't know if its the medication or the SNOW! Yes, snow in Philly, go figure.

Oh well, I am continuing to pray for all of you. I am following posts. I am hoping for a match. I am hoping for the ULTIMATE cure ! Together, we can do it!

Peace, love and hope,
Andrea

Andrea, It snows in Princeton, NJ as well. I have music on all afternoon. Thinking of you and all our friends. Let's fight this together.

Violet

Violet , thank you !
Therese, thank you !
The idea that so many of you think of me every day, provides additional strength and courage.
I am trying to keep my spirits up. I am not a fan of winter and less a fan of snow.
I want to obliterate this disease. Our efforts and Cliff's ability to exorcize the disease is what we need.

Blessings all!

Andrea

Andrea,

What you need is WHAT YOU'LL GET! Take care of yourself.

Cliff