Andrea,
If you come to Seattle we can give each other high fives, sister! So glad you have been able to start the trial. The hurricane did not slow you down! Keeping you in my thoughts and prayers!

Cliff~ your post made me thing of the Rolling stones " You get what you need!"
Take Care,
Suzanne

Suzanne,

Maybe that phrase will be your mantra as you move through your treatment. Sing it loud, even if others hear you. That's one way to purge yourself of all doubt and anxiety. It worked for me. (My song was "We are the champions" by Queen.

Cliff

Andrea
I'd take those afternoon naps as little recharges as your body is working really hard right now. Picture your body and your new regime fighting and pushing this disease out of existence - it's tiring stuff!
Wishing you good things for this coming week.
Nicole

Andrea, which AC220 dose did they put you on? the 30 or 60mg? Let's exchange notes. I have been on 60mg for almost six weeks now ... I just had my BMA and the blasts dropped from 85% down to 8% (in my BM) and in my blood I am only reflecting 1%. My only side effect is heart burn at night, which is easily cured with a pepsid pill. I am very excited for you !!!! it's going to be great !!!

Hi Sami,
I was preselected for 30mg. It is going great. They did another biopsy right before they started the AC220 last week and apparently the blasts in the marrow showed 78% blasts. A huge change in the two weeks. I was shocked, but am over it now. The blasts in blood was 19, now 17%. BMB in 22 days.
The AC 220 is doing its job, neutrophils at 970, hemoglobin 8.6 and WBC at 1.5, platelets at 67. Everything heading south, but that's good and expected. It IS working. I have to get to transplant. If it's the haplo or my magic number falls from the sky and i get a MUD. I have every doc talking to each other and I don't care if they do or don't like it. I tell them all, my goal survival! It his is now my 4th group of sub-specialists I am being referred to. Truth be told, I adore the guy at PENN doing the trial for AC220. he is perhaps the most amazing physician for me so far (outside Cliff's advice). A complete genius with unbelievable empathy. He replies to my questions immediately. He includes me in emails. He talks to all of the other docs on my behalf (always asks me permission) which is funny, but with HIPPA necessary. Shoot , he can be my voice at this point. The man just knows this disease and I appreciate all he is doing.
So that's it. My spirits are lifting , though my timetable is shrinking. I have to do this so I can just move forward. I want to get in better physical shape though.
I will likely only go two rounds of AC220. His confidence drops for me after two 28 day cycles.
So stay tuned. I am pretty confident the lower dose is going ok for me. Interesting. Stay well. Stay in touch!
Andrea

Andrea,
So happy to hear the treatment is starting to drop those pesky blasts!
I just started induction today, forgot how lousy the medications , chemo, and such make you feel. They are searching the National Registry for a donor now but if one is not found my MD mentioned a double cord transplant. I was curious if they considered this for you as well or if they feel the two step Haplo is a better option. I am so glad all your MD's are communicating even if they do not like it, it is really important. Your MD from PENN sounds awesome, and it is such a relief to be able to trust your providers judgement and that he knows the importance of keeping the lines of communication open between you and your team. Pulling for you!
Take Care,
Suzanne

Andrea,

I am thrilled about your progress. Always thinking of you.

Cliff

Great news Andrea!!!! The fact that the blasts in your blood have dropped from 19% down to 17 in such a short period of time means that you had a much larger drop in your BM! That's great, plus it's all working for you at the lower dose!!! My neutrophils % is 25, Platelets 14, hemoglobin 8.7 and WBC 0.8 - pock me with a fork, I am we'll done :) Question ... What do you mean by you will only be doing two cycles - and his confidence will drop for you after two 28 day cycles?

In His Grip,
Sami

First off, Suzanne, best of luck with induction. I trust you will sail through. It seems you have been in great shape and the healthier we go into these treatments,, the better off we seem to be getting through it.

Sami, thanks for sharing your info. I am concerned about what could/would happen as my numbers drop. Do I then have the same risk for fevers? I know I will need to be careful around people, but I generally am overly cautious anyway. In terms of my doc's confidence in more than two rounds.......he has seen people on this for 7 months, but told be he has also seen resistance to the drug as some headed into cycle 3, so he wants me to get to the lowest level of blasts and then have a transplant, either full Mud or haplo. Having never gone for transplant and now relapsing 2x, they just want me to go for it. It appeared lately, that everyone had a sense of urgency to get me to transplant.

Andrea

Hi Andrea,
My Infectious Disease (ID) doc, has been over me like a hawk since day one (almost 1.5 yrs ago). When I started on AC220, he stepped in and immediately, made sure I got the Flu shot, put me on Valtrex 500 mg daily (pill), Micafungin twice a week (IV - so it won't interfere with AC220) and now, after almost 1.5 months on AC220 added Valtrex 200mg once a day. All through my journey, since day one, I had very low blood #s, however, never had an infection since my ID doc was all over me customizing antiviral and antibiotics as needed. At this stage, I teach the youth on Friday nights, attend Church on Sunday, visit my AML buddies at MDA, go shopping ect ... (while keeping a safe distance from folks), however, no infections whatsover. The key is to have an official ID doc assigned to your case. ID is an optional service in most hospitals and the only way to get it, is to request it, otherwise, your main doc will determine what you need, which I have seen a "lot" of my AML buddies get infections since their docs were not ID experts and thus did not provide optimal solutions. Thanks for sharing your doc's thoughts on resistence. I will ask mine on Friday.

In His Grip,
Sami

Andrea,

Having an ID doctor aware of your case is probably all you will need, because there are standard medications (such as those that Sami enumerated) that most people get as an adjunct to their therapy. I do not remember whether I got prophylactic antibiotics, although I doubt that since antibiotics given before infections only select out the resistant strains. I was given micofungin and then voriconazole because of a fungal pneumonia with my first induction, but all of that is history. Relating to my transplant, I am on Mepron (anti PCP, anti toxoplasmosis) and Acyclovir (anti-viral). I have had one mild cold and a probable viral syndrome with aches in the 14 months since transplant.

I agree with Sami that an ID person is good to have, but, as a physician, I don't really like when patients ask me for specialists, when I know that if I need one to see her, I would ask for one. Most infections that we get in the chemo/radiation/transplant process are from within our bodies (e.g., E. coli, mouth flora) and not from the environment, so it is hard to predict who will and who won't get an infection. When I was waiting for my transplant to engraft, my doctor told me point blank that she expects me to spike a fever. I did and was treated for an organism that turned out to be a generally harmless mouth bacterium.

I am happy that you are on your way to a cure and I would mainly focus on getting out of bed (you don't want a pneumonia) and moving around to keep yourself conditioned. I was always told that taking a shower might be a major exertion for me when my counts were low. I never found that. In fact, that was one of the best times of day.

Be good. My brain is buzzing with good thoughts for you.

Cliff

Ok, well decision made. I am going for the haplo. The timeline is last week of December. My sisters are being sent additional kits for additional work ups as half matches.
I will talk to one of my docs this week about infectious disease control. I am currently taking acyclovir and a hormone to keep me from menstruating heavily. I had a vaginal yeast infection and the preferred treatment was monistat for 6 days opposed to systemic (pill) control.
Thanks to both lCliff and Sami for your information. I am nervous, but I believe this is the right path. They (these three (temple/fox chase/Penn & Jefferson groups)are also discussing my post transplant inhibitors and the effects of GVHD as a result. Interesting. I will update more after tomorrow. More interesting that they are working together on my behalf. Thanks all. Peace.
For now off to get my son from school.
Andrea

Andrea,

What I love about you is your ability to have a life while you are dealing with all of this. You sound like a superMom and I applaud you for that. You will get through this. I promise.

Cliff

Andrea -- Good decision -- now just move forward without worrying about it. You are going to win this one and break new ground for many of us as you do. Thanks so much for keeping us up with everything. You are a pioneer. -- dave

Dave,

This is a propos to nothing! Just wanted to comment that you are a night owl like me.

I think we should all take 1 minute at 12 Noon tomorrow and send out good vibes for Andrea.

I will have already said my prayers, so this will be a second silent "shout out" to a truly brave soul who will conquer her disease like David killed Goliath.

Cliff