Thank you!

- Ev

Thanks Julie!

I will put up front my phone number for anyone on transplant team who wants to call for info or support. 808 783 6230.

Transplant is tough, but a cure is in the offing. You can do this Tammy and Ev!

Love,
John

Thanks friends!! Not gonna lie, I'm scared to death. I have an unrelated perfect match so that is good. Looks like I'll be admitted end of March. What is the worst part? What do I need to prepare for?

Hi Tammy. I think of you and all the others in the early stages of the transplant process all the time and pray for your successful outcome.

Everybody's transplant experience is different. Many, me included, think that induction is much more difficult than transplant. Perhaps because I had reduced intensity conditioning I found the transplant anticlimatic. I did have unexplained fevers that kept me in the joint about 2 weeks extra but that was nothing compared to induction which very nearly killed me.

You will have emotional outbursts, sometimes you will curse, sometimes you will cry, sometimes you will feel sorry for yourself. When you're discharged it's not uncommon to want to stay. You may feel like you're being cast out. In the hospital you have people looking after you, taking care of you. At home you're on your own. To me the mental part is just as difficult as the physical part.

Lou

Anyone know the risk or odds of relapse after stem cell transplant? My Drs just say "there is a risk until the 3 yr mark" but won't say what that risk is. I'm afraid I'll go through all of this and relapse again.

Tammy,

So sorry for the delay in responding.

Like Lou said, it really depends on each person. What is your conditioning regimen? That certainly has something to do with it and I can only comment on mine, Busulfan/Cytoxan.

First off, you are already a pro. You know what chemo is like. It is no cake walk, but you understand how it can make you feel. You will do fine.

My only advice is simple:
1. Do your mouthcare religiously. Six times a day with one of those at night when you get up to pee. It will help with quality of life so much.

2. Get dressed every morning, even when you don't feel like it. Go about your day as if you are the boss, not AML. It will slow you down, but like I said, you are already a pro at living and dealing with it. I tried with all my might to be up and reading the paper in my clothes when the doctors came in on daily rounds

3. Walk, do your lung exercises and very light weights with stretching as much as you are able. Make it a priority of your to do list. You will have plenty of time. :) Try to stay out of bed.

4. Try not to judge yourself or feel guilty for feeling bad. Guilt, fear and anger, when I indulged them, did me only harm (and still do). But again, if you do find yourself in a rut, don't feel guilty. Just dust off and get back at it.

I took great comfort in God as well as some writings that I first read at Annapolis by James Stockdale. I can send you them electronically or hard copy if you want them. Basically, he realized while getting tortured and starved in Vietnam as a prisoner of war that his control was reduced to the absolute minimum. All he could control was his attitude. He could choose to be happy or mad or sad. Happy was his usual choice. I asked God to help me with that every day I was in there. Seek Him and He will do the same with you.

I have faith in you. We all do and we all know how tough you are, even when you doubt. Use that phone number any time you need a pep talk. I will listen or cheer you on, or both.

John

John, thanks for your encouragement and support!

John,

That may be the best post I have seen here, spot on in every regard.

Tammy,
Karmanos would never go there when it came to statistics either. In a way I'm glad they didn't cause it just doesn't matter. Praying for your cure along with the rest here.

Davej

Today is Day -1. Nausea with this chemo has been a little worse than previous rounds but nothing unbearable.

Ev- good luck and I hope everything goes smoothly tomorrow! Please keep us posted along the way

Ev,

Thinking of you tonight as you head into your new birthday tomorrow. Prayers are coming from all directions for you!

It is a pretty boring, albeit super important day. Keep up that mouth care and stay out of bed as best you can. Holler if you need anything or have questions. All is very fresh in my mind still.

John

Thank you, John and Lea!

I just had a visit with the BMT doctor. He's getting me prepared for what may be a rough time coming, given these are only half-matched cells. But it sounds like for every potential complication there is a remedy, we just have to stay on top of signs of problems as soon as possible so we can act quickly. I'll also be getting a couple of days of high dose cytoxan after the transplant.

My brother is donating now. I'll be getting the stem cells pretty fresh; "all organic, no preservatives" my doctor likes to joke. It turns out my brother is the only available option as a donor. No identical sibling, registry or cord blood match so he is it. A little scary but I am so thankful that we do have this as an option and that haploidentical matches can be donors now where it appears that couldn't be done not too long ago.

Thanks again, everyone, for all the information and kind words!

Happy Re-Birthday Eve!

Hugs

Karen

Did you get them on the 28th Ev? If so we share a bday. I turned 40 in non transplant years on the 28th. Only 139 days in transplant terms :).

Thinking of you

John

Glad you're doing well Ev! I start my chemo April 11 with transplant April 19. We will make it!!