Hi All

We are going to start another thread for AML survivors, either through chemo or BMT to see how much interests there might be in this topic. Know that Dave has given me some excellent advice, and I am sure we all can exchange good information. Life will never be the same after getting AML, and know we all want to aid others making this new journey. Thoughts?

Thanks for imput.

Ollie

Ollie:

I think it is easy to do -- you can name it AML Survivors Thread. Perhaps in the first post to it be sure to invite anyone who wants to participate, but let everyone know that we would love to get all of the AML survivors on this thread and talking to each other. Also, when someone has "made it" we would love them to stay aboard and help all of us our -- AML or not -- there is lots of advice that all of us who have been through it can give to others on the list, and the more people they get it from the better. Then too -- we need to be helping each other out because who knows when it is coming back? and then there are also all of those residual things (like not having the old stamina, for example) that we survivors still have to cope with. We need to compare notes. Thanks for this GREAT idea -- dave

Hi Ollie and Dave,

I just started on this website. I have to say I loved reading the threads and wish I had seen all this sooner. I have AML M4, a 9/11 trans-location, actually really rare. I am 29. I had a BMT because I had a full related donor. And at my age that was my best option, plus I have a 3 year old daughter. I have to say the overdoing it, really hard not to do. I always know I am going to pay for it the next day. I am not a survivor yet. And having had GVHD, I can understand not wanting to go through that. I will have to look for the new thread. So let me know if you have started a new one and where it is.

Abby

Abby - Thanks for the post and letting us know of your battle with AML and GvHD. I truly believe when making the choice of SCT or Chemo, there is no right or wrong answer. If a few factors were different, I too would have gone with transplant. The important item is not the choice itself, but rather our commitment to make that decision work as you have done. You have my prayers for a rapid and successful recovery and welcome to the survivors club. Please keep in touch as you are now part of our universe.

I have worked on the opening post for the new thread and am still open to suggestions on the title. Any thoughts would be appreciated. How about something simple like "The AML Survivors Club?"

Keep the faith, and God bless,
Ollie

Thanks Ollie,

I like the AML survivors club. it sounds like we might actually know what we are doing here. I don't know about you, but I am still day to day and waiting for my turning point which is day 100, I have 38 days to go, then a biopsy and we see. Then maybe I will think survivor.

Ollie -- Let's go for it -- we will want all survivors to let us know who they are, but we also want comments and questions from people like Abby who are getting close.

I do not know when a person should declare themseoves to be survivors -- I figured I had qualified after my last chemo when my blood numbers got out of the dangerous area and I could then get back to normal as far as not wearhing a mask and things like that were concerned. My WBC and platelets have never gotten back up to what is considered "normal" but we cannot let a little thing like that bother us, can we? So, something like that -- we can let each person make their own declaration. I think it is real important for all of us to keep a monthly count.

Thanks for dreaming this up -- I look forward to your starting the new topic.

Take care -- dave

Abby: Great to have you aboard and writing. And looking forward to you declaring yourself a survivor! It sounds like everything is all lined up. It will be good to have someone represent the transplant point of view -- please tell us more about the GVHD -- I have heard that it was annoying but not too awful bad. If a BMt is the way to go, and it is for some, then I guess it just goes with the turf. We all would like to know just how bad it is, so please let us know. Could be that Ollie and I will face a transplant decision at some point -- bite my tongue -- but I am sure there are others who would love to have your insight. The best of luck with everything -- we will all be praying for you. -- dave

I like AML Survivors Club too! Reading everyone's experiences, good or bad, helps me know my sister is just fairly normal in dealing with the nature of the beast that is Leukemia. As she moves towards transplant, it helps to know what she may face --to read that someone else has been there, done that....and survived! Right now we are working on getting her to the Remission Club. One baby step at a time. Reading everyone's stories and advice has been so very helpful. Go ahead forward with the Survivor's Club. Those who are, or are getting close to that survivor point can only benefit from it. I say go for it! =)

Hey all - just got the word from my Doctor that last bone marrow biopsy is NEGATIVE. Hot damn. Guess that means can join the AML survivors club now. Thanks all for your support.

Ollie

Ollie

That is awesome. YIPEE! Go ahead and do the survivor dance. It can be anything you want. Twirl, shake and bogey, because you have no cancer. Celebrate.

Hi to Everyone -

During the past couple of weeks I have been doing a fair amount of reflective thought over the long strange trip that has occupied my time and those I love since December of 010. From that first impact when my new doctor told me I have AML (what the heck is that?) to last week when she told me my last BMB was negative. The roller coaster ride of emotional feelings from despair to hope, and how these message boards provided information and faith that I would go into remission. The time thinking of the biggest decision of my life to date, to "BMT or Chemo - that is the choice!" Others on this thread, especially Dave, have stuck by me during this period, and as I recovered I have found I have been able to aid others in a similar situation as I was in.

Guess what I am getting at is while some of us are now members of the AML Survivors Club, we will also keep up with this discussion group and will assist anyone who ask for help during their journey. Leukemia is a miserable disease - and often both patients and caregivers need a forum to either ask for help or to provide it to others, and I for one hope this group will continue to provide that aid as it has for me.

Bless all of you - we are with you.

Ollie

Ollie: be sure to check out all new people on the list -- usually they are the ones who are in need of information. I feel like there will be a lot of people we will be able to help, some of whom have not even been diagnosed yet. We are here is they think we can be of help. We all need all the survivors we can get -- everyone brings a little different experience to the group. Take care -- dave

I have replied to this elsewhere -- dave

I will reply. We are all in a battle to either survive Acute Myeloid Leukemia, or are the caregivers of someone having that fight, and we are united with a common goal to help others with that battle. We don't judge fellow travelers on their beliefs, rather respect those beliefs even if they don't represent our personal ones. I am honored to be a part of this group on DailyStrength, appreciate the aid others have provided to myself during my road to remission, and can only hope that in a small way I might also provide that aid to others. This group is filled with love, not negativeness, and there is no place for comments like those stated in reply 43.

God bless all of you, and may your greater power help guide you to health.

Ollie

It looks like the offending post was removed at the discretion of the the web site owners. I think we all appreciate that. -- dave