dave,

Who knows when they will take it out. Probably when I am further out, I would guess definitely by a year out. It is annoying, but preferable to the other options.

As long as you are going in weekly and might need a blood or whatever transfusion, then I would keep it. Once things get to be once per quarter, then it won't be necessary -- it is a good milestone to look forward to. Good luck with it. -- dave

Hi all - nothing new, just wanted to keep this thread near the top incase anyone new to the group might be interested in it. Keep the faith.
Ollie

nice to see someone using the thread again. its been awhile. we want to make sure that if people want to continue the discussion or add to it they can or just read it for advice.

I am so glad I found this site. I posted on the surveil one but this is more appropriate. I was diagnosed June 4 with AML. Had my first round of chemo with some complications. Spent 52 days in hospital and was so glad to get home. Unfortunately I started out with 95% blasts and ended with 10%. so I have now finished a RSI diction set of chemo which I was only in hospital for 5 days and am 16 days post chemo.
I am expecting to be under the magic 5% this time and in about two weeks expect to have to start deciding chemo or bmt. I am 62 years old and here in Canada they are reluctant to do bmt if your over 60, but they are indicating they will proceed if I push it.
In reading all these posts for someone new to this it has been very helpful. I am where Ollie was back in April trying to get ready to decide which path to go. I have one sibling and he is totally committed to being a donor for me if it is a match. But quality of life is an important factor for me. Scared to make a final commitment. I really appreciate all the good info. It's not easy to find survivors to confer with. Thanks from Canada

Therenback -- I don't know if I influenced Ollie or not -- he can tell you that. I an a chemo only 20 month survivor of AML (current age 67). I do not want to push you one way or the other, and I would really like to hear from those who have had a BMT or a SCT to jump on here and give us your experience. This expecially if there is someone out there who has had a transplant and is not suffering from graft-vs-host disease (GvHD).

It is good for you to consider all options with your medical team, and perhaps get some other first hand info from those who have been through it like we have. In my case the decision was quite easy since I did not really want to go through (or put my brother thru) a BMT. So when my onc told me that it would not really be buying anything (and that there was a 20% chance I would not make it thru the BMT), well, that made it easy -- it was actually what I was wanting to hear. But every case is different and it is a grave responsibility to influence people one way or the other, so I encourage you to talk it over with your med team, others like Ollie and me, and perhaps some of the medical things that you can read on the Internet that are written for non-med people like us.

PLease keep us up on your progress and you move on through it -- every new person we have on this list is contributing to the total knowlidge of the list -- please join us -- dave

Dave. Thanks for replying. I did read both your and Ollie's earlier discussion back in April and I feel like I am in the same position as Ollie was. My brother is a great guy and I have no hesitation that he would do it for me but like you not sure I would want him to go thru it. He lives in Nova Scotia.
So far I have been concentrating on getting to the remission stage but know I will soon have to make a decision. They have a study going here which they want me to participate in. You sign up then if the sibling is not compatible you go the chemo route but if he is compatible you go the SCT route. You cant pre-check on compatibility.
The GvHT sure is scary part of the decision. What percentage have little or no problem with that and is the risk lower with a related donor. Will have many more questions as time gets close to a meeting with the transplant team.

Therenback -
Your presence on the thread have rekindled the thoughts I went through while making the decision last spring and started this thread. While I can reflect on issues that were part of my decision, it is important to realize that AML is a complex cancer, and every individual is different in their reactions to it. Age plays a major part, as does one's own body to tolerate the abuse of chemo and/or BMT. AML is a deadly form of cancer, especially with those over 60 who tend to get it far more frequently than those under 60. I felt very positive about making it through consolidation and being in remission, then I had a talk with the oncologists who would be overseeing my transplant should I go down that route. He started out by giving me his rule of thirds - of BMT patients, 1/3 would die, 1/3 would have AML return, and 1/3 would survive. 50 to 70 percent would get GvHD to different degrees. Ouch. Then and there I began my research - on the clinical trial they wanted me to enter, on the effects of GvHD, on the other reactions of transplant, and with others at Dana Farber, this board, my primary doctor and finally and most important, my love ones. My primary doctor, whom I have seen for over 30 years, acted more as a friend than a doctor. From the start he stressed my quality of life as a factor that should receive a major percentage of my decision. I questioned my transplant doctor as well as my general oncologist at DF. Finally reached the point where a decision had to be made, time to sh*t or get off the pot. Percentages for me - 15 to 20 percent survival for over a year with chemo, 30 to 35 percent with BMT, BMT has a high risks of GvHD and a six months to a year of severe restrictions to my daily living. With support of those around me, I choose to go with quality of life over length of survival. Amen. Have had a fantastic summer with "good health," no restrictions on life style, and for me, I made the right decision.

Now, that's me. You are in your own lifeboat. Your final decision will depend upon your medical situation, the possibility that your brother will be a good match (would limit to some degree GvHD,) your younger age, your difficulty in getting to remission, and a host of factors too many to list. What this group and people like Dave provided to me was contact with other AMLers, with information to aid my decision, a sounding board for my thoughts with others who have had my walk, and a bunch of strangers who became my friends and supporters. Some, like Dave and myself, chose chemo. Others, like Abby went with BMT, and still others are caregivers. We have all had our lives changed for ever by this disease called AML. We are on your side and you have our support.

God Bless and Keep the Faith,
Ollie

Again thanks Ollie. It is really good to hear from those who are there in the thick of it. I have a little time yet to decide but I can't see spending a year like the last 3 months have been. Everything has revolved around the hospital. I bought a 42 foot motorhome last fall and I have not been able to go out in it all summer. The thought of sitting for another year with the possibility of failure is not appealing. Life to this point has been really good to me. My wife and I have been very active before the disease struck and have enjoyed life as they say to the fullest. A year or two more is just the icing so I don't think I will go the BMT route.
Really appreciate your taking the time to put your thoughts in here.

Therenback -- Please stay on this or the Survivor's list -- we are tracking both of them. Have no doubts or fears ... if it is what you decide and you are good with it in your soul and spirit, then IT IT RIGHT. That is all there is do it. I would hold off and perhaps keep things open as you listen to the doctors and whatever, but when you make that decision, then don't look back. I think Ollie and I are satisfied. If we have a relapse we will face that when we get to it. Who knows -- could be something new in the works by then.

Take are -- dave

Just joined Daily Strength. I am 57 and was diagnosed with AML 20 months ago. I had induction and 2 other chemos. Transplant was not offered at that time as an option since I had a type of AML least likely to relapse (inv16). I relapsed two months later and then transplant was the only alternative offered (chance of relapse was infinitely probable with just induction and more chemo after first relapse). Stem cells were donated by my brother last February. I am dealing with GVHD now but doing reasonably well. My chance of relapse, at time of transplant, was 40%.

When I was firt diagnosed, I met another AML patient. After induction and other chemos, he is still in remission. After visiting the transplant clinic at University of Michigan, and being encouraged to have a transplant, he decided not to do so. He is 60 years old. He does not know what type of AML he has since his oncologist did not do bone marrow biopsy before induction. He was first diagnosed in March2010, a couple of weeks after my diagnosis.

It seems to me that chance of relapse, based on your type of AML. When my AML friend was faced with his decision, I didn't envy him a bit. I feel the same way for you. A difficult decision, for sure. I wish you the very best in whatever decision you make. Seems as though you are bending toward foregoing the transplant?

I'd be more than happy to share anything with anyone about my transplant experience. Am anxious to find out about other people's experiences.

therese my wife was dx with aml with the same inv.16 and neg. flt3 gene she as well was not offered the transplant as they told her the same thing she went thru induction then 3 cycles of consolidation then went thru a clinical trial of decitabine for 6 cycles which she hit remission after her first cycle which was dec.2010 she now has been back to work full time as a paul mitchell hair dresser and just aug.13th went for another bmb and it came back clean she is for sure my 47 yr old super hero

To therenback (hope I got that right)- I went the BMT or SCT root. I had a related donor, my sister. My situation is totally different than Ollie or Dave's though. I am 30 years old, was diagnosed at 29 and I have a 3 year old little girl. I went for what had the greatest chance of long term survival and less chance of relapse. I was told that if I made it through the first year, I have a 60% chance of being cancer free in 5 years. So I took that route. Consolidation chemo wasn't really mentioned once I had a related donor because of my type of aml. I have to say BMT has been hard on me. I did really well at induction, but BMT has kicked my butt. I had a hard time with the chemo before the transplant and I have had a hard time with GVHD and intestinal troubles and reactions to medications. I know that this is my best chance at long term survival, but it has been a tough 5 months so far and not just on me, but on my daughter as well. It is a very difficult decision to make. I talked to my oncologist and transplant doctors a lot before transplant. I would suggest doing the same.
Abby

Therese2- I had a Stem cell transplant from my sister in the end of March. I have to say I have had a really hard time with GVHD. It has given my lots of intestinal troubles plus I had sores all down my intestinal tract from chemo. I was wondering what kind of GVHD you have dealt with (mine has been GVHD of the gut, but now I am having some pain in my finger joints and I know joint pain can be GVHD) if you don't mine sharing.

Abby

Abby -- we sure appreciate your input. I believe things will get better with you over time. Please keep us up on your progress. Let us know if there are any changes.at all. You are a great asset to those who need to know of your experiences. We are praying for you. Take care -- dave