My mother is 64 and on Jan 3rd had a Stem cell transplant her brothers cell. She is still recovering but is doing well. Without the transplant her AML had a 95 percent chance of returning, Yes the recovery is 6 month to a year but this was really the only option she had. She does a min. amount of GVHD in her mouth but that is getting better. One of the reason she also choose to go ahead with the transplant is because she said that the chemo's where getting harder to recover from each time. Please feel free to ask me any specific questions.

In your mothers situation, I would do the same without a question, the main differences being a relative as a match which can limit the effects of GvHD coupled with her reactions to chemo. The chances of severe GvH is greater with MUD (Matched Unrelated Donor.) One statistic I wish I could get my hands on would be the number of patients who had a good possibility of a match but went with chemo instead. With a reduced SCT, I have been told I have a 33% of death, and a 33% chance of the AML returning, and 33% chance of making it through with out difficulty. Did your mother have a reduced SCT? I send her my best and with pray for her successful outcome.

Ollied -- my situation is quite different from Lucia's mother. I am 67, but was 66 when the decision was made. My brother was willing to be a donor and was a perfect match. However my onc said that it was a break even -- he felt I would have the same chance of survival either way, and obviously the discomfort and the GVHD issues were just not worth it to me if it was not going to buy me anything. Not only that but he said there was a one in five that I would not make it significantly past the transplant. So we determined to just do the wait and see thing -- that was about 15 months ago and I am feeling great. So, I am a good example of a survivor without transplant.

I was originally diagnosed with AMD and MDS -- it took me about 8 months to get through the chemo -- probably as stiff a set of chemo rounds as they come ... my onc told me about the risks before each round and made sure that my wife and I were both in agreement to move forward with it. I had several close calls.

My complete story is on http://BibleThought.org/ -- click No Visitors Please at the bottom of the home page.

I hope this helps. I would sure not try to push you one way or the other. But I would say that unless there are some definitive advantages in getting the transplant, you might consider just getting one more chemo round and then taking a wait and see approach -- if the leukemia comes back it is my understanding that a transplant is still a possiblity. You might ask the onc about that.

We will be praying that you make the right decision -- dave

Dave - an excellent post and I thank you for it. Exactly the type of discussion I was hoping for as many of us seniors are faced with this decision as advances are made in treatment of AML, both in chemo and SCT. I have had some medical training, both as a Lab Tech in the Army (back in the 60"s) and as a paramedic. During the past month, I have searched the web for articles on reduced transplants, and have found a wealth of information, but nothing on the choice between going with SCT or Chemo, the choice I face.

Your post is perhaps the first I have read where someone in my situation decided to make the choice for quality of life rather then length of survival, the decision I am making. At this time I am being considered for a research project which is centered on the pre-medication for a mini-transplant, and doesn't have a lot of effect on GvHD at the other end. Once I have the third round of consolidation, I will be disqualified for the project but still able to get the general protocol for mini-transplants. Whereas it would be nice to be part of the project and have my medical information be part of the future positive treatment for AML, I am also being a little self centered and am making the decision for what is best for me.

Thanks again for the post, and you can be sure I will read your whole post. I have found that our little circle of AML stricken folks brings out the best in us. God be with you in your travels through life. -- Ollie

My mother did not have a reduced SCT. It is too soon to say whether or not her quality of life will not be the same after a year.

A woman who live in our town had a SCT from a MUD. She looks and feels great. She is 56 and a type 2 diabetic.

When we had our transplant meeting the Dr. told us the percentage of risk depends on your health regardless if the donor was a MUD or a relative. My moms heart liver and kidney's were in great shape even after the chemo. Her mortality percent was 21.The only donation that did not have a huge side effect was one of your own healthy cells.

Do they have a transplant team at the hosp. you are at that you can schedule a meeting? Our meeting was a wealth of information that helped us decide.

I agree with Dave a transplant is not for everyone. Another friend with AML 55 year old Male is choosing the 4 chemo's and that is it. He is happy with his choice.

Praying for you as you walk through this journey.

Ollie and Lucia -- I wish there were more participants in this discussion. It is quite critical to me as there is a good chance that the leukemia will come back and it would be nice if I had some guidance. But Ollie has to make a decision fairly quickly. I am a bit skeptical of a "trial" in that it sounds like they are trying something new -- but perhaps not. Ollie -- I would not be altruistic at this point -- believe me, if you can do what is best for you, it will be best for everyone who has or ever sill have AML.

I do not know the odds or the number of survivors who are chemo-only. My onc seemed to think from the outset that it could work, but some of the other oncs who did rounds seemed to disagree and were pushing me into some type of a transplant.

I know what worked for me, and I plan on staying on this list to keep everyone up on how long it works. I have had 15 months so far and am feeling great. I doubt I would be doing this well with a transplant, but that does not speak at all for the long term.

We need more people to get into this discussion ... not sure how to do that. Perhaps if we do not get more in a day or so we can start another discussion that tries to get more involved. Thanks -- dave

Dave et al,
Couldn't agree with you more Dave. I, too, believe that this subject matter is of vast importance and represents a decision that hundreds are facing today, a number that will only increase as the "war babies" get to the prime age, 68, for AML and as the number of SCTs increases. It is my belief as the "mini-transplants" become more perfected, this will also cause the numbers to increase. In a perfect world we would have a discussion between those facing the choice, and those who have made their choice, what ever that might be. I,for one, will continue to keep an eye out for discussions of this type and give my thoughts no matter what my choice is!

As far as my choice, the April 1st time limit (and should I go with transplant, I can back out at any time up to when it would be medically unsound or a risk to do so) is just for the clinical trial. I plan to meet with the transplant team in a week with a prepared list of questions among which will be:

1. Can I have the normal protocol mini-bmt after the April deadline as long as I still have the health to do so?
2. Will the donor information gathered so far still be available?
3. What has the success rate to date been within Dana Farber for the mini-bmt for one year, two years? What is the one year mortality rate?
4. What advances have they made in the control of GvHD?

Any other questions you all think of will be welcomed. We might be a small group at this time, and I really appreciate the time you both have given to respond to my question and the dialogue we are having.
God bless both of you, Lucia and Dave.

Ollie

Ollie -- I can't give you anything technical, but the reason my onc felt like a "cure" (really no such thing, but he did slip out that word a couple of times) was possible was that I had what is called an 8-21 translocation that was (barely) detected in my BMBiopsy. Leukemia is basically a genetic defect that has taken over our blood. I think the point was that if they can find what the problem then there is a chance that chemo can eliminate all of the bad stuff and when they re-boot your bone marrow they just hope it will come back without the translocation. I never tried to get the technical details -- well, I tried, but it was way over my head -- so I cannot give you technical details -- but that is the general idea of it.

The question would be something like -- What is my AML classification? and for that classification what are the odds for a remission that we can take a chance might last for 5 years or so (that is all they measure anyway).

I do not think you should make a decision until you get your next BMBiopsy, and if it is clean and you are in total remission (blasts = normal, they never =0), then you and your onc can decide whether to go for the BMT/SCT or just do the wait and see thing like I am.

Oh -- a good question I would like to know is -- if you (I) take the wait and see (which I did) and the Leukemia comes back, can we do a quick chemo to get rid of it and then do a transplant? If so, then I would be very tempted to delay is -- for a couple reasons -- you might not ever need it and they are constantly doing research on this and you never can tell what might be available a year from now.

Tell them you are in touch with a chemo-only 15 month AML survivor so it is not like you are dreaming.

Thanks -- dave

PS -- I love that do -- I really hated it when mine grew back ... but I guess we can't flaunt it forever.

Hi All,

Took all advice given, well, most of it and asked my Transplant Doctor via e-mail many of the questions I had. Gather they have a donor, 34 year old female, and that histories have been taken. Further work on SCT on hold until I get BMB, which should be in a couple of weeks as I am recovering well from second consolidation. Should I go with standard protocol will still have same donor, a 10/10 match. So, I have a little more time to ponder the choice.

Also asked my primary cancer Doctor bunch of questions, and did manage to get a little more info. Have MPN1 mutation, generally in youth but I still have. Good item. Also have FLT-3 TKD mutation which isn't good. So the two balance each other out. Thus main negative factor is my age. Oh yes, I have M4.

I gather should I do third round of consolidation and wait it out, when and if leukemia returns, if chemo will put in remission again would be able to get SCT, but of course with the added years, percentages are greater that it won't work.

As mentioned, counts way up so have a couple of days (go to Dana Farber on Mondays and Fridays) off and don't have to return until next Wednesday when I have appointment with my doctor. Will ask about your question Dave. Any other suggestions for questions, please let me know. Time is counting down. I have decided that should I chose a SCT, will go for the clinical trial rather than the standard protocol. So one decision has been made.

Take care all, and keep the faith.

Ollie

Ollie: I would expect the doctors closest to your case will have the best advice. Perhaps I took the easy way out -- I am 15 months after my last treatment and feel like I could hang in for many years and ultimately die of something else. On the other hand, I hear of many whose leukemia as "come back" and that could happen tomorrow. Of course, there is a risk you are taking with any type of a transplant as well, and ultimately you will just have to balance these out.

Please please keep us up on how you are doing -- regardless of what you decide you are providing all of us with valueable information that I do not doubt will save lives in the future. Lucka will be helping people long after I am gone. Take care and God bless -- dave

Dave/Lucia and all,

Well, time came either to cut bait or fish, as we say on the Cape. Saw my primary yesterday, and time had come to have third round of consolidation so decision time on the clinical trial which requires only two rounds. In the end quality of life won out against length of survival. Have a positive mutant factor, balanced by FTL3 so those two balance out. Age is against me - 70. But then I have made it through all rounds of chemo with ease, a positive. Should I have a relapse, which the chances are overwhelming that I will, transplant by normal protocol is always a possibility. Will update picture with more recent one as I look great, for a old man. Feel wonderful also.

I believe the final major factors were two, one being the threat of GvHD. I talked to my social worker after decision, and she told me that some of her patients made it through SCT well, and others wondered if they made the wrong decision with the difficulties presented by cGvHD. Second, my lady would have to carry most of the care providing by herself which would be a strain both on her and on our relationship.

My doctor told me that most patients in my position take the transplant route, and she also confessed that most of those didn't really research the choices or side effects. I have, and my choice is made. Go in next week for last round of chemo, then after a month will be back to normal. Dave, we are in the same boat now so hope we can keep in touch for both information and support.

God bless all of you for your input and support. In the process of making a decision, your communication was like a lighthouse in a storm. I will keep you all updated as to progress. Anyone else reading this thread, if you are facing same decision I was, and if I can be of any assistance, please let me know.

Again, God bless you all.
Ollie

Ollie -- congratulations on your decision, which I would have said regardless of what you decided, since at this point just being confident that you made the right decision and are willing to put it behind you and not worry about it is the most important thing.

I plan to be on this list until the Lord calls me home, but if you want to go with private e-mail we can do that too. I hope you will stay on this list and advise others though. It is a great blessing.

My onc told me there was a 20% chance I would not survive the transplant, and probably a whole lot greater chance that I would have some onbling side effects -- GvHD being the main one I would probably have to live with. He was not trying to make the decision for me, but at that point I think he knew I had already made up my mind. One of the big factors is that my brother (a perfect match) is two years older than I am and I really did not want to put him thru it. He will always be my hero despite how many times he beat me up with we were young because he was willing to go thru it. But when I figured that it really was not going to buy ME anything, the choice became obvious. I emphasize ME at my age (67) -- perhaps US at our ages -- I do not want to sway the thinking of anyone who is younger, might have a different type of AML, might be in better physical health -- there are just a whole lot of factors and it is a VERY personal decision.

Well, I am at 16 months now and counting -- I look forward to talking with you a year and two years from now. Please stay in touch and our prayers will be with you. -- dave

Ollied,

Congrats on your decision! I hope your next round of chemo goes well! As for an update on my mother tomorrow is T+ 100 days since her transplant! She is doing great and her labs are all normal! Praise God. Yes she is still tired but no GVHD and very few meds. Everybody's walk through this journey is different.
Dave , I did want to say it is much much easier on a donor these days than in the past and I would not want anyone who is a donor to be afraid. Yes my Uncle had a slight discomfort but nothing he could not bare and tylenol helped a ton.
lucia

Lucia -- yes, I did not mean to imply that it is a problem for donors. Donors are treated as kings/queens and given the best of care and relief from discomfort. I have never heard of a donor having any problems. I appreciate your comments on this -- dave

Dave/Lucia and all,

Lucia,

Great news about your mom. I love to hear success stories, and extend my prayers to her.

Last question I had for my doctor was if I could write a thank-you note, without identification rather just as someone picked to receive her stem cells, and to thank her for being in the donor pool and how much it has met to me. With everything that has happened the past few months, I have GREAT regard for all in the pool. Dr. said she believed I could have them send such a letter, so in the process of writing it. I wouldn't wish AML on anyone, but boy have I learned a lot about the disease, folks like you both, and most everyone involved either as someone with AML or people around them. Gives great faith in the human race.

Again, god bless your mom Lucia, and to both of you. Dave, I do hope we keep in touch as I can use your faith.

Ollie