Aussimum,
My husband was diagnosed with AML in early March 2013. He had induction followed by two rounds of consolidation. He has been in remission since March. He had a bone marrow transplant in early August. There was never a question as to whether or not to have a transplant due to his genetics. He is 68 years old and to this day, he has weathered everything fairly well.

Myra

This is a tough decision indeed. My advice is "second opinion". I mean contact as many oncs familiar with the disease and BMT as you can dig out. If for nothing else, than to put your mind at ease. I had second thoughts about BMT. Talked to 3 oncs and all recommended BMT and explained to me why. There is always plenty of unknown, but some dangers mentioned were: likeliness of relapse in my case, a possible difficulty to achieve remission afterwards, possible complications with transplant after the relapse. Caveat always mentioned was that their advice was based on their own experience. It would have been better for me if I was able to talk to an onc with experience in more successes with chemo only treatments. I still was not 100% sure about my decision to go with BMT afterwards as I did have inkling that it will not go as smoothly as the chemo treatment up till then. I was right about that. From this experience comes my second advice, once you make your decision, IT IS THE CORRECT DECISION no matter how it works out, do not second or third guess it. That makes everything much, much harder.
I had almost no problem with induction and consolidation. I felt great afterwards, my BCC was good, had my hair back along with appetite, even my strength was coming back. I felt as good as before AML diagnoses. Naturally I was reluctant to go thru BMT. My onc was OK with what ever decision I'd make. There was no pushing towards the treatment, just a recommendation. I decided to trust his judgement.

cheers
Boris

thank you Myra and Boris, its always good to have actual peoples stories to read and know that it is a difficult decision :)

Hi. Glad mom is doing well. Everybody, myself included, hopes chemo only will do the trick. But sometimes it's just not realistic. For me there really was no choice since I had FLT3. With chemo only it was almost certain I would relapse. A BMT was my only real hope for long term survival. Chromosome 7 problems are typically high risk also, although it appears that the treatment may have solved that problem. I don't know how that works but that's what you seem to be implying.

It sounds like the doctors want to reserve a BMT for relapse. It seems like they're getting everything lined up and will be ready to go if she relapses. You don't mention if they have given you a recommendation. If not, ask them. How likely is it that she relapses. Is there an advantage to doing a BMT now or is it the same if you wait to see if she relapses. Will it be harder to get her back into remission if she relapses. Will she be able to undergo the conditioning if we wait. I don't know if you've asked these questions but they need to be asked and answered before making this decision. And I agree with Boris, get a second opinion. They can do it from documents and charts, they don't even need to examine her.

Good luck with this. It's an important decision and deserves all the attention and time you're giving it. Take care and let us know how things go.

I am biased -- you probably should not listen to anything I say. My brother was a perfect match, but I did not want to put him thru it, and I was not overjoyed at the prospect myself. Its no fun, although it can be endured (they tell me). My onc told me that it was a break even -- it would not increase my chances of long-term survival. So, I thought, why do it? Basically that was what he was saying. I am now going on four years of survival after chemo only, so I feel that I made the right decision. If I relapse there is the possibility of a BMT or SCT, but at age 70 ... well, why worry about something that may never happen -- I will cross that bridge when I get to it, but it is good to know that the transplant option is open to me. I am not recommending anything -- just telling my story. If the type of AML your Mum has requires a transplant to increase the survival chances, then by all means. But don't feel like it is a necessity. There are several on this forum who are chemo-only, although it seems to me that the majority have either had a transplant or are getting one. My feeling is that the medical community seems to be leaning in that direction more and more. I am sure they know something more than I know on the subject, and I really feel like it is best to go with whatever your medical team recommends. They should have no problem with your getting a second opinion -- it does nothing but help them is assuring that their recommendation is correct.

Agreed with Boris -- once the decision is made, that is the RIGHT decision ... never look back regardless. -- dave

thanks everyone.... we are very logical people, therefore we are asking a million questions I think so that we find the most logical answer.

Mum has already said she would make the decision only ... however we have all been asking the questions and finding out more information. Once she makes the decision we will all be 200% behind her either way.

We have never listening to the % stats during the original chemo and have tried to ignore it this time.

They have said that they prefer to do the BMT whilst in remission, as like Lou indicated, they said it may be hard to get into remission the second time (they said that it would be hard the first time) and also to do it when strong. Not that they are trying to sway either way

they are however going to book everything ready to go for end of January. Just so they can check with the potential donor etc etc.

thanks for everyones comments :)

Just my opinion.

I wish I had gone to BMT right away. I would be almost 18 months out now (if all went well) and I would have been much healthier going in. I had a wonderful 8 months, as Boris said, feeling myself again, and I know I won't feel myself for at least a year now after transplant, but if I was a patient at Sloan and not my first hospital I am sure they would have recommended BMT for me. In fact they said they would have sent me after one consolidation.

On the flip side. I was able (with bad genetics) to reach remission three times after relapse. So anything is possible.

This is just personal experience. Means nothing to your Mom's case. Getting different opinions and giving her all the facts is all you can do. The fact she has a 12/12 is fantastic "back up' as they say if anything were to happen. So glad she is feeling well right now.

Aussiemum,

My medical team was once part of the Huntsman Cancer center in Utah. Huntsman's philosphy was whne possible, send all AML paitience to BMT. My med team leads (Dr. Finn Peterson and Clyde Ford) have over 70 years of Adult AML research/expereince between them. They beleive that there is a subset of AML patience, that based on favorable cytogenics-Inverse 16 (what I had) 18:21 (what Dave had) could be cured with consolidation only. In fact, they idnetified a 70% probability with my cytogenics. Based on this philispphy difference, they parted ways with Huntsman and moved to LDS hopspitol where they have 35ish beds that are dedicated to Adult AML paitience. Sad to say they are almost always full. Patience travel from all over the Intermountain west to be treated by them.

The team has never discussed BMT with me other than to say if I relapse, Inverse 16 is very easy to get into remission and BMT is plan B.

For medium risk AML patience if not FLT3, they allow them to also go chemo only and use BMT as plan B.

I'm praying the the good Lord helps your Mum with this decision and guides her medical team through His devine intervention.

Prayers of Peace,

Julie

I totally know what you are talking about. One of the hardest things with AML is to go into brutal treatments when one is feeling fine and is in remission.
This was the case for me as I went to my consolidation treatments, and one of the reasons it was so difficult, psychologically. Knowing I am feeling fine, I am in remission, and I am knowingly putting myself in a situation where I will feel miserable, have side effects, put my life in danger and physically feel bad for a few weeks (and BMT is ever more so than consolidation chemo).

Yet, I also knew that I am willing to go through it (not that anyone left me a choice...), because I'd do anything to (try to) prevent relapse. So I personally was willing to go with the most aggressive treatments. I asked if I can do 4 consolidations, as they do in USA (I am in Israel, they use the European protocol of 3 consolidations). They ended up saying no, and I also got very sick on my 3rd consolidation, so the decision was pretty much set...
I also wanted to get a BMT, although I am a relatively low risk category (FLT3 negative, normal cytogenetics, NPM1 mutated). I ended up not having an available good match, so that was also decided for me.
As I am not at my two-year mark, my doctor recently told me that sometimes sheer fate/luck, or what looks like something very negative (not having a 10/10 match, for example), can turn out to have positive consequences. So....who knows....Had I relapsed quickly, the conclusion would have been very different...

So these are all tough decisions and questions, and as everyone else said, any decision is absolutely the right one.

Good luck
Abby

Like Abby my husband had the npm1 mutation and no flt3-itd. While he had lots of 10/10 matches in the national registry -those West Virginia roots :) he had no sibling match. The docs said the risks of an unrelated BMT would not outweigh the benefits so chemo only was their recommendation. At the end of his treatments they did another BMB which showed no residual disease (no mutated cells were found) so it looks like the chemo did what it is suppose to do. Maybe you can ask the docs how residual disease after treatments affects your mom's prognosis. Our prognosis went from 50% chase of relapse down to a 30% chance after no minimal residual disease was found after his last BMB (but my husband hates stats). Best of luck!

Vakamom -- There are not too many chemo only's on this forum -- I would guess maybe five. My feeling is that the med teams are leaning more toward transplants. I heard on one of the utube videos that the ONLY cure for MDS was vidaza and then a transplant (both required). Well, I do not know that we should even use the word cure, and when we hear it we should be quite skeptical. Another thread emphasizes that "everyone is different." AMEN to that, and I say whatever works for you. I am convinced that if your med team really things something is best, it is better to go with what they say (even if it might be wrong) because it is only human for them to be much more committed to something that they believe in rather than something else that is being imposed on them. So, if you need to get a second opinion, but when all is said and done and the decision is made, feel GOOD about it. It is all going to work out well. That has been the case for the vast majority of those on the forum. -- dave

Dave,
My husband was the only aml patient in our oncology ward who was chemo only, everyone else was told they needed a BMT-whether they had a match or not. My husband had a lot of matches and was told the recommendation was chemo only. We put our trust in their knowledge. They did tell us if some minimal residual disease was found after the last consolidation treatment a BMT could be back on the table or more chemo. We had already decided to do whatever the docs recommended (we did get a second opinion and that doc -a BMT specialist at the NIH- agreed with our doctors recommendation for chemo only.
:) Julie

Julie,

Did your husband have many bmb during consolidation or did the wait after the final. My counts take so long, I get another bmb before the beginning of the next consolidation. Just curious of others experience.

Julie

Hi, Aussiemum -

It sounds like you and your family are approaching this decision in a really thoughtful way. I once read a piece where an oncology nurse compared the choice of whether to do SCT to that of the decision of whether to stay in the burning building or to make the terrifying leap to "safety." As everyone in this community is aware, real risks attend both choices, so it is no wonder that we find ourselves so anxious as to which path is the "right" one.

My 69 year old father was diagnosed with AML in January of 2013. He is FLT3 negative, did (but no longer does?) present with NPM1 mutation, otherwise, cytogenics normal, I think. He was going to have SCT, but in the midst of the conditioning chemo, suffered a bowel obstruction - derailed the SCT altogether. He spent the next three months recovering from the chemo, and is only recently seeing those numbers move in the right direction. He hasn't needed blood/product since August 24. He remains in remission.

I'm not sure that he'd reconsider another attempt at SCT (though he does have a 10/10 match available). His outlook is probably closest to our Dave's here, in the sense that if in his case his chances aren't markedly better with SCT than without, he'd just as soon not do it. I'm sure he'd have a different view of this if he were a much younger man, or if he and my mom were still in the throes of raising their kids, etc. It is such a tough thing to weigh all of these options, isn't it? I wish you and your mom all the best as you puzzle over next steps.

Robin

Julie,
My husband had BMBs before induction,also 14 days and 30 days after the start of induction. He did not have another until all 4 consolidations were complete and his blood counts returned (but the counts weren't up to normal levels yet-they told us that could take months to occur). He just had blood work done 2 weeks ago and his platelets have jumped up again-so they are still climbing 10 months since his last chemo.
:) Julie