thank you everyone for your responses.

I have been able to take notes and questions to ask from all of you and value the time you have taken to let me know your personal story in relation to BMT or chemo only.

Is there a lean in the US for most doctors to recommend the BMT?

Does anyone know where to start to get another doctors opinion ? or would that confuse the matter ?

xx

I'm glad this discussion has helped and I hope my comments have played a part in that regard.

I don't think doctors "push" transplants in all cases but I do think they will strongly suggest one if everything lines up to where it will result in a better outcome. Although they are getting better at it every day, transplants still have a high mortality rate compared to other procedures and the doctors consider this when making their recommendation.

When looking into getting a second opinion I contacted a well known doctor in the New York City medical community who happened to be my client. He made some calls and gave me the name of a doctor at Memorial Sloan Kettering. But I spoke to the medical secretary and the source of my referral didn't seem to matter. They ask that my doctor fax over my charts and test results. They got back to me pretty quickly and basically just confirmed that I had a good plan in place. That's all I wanted to know.

I don't know how the whole insurance thing works internationally. I'm sure they won't talk to you from a U.S. hospital without an insurance card they accept. Although I don't recall them billing my insurance company they did ask for the card. So you will probably need to stick with Australian hospitals. You could probably just look up cancer centers and call them. The internet can be useful for stuff like this.

I hope this all works out for your mom. She is very lucky to have you doing all this work for her. Good luck.

Thanks Lou again!! your comments are valuable to adding questions to our list that we may not have thought about.

The doctor mum has she has felt very comfortable with from the first meeting and said he has all the time in the world to answer every single question and nothing is a problem. My question about the second opinion was I guess to see if they had any other point of views as to "if" it needs to be done.

Some days I wish I had a crystal ball or that this AML was "cut and dry" .... but I guess that would make it boring LMAO

I'm so grateful this topic has come up for discussion.

My husband Sal was diagnosed on May 6, 2013 and is chemo only. He is currently receiving his 4th round of consolidation chemo this week and will be turning 45 on Thursday...Halloween! He has a sole abnormality of Trisomy 8. FLT3 negative. Our hematologist/oncologist told us this is considered to be of intermediate risk in most studies.

The decision to go chemo-only wasn't easy. Both the ONC and the SCT/BMT specialist provided their best estimates of survival and left the decision up to us, as they felt both options had similar outlooks. They told us:
45% chemo only
55-60% BMT but with 10-15% chance of complications.
Basically a wash!

Of course, we hope that his induction chemo along with these four rounds of consolidation chemo will do the trick. Sal has been able to handle his treatments relatively well, and he really wants to avoid SCT if possible. We definitely feel some comfort to know that SCT is an option if chemo proves unsuccessful. He has 3 sisters who were all HLA-tested, and one of them is a 10/10 match.

Thanks for listening. I love all of you on this board.

-Monique

Quick note about a second opinion in the USA when you live outside the US.

I received many many second opinions (well....technically then they're third, fourth, fifth opinions....). I also wanted confirmation that the course of action proposed by my doctors was the correct one. Especially when I was just diagnosed, and later as the dilemma about BMT came up.

I had a relative handle the connection with specialists. And what happened was amazing to me. Some of the top doctors in USA (from Sloan Kettering to Dana Farber and more) to whom we sent emails, replied. With their opinion. In some cases we sent test results, but most of the time an email with the information about me, my medical situation and a question was enough. Nobody ever asked for payment or for insurance. Even as we sent follow-up emails.

Of course, we were super thoughtful and only asked what we needed without bothering them more. And I am talking about at least 4-5 different top specialists (one of them from Europe, the rest from USA).

Hope it helps!

Also, I found that most doctors recommend BMT in most cases, since it's the one procedure that's considered to cure AML. Chemo only works just in specific cases, and even then, most people relapse and end up needing a BMT. My calculations (done after the fact, as I refused to look at statistics) were that with my cytogenetics I have a 60% chance of relapse after chemo, then around 50% (a bit higher I think) chance of cure if I do relapse. So overall it's about 65%-70% chance of cure.

In my case, the fact that I didn't have an available 10/10 match made the decision much easier (technically, not emotionally....)

Abby

Good to see some other chemo-only success storied -- Abby and Vakmom -- perhaps others. I was in the same boat with the onc telling me that there was no significant benefit from a BMT/SCT even though my brother was a 10/10 match. That was good enough for me -- why go thru it, and also there is the escaping the GvHD, so there are a lot of advantages to chemo only. However, I feel like the med folks are leaning more toward the transplants probably because in the last five years this procedure has improved -- well, that goes without saying. I guess those of us who are chemo only feel good about the decision as long as things continue to go our way. I am approaching four years.

I think the overall message here is (1) go with what your med team recommends ... they know what is best and they will have more of a vested interest in you if you "cooperate" -- if you are going to go against their recommendations it might be best to relocate; and (2) once you make the decision, be resolved that it is the best for you and don't look back. If you should do some research -- do it for someone else, not yourself.

We are pulling for you and know you will make the right decision, if you have not already -- dave

Monique and Abby,

Thank you so much for sharing the analyitical aspect of your consolidation decision. It is interesting to me that many have encountered recommendations of BMT. As stated in my earlier post under this topic, my med team is pro consolidation for intermediate (FLT 3 Neg) and favorable patience.

Julie

thanks everyone once again.

I don't want to offend the doctor with the "second" opinion, but I had a discussion with someone whose partner had passed from another cancer (which I understand has completely different treatment) and his comments was make sure you enquiry about everything

He advised that he went down the path the doctors recommended then when that didn't work, he started researching himself then found a different path which they couldn't go down due to the original recommendations.

Thank you for sharing, and giving us ideas on more questions we should be asking :)

xxx

I am wondering if your mum and I have the same Dr as we are from the same city. In Australia our doctors are well up with what is happening all over the world and our Doctors will consult others in other countries if they feel their knowledge in the area is superior. So although I have no issue in getting a second opinion I think you may have to ask if you did get a differing opinion would you be any better off in making this decision?

My situation was borderline and complicated by a previous cancer treatment, BMT was recommended but I thought it was too risky, I relapsed 1months later and I knew then that the goal was to get into remission to get to transplant (they had already had an unrelated donor match). This time I only saw the positives to a transplant. Some might say I should have done it the first time but I tend to think as I was so negative about it that perhaps it would not have worked out to do it at that time. There is no right or wrong decision here but one does have to be made. My doctors were very patient with me and encouraged my questions and to voice my fears. Everyone's BMT journey has been different so it is hard to say how your mum would go. I'd like to say though that our city hospital has a very good BMT unit with very experienced nurses and a Doctors, it is a specialized area and they were great at including the family in the care also.

Nicole

That should say I relapsed 18months later not 1 month

thanks Nicole, yes I would say she has the same doctor at RPH. She says he is very very approachable and didn't rush her when she had all her questions.

I know she is more than happy with the information she is receiving, like you mentioned she just has to decide which way and then just go for it 200% no looking back :)