Hi. It sounds like your mom's treatment is going well and she is responding well to treatment. Chromosome 7 abnormalities do put one in the high risk category as far as everything I've read. That means high risk for relapse after standard chemotherapy. It's not guaranteed she will relapse but the chance is greater than if she had certain other or no chromosome abnormalities.

I don't have any chromosomal abnormalities (normal cytogenics) but I do have a mutation of my FLT3 gene. That puts me also in the high risk category. It was made clear to me that my best chance at a long term remission was a BMT. And I was lucky to have a fully matched sibling as a donor. I verified this with a second opinion from Sloan Kettering and my own research also confirmed this. I knew there were risks in a BMT but I had some things in my favor to improve my odds of a successful BMT like no comorbidities, a sibling donor and relative youth (52 yrs old). So I thought it was worth the risks.

I don't know if it was the right choice. If I relapse after BMT my days are numbered. I'm over 7 months post transplant and feel well, but it comes on so quickly who knows what's cooking inside. True, they say a BMT is more successful in first remission but many people reserve a BMT for treatment after a relapse from chemo.

All I can say is trust your doctor. Get to a good center, one that treats a lot of AML patients and does a lot of BMTs. Ask a million questions. Make them spend as much time as you need with you. Good luck and keep us informed. We're all rooting for you.

thanks Louzac, there are uncertainties with both paths, however whichever path she decides we will carry on living that's for sure.

Glad you are feeling so well after your BMT :) and out and about living.

Next appointment is not until October, so I guess we have a lot of reading to do until then, and making lots of questions

We have all been tested and none of us were a match ( I am guessing as we are not siblings but children. However the first "superficial" sweep of the database has shown 100 potential matches which they have said is a very good sign. They will go back now and check for a perfect match and let us know in October.

It was an easy decision for me since my onc said a transplant would not significantly improve my chances of long term survival ... so we both figured, why do it. My situation was quite different -- I was 66 and DXed with a T(8;21), which I believe to be a much more favorable situation. I would try to be sure that they are not hung up on doing transplants for everyone. I would ask them -- when would you NOT do a transplant, and see what they say. But I totally agree -- you need to trust your med team and work with them totally. You have plenty of time to consider the alternatives -- it might be that waiting to make the decision is better if things are still in a state of change up until them. -- dave

I think I'm a bit unique, I was not able to have a BMB prior to treatment because I was so sick. We never knew my cytogenics in the beginning. It was assumed I was a person who just got AML. I did obtain complete remission, my counts never returned to normal. When we investigated I was found to have MDS. That's when I was sent for my transplant consultation.

I struggled with the decision to have the transplant, I was not sure the risks were worth it. I was having weekly labs taking neupogen twice a week to boost my WBC. During my testing they found 11% blasts, I was out of remission and the decision to have the transplant was taken out of my hands.

I found the information verwhelming and was scared that I would end up in worse shape. I also knew this was the only way I could possibly rid of the disease and get my life back. I'm now around 200 days post transplant and I've done really well.

One thing I learned from this, is that I didn't need to fear the transplant. The fear is AML, it can pop up out of nowhere. Everyday I'm in awe that the miracle of SCT, it's existence and how ones body can take on the new cells to hopefully cure me.

One more thing. The chemo to get me back in remission was very difficult on me, "so many GI issues. They took the option of radiation away and really worried about how well I would do.

It is a big decision to make and I hope you find peace with the decision.

Trish

I like Dave have a favorable subtype-Inverse 16 with a negative FLT3 and C-Kit. I am being treated at LDS hospital in SLC, Ut that has a dedicated floor for adult Acute Leukemia and Lyphomas. Two of the six doctors have over 70 years of Adult Acute Leukemia research-Finn Peterson and Clyde Ford. They parted ways with the very renowned Huntsman cancer center at the Uof U becuase they believed there were a percent of patienct-about 30% who could be cured (yes they use the word cured) by chemo only. They have projected a 70% cure rate for me!

I am only on consolidation treament two with two more to go. I feel amazing but my counts take a VERY long time to recover (71 days vice 30) so they are watching me close. I get more BMB then the norm just to ensure the desease has not returned.

I am a 48 year old female with no comorbidities. I have three young daughters ages 8, 10 and 12 so I am willing to do whatever is required to beat this heinous decease. I consider BMT as my plan B I hope never to need=God wiling.

God Bless you!

Julie

I have posted this comment a few times in the past so apologies for those who have read it before.

About 6 months after my first remission my blood counts dived and although the BMB was clear I was referred for transplant as there was a school of thought that perhaps the AML was still there but not able to be detected. My translocation 9,11 is a moderate risk however my previous treatment for breast cancer makes the risk a bit higher. The transplant Dr recommended transplant but at that time I was feeling well and just getting back to some sort of normal life and the stats didn't give a much better prognosis so I couldn't entertain the thought of going in and risking what might be a healthy self, I could only see the negatives. A year later I relapsed and although I had another induction I nearly didn't make it after getting a fungal pneumonia and having to go to ICU. After 7 weeks in hospital I left with the idea that the chemo was to get into remission so I could go to transplant - I saw only the positives and thought nothing could be as bad as what I just went through. I had a well match unrelated donor and the transplant was not as bad as I thought but there have been some ups and downs since. Some might say I should have had the transplant earlier however I don't think it would have worked because I was quite negative about it until the relapse then I knew that was the goal then. I don't regret it as I have had a good quality of life in the nearly 4 years since being diagnosed. The fear of relapse is there whether you have chemo only or transplant.

It is a very personal decision and there are a lot of factors for your Mum to consider. My doctor told me there is no right or wrong decision as each one has risks. If you have any questions about the BMT (as most likely your Mum would have it at the same hospital as me) feel free to message me.

Nicole

Aussiemum,
I too am one who had no alternative, but transplant if I wanted the 'cure'. I have the FLT3 mutation as well.
Though I did not have a choice necessarily, I can tell you I never looked back on my decision. I placed my trust in my physicians and their God given talent and took the leap of faith that I would be fine.
I will keep you all in prayer so you come to peace with the decision.
Andrea

thank you everyone for taking the time to respond.

Its lovely to hear everyone's journey. Its good to be able to hear the real life against what they put into the paper work to try and digest :)

Thank you Nicole on your offer, will have lots of family discussions next week when I am home

xxx

I was dx with MDS,& was told i had 5years if it converted to AMl,well they were wrong in less than a year i was full blown AML,I had SCT on 3-11-10 from an unreleated donar,he was 1in 7million he was a perfect match ,I was 55 they gave me a 25% chance of a cure,I really had no choice if I wanted to live,I already had 30+ pints of blood, I done very well so far I'm good it's been 3 years and almost 4 months,and I had very little GVHD,had it done at VANDERBILT IN NASHVILLE TENN.