Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Hello, I am a 24 year old female currently in remission of AML. I am quite new to this group, and have only posted one other topic, which was about fear of relapse. The responses were very kind and helpful.
I went into remission right after my induction treatment. I finished my first consolidation treatment, and was waiting to be scheduled for my second. Unfortunately, on Wednesday, I received quite unexpected and upsetting news. News that only made my fear of relapse stronger. My doctor did more tests on my cells and found that my form of 10/11 trans-location is a rare, but aggressive one, and that I am at high risk of relapsing in the future. This was a complete blow to me, as I thought I was healthy and on the right track with being cured. I wanted to finish my consolidation and get on with my life. My doctors have suggested the BMT to me before, but I was really not interested, as it seems to post some scary risks in terms of graft host disease.
As of Wednesday, my doctor is really pushing me to have the BMT. The hospital has scheduled appointments for my siblings to have blood work done to see if they are donor matches. My doctor also wants me to meet with a fertility specialist. He has given me about a week and a half to think all of this over. I have been completely beside myself since Wednesday. I have absolutely no idea what to do. I would still rather continue with consolidation, along with changing my diet, and hope that it never comes back. As my doctor tells me, I have less chance of being cured going this route.
If anyone on here can let me know of their experience with BMTs, I would greatly appreciate it. I know it has the better chance of curing me, but I am scared of what goes along with it. I hate that I have to worry about my fertility at age 24, if I do this. Furthermore, I'm scared something will go terribly wrong with my body if I have the BMT. I also know that it will take more time away from me, as the process is longer and I would take awhile to recover from it.
Can anyone give me some success stories from either end? Either with just doing consolidation, or having a BMT. Particularly, people who were told they had high-risk of relapse. I don't think I can make this decision without hearing about others' experiences. Thank you.
I went into remission right after my induction treatment. I finished my first consolidation treatment, and was waiting to be scheduled for my second. Unfortunately, on Wednesday, I received quite unexpected and upsetting news. News that only made my fear of relapse stronger. My doctor did more tests on my cells and found that my form of 10/11 trans-location is a rare, but aggressive one, and that I am at high risk of relapsing in the future. This was a complete blow to me, as I thought I was healthy and on the right track with being cured. I wanted to finish my consolidation and get on with my life. My doctors have suggested the BMT to me before, but I was really not interested, as it seems to post some scary risks in terms of graft host disease.
As of Wednesday, my doctor is really pushing me to have the BMT. The hospital has scheduled appointments for my siblings to have blood work done to see if they are donor matches. My doctor also wants me to meet with a fertility specialist. He has given me about a week and a half to think all of this over. I have been completely beside myself since Wednesday. I have absolutely no idea what to do. I would still rather continue with consolidation, along with changing my diet, and hope that it never comes back. As my doctor tells me, I have less chance of being cured going this route.
If anyone on here can let me know of their experience with BMTs, I would greatly appreciate it. I know it has the better chance of curing me, but I am scared of what goes along with it. I hate that I have to worry about my fertility at age 24, if I do this. Furthermore, I'm scared something will go terribly wrong with my body if I have the BMT. I also know that it will take more time away from me, as the process is longer and I would take awhile to recover from it.
Can anyone give me some success stories from either end? Either with just doing consolidation, or having a BMT. Particularly, people who were told they had high-risk of relapse. I don't think I can make this decision without hearing about others' experiences. Thank you.
My son is "intermediate risk" with FLT3 TKD, which is a controversial mutation - some say it poses no greater risk of relapse than not having it, other studies are not so sure. In any case, it was recommended he have a bmt. The induction chemo he received damaged the ejection fraction ration of his heart and this made the transplant surgeon refuse to proceed at one hospital. A second hospital suggested he could have the transplant but that his risk was about even either way so he could wait and see if he relapsed and then have it. However, he'd have to go through induction again - another risk. The third hospital felt that his best chances of relapse free survival was a transplant and that was his choice; he's due to go in Feb. 4 I would suggest speaking to several doctors who are experts and trying to go with the decision that seems the best for you. There are certainly many people having excellent results with transplant who are on this board and other places. There are chemo-only survivors on the board as well. Most of the chemo-only folk seem to be those with cytogenetics that are favorable (at least on this board) but I hasten to add that I am a relative newcomer. The only piece of real advice I can give is: Get a couple of opinions from experts, keep your options open (get an HLA workup and start looking for a donor in case you need one) and go with the decision that seems right for you.
First of all, I am one of the chemo-only types but my T{8;21} was favorable for this to stay in remission and it was a break even for me -- my onc said it would not give me any advantage, so we decided to just wait and see. If I relapse then it could be considered -- ask your onc about that. I am a 4 year survivor.
In your case I would advise you to either go with what your onc is telling you is best, or else get a second opinion. Just tell your onc that you totally trust her, but have this lingering doubt and that if you get a second opinion you would feel a whole lot better -- she will understand and perhaps even appreciate it because it does take the pressure of her. (Obviously she cannot advise you to get a second opinion or maybe she would.)
Most of the people on this list either had a transplant or are care givers of those who have, so I expect you will get lots of experiences quite quickly. Whatever you decide, don't look back -- move ahead with the assurance that you are going to beat this thing and not let it overwhelm you. With that attitude you will beat it! We are all praying for you -- dave
One factor that I considered is the ability to get the sub type in remission if relapse occurs. That was information that helped me select consultation as well.
The lead doc, Finn Peterson even humored nee by writing the probability of having a favorable subtype, 25%, and once I was diagnosed with inversion 16, what the probability of have a secondary test results that would put me in interim category such at flt3,33%.
I was told if that test was positive a bmt would be the recommended path. My docs told me that 70% need transplant. I have gone the chemo only route with the understanding that if I relapse I will have abmt. I agree that you most put complete trust in your team and that may require researching via second and third opinions.
Please stay with us and let us help you through advice, comenceration, pray and support.
If your cytogenics are such that a transplant is a much better option than chemo, they will recommend transplant unless other things like comorbidities make it too risky. It seems like that's what you're looking at here. When you have a difficult case they like to do transplant in first remission because it's tougher to achieve and sustain a remission the second time. In intermediate cases they'll sometimes try chemo first and reserve a transplant for a relapse. In favorable cases like Dave's they almost never do a transplant first.
So get your second opinion, it's the smart thing to do. And if it comes back with the same recommendation, don't be scared. Many people come through transplant just fine and they are becoming much better at dealing with GvHD. Make sure you get to a good center, a good doctor. You have a lot of good things on your side like your youth and overall good health.
So look at it as an opportunity to cure this disease once and for all and get on with your life. I was able to go back to work 6 months after transplant and even before I worked from home. I've had very manageable GvHD and I know of many people with even less trouble than me. It's very do-able if this is the choice. Good luck.
Lou
The trouble with all of these categorizations of AML based on genetics is that such determinations are relatively new. Nevertheless, doctors are generally cautious when it comes to AML, and if a certain type of mutation is considered aggressive or likely to return, they recommend transplant. I am not familiar with your mutation, but if your doctor recommends transplant for your type of translocation, I would go with it.
I was of intermediate cytogenetics, and had none of the ominous mutations. Unfortunately, I didn't have a favorable mutation either. I was advised to undergo a transplant and received one from an unrelated donor. That was Sept 8, 2011 and I am going on 2.5 years of good health.
I know you are anxious about all of this. Rightly so. Just know that we are all here to help you with the process, and especially to answer any questions you might have. Be optimistic and just put one foot inf front of the other as you march toward good health again.
CLiff
I'm so sorry that you have additional fear with your disease.
I like Lou had the dreaded FLT 3 mutation . My only option was transplant I had a perfect match from my sister and ran with it.
A second opinion was not an option for me as we only have one transplant centre in the country. I am 45 and 17 months post transplant. I have had acute gvhd and now have chronic gvhd it's manageable the ultimate prize is that I'm still in remission.
I was in remission after induction and consolidation would if have stayed there without the transplant? I will never know but my doctor was emphatic that I would not so my complete trust had to be put in her expertise.
Get a second opinion if that would put your mind at rest and make your decision easier but once you make that decision you must put your complete faith in it. I wish you all the best in what's to come. You have so much on your side your youth and good health. I see some beautiful young girls at our transplant centre , their hair is back some have commenced college some returned to work but one thing the all have is good health and they look so happy. It warms my heart at every visit just to watch them talking about music , make up and life.
I come away amazed at the wonders of medicine.
Planxty
I know that for so many people, the BMT is a God-send, and they are more than ready to start the process, but for some reason, it just terrifies me. I think that if the fertility issue was not a concern at all, then I'd be much more likely to have the BMT. However, that's just an added stress right now, having to meet with a fertility specialist, and possibly have eggs removed and frozen. It's all so overwhelming to think about.
Maybe I'll feel different if one of my siblings happens to be a donor match. But, right now, I'm still waiting for them to have their blood-work done, to find out. I know no one can make this decision for me. I just want to know that whichever one I choose, I'm not making a huge mistake, and causing irreparable damage.
Make sure you stay positive and whichever way you decide that you keep the mind free that you have made the right decision.
My mum has a very similar decision to make that you are making. She has managed to get into remission after for induction and has been that way still after 2 consolidations. Basically they have not seen any AML since April last year.
They still however think that a BMT is the best option for mum. '
Doctors said that due to her "type" of AML chances are very high that it will come back. Therefore they say they are not sure if they will get her back into remission a second time if she "waits" to do the BMT.
They also say that having the BMT after the first time you go into remission is good as your body has had less stress on it from only the first rounds of chemo. If it comes back then they may not get her into remission and her body would have to put up with another rounds of chemo to get her into remission,.
She is however 65, they did say that young people are obviously stronger therefore feel that they are strong enough to just see if the BMT is required.
xx
As you say, only you can make this decision. But I wanted to add my experience in case it may be of help. I am one year (and a few days) post transplant. I had aggressive conditioning which included total body irradiation. It was no walk in the park but it was do-able and I have had barely any gvhd, just a slight rash which was managed with steroid cream. I celebrated my "anniversary" by going horse riding, which perhaps will give you a clue as to how well I am now.
Fertility. Yes this is an issue and I cried many tears over this when the doctors told me what the effect of the radiation would be. I was given the option of IVF and was able to take advantage of it so I did the best I could and what will be will be. It is a big deal but make sure you think carefully, there is no point trying to preserve your fertility at the expense of the leukaemia coming back.
When I was in the hospital one of the nurses that I really liked and trusted said to me, "if they say you need a stem cell transplant, do it! It is worth it". It has been my personal experience that this is the truth.
With very best wishes,
L