Abby2
Welcome. :-) You have come to a place like that is like an extended family. We all help each other to learn and grow and give support in any way we can. This is a fight that can be won. Statistics aren't everything. They are numbers and our family's motto has always been, regardless of how bad the numbers seem, that someone is on the winning % and it could be us.

There are several people on here who have gone both routes- chemo alone or transplant. I have not met anyone on here or outside of the board who did their own cells though. This may be because those I know were too sick at the time to give their own cells. I know there is a fear when they take your own that they could grab some blasts in the process. My dad had 88% blasts when he began induction, so they weren't interested in any of his stem cells..lol.

With that said, I do know of two cases personally who have had more than 1 transplant. One was a gentleman in his very early 30s- he was on his 3rd. Unfortunately I am not sure how the 3rd one went. The second is a woman in her 60s. She had 2. She did relapse about 1 yr after her second but they then tried a ditch chemo on her and as far as I know she is still in remission 2 years later. I do know that they say if you relapse after a transplant that it can be harder to treat, but that doesn't mean impossible. These two have clearly had more than one and at least for the one case- it was positive. People can relapse after chemo too. If you choose the chemo route, I think you'd still be eligible for transplant later if a relapse occurred. Check with your team. However the answer to can anyone be cured from chemo alone is yes. Some people are. Also- even if there isn't a 10/10 match now, there could be in a week, a month, a year as new donors come onto the list all the time. I have heard of someone getting a 6/10 match transplant before as he was out of options. It was long from ideal, but they did it and I believe he is still around. You are young and in otherwise good health and it sounds like you have a strong spirit to fight. People can be cured and always remember- one of the people can certainly be you. You have to believe that through everything.

What subtype do you have? Are you currently in CR1? I see that there was some confusion after induction. I am sure others will chime in here. We are all here for you. Fire away :-)
I will keep you in my prayers.

All my best,
Heather

Hi, Abby2,
Glad you've joined the group. Sorry you have AML!

I had chemo and consolidation treatments, relapsed, and then went through induction and one consolidation treatment while my siblings were being tested for a match. I got a match with my brother and had transplant in Feb 2011. My initial induction and consolidation were intended to be my "cure," not a stall until relapse. So chemo alone can work for some, especially for those with "good chromosomes"!

Sorry I'm not clear about a couple of things. Are you officially in remission? Has a search for a stem cell donor begun in the national banks? Not sure about the connection between an MUD and pre-transplant chemo: has it been suggested that your body wouldn't handle the pre-transplant chemo? Again, sorry I'm a bit muddled.

Don't have anything to contribute about autologous stem cell transplants.

How did you hold up during induction and consolidation?

Keep us posted.
Therese

Heather and Therese,

Thanks for your reply. Heather - it sounds like the cases you know of more than one transplant aren't great ones...
I did talk to one woman who had autologous transplant and is doing fine 10+ years later. Which is very encouraging. But it's only one story...
There's so little statistics about roughly my age and my subtype...

I think I have M4, but not sure. I do know my chromosomes are ok (normal karyotype), flt 3 negative, and NPM1 mutated. I'm called "favorable prognosis". But there's a doubt if my AML started as AML or if it rapidly progressed from MDS. and some doctors say they only care about the chromosomes.

I am "officially" in CR1, although looking at the same bone marrow aspiration, different doctors counted different numbers of blasts...between "very very few" to more than 5%. But since the senior ones agreed I'm in CR1, I am treated as if it's the case.

Therese - yes, the search is on...my siblings aren't a match, and there seems to be no 10/10 match for me in the banks. Apparently I have 2 of the 10 allels (is this how you write it?) that are quite, or very, rare. It's amazing to me how in 16 million people there's not even one 10/10....
There are very few 9/10, but the mismatch isn't very good. Since I am still not a candidate for transplant, because of my "good" chromosomes (like you, Therese), I have hope that either I wil never need a transplant and will be cured with chemo alone
Or that a better match will show up

There's also cord blood (anyone knows someone transplanted with cord blood?)
And they may collect my own stem cells after the next chemo round to have just in case...

That is, unless I go with the autologous transplant now

I had induction and one round of HiDAC consolidation so far. Few side effects so far (nausea and really bad dry cornea)

Therese - I wasn't told I won't handle the pre-transplant chemo. I am relatively young and was totally healthy before AML, and so far my body is handling chemo well. I hope this continues...

Is it realistic to think a cure is possible without transplant?

Thanks!!
Abby2

Abby 2,

Hi my mother has AML M4 She had a transplant Jan. 2011 her brother 10/10 match. She did not have favorable chromosomes so she had no option but to have a transplant or survival was only 10 percent without one. she had induction and then 2 consolidation chemos she was in remission 14 days after induction and ( praise God) has stayed there.

I know of 3 people who had auto _ transplants 2 yrs later 2 relapsed and have had MUD transplants since then . The 3rd has been in remission for 5yrs. As for Cord blood I met 2 young people ( 23 and 26 ) who had a cord blood transplants. the young girls (ALL ) outcome was not favorable and she passed in 2 months. The young man ( AML ) relapsed after one year. Still trying to get him back into remission. These are the only 2 cord blood I have heard of. I dont want to sound neg. just sharing the info i have come across .

I hope this info is helpful. Also if you are on facebook there is a BMT page that is a wealth of information.

Lucia

Hi Abby 2,

This is Abby 1. So I had a transplant in March 2011. I was diagnosed in January. I have M5 with a 9/11 translocation, very rare and not favorable or unfavorable. We debated transplant verses consolidation chemo. My subtype there is little research about and most people do consolidation. I handled induction well and then we found out that I had a sibling match for a transplant. I am only 30, 29 at the time, so we decided on transplant as a best bet for a long term cure. If I had not had a match, I would have done consolidation chemo and then prayed not to relapse and if I had relapsed then I would have had to do a non-related donor. I was lucky to not have to make that decision, and I am told that if I relapse we can do another transplant with my sister's stem cells.

I have heard of people recovering and getting to the 5 year cure with consolidation alone. The statistics for me with consolidation only was 40%. We had one person on here who did consolidation chemo only and her blood looks great and she is over a year out and the doctors think the leukemia is gone at least for now. There are also Dave and Ollie who can tell you more about choosing chemo over transplant. They are both knowledgeable about it and both in remission.

I do know someone who was diagnosed, went through consolidation chemo and relapsed in 18 months. She had no sibling match and could not find a registry match. She had a cord blood transplant in mid March. She is doing relatively well. She is fully engrafted and the little cells are working. She has definitely had some set backs, but things are pretty much on track.

The major thing with transplant is GVHD. But from what I have seen GVHD happens with related and non-related donors equally and with the same severity, even if they try to tell you differently.

I don't know anyone who had an autologous BMT for AML. I have met someone who had it for something else and their recovery was very easy. No GVHD worry.

So thats a lot of conflicting info. I think that if the docs think that consolidation is best bet for now, then do that. And don't think of it as a stall method, but as a viable cure. It really is for some people. Then if you relapse, there are other options. Sit down with the docs and go over everything. Its important to have as much info as possible and also ask for opinions.

In the mean time, welcome. Any questions, anything we can do for you just ask. we have created a pretty incredible community here and you are welcome to become a part of it and share in some communal support.

Abby 1

Hi Abby and welcome to the group here. While you're in the middle of decision making, I just want to throw out there that I met someone this weekend who is a 10-year AML survivor--chemo only. She was such an inspiration! So yes, people can really be cured with chemo alone.

Since you're siblings are not a match (I was not for my sister), go ahead and get them to start searching the donor registry for a MUD. They found one for my sister within a few weeks. I think it's a 10/10 match. The registry is worth a shot.

I also know a patient who did chemo, then after relapse did a cord blood transplant because there wasn't a MUD available. He just past his 100-day post-transplant mark and is doing great! Just throwing in the cord blood transplant because it is an option too.

There are many options. There are survivors among every option out there, otherwise it wouldn't be an option if it didn't work. Research what is available, talk to your team, get second or third opinions, and go with your gut.

We'll be praying for you!
--Gloria

Thanks for all your replies and stories. It's great to have found this place!

I am just starting my round 2 of consolidation later today. I hope to pass it without complications.
I decided to go the "standard" way that was recommended, namely try to achieve a cure with chemo alone, and keep the transplant option in case of relapse.

A doctor told me yesterday that the vast majority of relapses with AML happen within 1-2 years, so it's both scary but also comforting to know that in the best case scenario of no relapse for 2 years - that's mostly it!

Abby2

Ah, lost another one to the chemo only route. Just kidding. Glad that you made a decision that you feel comfortable with. It sounds like a good plan and as long as you are happy with the plan then go for it. Praying for an easy time with consolidation and no relapse. Remember to fight hard and don't look over your shoulder all the time, thinking, oh no is the AML back. You will know if it comes back, which won't happen, and you will know how to deal with it. I learned very early on with this disease to only worry about those things you could control and let go of those things you can't control. So keep us updated, Abby2. Let us know how you are kicking AML butt.

Abby 1

Yes, Abby1, you lost me to chemo :)
I hope to be on the good side of statistics this time...

Donor transplant isn't a good option for me now, if I had a sibling match or 10/10, doctors say the choice would've been pretty much a tie with chemo alone.

For now, I'm in round 2 of consolidation. It's no fun to go into treatment feeling really great physically and then to be hit by the cyterabine. Yuck.
I hope it doe what it needs to do to the "bad guys"!

Health to all
Abby2

Abby 2
A little late however welcome. Joined the likes of David and myself on the "chemo" route. I was looking at quality of life over length, and thus far has paid off as approaching my one year mark in remission. Dave doing even better. I have a good match so as you have, figure if I should go into relapse, which I am not planning to, will look at SCT. Believe should I have to make that choice will consider the "research" value I might contribute.

I do wish you the best of luck, and if you haven't to date, time to get on board the "survivor's club." Congrats!! and best for good health.

Ollie

Abby 2- it really does suck that they wait until your numbers are up and you are feeling great and then they kill your cells again and make you feel like crap. Well keep up the fight.

Abby1

Abby 2
Wondering how you are doing. From past posts, looks like you might be getting ready to join us in the Survivor's Club. Had my physical at DF last week and counts still great, so am approaching my one year remission. Am I glad I made the chemo route - yes. Praying I would get 3 or 4 additional months when I made the decision, and now way beyond that. And they have been good quality months. Keep the faith, and let us hear from you.
Ollie

Ollie - thanks for checking in.
I am hospitalized for HiDAC (consolidation chemo) round 2.
I was hospitalized for 23 days for round 1 of consolidation chemo. Then I had a (wonderful!) week at home and a bone marrow aspiration that came out in remission (don't you love that word?...)
It was hard to come back in for another round, I was feeling great, my hemoglobin was at 12, higher than in the last 4 months or more. But I know that it's part of the process... Chemo hit me harder this time (I had the 5 day Ara-C regimen, alternate days, 12 hours apart each of those days), but overall I am feeling fine. Now waiting for my counts to drop.

I feel like there's something to be stressed about at each point in this journey. Now I am a little nervous because my neutrophils are still not at the low point and I worry they might not drop. (hemoglobin and platelets are dropping fast).
I know that this is part of the deal. There's always a potential worry, a wait, and at the same time there's being around and feeling good!

Thanks for your support.
Abby2

Abby2:
How are you doing with the consolidation treatment? Been thinking of you.
Therese

Thanks Therese!

I have gone through 2 of the 3 planned rounds of consolidation so far.
Where I am, they're done as in-patient, I know this isn't always the case. So each round I was hospitalized for a little over 3 weeks, with about 10 of those days being neutropenic (which here means no leaving the room and other limitations). I had 7 days at home between consolidations 1 and 2 and 10 days at home between round 2 and 3.
As a matter of fact, I've gone back into the hospital yesterday for my (hopefully!!!!) last round.

I had a bone marrow test and am waiting for the results, hoping I am still in remission. I guess this is my (and our) reality for the next few years - another bone marrow test, another wait, while hoping that remission is still there...

Physically, each round has been a little tougher. Is this the case for everyone?
I've been getting more nauseous and weak, and it takes longer for the body to recover after. My doctors say it's normal, since with each round, the body is getting hit again with this high dose chemo, and there's little time to recover.

The time at home is amazing. I've learned to cherish every moment with my children, and to appreciate just doing nothing with my family. On the other hand, emotionally it hasn't been easy.
I wonder if it has been similar for others, or how was your emotional journey through all of this.

I feel that since there was zero time between diagnosis and hospitalization (a day in my case), and then there's induction, and donor search, and re-adjustment, and being neutropenic, and then having to make treatment choices, getting second opinions, there was a very busy period of "doing". And for me the real, deep realization that this is life threatening, that there is a very real chance that I won't be around to see my children grow up (sorry for the depressing words...), seeing how the world around me is continuing as normal, and mine is anything but normal, missing work so much, all of this took time to sink in.
I am doing fine, but I do have those moments of crying and sadness. I am optimistic and I do plan to be around and to have AML be a thing of the past, and with that, there's also the realization that things can also go on a different path.

Therese - this was a long answer to your short question :-)

Best case scenario - if I am still in remission and if chemo is enough, I may be back to my (new) normal life in about a month, with close monitoring.
Seeing people on this board who are living in remission from chemo only for long periods of time is very encouraging.

And knowing that if it does return, there are options, like BMT, is great too.

Abby2