My husband had MDS which transformed into AML. I think the MDS does sometimes make the AML harder to treat. My husband is 74 and is in the hospital right now getting a stem cell transplant. He may not have ever gotten to this step if the MDS stayed the same. He is a very active guy which helps with his prognosis.

Robin: I was DXed with AML and MDS -- the MDS supposedly causing the AML, and since "MDS does not have a cure, then there is no hope." I put that in quotes because four years later I am kind of thinking I am as good as cured ... although to me the C word should not be used to apply to any cancer, especially Leukemia. But anyway, I have done a lot of study on the subject since I figured I could relapse at any time. So here is the summary of if.

MDS is DXed by looking at your blood thru a microscope and seeing it all displasiated (I just made that word up -- but that is what the D in MDS sounds like). It means the shapes are all messed up. The blood cells should look nice and uniform and have their nice standard shapes. But with MDS its really a mess. So, if you have MDS the next step is to see how many blasts you have -- 5% or less is normal. Blasts are immature blood cells that cannot grow up produced by a mutant stem cell that reproduces these baby things that refuse to grow up and at the same time prevent the good cells that are being produced by the non-mutant stem cells any space to live. Result -- you don't feel too good. Your blood is not working right.

OK -- one research onc said he did not like to say that there was any difference between MDS and AML. Technically, I think it is either 25% or 30% -- if your blasts are above that, then you are DXed as AML, and if below that, then you are MDS. So, not much different if on the border. But apparently lots of people are MDS all their lives and never even know it. The have more blasts than they should have, but not enough to really cause them any problems. So, if they are DXed with it they do a wait and see and unless the blasts get up close to the AML category, they just keep watching. This could go on the rest of their lives, and more power to them -- that is better than chemo. But I guess they are always on edge, but they should not be really -- we are all in God's hands.

My onc tells me that I still have MDS -- well, thanks, I really needed that, but if being MDS is what I need to survive, no problem. She does not want to do a BMB because unless blasts start messing with my blood counts, she figures the wait and see approach is still best for me. I had chemo to get rid of the AML -- finished up about four years ago now.

At 70, what can I say? I sure do not need to be DXed with anything right now, so that is all fine with me.

Bottom line -- my blood probably does still look like meatballs heaved at a brick wall, but it's normal for me, so no problem. I am not going to worry about it, and you and your dad should not worry about it either. If he gets thru chemo and is in remission, then the be question is whether to go for a transplant or not. If they recommend it, then go for it. In my case I did not have any transplant and I am still alive after four years. But a lot depends on the AML type. But unless there are complications, most all survive. So not to worry.

Point is, why worry about things you cannot control and which will have no influence on the treatment? The treatment will be the same I am sure whether he is technically MDS or not at this point. So, do what they recommend, get through it, put it behind you both and get on with life.

Oh, but keep checking in here so we can keep track of his success -- we need all of the data points that we can get. So please keep us up on how things progress, and if they should DX him for MDS, please let us know. I do not think it will change either the treatment or the prognosis, but it is great information for us to know. Thanks -- dave

Robin - After Dave's excellent reply, I don't have much to add, I will just offer my personal story.
When I had my first BMB my blasts were at around 15%, so the assumption was that it's MDS. However, my situation deteriorated really fast, and so a BMB just 11 days later showed full blown AML. And here started the dilemma and disagreement between different doctors.

As I was receiving treatment there were basically a few opinions:
1. Those who thought my AML started as MDS. In this case, at my age (I was 42 at diagnosis), the opinion was that I needed a transplant, because otherwise, sooner or later, AML will return

2. Those who thought my AML probably didn't start as MDS, and that the BMB that showed 15% blasts was probably just a matter of timing. That it was taken just as my AML was developing. Fact is that I had no prior history of MDS, and they claim that it's extremely rare for someone to discover they have MDS just a week before it becomes AML. They also said it's rare for MDS to turn into the AML subtype I had.

3. Those who thought it doesn't really matter, and let's take it one step at a time.

My other indicators (normal karyotype, NPM1 mutated, FLT3 negative) put me in a "favorable" category, and therefore the decision was to start with chemo.
Also, I didn't have any 10/10 available match.

One of the (many) doctors I saw and spoke to, suggested a course of action we ended up taking. She said - let's treat it as if it's "de novo" AML (meaning - AML "out of the blue"). Then let's give the marrow a few months to recover from the chemo, and we'll do a BMB then.
As Dave said, if there's MDS, it will show. It doesn't disappear with chemo alone. And if then we find there's MDS, then we strategize about a transplant (since the one 10/10 match that was found would be available by then).

First BMB after I finished all my chemo treatments came back with my bone marrow very dysplastic (as Dave said, distorted). I panicked. Because in my mind, this meant I had MDS.
BUT
What I later learned is that 4 aggressive rounds of chemo can take a toll on the bone marrow and in some people, it takes time to recover.
So about a month later I had another BMB. Now known as, hopefully, the last one EVER. It came out clear. Both for AML and for MDS.

I do think that the decision about what to do if there's MDS depends on many factors. Age, general health and donor availability are probably some of the major ones. Since people can live many years with MDS, unless it evolves into AML, if the decision would be not to have a transplant anyway, I also think, as Dave, that there's little point in knowing.

As far as his fatigue can come from the treatments and can take a very long time to disappear. (and sounds like he's doing really well!)

Also, this reminds me of my mom, who had Non-Hodgkins Lymphoma a few years ago (yeah, we really enjoy spending time in Hematology-Oncology departments....). She was over 70 and received chemo and was told that her subtype of disease eventually returns. This was about 7 years ago. My mom is now 83, and recently had a stent put in her heart artery, cause that's now her health concern. She always jokes about how at her age if the non hodgkins returns in 10 more years, she'll deal with it as it comes...

Abby

Robin,
I have nothing to add, but I can say the walking 3-4 miles is quite an achievement. I am fatigued generally and have body aches and I think the cumulative effect of treatments contribute to the fatigue. I am 49 and my physician yesterday said she thought my last four rounds of chemo post transplant aged me 20 years. I believe she is right, but I also believe I will reverse the effects slowly and be back to walking and handling/training dogs and working within another year. It is hard to accept our weakness and that may be why your dad questions what he may currently have. Sometimes, I think, knowing the demon, helps me fight harder, rather than moving forward unknowingly. (Does that make sense?) I hope the suggestions given previously are some help to you.
Peace,
Andrea

Thank you all so much for your very thoughtful and detailed responses to my question about MDS. It helps enormously to read the variety of experience that is shared here - it is so helpful that this community is as diverse as it is, both in terms of the participation by caregivers and patients alike, and also in terms where everybody is by way of treatment. Dave, your situation is probably closest to my dad's (another Dave!), both because of your age and because he is not inclined to do SCT. Kat, I hope that SCT goes well for your husband - very exciting that you and he are moving forward and ever closer to putting AML behind you! Abby and Andrea, thank you as always, for being so generous in sharing not just your practical knowledge, but your tremendously positive approach to all of this.

Best wishes to everybody, wherever you are in this particular journey.

Robin

(69 year old father, diagnosed in Jan '13 - in remission since induction in February '13 - chemo only, normal cytogenics)

Interesting topic - I have many questions regarding the whole MDS/AML thing. My dad was diagnosed with AML in May of 2012. The doctor said it appears that he had MDS prior because of how low his counts were. Thing is, he had just had routine blood work done a few months prior, and everything was completely normal. So, if the doctor is correct, it appears that my dad developed MDS that transformed into AML within just a few weeks. Talk about terrible timing. If only he would've gotten his blood drawn a little bit later... Anyway, I don't mean to go off on a tangent here. To respond to your post, MDS can go either way. It can either turn to AML or not. According to the doctor, there are lots of people walking around with MDS who don't know it and will never have to worry about it because it won't turn in to anything. I guess it's all luck. Wishing you and your dad the best! Take good care.

Robin,
Great question and thank you all for your sharing your experience. It was helpful, I have wondered about MDS too, and if I had it before AML. My MD always said no, but now I understand a little more about it.

Dave~ Love the word "displasiated"!

Yea Zann -- I could not think of the real word -- Zkat nailed it -- so I just invented something that sounded like it. So its dysplastic -- in other words, messed up.

The doctors need to be real definitive in what they are doing so that we will trust their competence and have faith in them. I am not complaining about that. But folks, we all know that this is a big crap shoot. I appreciate all of your experiences and I hope we will get more. But one thing I think we see -- don't take your diagnosis too awfully seriously. The doctors can always be wrong, and a lot of times they are. They have come a long way in the past decade and it is amazing what they have done -- perhaps few of us would still be around with the practices 20 years ago. So, yes, let's be super thankful that God has given them this ability. But they are still humans and they still make mistakes. And this whole MDS/AML thing is much more of an art than a science (as it chemo and transplants). They do it because it works -- most of the time. They do not understand just WHY it works. But that's OK, and it is true of all phases of medicine. But they do the best they can and that is all we should expect. -- dave

For Robin and anyone else searching for more facts.

So good of you to be concerned about your Dad. Yes, roughly 1/3 of MDS patients eventually evolve to ALM. But the majority do not. The diagnosis matters very much since if it is MDS there are many types of it, all kinds of variations. A number of meds to improve well being and delay progression are available. So have to know exactly what's going on to treat your Dad. You must go to an expert tat a major center such as Cleveland Clinic in Ohio to get a definitive dx.

I want your Dad to know MDS is not all doom and gloom, the person I know who has MDS is dong well after 14 years!

AAMDS.org has great patient and caregiver educational materials and expert presented webinars. There are intros, how to diagnosis, some on treatment options. Sometimes patients/families may submit questions ahead of time and the doctor will answer. There's also ones on coping, stress reduction, many more on how theses diseases affect us such as financial and insurance.

They have educational and support patient and family regional conferences several times a year.
AAMDS has Communities of Hope for MDS is some states or you could begin one.

Thank you everyone for both asking questions and offering your story, situation and advice. I may have early MDS but it seems to have developed suddenly. Going for another opinion and probably another bmb in a couple of months. So I'm here learning. I know quite about the disease I've had for 17 years, PNH, but time to start as a newbie re MDS now. This site has some great patients and input.

Please let's keep this website support group going, faily active. So many including me need it!

My 33 year old son was diagnosed with AML and MDS at the same time in March 2014 with NPM1 mutated and flt3 negative. Standard induction brought him into remission followed by 4 consolidation treatments and SCT with an unrelated do nor on August 28th.

He is doing well and his 90 day bmb came back 99% donor cells and no mutations.

Karen

Karen -- GREAT NEWS -- hopefully things will continue to progress -- we will be praying for you and your family.

Robin -- any update on your dad? Time goes by. Hopefully he is no longer worried about MDS -- I know that I am not. His energy level seems to be more than mine -- I am not sure I could walk 3-4 miles -- recently I have had a bronchitus thing that keeps me from doing too much -- should clear up in another week or so. I think he has the right idea -- if there is something to be concerned about, that's one thing, but otherwise just enjoy life. As for no known cure -- we all probably have some things like that that just have not been discovered yet. Is he being treated for AML? and how is that coming along?

Thanks -- dave