AnnHazel:

You have are greatest sympathy for your loss and we hope you will find a group that will provide the support you need. There may be others on this group that can help, but few that are in your exact position.

There are a number of groups that pull together those who have lost loved ones, and in particular lost their husbands to cancer. It is helpful for you to work through this with others and allow them to help you. Here is one that you might try:

http://www.experienceproject.com/groups/Lost-My-Husband-To-Cancer/74423

Others might be found by searching on Google or other search sites something like "Support Group Lost Husband to Cancer"

We invite you to remain with us, and I encourage you to let us know what group you join and the comfort it might bring to you. You have our love and our prayers -- dave

AnnHazel,
I am so sorry to hear about the loss of your husband. AML is acute and very deadly. I do not know why some are struck down so fast, but I do know they had me in treatment immediately. I have a social worker at my Heme/Onc office and she has been wonderful providing information. There may be one at your Heme/Oncs office that could direct you to local support groups online or in person. My heart goes out to you. We are all warriors in this fight against AML, and the future is unknown. Sending love and prayers to you and your family.
Take Care,
Suzanne

I was diagnosed with AML on April 8, 2012 (Easter Sunday. I have done the induction Chemo and 3 consolidations. I have been in remission since the induction. And I am so grateful for that. My last consolidation was the first week of August, 2012. I am still getting blood draws on a weekly basis. And so far my counts have not come up at all. Is there anyone else who has experienced this or is? It is hard sometimes to keep hoping every week for my counts to go up.

Lilypad. I was diagnosed in November 2011. I had the same treatment as you did. I now go for blood tests once a month. I imagine, soon that will be the same for you. As Dave has shared with me, the peace of mind can only come from within. Everytime I get a clear test I breathe a sign of relief. Then when my monthly time comes, I panic again. Hopefully that will subside, but for now I accept the gift of health and the fact that treatment has worked. This is a gift. Feel free to message me if you are ever in need.

Best,
Ed

Lilypad -- I am now a three year survivor of AML with MDS treated by chemo only -- I am now 69. Some of my blood counts have not come back to normal and my onc said that he does not expect that they ever will. At the same time, they are not recommending any remedial action for two reasons. First such action might not even exist but if it does its probably experimental, and second, it really is not affecting my lifestyle any. His main advice was "don't run with scissors" as far as my low platlet count is concerned. Mainly if you are out of the neutropenic range and are able to function normally, I would not worry about them coming all the way back. If you are neutropenic, then of course you are going to have to just be extremely careful until your bone marrow kicks in and starts making some good blood for you. Everyone is different and some people take a lot longer for their bone marrow to recover from the chemo. I do not know of any cases where it did not -- perhaps others will know. The main thing is that you are in remission. -- dave

Hello Ed and Dave,

Your posts are so uplifting for me. Your so right Ed, the peace must come from within. I have been putting myself through hell every week that I go in. Waiting that 20 minutes to get that blood results from the lab. Bone marrow dropping, dropping. This week it inched up a bit. My doc said if it stays there I can live with it. Of course I am also getting weekly neupogen injections for the white cell count. Thank you Dave for sharing with me your experience. My docs believe that my AML came from MDS and are not sure yet if the MDS is completely gone. If not then it will be transplant time. I am trying to not focus on all the negative possibilites that "may" happen. It is also that I will just live with low counts like you. That is very possible too.
Again thank you both. I love hearing you are 3 years in remission, Dave.

Lillypad -- In retrospect I got so much bad news one right after the other than I just expected it. In fact, when the news started getting a tad better, I just did not believe it. So even now, I figure, what do I have to lose -- I have bought me three great years. One day after my last chemo I said -- I have bought me one day. Or, perhaps more accurately, God has given me one day, and now three years. We are all in His hands. Why worry about a relapse when I could have a heart attack tomorrow. Just take it one day at a time and praise and thank God for that one day. Otherwise you will worry so much you will not even be able to enjoy your life even if you live for the next 20 years.

But now if I were waiting for my numbers to come up and they just refused to do it, well, I must admit, that would give me cause to be concerned. But I am thinking that things will turn around for you in about ten days -- start counting now and see if by the 25th of this month things are not looking a whole lot better. Don't expect instant results -- look to the intermediate term -- a week or maybe two. But in the meantime, be VERY careful.

If your docs have a test for MDS and can say that it is even possible for it to be "gone" -- PLEASE ask them about it and let us know. My onc says once yuo have MDS it is there for life. But I am not letting that bother me. First of all, I am not sure they Dxed it right to start with. It would not be the first mistake I caught them at. But hey, they are only human and they saved my life, so I am not complaining. Second, if I have survived three years with MDS, then I can go another three years, maybe ten, maybe even 20. So, maybe I had MDS when I was 17 and never even knew it and it did not get me until I was 65. So, I figure maybe I will have anothrer 48 years or so before it rears its ugly head again.

But seriously, please ask your oncs if it is even possible to get rid of MDS, and if they say no, don't let it bother you. Lots of people have MDS and never even get AML. The major treatment for it is the wait and see -- no treatment at all. That is what I am doing now and loving every minute of it. I would hate to be on heavy meds or have GvHD. But if your med team recommends a transplant, then for sure, I would not go against their advice. Plenty of people -- hey, most of them have had transplants and are handling it quite well. Plenty of advice to be obtained from them. Hang it, things will improve before you know it. -- dave

Good Morning Dave,
Your first paragraph hit it right on the nose. I have been worrying so much about a relapse and what is this MDS stuff they have been talking to me about. It gets so frightful at times. What I have been doing lately is trying to put it in Gods hands and leave it there. No easy feat. Focusing on getting back into treadmill a little more each time. Now up to 15 minutes. Looking more at the positive in my life, like you are doing. My last chemo was the first week of August, five months later my cell counts are still down and I still need neupegen shots. What you said makes a lot of sense. I am finally getting it that one day at a time is all any of us can do. Because you are so right, any person could die in a car accident or have a heart attack. Life is full of surprises. Some not so good.
I see the onc that comes down from Portland to my little small world in rural southern oregon. He is the transplant kahuna from the big city. He discusses MDS with me. They are pretty sure it has been there for years and that is where the AML came from. So now we are waiting to see if they killed my bone marrow enough that it got the MDS also. So far we know nothing. So there is a chance of recovery too. I am going to keep trying to focus on that recovery not the looming transplant. So hard. My little human mind just likes to go the frightful direction.
The MDS will be fianlly detected or not through a bone marrow biopsy. Now aren't those fun! :-(
My onc is saying the only way to deal with MDS is a transplant. There is a medication by transfusion that can control it for a couple of years. But then comes in the big "H" word. Hospice. So they are not being as positive about it as you are. I like what you are saying much better. I would be more than happy to live with it. Certainly do not want a transplant. Only last resort. Then will pull up the big girl britches and do what needs to be done.
I am sure that the MDS has been in my body for a long time. I went to the doc so much, complaining about not feeling well. I would feel just awful at times and no one found anything wrong. Some wanted to put me on antidepressants. The transplant specialist looked back at my past labs and said the MDS has been ther for at least the last three years. So I look back over my medical records through several years and see that the low counts have been there for years. A lot longer than three years. I wasn't a hypercondriac after all.
This is all new to me. And still working through a lot of emotions. But I have to say Dave, you have made better sense and helped more than anyone yet. It is comforting to share with someone that has been there done that.
I am 60, so you being 65 when you went through chemo helps me feel that I am not too old to survive. You have. :-) And enjoying your life.
None of us know when God will take us from this walk on earth.
Lily

Lily -- great words and a great attitude.

If you will you can help me (or anyone reading perhaps can). I have been under the impression from day one that MDS cannot be cured (totally eliminated). I do not consider that to be bad news, and you should not either. I was diagnosed with it 3.5 years ago and am still alive, and I expect to die of something other than AML; so I am not really concerned.

I do think the doctors in the South ought to know the same things as those in the Northwest, however. So I would really like to get to the bottom of this. At my last onc visit 2.5 months ago (my next one is in a couple of weeks), my onc told me that I still had MDS. I asked her how she knew that, and she said that it is not curable -- once you have it you always have it. Well, OK -- I probably have a LOT of other nasthy things too, and who really knows which one of them is going to get me? So it was not that this was some kind of devastaing news.

I am thinking that perhaps at your age and stage of health that what they are saying is that once they get you into remission your best long term chance is with a transplant. I sure cannot argue with that and for sure would never try to talk someone out of doing what their med team recommends.

However, I really want them to level with you -- if MDS cannot be cured, that's fine -- but you need to know. And if it can be that's even better, and I need to know. But from all that I have heard and read once you have it you will always have it, but my case proves that it does not have to cause problems over the short term (in my case over three years).

And then there is always the chance that they did not DX it right to start with ... don't let them deceive you -- the best friend of my son is a hematologist (the profession that reads the bone marrow tea leaves) -- it is far from a perfect science. In my case they sort of eked out that I MIGHT have an 8-21 translocation (whatever that means). But even then they were not perfectly sure. Apparently the T8-21 put me in a lower risk classification, and that got me into an intensive chemo regimen.

But my main point in all of this is -- don't always take what your med team says to the bank. Chances are excellent that they are giving you the only and the best treatment that is available -- no problem there. But do they really understand exactly all that they are doing? Naaaaaaaa. Let's get real -- only God really knows what is going on under the hood.

I will be praying for you and I am just convinced you are going to make it on through. -- dave

All,
A newbie on my unit here. Diangnosed with AML this week, going through induction now. I, for her sake will only ask that we add her to the pray and hope peace list. I passed on our site information and I can only hope s/he will reach out to it for support if only to read out posts before gaining the strength to post.
I still cannot populate with the general population. I am restricted to vampire hours for now, so I cannot meet this beautiful person. My counts went up to WBC=700, hemoglobin 11, platelets 75 ANC 100 - moving on up!!!!!! Soaring!

Always counting on you all for my strength. Peace, love and hope always,
Andrea

Lily:

OK -- let me correct something about MDS. I have leared from some YouTube videos that the Mayo Clinic put out that MDS is curable via a transplant. I confirmed this with some others as well, and I feel like it is reliable. I apologize if I led anyone astray on this.

It seems to me from what I have been able to comprehend that MDS is basically mis-shaped blood cells. The hemos are looking for something and they say: "What's that?????" -- in other words, it ain't looking like what it should. MDS just means that the cells are all mis-shaped. Now this might be terrible if it leads to AML, or it might be something that they should just watch. Or, usually if it is accompanied by symptoms and they feel it could degenerate into AML, then there are some treatments for it. But as far as I have seen the only thing that they go so far as to call a "cure" is a pretty hard set of chemo rounds to kill off just about all of the cells (in order to get all of the bad ones), and then a transplant to re-boot your bone marrow again. I am not sure of an SCT would do it or if a BMT would be required ... I will keep working on it.

Basically the only thing I have read/heard about is pre-AML MDS. I don't think they have enough post AML MDS cases to really do much with. However, that's me ... I am a post AML MDS case because I did not have a transplant. I guess (I will ask my onc in another couple weeks and tell you what she says ... if she does not run me out of her office) ... I guess it is possible that the chemo that I had nailed the bad blood cells, but that is highly unlikely because I still have things that are out of whack. For example, the diameter of my RBCs are twice what they should be, so I would expect that is a symptom of MDS. And remember, the Mayo Clinic onc said it had to be a transplant, which I did not have.

For those who might have just tuned in, read up a post or so and you will see some confusion on my part with regard to MDS. Not that I am concerned. I am past three years of survival, and the survival curves that I have seen level out pretty much at three years. What that tells me is that if you make it three years, your chances of make it five are pretty good. They typically don't measure beyond five.

I will keep looking but I doubt that they would do a BMT just for MDS -- I would think that it would have to turn into AML before they would do that. Is there anyone on this list who has MDS but has not gotten AML? I do not think so. If there is, please let us know.

Again, sorry if I gave any misinformation -- I was just trying to clarify in my mind what I understood from the past. Hopefully this post will help, and I will try to keep learning.

Thanks for all of your inputs -- dave

Dave, I was not aware that MDS is incurable and can be lived with. I have not been formally diagnosed with MDS. But yet they keep bringing it up to me and keep telling me a transplant is not off the table yet. So confusing. My cell counts have been a train wreck for the past 5 months. But I am hearing from you, that it is very common. What concerned the transplant specialist from Portland is past lab tests, showing low counts for years, before AML ever reared its ugly head. So there is a lot of wait and see and confusion and fear on my part. He told me last month that the neupegen shots have to stop soon. Without them my white cell count drops very low. They are very low anyway with the shots. This whole ordeal I have to give up to God and leave it there. Before diagnosis, I was a person that needed to plan out everything. Etc... you know the type. So living day to day like this is maddening.
You and so many others on this site has made a huge differance. just following all your experiences and how you are so bravely making it through so much. But you are making it through.
i am grateful to have found you all.
Lily

Lily -- my understanding is that the Mayo Clinic lecturer did use the word "cure" for MDS but he said that a transplant was necessary and the reason is that they have to try to get all of the bad cells. These cells multiply and produce excess blasts (infant cells that do not mature so they don't do their jobs), and then blasts prevent good cells from existing -- no room for them.

I can imagine that your whole comfort zone has been totally disrupted by having to live a day at a time rather than being able to plan things out. I got to the point where when I woke up in the morning I would just thank God for one more day and get on with it ... whatever it was going to bring. Since we don't have much control over it, its just not worth worrying about it. Sooner or later all humans have to face their mortality -- I figured I had about 65 good years, so I was doing a whole lot better than probably most of the people on this earth. But if God want to give me a few more, hey, I am not complaining.

Back to the MDS thing -- my understanding is that MDS can be treated in a lot of different ways, more coming up every year as time goes on. Once you have AML as we have, and then get into remission the general approach (at least according to my onc) is to just wait and see. If things stay fairly stable you could live out your normal lifespan. I am thinking that the chemo could have even knocked out the MDS, but that would be a long shot.

As for the uncertainty -- if you find an onc who is dead sure and knows it all, I would get me another one. If they tell you there is a lot they don't know, then they are being honest and you can trust them. MDS is merely mis-shaped blood cells. Some people live a normal life with it and never even know it. Others will have some symptoms and their blood tests will show it, but they do not have enough blasts to be considered AML. Normal is less that 5%. I think the MDS range is in the 5-20% or so (maybe 30). Above that the Dx you as having AML. Since MDS has preceded AML, they consider it a precursor. In the mid range there might be symptoms and they might treat it to try to keep it from becoming AML.

But the two of us have already been DXed for AML, so there is no use in being too concerned about treatment for MDS. I have not seen anything on post AML treatment for MDS (other than what I am doing -- wait and see). In your case you are still not getting the counts that you would like to have, but as long as the blasts behave themselves there is no reason you cannot have a fairly normal life. None of us can go back to being 40 ... I just view my ordeal and the chemo damage as part of the aging process.

You seem to be in touch with your oncs quite a bit. I know they tell you to stay off the internet, but if you will google YouTube for MDS and stick to the reliable cancer centers, you can learn a lot and it will take a lot of the mystery out of it.

Let's work through this together. -- dave

Dave,
It is comforting to know you are dealing with the MDS with a wait and see approach. You have a very good attitude towards life. Every day is a blessing. And I am like you, just happy to be alive another day. No guarantees for any of us.
I got my blood draw today and things are looking up a bit. Did a few skips out the door. Not much, but hey I will take what I can get. Was suppose to see my onc from Portland today, but his plane was turned around due to the fog. I was all geared up with my questions in hand. :-(
I was able to gleen a lot of information from the City of Hope web sit. I learned a great deal about MDS. There is more than one kind and different outcomes with each one. I found out that the very first transplant was done at the City of Hope Hospital.

I feel great! So it is hard to listen to this talk of transplant.
I haven't been formally diagnosed with it. But they sure talk about it and possible transplant.
It is comforting to hear you have been through pretty much what I have and you are still standing several years later. That is such great news.
Thank you for walking through this with me.
Lily

Lily -- glad I can be of assistance. I am trying to learn everything I can -- I feel bad I did not start sooner. I had no interest in learning about it while I was in treatment. Not sure why. But I have learned a whole lot just by reading on this forum, and I am trying to learn more. The problem I found was that things were either super superficial or they were so detailed that I could not begin to understand them. That is why this forum is so great -- we all try to put things in terms that people can understand because we have to -- that is the only way we can understand all of it. Please keep us up on how things go. Each of us is an individual and we are all different and things are different it different parts of the country and the world. In some parts of the world there is no hope for a transplant at all.

It may be that your numbers would indicate that your bone marrow is not producing as it should and that a transplant would be your best option. I am not sure about the different effectivenes of a BMT and a SCT -- but it seems like the SCT (stem cell tranplant) would be a whole lot easier from both the donor and the patient. If I were you I could look into all possibilities and then go with with your med team recommends because they know you best and they know what they can do best. The same person might get different treatment in different hospitals, and that is not necessarily bad. It is important that the med team is comfortable in what they are doing, and if they have done it dozens of times before, I would trust that they know what they are doing, as opposed to going into something new and different.

I look forward to hearing from you. Take care and know that I am praying for you -- dave