Tina,
Welcome to this site. As you can see, there are many knowledgable and caring people who will offer you not only their insight but their kind and comforting words.

Cliff,
Another medical question, if you don't mind . . . David and I are back in the hospital for his first induction. His C diff cleared up beautifully and he was fit and strong when he arrived here on Monday. In fact, his appetite came roaring back and he gained several pounds last week. That said, we were shocked when the doctor said that he is still testing positive for C diff. even thought he doesn't have diarrhea or fevers. He said that because he is now having chemo treatments, there is no way to distinguish between the C diff and the diarrhea that usually accompanies chemo. He is going to continue him on a longer course of vainco. If this doesn't clear it up, then it's a CT scan. Any insight that you could provide would be appreciated. Thanks, Cliff.

Myra

Myra,

Very puzzling. It is definitely possible to remain a reservoir for C. diff, even when it has been treated. That means that the C. diff is present, but the normal colonic bacteria are keeping the C. diff from taking control. As soon as David gets put on antibiotics (except Vanco and Metronidazole), he runs the risk of having the C. diff come back again symptomatically. So vanco is a good idea. C. diff is never really resistant to vanco.

As far as doing a CT scan on him, all I can say is...What for? If the C. diff takes several courses of treatment to clear up, that does not mean that there is some structural thing that the doctors are missing. They are so free to do scans. Of course, I have had so much radiation that whatever is in the cards is in the cards for me. If David is NOT getting TBI as part of his transplant conditioning, I would stay away from unnecessary scans. I just don't see how a scan is indicated.

Cliff

Hi, all, I'm new to the group, just joined at the invitation of Cliff/xuelan who saw my new post over at ACOR. I'll be 56 next week and was diagnosed with AML in December. I spent 32 days in the hospital for induction in Dec/Jan, getting 7 + 3 plus a bit more. I'm in remission now and have been through two rounds of consolidation with high-dose ara-c. I've been told I won't need BMT unless I relapse. I have the NPM-1 marker which is a good thing but of course there are never any guarantees. For the most part I feel okay, just tired a lot.

Steve

Hi Steve and welcome to our fantastic group! I have been a member since last summer. I was diagnosed June 22 with AML with all of the bad markers (the worst is my flt3). I had to have a transplant. I did not have a match, so notepad had a haplo (half match transplant). I am now 100+ days post and doing good.
Many people on this forum have been chemo only. Everyone is a little different. I can assure you, you will get a lot of advice and someone here can always answer a question.
As for being tired, it stinks. I am tired of being tired. I try to walk, but the fatigue gets ridiculous -I wish I had a remedy. Keep in mind, that chemo messes with your whole body, and it will take all of you to recover. So rest when you need it. I find some days are worse than others. I wish I had a magical solution!
Peace,
Andrea

Welcome Steve. You couldn't have come to a better place than this site. You will find answers and support from so many different wonderful people here. I am so glad that you are doing well at this time. I, personally, am not sick but I came here for support as I live through this terrible journey with a dear member of my family. He has had a BMT and hopefully will soon get a chance to get another one since he has relapsed. I have found this to be a most comforting place filled with hope and possibilities.

Please feel free to share as much as you would like here and ask any questions that you may have.

--Tina

Steve,

So glad you joined our group. I, myself, have been so appreciative of the opinions, worries, stories, and just plain LOVE so effortlessly exchanged on this site. My sister told me about it initially, and, as I have said frequently, I wish I had known about it when I was going through all of the torture (which it is, let's face it!). You should do soooooooo well with those cytogenetics and will jump over Team Transplant 2013 to Team Survivor. There is a great deal of collective wisdom here....if anything has happened to anyone in the course of treatment, SOMEONE here will have some good advice. The most important thing is a positive outlook. I was only 2 years older than you when I got my wonderful diagnosis, and here I am 20 months post-transplant and able to complain like the best of them. Complaining is good, especially here. So is trumpeting good news when it comes. We want to hear how you are recovering. Just keep exercising despite the fatigue. It will help you so much in the long run. And, to repeat something that I have repeated so often here..."Don't sweat the little things, because they are all little things." Welcome aboard.

Cliff

Steve - I am sorry for what brings you here but do want to add mine to the warm welcomes! It sounds like you are in pretty good shape - please let us know how you are doing and let us know if there is anything we can offer in the way of support.

All the best,
Robin

Steve: WHAT? a chemo only type? Wow. Most here are transplant survivors or some are getting ready for transplants. I have not taken a survey, but I would guess there are less than half a dozen chemo-onlys -- like you and me. With you I guess its your DX and the type thing you have. For sure if you did not need a transplant then its best not to get one ... you will not have to worry about the GvHD things. And it sounds like if you do relapse then there is always the fallback position. So you sort of have the best of both worlds.

For me it was mainly my age. My onc said it was a break even, and since I was not that eager to go thru a transplant anyway, this came as good news. I was about 65 at the time -- am 69 now -- about a 3.5 year survivor.

Yes, tired -- get used to it for a while. It might be several months, but you are young and will probably recover quicker than I did. I think I have hit a plateau now -- a new normal for me. Nothing like what I used to push myself to do, but I can do most things at least for a short time. Then I have to give it up. Just don't push it. Your body will tell you. If you are getting light headed or feeling a bit funky, just take a shower and relax ... you earned it. For now, recognize, it will get better, but that will be gradual, and there will be setbacks. No use surviving AML only to have a heart attack. Remember, all of your organs have been through a terrible ordeal -- they have all been poisoned. They all have to heal -- and that goes for your heart and your brain too.

But you will make it and you are doing Great -- please let us know how we might be able to help and please stick around to help others. That's the deal. Thanks -- dave

Hi Steve,
I am sorry about your AML diagnosis, it turns your whole world upside down. I was first diagnosed in 2011 and I remember how tired I was with the chemo, it will get better. You may end up back in the hospital with an infection when your counts drop, just be very vigilant about how you are feeling and pay attention to your temperature. Be sure to go into see your doctor or ER if your fever hits 100.5 (or the limit your doctor has given you) or if you get the chills/shakes. It is usually just a Neutrapenic fever but they will give you antibiotics and check cultures. Everyone's reaction is different but for me I could always count on developing a fever about 10 days after my consolidation chemo.

Sounds like the type of AML you have is responsive to chemo only, that is great! Welcome to the group, the cumulative experience of everyone is truly a blessing. Please keep us updated on how you are doing. You are on the road back to good health, be sure to walk, it is truly one of the things that helps keep up your strength.

Take Care,
Suzanne

Steve,

Welcome, it's great your chemo only. I also have those NPM 1mutation but also have the FLT 3 mutation which cancelled out the benefits of the NPM1 so it was straight to transplant for me. I am almost 9 months post transplant( which seemed longer than any pregnancy I had). I am still very tired but its the new me for now I just have to accept it.

I hope you stay with us on this site as its great to gain experience from each other.

Planxty

Zann,

I did indeed have to go back into the hospital a couple weeks ago after finishing a round of consolidation chemo and I developed a cough (pneumonia) and fever. I spent a week getting over that and have been home over a week now. I'll be going back for another round of consolidation week after next.

My name is Lou and this is my first post. I came across this site during the many hours of research I've spent trying to figure out what kind of shot I have at defeating this monster. I was impressed at the knowledge of many of the participants and the support you've given each other. And when I saw Andrea's story with dates and a diagnosis similar to mine I knew I had to hook up in here.

My saga is a sad story like everyone else. I was diagnosed July 26, 2012, had a difficult time with induction that kept me in the hospital over 7 weeks and went home in pretty bad shape but somehow I pulled through. When I went back to the doctor for a routine follow up visit I got the lovely news that I had normal cytogenics but a FLT3 genetic mutation.

At the time I didn't know it but it soon became pretty clear that this genetic marker is not good. The research papers use terms like "dismal" and "poor" in their explanations of its effect on prognosis. My only chance was a stem cell transplant. I only have one sibling, my younger sister who fortunately lives just a few miles away and turned out to be a full match (either 6/6 or 10/10 or 12/12 depending on who you ask).

So I went back into the hospital at the end of October for a round of consolidation chemo to bridge me to transplant day while all the details, approvals and finances were being worked out. This was a breeze but it just so happened that hurricane Sandy knocked out the power in my town and they kept me in the hospital an extra week until the power was restored in my house. Wouldn't you know it? Nothing is easy.

On December 14th I checked in for a week of preparation. They decided on what they called a "slightly reduced" conditioning since I had so much trouble with induction and didn't want the preparation to kill me. The transplant was December 21, 2012 and was quite uneventful. Merry Christmas. The doctors were pleased with how quickly the cells engrafted and how soon I was at 100% donor cells. Blood counts came up quickly and only an unexplained fever and pretty painful headaches kept me in the hospital an extra week or so.

I'm now 134 days post transplant. I feel fine and have had no serious complications. I may have had some GVHD - I don't even know. If I did it was very manageable - some skin rash on the forehead, stomach cramps from time to time, a little intestinal distress - but nothing like you read about and see when you look it up online. I hope it was because the graft vs. leukemia effect is apparently very powerful and the main benefit of an allo transplant and crucial to someone who has had reduced intensity conditioning.

So now it's a waiting game. I know relapse after allo transplant makes things much more difficult. There really isn't even an established treatment protocol for these patients. And the FLT3 mutation makes relapse more likely although it's unclear to me how much, if any, the allo transplant mitigates this. My doc is talking about putting me on Nexavar once I'm weaned off the cyclosporine to suppress the FLT3. Sounds like she is hoping for GVL to kick in and take out the FLT3. Is that possible? It sounds good.

Needless to say I'm on pins and needles. I can't concentrate, too much time on my hands. At least I have a few things to keep me busy this week including a follow up visit to the doc with a bone marrow biopsy the highlight of that day. I also have a luncheon with my partners during which I expect them to begin negotiating my return to or retirement from the firm (accounting). They've been very good throughout my whole ordeal but now it's time to make decisions. After all, life goes on and business is business.

When I first got the crushing diagnosis of AML my first reaction was "this is going to mess up all my plans". At the time I didn't know how true that was but it turns out that truer words have never been spoken. This really sucks.

Lou,

Welcome. You will get so much strength from Andrea. She is a trouper par excellence. Please do not look back, only forward. I was not FLT-3, but got two inductions (failed the first), consolidation, and then an aggressive conditioning with TBI (ugh). I received an allograft from a wonderful person in Germany. I was treated at Memorial Sloan Kettering and received a T-cell depleted transplant, so no GVHD and I doubt the salutary effects of GVL. This is what they recommended, and this is what I got. I was diagnosed on March 28, 2011, was transplanted on Sept 8, 2011 and will have my second birthday this year. I feel well, although with my low T-cell count, I cannot yet return to work.

Lou, you didn't say how old you are, but I think you have some good years left in you. Be positive. You are doing well. Put the blinders on and keep going. I am glad you have joined our illustrious little club.

Be well,

Cliff

Hi, Lou, welcome. I just joined the other day. I was diagnosed last December. You'll see my post above. Best wishes to you on your journey, I hope your BMT works and brings you healing and wellness. I go in for another round of consolidation, High-dose Ara-C, week after next, and one last round in June, after which I cross my fingers and hope I stay in remission.

Lou -

I am very glad that you made the choice to share your story here; I hope you will find the site a good source of support. I am very encouraged to read how well your SCT appears to have gone! Wishing you continued progress.

Robin