Thank you so much to Andrea, Robin, lily, and Dave for the helpful replies and information. I have been very careful, Dave, about the fevers and take my temperature at least four times a day. Whether in the middle of a hot or a cold "flash," my temp is almost always 98. something. But twice it has spiked, and I have gone to the hospital and they have kept me for several days. They did find one infection, which was quickly controlled by antibiotics but they had to send home IV antibiotics last time--not just pills. They seem to have worked.
I am still "in waiting" for a transplant, but though they have identified two donors (unrelated--my sister is only a 50% match and the head of my transplant team says I need to have an 80-90% match because of flt3 and my age), the doctor is still not sure I would survive it. He is concerned about the shortness of breath (so am I!), not the hot flashes. Best explanation I have heard for the latter is that because I am burning fat cells, I am somehow producing more estrogen than normal, losing weight. I certainly have lost weight, so maybe this is it. In any case, they ARE maddening, and I am deeply glad to hear that they might someday go away.
I am headed back to the hospital on Monday for a second (and according to my doctor, final) consolidation chemo. The doctors here do not believe in more than 2 since, as my doctor said, "You are going to hate me, but I have to tell you that there are no data to support the fact that consolidation actually saves lives." It seems it's hunch. It's what they can do. They think it delays remission, but they can't be sure. Since I am at one of the best cancer hospitals in the country (I've done the research) and in the care of a doctor who has done a lot of research in transplants for people over 60, I have to trust them. What else can you do? This time, they are going to give me neupogen early and keep me in the hospital until the blood counts start to come up, since it took nearly a month after the last one for the recovery to take effect.
After that, I either move on to the transplant--or I don't, only because he thinks it could cause harm or I would not survive it.

I am so happy for all of you who have achieved remission and good reports. It gives me cheer, since it gives me hope. Peace to all.

I just joined your wonderful group after reading many messages and responses. There is so much warmth, knowledge and support here!

My husband, Sal, is 44 years old and was diagnosed with AML on 5/6/13. His platelet count was 8,000 when he was diagnosed and admitted to the hospital. His marrow showed 95% blasts.

He achieved remission after his initial induction therapy without too much drama. He spent 5 weeks in the hospital and felt quite well *most* of the time. Of course, after about 3 weeks he wasn't doing as well, feeling quite tired mostly. He got two infections (C.diff and a bacterial flu in his throat) which were treated with antibiotics. He was in the ICU one night, with dehydration and lithium toxicity. (He's bipolar and his lithium level spiked when became dehydrated.) He received transfusions - about 4-5 each red blood cells and platelets.

He has Trisomy 8 with no complexities (to our knowledge). Negative for FLT3 (good), also negative for NPM1 (shucks!).

He is being treated at Stanford Cancer Center now after having his induction in San Diego where he was working. (We live near Stanford.) His doctor says consolidation only at this point, but we may want to consider transplant. The doctor initially stated there is relative equivalency in survival between transplant and treatment for Sal's type of AML. However, after reviewing the last data set of 5,000 patients in the U.K. with Trisomy 8, he says that we may want to think about transplant if we have the right donor. (Sal has 3 sisters.)

Of course, Sal is having a lot of anxiety about all of this. Especially more so recently, with his consolidation coming up and the uncertainty of all of that. Consolidation is outpatient: M-W-F 7am to 10am & 5pm to 7 or 8 pm.

Thank you for being such a wonderful community.

- Monique

Wow, I haven't read this thread for a bit, and there's new people... on the one hand, happy people find this incredible support. But also sad to hear about any new AML case.

Julie: I know some people take a long time to recover from the chemo. As long as you remain in remission, that's the only important thing! I am chemo-only, diagnosed August 2011 and in remission since October 2011. Statistics for me were about 60% favorable. And with each day that goes on, chances increase :)
I was 42 at diagnosis. I am sure your doctors are monitoring your remission and counts. The good thing is that your body gets plenty of time to recover and prep for the next round...

Monique:

Welcome to the site. Sal's age is a plus in the case of AML
I don't know about Trisomy, I can tell you that I went through the transplant or no transplant dilemma. It's terribly difficult to choose. In my case my siblings ended up not being a match and there wasn't a good match that was available out there. So there was no real choice. My doctor now thinks it may have been for the best, since I went on to have 3 rounds consolidation and I am nearing my 2 year mark (since diagnosis) and if things continue like this, I may be considered cured with chemo only, which is an easier recovery than BMT.
It's a tough choice either way. .. Much easier if one of his siblings is a match.
Good luck with consolidation!
Abby

I am 40 the wife of a husband with AML recently diagnosed. We are in shock and now completing the 1st phase of treatment, the long stay in a university hospital. It's so difficult to leave my husband's side. We have 3 children and I am torn as where I belong... Home or the hospital. I spend most of the days and nights at the hospital. Our lives are all upside down. The children cry all the time and miss him and now miss me too. Family is trying to care for the kids but it's just not the same. I am terrified to leave my husband's side. Many days are very difficult for him and I feel our time has just got shorter together. I also feel as though I am neglecting our children and they need me too.

Shoshone,
I am going to tell you that I am flt3 and had no match. I had a haplo transplant(half match). My sister was a 50% match. I had radiation, and chemo pre- transplant and they transplanted me with marrow, not stem cells. The protocol, we call the "Andrea"protocol was not used prior with someone on clinical trial and apparently the Italian doctor said, though they cannot explain it, the protocol is working and patients are doing very well. I had no choice, the researcher told my transplant team, " I will get her in remission and you need to be ready to go when I say". I was admitted the day after Christmas. Yes, it was risky, but the alternative? I had already relapsed twice. FLT3 requires transplant. I was scared, I had a researcher from Penn, my transplant team and a physician in Italy 'Andrea Bacigalupo " consult on my case. My transplant was good. I try to stay on the Turing edge of all new drugs because I believe we are on the brink of beating FLT3 and shutting it off. I take an inhibitor now and am taking rounds of Decitabine post transplant. I am 100% donor marrow.
Now, let me preface, I started out in great health. I Was diagnosed at 47(now 48). I do know that my physicians were very optimistic that being under 50 was a factor. I know a lot of people over 50 that are in better physical shape than me, so I would question anyway.

So, ask a million questions. Go to get another opinion. I spoke to 3 or 4 physicians at different institutions and then was very vocal about what we were going to do to cure me. To. This day, I consult with three different physicians and they are all good with my assertiveness.
I have also had more than a few bouts of serious shortness of breath. In all cases, except one, a transfusion was in order.
I am praying for you. AML stinks and flt3 stinks more - stay strong. I am praying for outstanding outcomes for you. Please tell your doc about Andrea Bacicalupo in Italy. He stayed in touch with my docs throughout my process with no financial remuneration.
Peace, love and hope forever,Andrea

Lschuh,
First, I am so sorry your family is going through this. We all know how this turns us upside down and inside out. How o
D are your children?
My daughter recollects my husband saying, mom is really sick and we don't know 'if' she will be coming home. It was a shock. Then my daughter said to me, "I don't feel bad for you because you will handle this like everything else you do and get past it and everything will be fine again." wow ! I frequently felt horrible for my husband. He never missed one day visiting me, even when I was unaware of his presence. I have said he has had it much worse than me, becoming a single dad at times. We had the fortune of our hockey family cooking meals and taking my son to all scheduled events. I would beg my husband to stay home and rest, trying to reassure him I was ok alone. My kids added the FaceTime application to my phone, so I could see them, but my kids are older.
The one resounding thing my husband would say to me is we sacrifice 12 months for 400 more. He put a timeline -I have frequently told people I have mentored, you can do anything for a year. My heart is aching for you and your family. I am closer to my husband and children now more than ever. I have renewed faith and God has been good to me. Things will settle down. My induction was awful, but it's over now. The only thing you can do is look at the present, the past is over and the future is not yet important.
Clearly, you are devoted to your husband. I am praying for you and asking for some peace for you. My husband ended up on anti-anxiety medication and it helped him. i also encouraged him to talk to a therapist -he did and it helped.You will get through this, follow your heart . P.ease let us know how things move along. You have a good support group here.

Peace, love and hope,
Andrea

Thank you everyone for the encouraging welcome!!!

Hi Monique and a hello to Sal as well.
I completely Understand the anxiety of chemo only vs. transplant. I had to buy in to transplant as it was my only shot at cure, so I have said before, God continues to give me a path. I know my husband in The earlier stages, was hoping we would have a choice, but things did not work out for me that way. I found it easier that I had no choice, but I also spent so much time with so many patients having choices that I 'get it'.
You should probably get all sibling HLA typed anyway just in case that becomes an option. I had no matches and was running out of time, so I had a haplo (half match) back in January. I had relapsed previously a couple of times and then achieved remission on a clinical trial drug called AC220. Transplant was actually easier for me than induction (a complete nightmare).
I am adding Sal and your family to my daily prayer list. My favorite uncle (my godfather) is named Sal, so it will be very easy for me to remember. Please keep us posted as to the decision or even questions you may have. I pray for peace with your decisions and thought process. We are all soldiers in this battle against AML. Stay strong. Stay determined. Take it one day at a time. I thank God every night for the day I had and I usually awaken about 2AM and thank God for giving me another day to spend with my family. I have been fighting this now for just over 1 year. It's a journey. My life is transformed. We have accepted out 'new' normal. Be well and pass on my good wishes please.
Peace, love and hope,
Andrea

Welcome Lschuh,

I am so sorry for husbands diagnosis. I was diagnosed on March 22nd (5 days after my 48th birthday) I too have young children-three daughters ages, 12, 10 and 8. I wanted their lives to be impacted as little as possible, keeping them in cheer and tumbling classes and school play activities. It was hard being in the hospital for 28 with minimal visits but I felt comfort knowing my girls were with their father. We do not have any family in the area to care for the girls however to do have a very supportive neighborhood and church family. We just did what felt right for us and made peace with it.

Please don't be hard on yourself because you can't be a two places at once. Caregivers truly suffer mostly in silence, please take care of yourself. Soon the worst will be over. I'm praying for your family.

Blessings!

Julie

Dear Ischuh:

I am truly sorry about your husband's diagnosis and I know how much this turns your life upside down. The previous replies were from women and I thought I would give my perspective from a man who was the patient.

My wife has been rock solid through this whole journey which is approaching one year. She has never shown weakness although for all I know she cried herself to sleep while I was in the hospital. I only live ten minutes from the hospital so she was there most days but also kept to our family's routine as much as possible. And I understood that. I wanted this to disrupt our kids' lives as little as possible. My kids are older but they're still kids and rely on mom to provide the comforts and security of home.

I know you feel that your husband needs you, you don't want to miss something, which is all true, but your kids need you too, maybe more. They're scared and want someone to make it better and the only one they have is you.

Induction sucks. I spent 51 days in the hospital, by far the worst part of my treatment. Your husband will be tired a lot, he's liable to have nausea and all kinds of sicknesses and will sleep a lot and not be very good company and many times he will just want to be left alone, so don't feel guilty about attending to your children's needs. I'm sure your husband will want it no other way.

You're young and will get through this. Good luck.

Lou

Abby and Andrea, thank you so much for your warm welcome and encouragement. I have read many posts from each of you and feel very grateful to have contact with both of you, as well as so many others here.

I will keep the group posted on how Sal is doing, as well as add some thoughts and encouragement to others as I learn to deal with all this.

Thanks again,
Monique

Andrea, you are amazing! I really appreciate your reply which has given me more hope and more ideas! I am in much earlier stage than you are and still negotiating all the new knowledge (which is like a second Ph.D., the other being in English Literature and much more benign!). My age and my history of pulmonary emboli, along with the flt3, are apparently the worst factors against me. The doctor calls them "co-morbidities," a lovely new phrase I have had to add to my vocabulary. I am very very frustrated by the shortness of breath because it inhibits other things (like exercise and going out even for a drive), and since I have had pulmonary emboli (they keep testing to see if I still do, but so far negative), I have experienced this debilitation too much in my life and my overall fitness has suffered from it. I don't have a lot of strength, and I know the doctor wants me to bulk up! (I have lost nearly 50 pounds in all this, and that does not help.) But I will check into whether a transfusion is in order even before they start the consolidation chemo on Monday. They HAVE donors for me. One is 90% and the other is 100%. But they are still not quite sure I would make it. Very frustrating. Thank you so much for sharing your wisdom!
Lscuch: I don't have a spouse, but my (sainted) sister has moved from California to Ohio (with her pets) to take care of me. It has I am sure saved my life. But a lot of the time during induction (which in my case was pretty brutal because of the development of hand/foot syndrome, which I hope you never even have to know about), I mostly wanted to sleep, to know she would be there sometime soon, to make sure she had time away from the hospital and was comfortable and not suffering from boredom. I think you must also spend time with your children because your husband will know to trust your choices in ways the kids cannot always understand. You have to try to take care of yourself, and if my experience is any guide at all, he is, on a chemo floor, in the best possible hands, with people who DO care and will monitor him like a hawk and can care for him with a professional devotion that is almost equal to the power of your love and presence. So don't be afraid to leave him for awhile. Even in my fog of need, I wanted my sister to have time away (as long as she did come back!) and he probably wants that for you as well. Best of luck. This too shall pass.

Shoshone

Hi everyone,
I've only just discovered this forum and I wish I found it earlier.
I was diagnosed on the 18th of April this year with AML. I went from one day thinking I was a healthy 28 year old who played a game of Aussie rules on the weekend. To getting a phone call late on the Tuesday night to go to the hospital. Then on the Wednesday morning being told I have AML. My wife has a background in haematology having worked in a lab as a medical scientist which was good because she could spend the time to explain to me what it actually was.
I had one round of induction chemo which achieved complete remission. Spending a good 4-5 weeks in the ward. Followed up with one round of consolidation. I had a couple of complications after the induction chemo whilst in hospital. One with the liver having a blockage with a bile duct. Which apart from looking like Bart Simpson I was that yellow it was extremely painful. Followed up with a bowel obstruction. Which was also quite painful.
6 months on and I've just got back to work as a carpenter which is great. Having spent a lot of time at home. I was starting to go crazy. If I had of stumbled across this I'm sure it would of been great to share everything that was going on. I hope I can contribute in some way or another to this group. Thanks for reading about my journey. I wasn't sure how detailed to be.

Hi dpipe

It is great that you are in remission and have returned to work. I am from Australia also. I was diagnosed in June 2011 and had induction chemo and 3 rounds of consolidation chemo. I was 47 when diagnosed and now I am getting ready to celebrate by big 50. I returned to work 2 days a week in April 2012 and am now working 3 days a week, mainly out of choice.
Where did you receive your treatment? Did you only do 1 round of chemo?
Welcome to the site and heres to continued good health

Lisa

Dpipe -- great to have you aboard -- of course, we are all sorry for your problems, but you are one of us and we certainly welcome you aboard. You did not say anything about a transplant so I guess they either went chemo only or else that might still be in your future. I am going on four years of survival AML/MDS chemo only.

I don't know of any others on this list who have had your complications, and so you definitely bring something -- you can help others who might be getting into that same type of thing. Were you treated in Australia?

We look forward to hearing from you and tracking your continued success. My only advice is try not to over-do it. I would expect you get tired much quicker than you used to. It will take a while, but at your age I would expect full recovery would be possible. -- dave