Hi jmysray

Welcome you have found a great board with lots of helpful people

Firstly if his haemoglobin is low close to or under 70 then he will fell breathless , and find basic tasks like walking to the bathroom a major issue.... Not sure of your doctors / hospitals protocols but ours was anything under 70 would receive blood bag.

Sounds like he did the right thing and went straight into hospital before he got too sick and collapsed.

Don't google, just ask the boards any little silly question you may have we are much more positive than google

Get him to start drinking water at least 2l, deep breath a couple of times a day to keep lungs expanded, and see if he can walk, even if it's up and down the corridor, he needs his strength

Lastly, make sure no one visits that is sick limit visitors and wash your hands after everything, touching a lift button, coming from outside the room.... Make sure he doesn't touch anything he doesn't need to, not money, lifts, handrails outside his room ..... Keep a very tight rein on keeping he away from infections

Hope that gives you a little starting point

Xx

Yes it does, i thought he would. Be receiving blood today but nothing yet. We walked around the ward about 5 times early this afternoon but then he began feeling overwhelming tired. Just texxed him he has a low grade fever100.3, its scary to see a man that is usually very active and physically strong not have the strengh to get up to go to the bathroom, as I brought him the urin holder several times before I left this evening. Just scared for him I know he is scared and i wish i could do more for him!

Welcome Jmysray,

Sorry for your finance's diagnosis but I'm glad you found this helpful, compassionate and informed group early on in your journey. I was dxd in march of 2013 with absolutely no symptoms-just routine blood work. I felt absolutely great then and continued to feel pretty dang good throughout-not even a fever. I even managed to walk two to three miles while getting chemo. I spent a tone of time alone because my husband had to work and take care
of out three daughters. 8,10 and 12. For me the days in the hospital seemed to go by quickly. For induction I was there 26 days. His treatment plan will be determined by the chromosomal results. Either path, chemo only of BMT, the is beatable. There are several here who have beat it and have tons of sound advice

Blessings,

Juliene

Thank you for your uplifting words it is so helpful just being able to connect with others that have hands on experience. I will update once we have results of the chromosones back. I do have a few questions regarding where the second round of treatment is done. Currently for the 7+3 induction treatment it is my understanding that regardless of where he would go it is pretty standard protocal, but once we get results should we be looking to try to get to a facility that could offer more specialized care, he is currently at Mercy hospital in Springfield mo.

I think that is going to depend on the results of the testing and what risk category he will fall in. The consolidation rounds of the chemo seemed pretty standard too, at least for me. If was only when i found out that i fell in the high risk category that I was referred to transplant specialist. If your not comfortable with the service that you are getting where you are at now, by all means seek a second opion. I was lucky that i felt that i couldnt have been in better hands when i went through induction and consolidation chemo. I guess i never really felt like i had time for a second opion, i was home not knowing what was wrong one day and doing chemo two days later. If there is anything you need answered i will try my best. I've been through the chemo and stem cell transplant.

(sorry you had to come here, i dont think anybody here wishes they were, but as said earily this is a great bunch )

Dave J.

Thank you dave I am sure i will have many more questions once we get the report

I do have another question as i was reading the lab report it said acute myloid leukemia with 75% maturation , what does the maturation percentage mean

Jmysray -- that is a good question -- we have not talked about "maturation" and what it is to my knowledge. I would suspect that it has to do with the maturity of the blasts. If so, I doubt it is that significant in that the goal of the chemo is to kill the blasts that are not maturing and allowing the other cells to grow and do their things -- this is why he is so tired -- very few useful blood cells.

But before getting into that, please do not get caught up in all of the terminology and statistics. Most of the people on this list, including me, are survivors, and your fianc is going to be a survivor as well. I know even the slightest chance of his not getting through it has you and him in a turmoil. But it is time to get over that and start looking to a future after chemo and perhaps a transplant. It will be a few months in the future to be sure, but you and he will get through it just like the rest of us did.

The main thing now is to pay close attention to the need to keep him isolated -- they called me bubble boy -- but on my door was a big sign -- No Visitors Please -- and I/we meant it. Do gooders who are well meaning can kill. Especially kids. Wipe down everything with disinfectant. Don't let him touch anything. Get him to carry around a paper towel to touch things. Other than you and other care givers, just do not take a chance.

Your fianc has a mutant stem cell (perhaps more than one) that is producing what are called blasts -- immature baby blood cells -- that refuse to grown up and do their job. But they take up space so ever the good guys cannot do what they should either. The chemo will kill the blasts, but it will also kill the good blood cells. This will have all kinds of side effects that he will just have to make up his mind to live through. Ask us about them as they occur and we will give you advice on how to handle them -- we have seen them all (I think -- or most of them). If you are lucky the chemo will also kill the mutant stem cell(s) that are causing the problem, or so disable them so as to make the incapable of reproducing -- this is what is called remission. It is what all of this is all about.

Please keep asking questions -- but do us/me a favor -- ask your onc to define "maturation" for us, then let us know what that is. This would be quite useful to all of us. Take care -- dave (I am the dave with the little d -- the other dave is Dave J). I am a 4 year, 4 month survivor and I am 70 ... if I can do it, your man can as well, but please take care of him ... he is going to need it.

Thankyou little d i will ask , i will do what you say i already purchased gloves and masks and germx for me to use once he gets past week 2. One thing i will tell you that the doctor told when i asked her about the need for heightened sterilization she quickly told me he has more of a chance on infecting himself with his stomach flora, mouth bacteria, then from someone else, I asked since i had read it on hear in earlier posts prior to signing up, no matter what she says i am going to be extra cautious. Thanks again!

That is most likely right jmysray about the infections, as the ones inside you already may pop their head up.

However you don't want to bring in any new bacteria, either from people or food. He is most likely on a Low bacteria diet, try and keep on this even when his neutrophils have risen.

My mum got through 3 rounds of chemo and the only infection she got was right at the very end and that she found was a struggle to get over the little cold. She did however take daves approach and she was in a family bubble

Xx

Thanks Aussiemom. I will take your advice , no matter what she says what could it hurt

I had my three month post treatment/remission Dr. appointment and we discussed the draconian lengths I went to to stay infection free. I teleworked from home, I did not go in a public building for ten months, my three daughters did not have friends over, I walked outside everyday but did not get next to humans. How did this pay off? I did not have a single infection much less a fever. I had four rounds of chemo and have been in post induction remission since April of 2013. My doctor said in a perfect world all patience would do so; however, not everyone can tolerate the isolation. Early on during my treatment, I saw several peers how died from infections. This got my attention and I committed to be uber careful and I have NO regrets.

Blessings,

Julie

that always surpises me Julie when the doctor or nurse say ohhh you should be ok now your neutrophils are up... and also that not everyone can tolerate the isolation.

I understand that people like to be social, but whats a couple of months really !

I think the most social thing mum did was what we call chemo coffee..... mum and dad would go to a caf on the beach, dad would go in and order a take away and they would then sit in the park next to the caf.... that was the extent of her " take out" for at least 5 months.

Also took her a while when she was cleared to go food shopping without her hands in her pockets so she would avoid touching things lol