First of all, if you get your Father's permission and it is made known to the med people -- perhaps even in writing -- they they will be free to discuss things with you. Otherwise the HIPAA constraints are very stiff -- I just took the refresher course yesterday. They will tell you what you need. Usually if you are there by consent when they talk to your dad there is no problem because there is an implication that he consents to that. But otherwise you might need to get something in writing.

What you describe is not uncommon -- the chemo takes a while to work and most people are surprised that it does not make them sick during the round. But it is not the chemo directly that causes the problem -- plus they usually give stuff in the IV to prevent that. The problems come when the chemo kills the good blood cells that are serving the entire body, and especially the digestive system, which needs a LOT of good blood to do its stuff. Also the bigger problems come when the WBC are low and cannot defeat an infection -- that sounds like it could be the problem, but if there is no fever then that is a very good sign.

What he is going through is fairly normal -- the problem with the fluid is that they flood the system with it with IV and also encourage him to drink a lot of fluids -- this is to protect the kidneys, so puffing up in the legs is normal -- I could not even get my shoes on -- had to use some slip-ons. Sleeping is good but he needs to get up and walk around the floor several times -- do that about three times a day if at all possible. This will help the water retention as well.

Please ask questions and the people on this list will help you -- I am chemo only and over 5 years of survival -- they may advise regarding transplant and things of that nature. Just take it one step and one day at a time. Nothing seems too out of the ordinary at this point.

We are all praying for you, your dad and your entire family. Things will never be the same again, but they will get a whole lot better than they are right now. -- daveB

Going into remission after the 1st induction round of chemo is not uncommon. I did. And it is a good sign. They should be at the point where they know if he is high risk and needs a Stem Cell Transplant or if he is in the low risk group (of relapse) and will be just getting the consolidation rounds of chemo only for further treatment.

It is also not uncommon that his appetite is very bad right now either. The chemo wreaks havoc on your sense of tastes and mouth sores can be a problem. And fatigue also goes with the territory.

Have your Dad speak with the Doctors, I'm sure they will have no problem discussing his care and future treatment plans with you.

I'll join in the prayers for your Dad, and for his cure.

DaveJ

The hospital where I was "housed" had a form that I filled out with the names of the people could have access to my medical information.

I felt pretty good during the chemo itself, but as the "Daves" mentioned, it was after the chemo that I felt crummy. I had no appetite. Nothing looked good. Mashed potatoes were the only thing that remotely sounded good for a long time. I also got milk shakes to get some calories. Somehow anything that I had to chew wasn't on my menu.I wasn't vomiting, but just couldn't eat.

I wanted to sleep all the time. Even taking a shower was an effort. I was thrilled to have a seat in the shower so that I didn't have to stand.

I was plagued with infections while I was in the hospital. So many that even though there was no sign of cancer, I had to stay for weeks on end to get rid of the bugs. Between November and the beginning of June I had only a few weekends and a couple of almost full weeks that I was allowed to go home. It was very frustrating. I had C.dif, sepsis related to a form of strep,and pseudomonal bacteremia after my first round of chemo.

I relapsed and started another round of a different chemo. It had to be stopped after the first day because I was diagnosed with RSV. I was treated for eight days to eliminate the RSV.

I'm not saying all of this to scare you, but rather to let you know how important it is to have clean hands. Every visitor that comes into his room should use hand sanitizer or wash with soap and water before entering. I got used to saying "did you use sanitizer?" to every person that entered the room. Don't let the nursing staff use anything that has dropped on the floor. There were a number of times that I had to ask them to use a different syringe or other item. Even if it's packaged and falls on the floor it shouldn't be used.

I will add you and your father to my prayer list. I am called a "miracle" by many people after everything I've gone through. I believe in prayer!
Katotina

Dear Katotina,

Thanks for the encouraging words. I too believe that prayer is more powerful than all the treatments combined. That said, thank God for the doctors, the treatments, the new drugs and advances.

I believe my brother is going to be another miracle.

Twilight

dear luvmyrebel
"is it possible for aml to go away after induction chemo?" yes it is possible, but it depends on type of aml. if your dad is lucky to be low risk (i pray) he will still need a series of consolidation chemos. cancer is very scary, as all of us on this forum can confirm. the first thing i would advise you to do is to:
AVOID INTERNET AS FAR AS READING ON AML!!!!!
there is too much info out there that is out of date or does not relate to your case. it is terrifying to read and mostly irrelevant. this forum is very helpful, so when you have a question, please ask it here.
i wish you and your dad very best of luck. be strong and patient. this challenge is often harder on the family that on us patients.

b.

Dear Luv,

I completely agree with Boris, stay away from the web. I am one of the blessed one Boris mentions that aml went into remission after the standard first week of induction chemo. All aml patience get induction chemo, some being a second round of it too go into remission. This remission will not continue without follow up treatment, either more chemo or a stem cell transplant.

This group is full of mighty warriors who have beat the aml demon with both paths. I was 48 at dx and I'm now 28 months out and living acompletely normal life. I'm praying for your family. Remember it is great that your dad is in remission. Now do everything his need tteam recommends.

Blessings

Julie

I am so sorry for what your father, and you, are going through. I, too, was an only child and I was able to talk to my dad's doctors about everything that was going on. I assume that he gave them some sort of permission when he was admitted to the hospital but that time is a bit of a blur to me so I can't remember. But you should have access to all of his information and be able to talk to the doctors about everything going on if your father so wishes. As for the after effects of chemo... Doctors warned us of the other shoe dropping... He felt fine during the chemo, about 2 weeks later is when things went south for a bit. But fear not, he will rebound and when his counts start to come up, they do so quickly. Just hold on, things will get better. My thoughts are with you and your dad.

It has been a rough week+ to say the least. He was feeling ok up until a week ago when he became very disoriented. They rushed him to surgery to put a port into his neck for kidney dialysis. In the past few weeks he has gained nearly 30 pounds of fluid retention. His heart was functioning at 30% and kidneys at 10%, He is still very disoriented and sleeps pretty much the whole time. He can't eat or drink due to the swelling in his mouth and throat. They did a head scan to see if they could find reason for confusion state. They found a 1-2 mm bleed on his brain. If he takes any fluid in he chokes. They are crushing his meds up and feeding them to him with applesauce. this morning it took almost an hour to give him the applesause. His doctors are being wonderful and keeping me up dated with happenings and such. I feel I am at the end of my rope. Today I don't feel like being around people at all

I believe that being the caregiver is more stressful mentality, than being the patient. Keep your chin up rebel, it seems like his med team is doing the right things to get him through this rough patch and on to further treatment. There are a some here that have had a really tough time of it like your dad, and are doing fine now. Keep praying and I will do the same. As Katotina said, the power of prayer is real, and I attribute it directly to my survival.

DaveJ

Met with dr this past week. My dad feels he was lied to. He still does have leukemia, will only stay at bay if he continues chemo. First round of chemo did severe damage to his heart and kidneys. To point if he does not have dylasis every few days his kidneys will not function at all. If he has more chemo has to be a less aggressive type as to not do more damage to heart and kidneys, which un turn means not work as well on leukemia. He is still unable to eat foods. I fed him ice cream and apple juice the day I spent with him. They have put in a feeding tube. I am on the consent papers to talk to however when I call I get a nurse who simply says resting comfortably and he has a cell phone you can call him you know. I know he has a phone but also know that he is out of it enough that he can't answer it!

My 66 year old Dad is also in the hospital with AML. Just finished his 2nd round of induction chemo and is really in the throws of it. I feel your frustration and helplessness. Taking it one day at a time seems to be the best course for my family. Every day is different. Praying for remission and a break from his pain.