Acute Myelogenous Leukemia (AML) Support Group

Hey, don't apologize for the length of your post!! Congrats on achieving remission after induction! That is wonderful news :) In my position my mom and my husband were both with me and took turns staying by my bedside throughout my induction. That gave me SO much comfort! *hugs* God Bless you for being there for your mom!

Hey Julie,

I hope your mom is doing (and feeling) OK. Since you first contacted me via a reply to one of my posts, I've read your original post above and done some thinking about stuff that might be helpful. If nothing else, we can see the similarities in our situations!

My very self-reliant 62 year old widowed mom has had a number of health issues throughout her life (hyperthyroid, scleraderma, celiac) - none directly life-threatening, but certainly indicative of someone with some autoimmune "issues". After a year or two of anemia of unknown reason, a bone marrow draw and cytogenetic testing revealed AML in mid-Feb. She lives about an hour and a half drive from me, my family, my job etc. but is surrounded by friends in a community where she's lived for 35 years. She went to a hospital about a mile up the street from where I work for her induction chemo, so I was able to visit frequently and help out with stuff. Because of the celiac - the tiniest speck of gluten kills her digestive tract off for weeks, not good when you're trying to put every calorie you eat to good use - the hospital folks brought in a fridge so she could keep all her own stuff as long as she liked right there in her room. She did 7 days of induction chemo (cytarabine for all 7 days, daunorubicin for the first 3) and then spent 3/12 weeks fighting off various infections, chemo side effects, antibiotic side effects etc. Side effects were hair loss (not really a factor for her, since she shaved her head down to a high shine right before entering the hospital), weight loss (she was about 102 lbs going in, about 90 pounds when she left), mouth sores (that one was the worst for her), brusing, swelling in the abdomen and lower extremities, clots (3 in her right arm, 1 of them occlusive), dry/peeling skin, blurry vision (due to extreme dry eyes, her corneas are all scratched up), extreme fatigue combined with sleeplessness (how unfair is that one!) and "chemo brain"...which I encountered before reading about it. In her case she was frequently befuddled by previously simple things (reading and replying to e-mail), forgetting or mixing up people's names. She's been out of the hospital and staying with a friend back in her hometown, starting to gain some weight back, and seems to have a little better stamina and alertness than when she left the hospital last Tuesday. She was weak as a kitten then, and now she's taking care of cooking breakfast and lunch while her host takes care of dinners.

I've found that the most important thing I could do for my mom is keep life moving along as usual - as odd as it sounds, I am a little used to seeing her either puffy or skeletal in appearance and thinking nothing of either, other than to ask if there's anything specific I can help her out with (this has ranged from running down to the store for sweet potatoes, to cutting up her food when she was totally beat) and making sure she understands what doctors and other medical staff are working on, the hows and whys, etc. I keep her caringbridge site up to date for family and friends, and generally make myself useful. I f you can move your mom nearer to you, it'll probably reduce the long distance stress factor...I wish you success in your HMO wrangling.

I'm sure I'll think of more things...any questions, please don't hesitate to ask!

-Damon

My mother as well has AML and ive learned so much about it too everyone tells me i need to be a nurse. our stories are a little different. my mother had aml when she was 21 and had me in her belly.. she had to pick between her living or me living. She picked me and she survived as well. Thank god. 18 years later in 2005 the cancer came back. same symptoms as your mom except they thought it was strep. My mother got what is called a donor lymphocyte infusion which was her last resort because she already had a bone marrow transplant when she was younger. we had to switch insurances as well. i heard texas is one of the best along with seattle washington, where we went. I decided to sign up to be her caregiver, but with my mom she didnt want to remember this time around so she was high on perscription drugs and basically gave up. so the only hard part about being a caregiver is putting your mom first. it was hard for me because im 21 and had to grow up real fast when i was 17. the only horrible thing about this whole situation is my mom has been in remission a few times. and now has so many other things wrong with her. so you have to look at things in both ways.. im not trying to be negative as it sounds im sure.. but yes keep your hopes high and never give up. leukemia is a horrible thing. Im sorry your mom has to go through it.. i always wondered why.. but ill never know.. i hope your mom stays in remission its a tough road to deal with a sick mother.

Julie -

Forgot to mention a good thing to do, if your mom is comfortable and able to talk about it, is discuss an advanced healtchcare directive if you haven't already. My mom (and dad, back when he was alive) has had one in place for a number of years. Also have her give you medical power of attorney in the event she's unable to either decide or communicate treatment decisions. I thought doing these things would be disturbing or morbid, but it actually freed us up to think about other more positive things rather than fretting about "what if this happens, what if that happens" etc.

-Damon

Hi all,

I was reading through these posts and I could finally feel that I am not alone in a caregiver perspective. My sister is 28 and she was diagnosed one month ago with Leukemia. I am 25 and as a younger sister, my role has abruptly changed. She is now at home from one week and will go back next week to continue chemeo for at least 4 weeks.

Both my sister and I have moved from our home country and we are living 20 mn away from each other. It was a great shock to hear directly from her, her diagnosis.

I never thought it would be possible that just in one day I can feel hope, anger, guilt and powerless. It has been a rollercoaster ride and most of the time I am trying to focus on the stuff I need to get done for her. It has been a struggle as I have a close relationship with her and now things have changed.

There are no words to describe the physical transformation that she's been going through and I wished I could do so much more for her.

My family is coming here in groups to help me out but I cannot help feeling a tremendous responsability as she is relying on me at this very difficult moment of her life.

After 4 weeks, I am trying to find my place and role in this situation and I still hope that all of sudden things will go back to normal.. I am very optimistic but I have my moments too. Any comments, help or guidance is very much appreciated.

Just as a side note, I have found this pdf online for caregivers that I think it is interesting to share:

http://www.cancer.gov/cancertopics...

Hugs to all patients and caregivers,

Hi... My sister has AML and has been in remission for a while now. She went in for a check-up yesterday and was told she has GVHD... Does anyone know anything about this? They have started her on steriods. Thanks.. e-mail me at f_mitchell@sbcglobal.net

I wish you and your mom all the best... and the same to everyone going through it. My sixteen year old sister was diagnosed with AML a month and a half ago. She just finished her second round of chemo and has been in remission for a while now. She's had to endure the side effects of the treatment as well as the complications of having no immune system. She recently contracted an infection in her blood and is fighting off pneumonia. However, despite everything her spirits are up.

It's hard watching someone you love go through the process and the only thing you can do is to be there for them and to make sure they don't feel left out or unloved. Don't forget that even though they have AML they are still the same person they were before the diagnosis. Nothing irritates my sister more than when we try to baby her because of what she's going through. She doesn't want the special treatment. She just wants to be herself.

Sending hugs and prayers to you and your mom.

Florajo, I have both chronic and acute GVHD. I am on tacrolimus (FK506), Prednisone, dexamethasone, betamethasone, and a whole HOST of other medications to help control my symptoms. I am also on morphine extended release and oxycodone daily to ease pain from the GVHD. Do you know what type of Graft Versus Host your sister has? Liver, skin, eye, gastrointestinal, G-U Tract or other?