Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Hi, My name is Debbie and I live in Baton Rouge, LA and my husband was diagnosed in February with AML. He was in hospital for 41 days and rehab for two weeks and finally came home April 18th. It has been so hard on me because he had the hospital delirium and was in ICU for a while and port got infected had to remove and one thing after another.
I took leave of absence from work and just returned a week ago. He is in remission and still going to outpatient therapy to gain strength in legs and body. This is so scary and he has had low platelets for over five years and never dreamed it would be leukemia. Does anyone else know if it affects the muscles and joints as he is having lot of problems still getting up walking, he does use walker and cane. He had WBC of 2.7 on Monday and platelets were 39,000 which we deal with often but they are holding off on more chemo unless absolutely necessary.
If anyone can give me encouragement I could use it. I am 64 and my husband is 72.
I took leave of absence from work and just returned a week ago. He is in remission and still going to outpatient therapy to gain strength in legs and body. This is so scary and he has had low platelets for over five years and never dreamed it would be leukemia. Does anyone else know if it affects the muscles and joints as he is having lot of problems still getting up walking, he does use walker and cane. He had WBC of 2.7 on Monday and platelets were 39,000 which we deal with often but they are holding off on more chemo unless absolutely necessary.
If anyone can give me encouragement I could use it. I am 64 and my husband is 72.
I am 71, and a 5.5 year survivor of AML, so can relate to much of what you say. I do not know anyone on the forum that has had the specific complaint -- inabllity to walk after chemo -- but it seems like it is chemo damage that came from his muscles and bones not having the blood nourishment that they need. On the other hand, without the chemo he probably would not be with you now, so you have to accept that tradeoff. AML itself would probably result in death before it resulted in no being able to walk -- but that is just my opinion. I feel like the issue has to do with the chemo killing good blood cells and that, in turn, leading to muscle deterioration.
Most of us have had a number of things -- the worst probably being chemo brain -- and it is a fact that ALL organs are affected by chemo. Nothing against chemo, I owe my life to it and am looking forward to a number of years ahead.
The good news is that it is recoverable. Keep up the rehab and do not give up. It will hurt but do what they tell you. Could be that deficiency in platelets will slow things down and for sure DO NOT OVERDO it. Its not like with youngsters where the more you destroy the muscle tissue with conditioning the stronger it gets -- at this age we have to accept that some things are just not going to come back. But I have great confidence that he will be able to walk again without a walker.
My story is on http://BibleThought.net/ and there are some other articles and references to articles regarding chemo side effects. Please give that a look-see and let me know either here or privately (my e-mail is on the site) if I can be of any other service. Do not be afraid to ask questions -- members of this forum thrive on them and it makes it much easier for us to help you. We will be praying for you -- daveB
As DaveB stated, we are all here to help. I was DXd at 48 and am 26 months out with chemo only treatment. Although I did not have a history of low platelets prior to DX, I have battled them since treatment-just below low normal.
Low platelets (as low as 5) while recovering from chemo never impacted my ability to exercise. I walked an average of 3 miles everyday. While receiving chemo, me med team routinely checked for central nervous system impacts e.g balance, weakness ect. This seems more in line with what your husband is experiencing.
If I may have your husbands first name so that I can add both of you to my family's prayers list, that would be great!
Blessings,
Julie
You have officially made me not the newest member of this group as I joined yesterday. :) We can learn together!
I have a different form of leukemia than what your husband, Dave and Julie have experienced. I am a bit of an outlier, but will answer and share what I can. Please do not hesitate to ask.
I think Dave and Julie will be fantastic sources for you. Everyone here is very knowledgable and kind. Until I know enough to comment, I will pray.
Uncertainty is a very difficult thing to deal with. Take each day as it comes and don't worry about the next. So easy to say, but harder to practice. All I can say is that i am happiest and most at peace when I do. I am positive that God loves us and knows what is best. With that knowledge, the future seems like something I should pay little attention to, at least outside of the things that God has given me control over.
All the best,
John
I will add your husband to my prayer list.
Hugs and prayers.
Karen
Miracles happen everyday, I was dx Nov 2012. I have some rough patches during my tx with 3 wks of high fevers and platelets that doesn't seem to come up. I was not able to work for approx 7 months. Hang in there.
Dids..
There is great support on this site and most questions we have, they have been there and done that and have great advice for dealing with whatever the issue.
Will be thinking about and praying for your family.
Debbie
He can live for months or weeks only GOD knows that . His attitude is good and we are thankful we have each other and have time to take care of our business and enjoy our family. His remission lasted only March until now so that isn't good.
Just saw your post. I am so sorry to hear. This disease makes me so angry sometimes. I am happy to hear though that you both are at peace and enjoying your family. I will be praying for you, especially for that miracle.
John
I was diagnosed at 58 and am now nearing 4 years post transplant. We all have our very very serious moments. I too was infected during my first (failed) induction and was in the ICU delirious. I am now well. Just did a 2 hour workout at the gym. I am not a spring chicken either, and your husband will get through this. I apologize to you and everyone on DS for being very AWOL. My brother was just diagnosed with Hairy Cell Leukemia, a horse of a different color, but not something that my family is relishing dealing with after my ordeal.
Remember....speed bumps, not walls. When things seem insurmountable, your husband will inch his way around the speed bumps, but nothing is impossible.
Cliff