16 YR Survivor of Acute Monocytic Leukemia-Chronic Pain and Fatigue

cdamarco
cdamarco Member Posts: 1
in Leukemia #1

My name is Chris. I was diagnosed with AML M5 october 1999, just after my 13th birthday, had full body radiation with chemo and had a perfect match for a transplant from my only brother and received a transplant just after Y2K. Things were alright for the years following, save for removal of a few skin cancers that had to be removed due to the radiation. My PCP 10 yrs later convinced me i had low testosterone, tho I am skeptical of this in hind sight since my levels were still in the normal range and I had a lifestyle that would have supressed good testosterone levels anyway and he did not properly screen for other causes.

I notice that I have accepted a poor quality of life as normal. I always feel achy and tired and have headaches. When I tell doctors this I just get nonsene advice like drink more water, exercise more etc. I already drink way more than enough water and exercise only worsens my headaches. They throw antidepressants at me which just cause the expected side effects but don't grant any noticeable benefits. Has anyone else had any of these issues?I just always feel miserable and tired and irritable and tired. I have no sex drive, no friends, no inner desire to be social. I feel so lost. Did the painkillers or chemo or radiation just destroy my ability to feel even slightly comfortable in my own skin?

 

I feel like I am living a half life, I survived cancer before I hit puberty and I have not really felt alive since...

Comments

  • caw4016
    caw4016 Member Posts: 1
    #2
    Chemo Complications

    I am sorry no-one has replied sooner to your question.   Believe me you are not alone.   I am a mother to a 30 year old daughter who had chemotherapy 6 years ago for AML.  We have actively searched for treatment of the late effects; joint pain, fatigue and depression.  The hemotologists only concentrate on bloodwork and the numbers.  They recommend going to doctors that have no experience with chemotherapy, the drugs used, or the after effects.  Most have done more harm than good.  Until oncology progresses to the point of looking beyond chemotherapy and focusing on numbers, the quality of life for survivors will continue to be poor.  We continue to look for answers and hope you will do the same.   

  • Mwall
    Mwall Member Posts: 2
    #3
    caw4016 said:

    Chemo Complications

    I am sorry no-one has replied sooner to your question.   Believe me you are not alone.   I am a mother to a 30 year old daughter who had chemotherapy 6 years ago for AML.  We have actively searched for treatment of the late effects; joint pain, fatigue and depression.  The hemotologists only concentrate on bloodwork and the numbers.  They recommend going to doctors that have no experience with chemotherapy, the drugs used, or the after effects.  Most have done more harm than good.  Until oncology progresses to the point of looking beyond chemotherapy and focusing on numbers, the quality of life for survivors will continue to be poor.  We continue to look for answers and hope you will do the same.   

    Hello ive been.looking on

    Hello ive been.looking on website for years for answers or any body with feelings like you . My husband suffers same he had bone marrow transplant 5 years ago and he now suffers all elements aches pains mood swings tired just feeling generally rubbish and old feeling even thou hes not. 

  • Mwall
    Mwall Member Posts: 2
    #4
    Also my husband goes to the

    Also my husband goes to the gp all the time they don't say much other than take pain killers I know they.must think.well.your alive your lucky etc. But no one says how your feel years and for the rest of ya days after it all.  For me as a caregiver I feel useless I struggle with my own emotions sometimes too.

  • RosenlyPinkTea
    RosenlyPinkTea Member Posts: 3
    edited July 2018 #5
    I am coming across new health issues since...

    I have been coming across new health issues since my BMT. I am 12 going on 13 years cancer free and 100% my doners bone marrow but... why do I still feel like I am fighting cancer? I can relate to your post as I am feeling similar. I had childhood cancer right when I was to hit puberty (when I was 12) and I  have low estrogen. I see an Endo for it, as it seems my thyroid was damanged a long with my ovaries etc and not being able to hit puberty on my own after having a strong round of Chemo Thereapy. I have hypothyroidism now. I also have oviarian failure too.
    My hair never fully grew back, it's thin. I also have underdeveloped teeth and damage from chemo, so to say it came with a lot of side effects.

    I also have lack for vaitamin D and C and some how since my thyroid medicine can cause osterperosis, i am now also battling making sure my hips bones get better and I don't develop osteoperosis. I also lately became strong in fatigue, chronic joint pains (feels like inflimation), chronic acid reflux (GERD), exercise makes my pains worse and i some how became allergic to anti-inflamitory medicines, lost 10lbs in one month, my stools are bright yellow, hard time digesting fats, the cold makes it worse too, my allergies get this makes it all 10xs worse (my chronic pains and acid reflux), i feel moody, emotionally drained, brain fog, anxious, depressed and may be developing insominia and sleep apnea. I have no clue what all the new symptoms are being cause by this time, but was hoping i could find survivors that feel this way too, maybe something could be figured out. It's almost 2 years with these new symptoms, i hope to find answers sooner. I don't have any cancer though, my blood tests came back fine. So what else has cancer and chemo damaged in me? That I'm sure you are wondering too. I hope we can find answers sooner than later.

  • TheresaDH7585
    TheresaDH7585 Member Posts: 1
    edited September 2018 #6
    Being checked for CLL

    my father has CLL for lst five years. He does ok except this year. Ive been sicker than Ive been in my 53 years. But he wanted me to tell my primary dr. about him so they can keep a watch on it. Ive had some concerns this year. Going for blood work and if needed the marker. Im having uncrease in aches and pain all over body pain. . Im praying Its all for just checking but im worried.  Does anyone have any symptons I should look for? Id appreciate any help and Im always up for helping anyone. Thanks and lets be friends

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