Dealing with many long term effects

standard55 said:

I am also 2x cancer survivor. I am 46. Breast ca free 9 yrs & colon ca 4 yrs free. Most frustrating long term effect has been chemo brain from colon ca. Hard to read books when you forget what 1st half of sentence said. Also affects daily living. Forgotten appts., problems following directions, doing check book, counting change. Simple mental tasks are now very difficult. I have also been brushed aside when this was mentioned to my oncologist. Even though I'm cancer free I believe chemo damaged my brain, nerves and muscles. I have not felt healthy since the chemo. Fatigue, pain and resulting depression and no ones listening. I'd just like someone to validate these issues.

I am 47 and a 12-year breast cancer survivor. I ,too, continue to suffer with chemo brain since my BC treatment. It is very frustrating to be so forgetful and disorganized. I have a hard time finding the words I want to say, and this makes me feel stupid. I believe, as you do, that chemo damaged my brain, but also my endocine system. I never regained my prior energy level. I suffered the usual chemo induced menopause and the symptoms that go along with that. I also have thyroid and adrenal problems which also cause fatigue, memory problems, joint and muscle pain, along with weight gain. I believe all of these problems are long term effects of chemo and/or radiation. I would love to read a study or research paper that acknowledges this.

acarr said:

I am 47 and a 12-year breast cancer survivor. I ,too, continue to suffer with chemo brain since my BC treatment. It is very frustrating to be so forgetful and disorganized. I have a hard time finding the words I want to say, and this makes me feel stupid. I believe, as you do, that chemo damaged my brain, but also my endocine system. I never regained my prior energy level. I suffered the usual chemo induced menopause and the symptoms that go along with that. I also have thyroid and adrenal problems which also cause fatigue, memory problems, joint and muscle pain, along with weight gain. I believe all of these problems are long term effects of chemo and/or radiation. I would love to read a study or research paper that acknowledges this.

acarr,
I'm not sure you'll find much research. But anecdotal stories certainly back up that these problems are common and real.There is a great book dealing with late term effects in children by Wende Hobbe at Children's Hospital of Philadelphia.She is a nurse at their late effects clinc.You are not alone and there are more and more clinics popping up to deal with survivor's problems.Feel free to contact me here if we can share any info that may be helpful.

dickl

standard55 said:

I am also 2x cancer survivor. I am 46. Breast ca free 9 yrs & colon ca 4 yrs free. Most frustrating long term effect has been chemo brain from colon ca. Hard to read books when you forget what 1st half of sentence said. Also affects daily living. Forgotten appts., problems following directions, doing check book, counting change. Simple mental tasks are now very difficult. I have also been brushed aside when this was mentioned to my oncologist. Even though I'm cancer free I believe chemo damaged my brain, nerves and muscles. I have not felt healthy since the chemo. Fatigue, pain and resulting depression and no ones listening. I'd just like someone to validate these issues.

i have the same symptoms and im 7 months away from chemo 1st time....i'm wondering when this will stop im going to be insistant with my dr. but she keeps suggesting different meds

I completed radiation and chemo (taxol and Carboplatin) in March of 2000. I am experiencing the same symptoms you mentioned plus more. These problems are very debilitating and the fact the the Docs can't find out why this is occuring makes it even more of an ordeal. I'm very frustrated.

For those of you dealing with late effects there is a great resource on the ACOR mailing lists. It is a discussion group for long term survivors, mostly childhood and adolescent cancers. Here is the URL. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1

Or you can write directly to me for more information. (zame@earthlink.net) The list has over three hundred members and there is no need to feel alone with these problems. Many on the list contributed to the book Childhood Cancer Survivors by Nancy Keene.
Hope to hear from some of you,
Linda Zame
HD (1971)

acarr said:

I am 47 and a 12-year breast cancer survivor. I ,too, continue to suffer with chemo brain since my BC treatment. It is very frustrating to be so forgetful and disorganized. I have a hard time finding the words I want to say, and this makes me feel stupid. I believe, as you do, that chemo damaged my brain, but also my endocine system. I never regained my prior energy level. I suffered the usual chemo induced menopause and the symptoms that go along with that. I also have thyroid and adrenal problems which also cause fatigue, memory problems, joint and muscle pain, along with weight gain. I believe all of these problems are long term effects of chemo and/or radiation. I would love to read a study or research paper that acknowledges this.

48 here, 4 years NED (no evidence of cancer) since my surgery for colorectal cancer and lots of chemo and radiation. I haven't been able to work since due to fatigue, short term memory loss, depression and anxiety. My oncologist and PCP aren't concerned. My surgeon said "Be glad you are alive." I coulda smacked him! It sounds like you've had some specific tests to measure thyroid and adrenal activity. I'd like to know more about these tests. My docs gave me the standard blood test for thyroid and said I'm within the normal range. Come to find out that range is very big! It's so frustrating not to find doctors who take me seriously. It's so easy for them to blame it on my depression medications. My psychiatrist said it isn't the meds. I read the results of one study that showed some patients suffered from the symptoms 10 years after treatment and beyond. Main problem is they weren't tested before treatment began to establish a base point for comparison. That plus the 'normal' effects of aging and menopause keeps researchers from drawing clear conclusions. I'm interested in tests accurate enough to measure a change in the function of affected organs, especially the brain. As long as the medical community can be vague about the cause of these symptoms, they can dodge treating it directly, IMHO.

mmhere said:

48 here, 4 years NED (no evidence of cancer) since my surgery for colorectal cancer and lots of chemo and radiation. I haven't been able to work since due to fatigue, short term memory loss, depression and anxiety. My oncologist and PCP aren't concerned. My surgeon said "Be glad you are alive." I coulda smacked him! It sounds like you've had some specific tests to measure thyroid and adrenal activity. I'd like to know more about these tests. My docs gave me the standard blood test for thyroid and said I'm within the normal range. Come to find out that range is very big! It's so frustrating not to find doctors who take me seriously. It's so easy for them to blame it on my depression medications. My psychiatrist said it isn't the meds. I read the results of one study that showed some patients suffered from the symptoms 10 years after treatment and beyond. Main problem is they weren't tested before treatment began to establish a base point for comparison. That plus the 'normal' effects of aging and menopause keeps researchers from drawing clear conclusions. I'm interested in tests accurate enough to measure a change in the function of affected organs, especially the brain. As long as the medical community can be vague about the cause of these symptoms, they can dodge treating it directly, IMHO.

i keep hearingbe glad im
i keep hearingbe glad im alive also. I am alwats tired I sleep 12-14 hours a day n get tired just getting dressed i have seen 10 drs and tried everything I have no idea and miss my family as I just sleep then wake up tired NO ANSWERS!! thanks n God Bless. jackgrenan@netscape.net

shirlann said:

Hi, honey I hope you are on a really good B complex vitamin with separate C & E. If not, you will feel much better soon, if you try it. Hugs, Shirlann

tired
I tried all that n more I sleep 12-14 hrs a day n wake up tired and need naps!! LOL out of ideas drugs n last one was ritalin...no luck anyways thanx jack

shirlann said:

Hi, honey I hope you are on a really good B complex vitamin with separate C & E. If not, you will feel much better soon, if you try it. Hugs, Shirlann

tired
I tried all that n more I sleep 12-14 hrs a day n wake up tired and need naps!! LOL out of ideas drugs n last one was ritalin...no luck anyways thanx jack