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Dealing with many long term effects

lgraz
Posts: 6
Joined: May 2002

Hi, I am a 2x childhood cancer survivor (I am 34 now). The last 10 years or so I've been devleoping long tern effects- chronic pain, chronic fatigue - which no-one acknowledges- chronic staff infection and memory loss. I'd love to chat with others dealing with even one similar issue.

standard55
Posts: 1
Joined: Jun 2002

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.

acarr
Posts: 1
Joined: Jul 2002

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.

dickl
Posts: 39
Joined: Jan 2002

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

mmhere
Posts: 4
Joined: Apr 2001

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.

DrJack
Posts: 11
Joined: Jun 2010

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

DrJack
Posts: 11
Joined: Jun 2010

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

dickl
Posts: 39
Joined: Jan 2002

standard55,
You are not alone, unfortunately these are common problems faced by most survivors I have talked to. The medical community is slow to recognize and deal with these issues.My son has multiple neurological problems following a bone marrow transplant 6 years ago.He's now 14.There are long term effects clinics in some areas where there are major treatment centers.I heard of a very good program out of Stanford in Cal.There is a good program for kids at Philadelphia's Children's Hospital.
Feel free to contact me.You are not alone.

dickl

katabo's picture
katabo
Posts: 63
Joined: May 2002

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

yazmene
Posts: 6
Joined: Oct 2002

I just got through with treatment in the middle of Feb 2002. At first I was extremely tired and constantly in pain, but about 3 months ago this began to subside. However, I did become extremely depressed and was experiencing anxiety. It got so bad, that I didn't want to leave my apt in fear of having an anxiety attack in public. Finally I went to the doctor, and she put me on Zoloft. WOW! I feel amazing! Prior to that, I thought I was going crazy. I seriously think that chemo causes a chemical imbalance in the brain. I may be cancer- free, but how long will I have to take Zoloft?

dickl
Posts: 39
Joined: Jan 2002

Igraz,
Read my replys to standard55 and others.There is a great book by Wende Hobbe.about late effects that have occurred in children . Contact me if I can help share any info.

dickl

shirlann
Posts: 235
Joined: Oct 2001

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

DrJack
Posts: 11
Joined: Jun 2010

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

DrJack
Posts: 11
Joined: Jun 2010

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

DrJack
Posts: 11
Joined: Jun 2010

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

DrJack
Posts: 11
Joined: Jun 2010

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

DrJack
Posts: 11
Joined: Jun 2010

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

gailforce
Posts: 1
Joined: Sep 2002

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.

lindazame
Posts: 46
Joined: Jan 2002

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)

forevergrateful
Posts: 1
Joined: Nov 2012

HI Linda.
I hope I can find the book you've mentioned.
I had cancer of the salivary gland and neck when I was 11 in 1958.
Two radical neck dissections followed by full body cobalt were the treatments. At one point, I was told I would have to wear a mask.
I've had 3 children. Two are in their 40s and doing well. Two grandsons, 7 and 9. What a blessing!
Ny youngest daughter died the night she was born because of a horrible birth defect that the doctor said could likely have been caused by the cobalt.
She had anencephaly. A very sad time. But made me even more grateful my first two babies were healthy.
Thyroid issues, neuropathy, neck and shoulder pain and diarrhea are symptoms I attribute to the cobalt.
But overall, I am truly thankful. I remember well being told I would never be able to have children, and that I was high risk for the cancer to return.
Thank God, neither of those became true,
Forever grateful.

TERESA12452
Posts: 1
Joined: Mar 2003

HI, THE MEMORY LOSS HAS NOW LASTED 5 YRS. I DON'T THINK IT WILL BE BACK. I'M ONLY 51 BUT FEEL LIKE I'M GETTING ALZHEIMERS! WRITE IF YOU WANT, TBHHUNTER52@HOTMAIL.COM THIS IS THE FIRST TIME I HAVE EVER BEEN ON THIS SITE. BYE

Alloyd
Posts: 9
Joined: Jan 2004

Dear Igraz I had chemo (carboplatin & taxol) & radiation to the chest in 02 due to lung cancer. They also removed my left lung. I have cronic back pain upper body and leg weakness and slowed thinking. As I am typing this I am going slower than ever and keep hiting the wrong keys. It's frustrating to say the least, But am so grateful to be alive. I also have a lot of fatigue. I dont mean to sound negative but am just stating the facts. Thanks Al

DrJack
Posts: 11
Joined: Jun 2010

I am in the same boat i sleep 12-14 hrs a day n need naps i have seen 5 drs ...NO HELP recently they tried Rotalin....no help any ideas jackgrenan@netscape.net

leprechaun2
Posts: 76
Joined: Jul 2011

My hub slept 20 hrs/day after his 5 weeks of whole brain radiation. Then for 2 more hrs he was waking or falling back asleep. His 2 hrs of wakefulness where while I was at work.

I was alarmed and missed him so much.

His doc prescribed provigil and he almost instantly added 10 hrs to his day! It is used for shift workers and it helps with chemobrain.

Good luck and may God bless!

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