Post 8 years-long term side effects

Leelee08

I'm 58 year old active athletic woman who's been cancer free for 8 years!!

Thank you Lord!!

I was on the 5FU/Cisplatin regimen.

I have had trouble with my short term memory ( more than just old age setting in...not genetically prone to this ) my 82 father and mother are sharp as tacks and have excellent memories.

It's extremely frustrating...

Memory problems and confusion started about 3 years ago....5 years after treatment.

Has anyone else experienced this?

Research has been limited to what long term side effects can be...perhaps because anal cancer is rather rare?

mp327

Leelee08

Welcome to our group!  I am nearly 7 1/2 years post-treatment so I'm not far behind you.  While I have some long-term side effects with intestinal issues, I believe I have not experienced memory issues.  But perhaps my husband would know better than I do. ???????????  I do agree that due to the rare nature of anal cancer, it could be that long-term side-effects have not received much attention.  I hope that other than the memory issues, you are doing well.

Martha

sephie

i have memory problems

i am post tx 6.5 years.....i definitely have had problems with speech and memory ....started during tx....i know it is different than what i used to be.... my parents also had no dementia....dad lived to 85 years...mom just 76.....i just thought it was the chemo during tx but is very noticable as the years have gone by....i am not quick to think for answers to just easy questions people ask me.... started , as i said, early on .and has been problem since...... sephie

mxperry220

Short Term Memory Loss

I completed my treatments in January 2009.  I am a 65 year old male.  Since completing treatments I have noticed some short term memory loss.  Dimentia does not run in my family.

Mike

judyv3

Me too!

I find these memory issues to be very frustrating.  It is difficult for me to get through my day at work.  Granted, I am a procrasitnator from way back.  But I could handle more before treatment than I can now.

It is comforting to know that we are not alone, right?

Judy

jcruz

Leelee08

Last year, 2 years post-treatment, I began experiencing episodes of memory loss, lost words, mixed-up speech and spelling.  When I talked with my psychiatrist and my primary care doc they sent me off for extensive blood work and a brain scan.  I also saw a neurologist who thought it was “interesting” that what I was experiencing was just like my immediate post-treatment chemo brain. My oncologist suggested that I had had a TIA, that there was no long-term issue with 5-FU. I had a neuropsychological evaluation that showed mild cognitive deficite which the psychologist said could be caused by stress, age or depression.  He couldn't comment on the chemo effects. 

 

I did a little research on 5-FU and found a study done at the University of Rochester in 2008 which showed long-term neurological effects.  The conclusion of the study was published in the Journal of Biology, April 22, 2008.  The Journal of Biology is a peer-reviewed journal. 

 

I hope this is useful.

 

University of Rochester news story

 

Journal of Biology article

 

minireview of the above article

    this review was written by a neuro-oncologist at MDA

 

Neurology Reviews article

    “Cognitive side effects of chemotherapy may be attributable to CNS damage”

 

Lorikat

four years post tx and have

four years post tx and have short time memory loss, I have to seach for words (or substitute).  I have always been an avid reader but now cannot keep track of more than two or three characters.  And burning and hurting feet...  No known heredity factors....

horsepad

I am almost 5 yrs cancer

I am almost 5 yrs cancer free.  I noticed immediately a change in my memory that never improved.  I questioned my 4 oncologists and none seemed concerned.  I know my memory gets worse with age but mine is terrible and embarassing.  I was on 5FU/mytomicin and after research on the internet found that this is a side effect.  So.....I have accepted it and have gratitude that I am still here and for the most part, doing well

Pilikia55

12years and counting!

I recently celebrated my 12 year end-of-treatment anniversary. I've followed this site for 2 years, but have been very shy to post anything, thinking I had nothing to contribute. But I realize that perhaps my story can inspire you all, as yours have inspired and helped me. I'm 60 years old and doing GREAT. But what a long strange trip it's been (to paraphrase a favorite band) for us all, hasn't it?  I practice law, ride my bike, walk for hours on the beach, run 3 miles 2 x per week and enjoy life with family and friends. I raised 2 sons in the past 12 years, now both through college, and that helped me get through everything. in my darkest days during and after that horrible treatment, they helped me persevere And keep my eyes on the prize. 

My post-treatment symptoms are (now) negligible -- particularly considering the alternative! My hips hurt quite badly at night, enough to wake me. But I'm fine if I'm up and about, walking, running, vacuuming, whatever. Inactivity, like sitting at my desk, is wearing.  My doctor tells me that my hips are likely degenerating a bit. And that hip replacement is not a good option for someone who has had pelvic radiation. Who knew? I was unaware of this radiation side effect for years. Nobody told me anything to expect 12 years ago, except that things would "calm down" after a few months  Hmmm.  There have been ups and downs, but a slow and steady progression to healthy has won the day  

I travel a lot, but am ever aware of where the closest restrooms are to be found. I didn't let that prevent me from hiking Machu Pichu last year, however. Life does get better! I had vaginal issues, but now have an Estring and sex is sooo much better. My husband has been with me through thick and thin, thank god. I've had foot pain, ascribed to plantar fasciitis, but I now believe some of that, at the beginning at least, was chemo related. 

I don't worry as much. I don't sweat the small stuff. I know there is a light at the end of the tunnel. 12 years out and life is good. Many thank you's to all of you who have enlightened me in the past 2 years. You have been the support group that didn't exist when I was diagnosed and treated 12 years ago. 

TraceyUSA

Pilikia55 said:

12years and counting!

I recently celebrated my 12 year end-of-treatment anniversary. I've followed this site for 2 years, but have been very shy to post anything, thinking I had nothing to contribute. But I realize that perhaps my story can inspire you all, as yours have inspired and helped me. I'm 60 years old and doing GREAT. But what a long strange trip it's been (to paraphrase a favorite band) for us all, hasn't it?  I practice law, ride my bike, walk for hours on the beach, run 3 miles 2 x per week and enjoy life with family and friends. I raised 2 sons in the past 12 years, now both through college, and that helped me get through everything. in my darkest days during and after that horrible treatment, they helped me persevere And keep my eyes on the prize. 

My post-treatment symptoms are (now) negligible -- particularly considering the alternative! My hips hurt quite badly at night, enough to wake me. But I'm fine if I'm up and about, walking, running, vacuuming, whatever. Inactivity, like sitting at my desk, is wearing.  My doctor tells me that my hips are likely degenerating a bit. And that hip replacement is not a good option for someone who has had pelvic radiation. Who knew? I was unaware of this radiation side effect for years. Nobody told me anything to expect 12 years ago, except that things would "calm down" after a few months  Hmmm.  There have been ups and downs, but a slow and steady progression to healthy has won the day  

I travel a lot, but am ever aware of where the closest restrooms are to be found. I didn't let that prevent me from hiking Machu Pichu last year, however. Life does get better! I had vaginal issues, but now have an Estring and sex is sooo much better. My husband has been with me through thick and thin, thank god. I've had foot pain, ascribed to plantar fasciitis, but I now believe some of that, at the beginning at least, was chemo related. 

I don't worry as much. I don't sweat the small stuff. I know there is a light at the end of the tunnel. 12 years out and life is good. Many thank you's to all of you who have enlightened me in the past 2 years. You have been the support group that didn't exist when I was diagnosed and treated 12 years ago. 

Pilikia55

Welcome!  I think you have much to share and I am very happy to see another long-term survivor!  Congrats to you on 12 years....I am coming up on 3 years next weekend.   The success stories continue to inspire me and help me through those dark hours when mind wonders to the "what-ifs".  I can remember finding this site shortly after treatment and the tremendous help/hope that seeing people who were survivors brought me.

Hip replacement not being a good option post pelvic radiation is interesting.  There is so much that has never occurred to me would result from this treatment but being healthy now is a good result, so I cannot complain.

Thanks for sharing & Continued wellness to you!

Tracey

 

 

mp327

Pilikia55 said:

12years and counting!

I recently celebrated my 12 year end-of-treatment anniversary. I've followed this site for 2 years, but have been very shy to post anything, thinking I had nothing to contribute. But I realize that perhaps my story can inspire you all, as yours have inspired and helped me. I'm 60 years old and doing GREAT. But what a long strange trip it's been (to paraphrase a favorite band) for us all, hasn't it?  I practice law, ride my bike, walk for hours on the beach, run 3 miles 2 x per week and enjoy life with family and friends. I raised 2 sons in the past 12 years, now both through college, and that helped me get through everything. in my darkest days during and after that horrible treatment, they helped me persevere And keep my eyes on the prize. 

My post-treatment symptoms are (now) negligible -- particularly considering the alternative! My hips hurt quite badly at night, enough to wake me. But I'm fine if I'm up and about, walking, running, vacuuming, whatever. Inactivity, like sitting at my desk, is wearing.  My doctor tells me that my hips are likely degenerating a bit. And that hip replacement is not a good option for someone who has had pelvic radiation. Who knew? I was unaware of this radiation side effect for years. Nobody told me anything to expect 12 years ago, except that things would "calm down" after a few months  Hmmm.  There have been ups and downs, but a slow and steady progression to healthy has won the day  

I travel a lot, but am ever aware of where the closest restrooms are to be found. I didn't let that prevent me from hiking Machu Pichu last year, however. Life does get better! I had vaginal issues, but now have an Estring and sex is sooo much better. My husband has been with me through thick and thin, thank god. I've had foot pain, ascribed to plantar fasciitis, but I now believe some of that, at the beginning at least, was chemo related. 

I don't worry as much. I don't sweat the small stuff. I know there is a light at the end of the tunnel. 12 years out and life is good. Many thank you's to all of you who have enlightened me in the past 2 years. You have been the support group that didn't exist when I was diagnosed and treated 12 years ago. 

Pilikia55

Your post was the first thing I saw this morning when I logged on and what an inspiring read!  First of all, congratulations on being a 12-year survivor and doing quite well.  I am very impressed by your attitude and your level of physical activity.  I am also a runner who suffers from hip pain, but like you, I am still at it.  Moving is the key for me as well, but sitting and lying down elicit pain.  I thank you for pointing out what your doctor told you about hip replacement not being an option due to the pelvic radiation.  I had never thought about that, but it does make sense. 

I am at 7.5 years out of treatment and I am always, always thrilled to hear from someone who has more post-treatment years on their resume than me.  I think we all need encouragement no matter how far out we are, so I deeply appreciate you coming here to tell your story.  I have often thought about dropping off of the support sites, but am often reminded where I was physically and emotionally in 2008 and how much easier things would have been if I had had the kind of support that is offered here.  Like you, I do not wish for anyone to have to travel this journey alone. 

So you have made my day wonderful and I just woke up!  Thank you so much for posting and I hope that we will continue to hear from you from time to time--that is, when you are not too busy doing all of those things that make your life happy and so awesome!  Take care and I wish you all the best!

Martha

Pilikia55

Martha and Tracy

YOUR posts are the reason that I finally signed on and added to this discussion. You, and others that have shared their journeys here like you, have inspired me so much. My thanks are to you, deeply and sincerely. There really has been no one else in all these years for me to talk wiith about this cancer. When I first accessed this discussion board, and read your words, I was overwhelmed. Others have experienced what I did and lived to laugh again?! I only wish this group had existed back in 2003, when I was madly searching for some light out of the tunnel that I had entered! Having anal cancer can be a very isolating, lonely place, no? This was before Farrah Fawcett was diagnosed and later died ( peace be with her). My oncologist asked me to speak with 3 of his other patients back in 2004, because he felt that I could help them. There was no one else for them to talk to it seemed, even in a large, cosmopolitan California city. Of course, I did, talking with each of them weekly over the months they endured the treatment. But I moved away and didn't keep in touch. And I have always regretted that I couldn't do more. Anyway, thank you for your guidance. Even though I was several years ahead of you in diagnoses and treatment, you've been a teacher to me.  Aloha. 

mp327

Pilikia55 said:

Martha and Tracy

YOUR posts are the reason that I finally signed on and added to this discussion. You, and others that have shared their journeys here like you, have inspired me so much. My thanks are to you, deeply and sincerely. There really has been no one else in all these years for me to talk wiith about this cancer. When I first accessed this discussion board, and read your words, I was overwhelmed. Others have experienced what I did and lived to laugh again?! I only wish this group had existed back in 2003, when I was madly searching for some light out of the tunnel that I had entered! Having anal cancer can be a very isolating, lonely place, no? This was before Farrah Fawcett was diagnosed and later died ( peace be with her). My oncologist asked me to speak with 3 of his other patients back in 2004, because he felt that I could help them. There was no one else for them to talk to it seemed, even in a large, cosmopolitan California city. Of course, I did, talking with each of them weekly over the months they endured the treatment. But I moved away and didn't keep in touch. And I have always regretted that I couldn't do more. Anyway, thank you for your guidance. Even though I was several years ahead of you in diagnoses and treatment, you've been a teacher to me.  Aloha. 

Pilikia55

I thank you for your kinds words--they are much appreciated.  I can totally relate to the lonliness you felt at the time of your diagnosis and treatment.  But I soon learned that it only takes one person to make a huge difference--the first one in my case being my radiation oncologist.  Early in my treatment, he got another anal cancer patient and asked me if I would speak with her, which I did.  Although she was 2 weeks behind me in treatment, we quickly bonded and had many conversations over the weeks of our treatment and a few months following.  We still speak with each other occasionally and I am so thankful that she is doing well.  She was the second person who made my journey not so lonely.  I didn't get on any online support sites until I was over 2 months out of treatment and was amazed that there was such support out there.  It would have helped me tremendously during my treatment had I only known.

I do hope you will continue to visit this site and let us know how you're doing.  You will continue to be my inspiration!  Thank you again for your kindness!

Martha

momma27

plantars fascitis

My adult son took 5FU and Xeloda for rectal cancer stage 4.  Cancer popped up in his lungs.  He refused chemo and opted for surgery and natural remedies against all major cancer recommended treatment by major cancer treatment hospitals throughout the USA.  All wanted to give him more chemo.  Without chemo He has been in remission for over 2 years....much longer than when he took chemo.

However, he has plantar fascitis on both feet due to his chemo.  He has trouble walking and must sell his 2nd floor condo due to the steps.

Despite going to several doctors for the planars, expensive shoes, numerous insoles, exercises etc.  nothing has been able to relieve the severe pain.  Acupuntcure is somewhat helpful temporarily.

Does anyone out there have any suggestions?

Thank you in advance

 

Ohmy

I thank God everyday for all

I thank God everyday for all of you on this site.  You got me through the treatment and give me hope for the future.  I am eight months post treatment and I have noticed some memory loss.  I forget words in mid sentence but I try not to stress out about.  The words always come to me later.  I call it chemo brain.  I got plantar fasciitis in my right foot last year, a few months before my cancer diagnosis.  My husband bought me Orthoheel shoes and I had to wear them for months before the pain subsided. Now I wear the Orthoheel shoes if I am doing any kind of walking.  I try to buy shoes with memory foam.  I am going to clean out my closet and get rid of all my shoes with uneven wear and high heels.  My husband has had plantar fasciitis for years and he told me the Orthoheel shoes are the only thing that stops the pain but you have to wear them for months.  He can now wear regular shoes with the insoles.  I hope this helps you son.  

mp327

momma27 said:

plantars fascitis

My adult son took 5FU and Xeloda for rectal cancer stage 4.  Cancer popped up in his lungs.  He refused chemo and opted for surgery and natural remedies against all major cancer recommended treatment by major cancer treatment hospitals throughout the USA.  All wanted to give him more chemo.  Without chemo He has been in remission for over 2 years....much longer than when he took chemo.

However, he has plantar fascitis on both feet due to his chemo.  He has trouble walking and must sell his 2nd floor condo due to the steps.

Despite going to several doctors for the planars, expensive shoes, numerous insoles, exercises etc.  nothing has been able to relieve the severe pain.  Acupuntcure is somewhat helpful temporarily.

Does anyone out there have any suggestions?

Thank you in advance

 

momma27

You might try buying a pair of heel cups to wear in your shoes to see if they help.

LindaBaehr

Memory Loss Too

I am 17 monhs post treatment, and I still have "chemo brain", which is very frustrating, especially at work.  It worries me that this part might actually get worse.  I also have pretty bad neuropathy in my feet, so I definitely have nerve damage, so I'm assuming I have the CNS damage mentioned above.  

Sparrow1946

LindaBaehr said:

Memory Loss Too

I am 17 monhs post treatment, and I still have "chemo brain", which is very frustrating, especially at work.  It worries me that this part might actually get worse.  I also have pretty bad neuropathy in my feet, so I definitely have nerve damage, so I'm assuming I have the CNS damage mentioned above.  

LindaBaehr

I'm 6 months out from chemo and radation. I've always been blessed with a really good memory, but now I too have chemo brain. It's so aggravating to have this problem. Does it ever go away? I've had neuropathy for 12 years. Tonight my feet are burning and hurting. I took Lyrica for years. Now I'm on Gabapentin. Certainly is painful. I pray the best for you. 

 

mp327

Linda and Sparrow

Memory loss due to cancer treatment is real.  My memory is not as good as it used to be.  All that said, I am 64 years old now and perhaps this is part of the normal aging process, I don't know.  However, it all seemed to begin right after I had cancer treatment back in 2008.

Sparrow1946

mp327 said:

Linda and Sparrow

Memory loss due to cancer treatment is real.  My memory is not as good as it used to be.  All that said, I am 64 years old now and perhaps this is part of the normal aging process, I don't know.  However, it all seemed to begin right after I had cancer treatment back in 2008.

Memory loss

i'm 71 this month, but my memory has always been exceptional until chemo. People have often remarked how do you remember that. I'm concerned about this and now I'm trying to hide it from my family. Scares me. It has to be chemo.