Eye problems in survivors? Muscle twitching? Other neurologic issues?

slickwilly said:

Hi Again
First I will say I am not any sort of medical professional and can only talk about my own problems. Having said that, the medical community is still learning about the side effects of many types of chemo and radiation on our bodies. Sometimes I read and learn data from other countries that have run studies. But as far as I know radiation will take away calcium and make bone brittle along with thinning. It will also make a mess of teeth. The vertebrae in my neck area became so brittle that it cannot be worked on. The discs area is closing up and pinching off nerves. Then you add arthritis over a large area that is now pushing on the spinal cord and it causes constant pain. My right arm quit working for three months and its pretty common to have neck pain that works up to the base of my skull. It then goes into a migraine with the longest lasting 8 days. That is why I say take care of yourself now and don't be abusing your spine. I raced snowmobiles for 15 years and I am paying for it everyday. I take calcium supplement pills. I limit the shock to my spine and neck. Things I took for granted like pushing a lawn mower, blowing snow and running are not something I can do. Wear good shoes with cushioned soles. As you are already having some problems you should be looking at activities like swimming, snorkeling, camping, sailing ect where your still active and not causing more harm to yourself. And wearing a moto cross type back brace if your working or lifting is a good idea. I really don't want someone else to end up like me. Its not a fun way to live when you have had an active life. Slickwilly

Some of the same
Hi,

I am a twenty year survivor of Hodgkins and now a two year survivor of Colon Cancer. Man you would think once is enough. I do have tingling in my toes still from the chemo. I have developed tinnitis recently but that could be due to age (58) I also have some of the muscle spasms but hard to blame treatment for that. I try to excercise as much as possible and stay positive. Sounds like you are trying to do the same.
Cheers, Lance

ralphie322 said:

symptoms
i am a lymphoma suvivor for 7 yrs i have alot of the same symptoms the docs say ihave dry eyes in which to try artificial tears but the tinnutis drives me nuts and there is nothing they can do for me i am bricklayer for 13 yrs and i work hard and some days i feel dead with those same symptoms i hope u feel better and just press on thats what i do its not easy to live a simple but i try and do know where your coming from good luck

Tinnitus
Hey Ralphie,

Were you given any explanation for your tinnitus. Was it due to chemo or do they think it is just a coincidence?

Cheers, Lance

ralphie322 said:

tinnutis
i had 3 e,n,t, docs say it was from radiation but the radiation docs say no i am at a loss one doc wants to operate but isnt sure its gonna work so hell wit that i have been threw enough P.S....GO PHILS

What sort of operation
Hey Ralphie,

I am going for an MRI in April. What is it the docs want to operate on. Is it something they found in the inner ear? PS Go Leafs (I know it is hopeless but what the heck)

Cheers,
Lance

slickwilly said:

Hi Again
First I will say I am not any sort of medical professional and can only talk about my own problems. Having said that, the medical community is still learning about the side effects of many types of chemo and radiation on our bodies. Sometimes I read and learn data from other countries that have run studies. But as far as I know radiation will take away calcium and make bone brittle along with thinning. It will also make a mess of teeth. The vertebrae in my neck area became so brittle that it cannot be worked on. The discs area is closing up and pinching off nerves. Then you add arthritis over a large area that is now pushing on the spinal cord and it causes constant pain. My right arm quit working for three months and its pretty common to have neck pain that works up to the base of my skull. It then goes into a migraine with the longest lasting 8 days. That is why I say take care of yourself now and don't be abusing your spine. I raced snowmobiles for 15 years and I am paying for it everyday. I take calcium supplement pills. I limit the shock to my spine and neck. Things I took for granted like pushing a lawn mower, blowing snow and running are not something I can do. Wear good shoes with cushioned soles. As you are already having some problems you should be looking at activities like swimming, snorkeling, camping, sailing ect where your still active and not causing more harm to yourself. And wearing a moto cross type back brace if your working or lifting is a good idea. I really don't want someone else to end up like me. Its not a fun way to live when you have had an active life. Slickwilly

Hey Wid
I am a 20 year survivor of NHL and I have a whole whack of after effects from my treatments. I had an autologus (my own marrow)transplant after a recurrance of the NHL and total body radiation so I was hit hard but you will read about many after effects for many survivors on this board with all kinds of treatments. I have eye problems big time from it all. Extreme tearing of my left eye (side of the cancers and most of the treatments)big freakin tears just form especially from that eye and drop on my shirt, so embarrassing - comes from nowhere. Before the tearing started I had sharp horrible pains in that eye but when rushed to the Eye Institute they could find nothing. Very frustrating. The damages start on the cellular level so they can't see it sometimes til much later and of course it is now well known that radiation to the eyes can cause dry eye syndrome. Like Slick said more and more the medical field is realizing how damaging cancer treatment can be but we have a long way to go with some validation in certain areas. My heart was also damaged in transplant and I have daily problems with that now as well, yada yada, I could go on for days. But back to the eyes you asked about - yup they can totally be damaged - sometimes the problems don't appear til years later - it was 13 years after transplant that I started to have eye issues. Also the left side of my face appears bigger than the right, including the eyes, some docs won't validate that when it's starring right at them - I know that was the total body radiation - it isn't too too noticeable yet but when it becomes that way I will opt for plastic surgery to even things out. Opthamologists in general I have found not very validating so far and I have seen 5 of them across the country - they will be forced to acknowledge us soon. Maybe I have just been unlucky with the ones I have hit, I'm sure some are more validating out there - I hope. There is a high price to be paid for many cancer cures, some of us had no idea that this would be our future after all was said or done but what price a life? You have to ask yourself - would you have made a different choice had you known what might be down the pike for you if you had the treatment to save your life? Most of us have asked ourselves the question and most usually the answer is yes.

I too have had and do have tingling issues in my feet and legs mostly but it can occur all over my body at times. The medical field is now understanding nerve neuropathies from treatment. There is a lot written about it now, thank God.

I have been having many memory and cognitive changes as well. Not only forgetting but just not relaying information in an orderly way - often giving people the wrong impression in conversation - it can be brutal when it comes to talking to doctors about symptoms. So I write it all down and have them read it, if you can get them to do it. One rheumatologist I saw last week flatly refused to read my 2 pages of symptoms - too busy. Sigh, that was depressing I can tell you. I struggled to remember key points but it wasn't a good experience. I still say you need to write symptoms down but keep it short - as soon as they see a full typed page they go into convulsions, lol, so keep it short. Also next week I am going to a Memory Clinic here for complete diagnosis. I am actually looking forward to that as it's a long process - very thorough - and they seem so far at least to be quite validating. I will try and remember (hahahaha) to let you know how that goes.

In closing, just know Wid that you are not alone in after effects. This site will give you great support and understanding. Glad you found us. Keep up the good fight. Blessings, Blueroses.

vicken said:

chemotherapy induced cataracts
Be sure and follow up on all eye problems with a good optomotrist or opthomologist. My husband had an eye exam 14 months ago, and all was well. He began having blurred vision, problems with depth perception, etc. Went back for check up and he has advanced cataracts in both eyes. Dr. says chemo and steroids accompanying chemo can accelerate cataracts in otherwise healthy eyes.

He also has neurological damage - tingling feet and hands, severe cramps in muscles and joints, cognitive thinking, memory lapses, etc.

The good news is he has been in remission for a year and a half. Goes for PET in May.

Hey Vicken
I too have eye issues like the rest here after chemo and radiation but before I had my radiation treatments the radiologist was talking about side effects and one of them was 'you could get early cataracts' from the radiation - mine was total body so it was to the eyes too. He also pointed to early arthritis from it but didn't mention dry eyes. Just thought I would mention it. Blessings, Blueroses

vicken said:

chemotherapy induced cataracts
Be sure and follow up on all eye problems with a good optomotrist or opthomologist. My husband had an eye exam 14 months ago, and all was well. He began having blurred vision, problems with depth perception, etc. Went back for check up and he has advanced cataracts in both eyes. Dr. says chemo and steroids accompanying chemo can accelerate cataracts in otherwise healthy eyes.

He also has neurological damage - tingling feet and hands, severe cramps in muscles and joints, cognitive thinking, memory lapses, etc.

The good news is he has been in remission for a year and a half. Goes for PET in May.

Radiation and cataracts too
I had total body radiation as part of my bone marrow transplant and before the radiation they told me that early cataracts could very possibly surface - which they did. Also early arthritis was another one he pointed out - yup got that. I saw a Memory Disorder Clinic last week regarding cognitive thinking issues I am having as well as memory lapses etc. I am a 20 year survivor but it has come at a high price for me with many side effects. Sometimes there is a high price to pay for cancer treatments, not for all but for many. Blessings, Blueroses.

Elizabeth1534 said:

tinnitus, face and neck complications from radiation
Hi, I'm new here, but...I had fast neutron radiation to the left side of my head and neck and my oncologist was very upfront about the fact I was going to lose some hearing in my left ear, because the scarring around the small bones near the eardrum and some get tinnitis. And I didn't have chemo, it was just the fast neutron radiation. He wasn't very upfront at all about the other side effects (like losing your teeth, for instance, or getting burning mouth syndrome, but the ear problems he readily admitted to. And as someone else said, foreign medical journals tend to be more accessibly and are often better researched and more easily understood.

I've been having problems with trigeminal neuropathy and neck pain from scarring caused by the 2 surgeries and two bouts of radiation and I was wondering what other people do at home to help it. Most doctors now seem to be more afraid that you are "drug-seeking" than they are about you being in pain. I tried the clonazepam and I had the worst possible reaction that you can have. So I'm looking for things I can do for myself. Any suggestions?

Welcome Elizabeth
Elizabeth. I had 25 radiation treatments to my face. And nothing was said about half my sinus being filled with scar tissue. The massive amount of tooth damage. Or the loss of the little hairs inside the inner ear that made me dizzy for months. later it was a couple yeast infections inside my ear. Holy I had never even heard of that ever happening. And finally my neck started to have a bunch of pain. A Neurologist found that my neck was full of arthritis and falling apart. As the bone was now so brittle from radiation nothing could be done. So living in pain is a constant issue for me and I ended up on disability. Like you I tried many drugs and I found out that my body won't handle the arthritis drugs. I suspect some of my strange side effects came from the chemo. Many people use Neurontin for the pain that involves nerves. They tried it on my face that has damaged nerves. But it was another drug that I could not take even at a low dose. So I live feeling like I have a golf ball under my skin and it does not like cold weather at all. To sleep at night I use Klonopin as a pain blocker. Its used as a seizure and anxiety drug but also does well blocking enough of the pain impulses getting to my brain so I can sleep. So I rotate Vocodin and Oxycondone for pain, Tyleno#3, Motrin 800 and Voltaren for spinal swelling, flexeril and norflex for muscle pain and tightening. And I only take them as needed and each day with my body is different depending on the weather, how I slept and what nerves are getting crushed by my spine. I hope some of this helps. Slickwilly

hodgkoid2003 said:

Cognitive/Memory Issues
Blue Roses,

I realize that I am new to this site, and don't want to step on toes. But I am learning that there are so many who lack, but need information.

I have felt that over the last decade or so, I felt I had memory issues. I had many tell me it was "chemo brain". Not too many doctors take this seriously, but those that do, insist it is during chemo more than anything.

During my heart crisis last year, my cholesteral medication was switched. Really shouldn't be that big of a deal right. You hear and see the side effects because all you have to worry about is what is discussed right?

Recently, I had a brain MRI done, as well as an orally administered test (took 4 hours) to see why over the last year (or as I put it, since I switched cholesterol meds), my memory went south, my cognitive ability went into the tank (I actually almost ran someone over with my vehicle because I didn't react properly), but I also developed irritability and rage issues.

Someone on one of my lists sparked my curiousity by asking if I was on a cholesterol med? And when I told them yes, and that it was a "statin" type drug, well, my wheels started spinning. Now, I must say, I am no doctor, and am definitely not advising anyone to do this as it could be dangerous (not to mention you get a good talking to by your doctor for being so foolish), but I stopped taking my med cold. Within days, my memory returned to normal, and so did my cognitive skills. My brain MRI had been clean, and the other test showed that I did quite well for a male my age (ouch). So, to me, it had to be the med.

I called my doctor to inform her of what I had done. She swore to me that I need to be on some sort of med because of my high numbers. I didn't disagree that I needed something, but, after flipping out repeatedly on my children, for no reason most of the time, and all the other sypmtoms, it was a no-brainer (sorry, didn't mean the pun) that I stop. I have done my homework and at least in my case, believe I have done the right thing.

I guess, what I'm saying, is don't focus on just one area. After reading the insert of my med, getting to the bottom of page 2, of all that small print, there it was. I have personally seen meds affect at least one other person (an in-law) so badly he got diagnosed with Alzheimer's, thrown on psychotropics because his behavior was that bad. Somehow, quit taking everything, went through very bad withdrawals, and a couple days later, came out of everything without any recollection of what happened. The man lost 3 years of his life because of not paying attention to side effects of drugs.

As cancer patients, no one is more aware of side effects of drugs than us.

Again, I must stress, not a doctor, and by no means telling anyone to quit taking meds. I do still have others that I take. But please, if you can't get answers, look everywhere.

Paul E.

Hey Paul
This is a big topic for cancer survivors, many of us are suffering from 'chemo brain' and not just during treatments but long after as well - some not all. I attended a Memory clinic recently and was stunned to hear that they are hearing this from long term survivors like myself which was very validating. I don't have my complete diagnosis yet but at least I know now that I am not the only one experiencing this and that is wonderful to hear - not that I want this side effect of course but the validation is really great to have. Recently I saw a 'rheumatologist' who totally invalidated my aches and pains and put it down to stress and trauma of the cancer trip, he had never met me before but came to that conclusion even though he admitted I had fibromyalgia like symptoms. Isn't that a bit of a contradiction - yes you have something for sure but it's all in your head?

There is a movement afoot, The Lance Armstrong Clinic at Dana Farber is a leader in this, adult survivorship issues for people diagnosed as adults. More and more there are symposiums addressing this subject in survivorship, many can be found online. They openly acknowledge the existance of after effects like chronic fatigue, aches and pains, neuropathies, dental issues and emotional issues as well like PTSD and anxiety.

As the baby boomers age they will be seeing more and more long term survivors with specific health issues from after effects that they will not be able to ignore, the numbers are staggering already. There is a book/report that was done called "From Cancer Patient to Cancer Survivor - Lost in Transition" that I would like to get my hands on.

In Canada we don't have late effects clinics at all so I am trying to get the Lance Armstrong Clinic to send me some good info so I can start spreading the word up here as well. There are several groups like ACOR who put out some good info as well.

Like any relatively new medical need it's going to take time and reporting our symptoms to docs is the first step, after awhile they won't be able to poo poo the medical after effects as easily.

Hope you have a good day Paul. Blessings, Blueroses.

Long term side effects from chemo
Hi,
I haven't been in this room for quite some time. I know that I have experienced several types of long term side effects from my chemo (NHL survivor for 9 years). I told my doctor that I recently starting having muscle twitches in my legs (thigh), she said she didn't know what this was caused from. Last year my tasted buds got what they said was a viral infection and they put me on Valtrex. Everything tasted very bitter, and smelled horrible. Some of it has gone away, but I know it will never be the same. If I close my eyes while standing, I lose my balance and fall forward. I get tingling feelings on my body that come and go, feels like something is crawling on me. Finger tips and toes are numb at the end. I get a lot of skin tags. My heavy muscles are always week. I think I'm gonna die from exhaustion after standing or walking for a short period of time (I feel that everyone things I'm exaggerating). People that do not have cancer tend to not believe what your trying to explain to them what your feeling; that's because you con't look sick. My memory is also being affected, and it's gets worse every year. Sometimes I also do not understand the sequence of events when someone is telling me a story, and I forget what they were even talking about. I forget words so much that it scares me; I stutter a lot, which is something I never did. I always prided myself on my knowledge of the English language, now I'm loosing it. (I'm 59, but I have been doing this since I started chemo 9 years ago.) Sometimes it seems the doctors don't want to hear about it because they have heard from so many other patients, they just don't want to explain it to another patient. They just sit there and look at you like your making it all up; occasionally someone will believe you, then they want to put you through another tests. They know what's causing it. I just shoot em down when they suggest more tests; have too much of that. I should'nt be complaining, I'm still alive aren't I? Yes, I would still take the chemo if I knew what I know now. My son says the other alternative is not acceptable. Well I've vented enough, good luck and bless you all.