Eye problems in survivors? Muscle twitching? Other neurologic issues?
Comments
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Long Term Side Effects...dixie1 said: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.
Dixie1,
I, like so many others, can so relate to your frustrations and fears. I'm not sure where you're located, but I'd like to offer you two suggestions. Seek out a "late effects" clinic. Just to name a few: Sloan Kettering, Stanford, Dana Farber, and more. There are doctors at hospitals such as these that do not ignore the feelings of the cancer survivor. In fact, they know what to look for. And I remember one of the first things mine said to me, "fatigue is normal".
Next, there is a Long Term survivors email support group that I know I have recommended to others here. WWW.ACOR.ORG. You will find a lot of support on this list.
Finally, over the last year, I had been having a lot of cognitive issues (memory, thinking, and emotional/moods - to the point of rage). Though I don't condone this, but I, myself, traced it to a cholesterol drug (a statin) when I had been tipped off about it from another survivor.
Please do not feel alone. There is help out here...
Paul E. (Hodgkoid2003)0 -
Muscular diseaseWid said:Myasthenia Gravis
First of all, thank you all for your responses. I knew I had posted here, but I had forgotten the site, my login info and how to find the thread I initially started. Can you believe that I just found it by googling "Radiation to the spine muscle problems?" haha. I have a question, I look to google for the answer, and I find my question again in the results.
Crazy world we live in.
Fran-- I am very interested in what you're discussing. As you can see from my original post, eye problems and muscle issues are two of my biggest concerns. The fatigue after exertion is intense. Honestly, I am still worried about ALS as weakness + fasiculations + minor atrophy doesn't sound good, but the kind folks on the ALS boards say my symptoms don't sound like that disease either.
I asked one neuro about MG and he said that I would most likely have a drooping eyelid, which I do not have. He also said it's much more common in women. Do you have the eyelid issue?
Hey Wid sorry it has taken a few days to respond but have been under the weather and not ont he site. I will tell you that I do not have the drooping eye lid and never had. My major complaints were the fatigue especially upon exertion and I do have vision problems. It was my pulmonologist who referred me to the neuro and the neuro did a test and it confirmed the MG. I can't remember the name of the test but it is not something I would like to go through again. They insert needles into the muscle of the eye and take individual strands of muscle fiber and stimulate them and the computer records something. Anyway they have to do a huge number of fiber strands and it is one at a time and it is very tenuous and not all the strands of muscle fiber work for the test so they have to keep taking more. The bad part of the test is that there is no sedation! They can't do sedation because they don't want the muscles affected by sedation. It is not unbearable especially considering what most of us have already gone through.
Maybe you could find a neurologist that would do the test for you just to see. The drooping eye lid is common with the disease but not always present! Keep pursuing it.
Fran0 -
Hi Dixiedixie1 said: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.
If you were diagnosed as an adult try and get info on long term survivor issues from The Lance Armstrong Adult Onset Cancer Survivors Clinic at Dana Farber. Many long term effects clinics deal with long term effects for cancers where the person was diagnosed as a child and these kinds of side effects are different in many ways as the child's body was still growing when it was hit with cancer treatments. But the Lance Armstrong Clinic deals with those of us diagnosed as adults and have alot of valuable info. Take care, Blessings, Blueroses.0 -
Long Term Side Effectshodgkoid2003 said:Long Term Side Effects...
Dixie1,
I, like so many others, can so relate to your frustrations and fears. I'm not sure where you're located, but I'd like to offer you two suggestions. Seek out a "late effects" clinic. Just to name a few: Sloan Kettering, Stanford, Dana Farber, and more. There are doctors at hospitals such as these that do not ignore the feelings of the cancer survivor. In fact, they know what to look for. And I remember one of the first things mine said to me, "fatigue is normal".
Next, there is a Long Term survivors email support group that I know I have recommended to others here. WWW.ACOR.ORG. You will find a lot of support on this list.
Finally, over the last year, I had been having a lot of cognitive issues (memory, thinking, and emotional/moods - to the point of rage). Though I don't condone this, but I, myself, traced it to a cholesterol drug (a statin) when I had been tipped off about it from another survivor.
Please do not feel alone. There is help out here...
Paul E. (Hodgkoid2003)
Thank you Paul for the support group e-mail; I will give it a try. I appreciate your help. I do take a drug for cholestoral called Lipitor, but I really believe my side effects are caused from the chemo. My side effects get worse with every treatment. Bless you in your battle with cancer.0 -
Long Term Side Effectsblueroses said:Hi Dixie
If you were diagnosed as an adult try and get info on long term survivor issues from The Lance Armstrong Adult Onset Cancer Survivors Clinic at Dana Farber. Many long term effects clinics deal with long term effects for cancers where the person was diagnosed as a child and these kinds of side effects are different in many ways as the child's body was still growing when it was hit with cancer treatments. But the Lance Armstrong Clinic deals with those of us diagnosed as adults and have alot of valuable info. Take care, Blessings, Blueroses.
Hi Blueroses:
I was diagnosed as an adult 9 years ago. My side effects get worse every year because I have chemo at least once a year or more due to recurrence. The last three chemo treatments have consisted of the treatment they use at the beginning which is the strongest. My body never has a chance to recover, before I am back in treatment within 3 months to 10 months. I will look further into how to deal with my long term effects. I just entered this message board to share and compare my side effects with other long term survivors. Thank you for your help and you also take care. Bless you.0 -
Does any one have crawling
Does any one have crawling skin I get it so bad some times I just don't know what to do.0 -
Boy, can I relate to yourdixie1 said: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.
Boy, can I relate to your post I have felt all the symptoms you have mentioned and yes we are still alive, but what the treatments have done to our bodies is alive too. What I am seeing and hearing in here though is just about all our symptoms and side effects are also consider auto immune disorders. I have Meneires. Bell Palsy, Tick bite Lymes DIsease and its side effects and they are all classified as auto-immune diseases. Can't help but think that they are all related, most of us with this cancer Hodgkins, have suffererd at some time from a auto immune disease. Looks like this would lead to some research on the connection. True, doctors do not understand nor want to hear us complain, they ask how you are but they are wanting you to say find and not question anything. All they suggeast are more test and I for one can not afford any more. They are wanting a CT scan but I have had all the radiation I want, and no money to have any more. No one told me a thing about what it would do to your teeth, I guess they feel if they tell you the truth, you might not want it. And some days they are right.0 -
CrawlingCatherine_2004 said:Does any one have crawling
Does any one have crawling skin I get it so bad some times I just don't know what to do.
Hello Catherine,
Just a note about crawling skin. I get that occasionally, but I know from whence it comes (for me). It turns out that most types of antihistamines cause this effect on me. AND, it turns out that one of the most prescribed anti-nausea drugs for chemo patients has a very similar effect on me, promethazine. There is another name for it that I can't recall right now also. I brought this up in case you hadn't thought to look at the meds that you are taking to determine if any could be causing this.
Personally, I can't stand the skin crawl and had to highly limit my use of certain drugs like that while I was on chem.
Best of luck in solving your issue.
Tom (DLBCL-Stage 4-7/10-Remission)0 -
Crawling and itching skinCatherine_2004 said:Does any one have crawling
Does any one have crawling skin I get it so bad some times I just don't know what to do.
Hi Catherine,
I am not sure if your problem is related to any treatmnet you might have had.
I used to get the very same thing, only once in awhile. I figured out what was causing this terrible feeling. Now, I purchase only 100% suprema cotton nightgowns, blouses, house dresses, beach cover-ups, etc. My blankets, and sheets are all 100% cotton, 400 count and above. I love quilts on my beds. All my quilts on all my beds are 100$ cotton cover and fill. You will note the less expensive quilts, have 100% cotton cover, but polyester fill. I hate polyester anything. Just saying the word makes me itch. The price of cotton will be increasing this year. I understand some of the manufacturers will be adding something else with the cotton to save money. Still, I am sure there will be better products, higher cost.
I know the cost is so much higher. For me, it's worth it. Everything lasts and looks so much better, even after years of wear.
Not sure if the above helps you. Good luck. I hope you feel so much better.
Love Maggie0 -
Side effect
Hi! I am a 10 year Hodgkins survivor and yes- there are long term effects. I notice some eye issues about 2 years into remission. I have been told it is called an ocular migrain. It doesnt hurt but is funky. If I go into bright sun without sun glasses, I will star seeing a bright "wiggling" worm. Thats what I call it-LOL. It is like a burst of light shaped like a wiggling jagged worm in my eyes and it continues into both eyes until I have tunnel vision - can only see strait in front of me and it is black every where else. After about 30 mins it goes away. I have learned to wear sun glasses- even on rainy days and NOT to look at the computer too long. I also am beginning to have heart issues. I am only 42 but because the pressure the tumor put on my heart, I am having valve issues. Nothing that needs immediate attention yet- but is sure to come. Still, I have been given a second chance at life and we now have 5 year old who is my joy. I will take 100 health problems as long as it doesnt inclue cancer again and as long as I can see my child grow up to be atleast 20:) Robin0 -
Side effect
Hi! I am a 10 year Hodgkins survivor and yes- there are long term effects. I notice some eye issues about 2 years into remission. I have been told it is called an ocular migrain. It doesnt hurt but is funky. If I go into bright sun without sun glasses, I will star seeing a bright "wiggling" worm. Thats what I call it-LOL. It is like a burst of light shaped like a wiggling jagged worm in my eyes and it continues into both eyes until I have tunnel vision - can only see strait in front of me and it is black every where else. After about 30 mins it goes away. I have learned to wear sun glasses- even on rainy days and NOT to look at the computer too long. I also am beginning to have heart issues. I am only 42 but because the pressure the tumor put on my heart, I am having valve issues. Nothing that needs immediate attention yet- but is sure to come. Still, I have been given a second chance at life and we now have 5 year old who is my joy. I will take 100 health problems as long as it doesnt inclue cancer again and as long as I can see my child grow up to be atleast 20:) Robin0 -
Side effect
Hi! I am a 10 year Hodgkins survivor and yes- there are long term effects. I notice some eye issues about 2 years into remission. I have been told it is called an ocular migrain. It doesnt hurt but is funky. If I go into bright sun without sun glasses, I will star seeing a bright "wiggling" worm. Thats what I call it-LOL. It is like a burst of light shaped like a wiggling jagged worm in my eyes and it continues into both eyes until I have tunnel vision - can only see strait in front of me and it is black every where else. After about 30 mins it goes away. I have learned to wear sun glasses- even on rainy days and NOT to look at the computer too long. I also am beginning to have heart issues. I am only 42 but because the pressure the tumor put on my heart, I am having valve issues. Nothing that needs immediate attention yet- but is sure to come. Still, I have been given a second chance at life and we now have 5 year old who is my joy. I will take 100 health problems as long as it doesnt inclue cancer again and as long as I can see my child grow up to be atleast 20:) Robin0 -
Side effect
Hi! I am a 10 year Hodgkins survivor and yes- there are long term effects. I notice some eye issues about 2 years into remission. I have been told it is called an ocular migrain. It doesnt hurt but is funky. If I go into bright sun without sun glasses, I will star seeing a bright "wiggling" worm. Thats what I call it-LOL. It is like a burst of light shaped like a wiggling jagged worm in my eyes and it continues into both eyes until I have tunnel vision - can only see strait in front of me and it is black every where else. After about 30 mins it goes away. I have learned to wear sun glasses- even on rainy days and NOT to look at the computer too long. I also am beginning to have heart issues. I am only 42 but because the pressure the tumor put on my heart, I am having valve issues. Nothing that needs immediate attention yet- but is sure to come. Still, I have been given a second chance at life and we now have 5 year old who is my joy. I will take 100 health problems as long as it doesnt inclue cancer again and as long as I can see my child grow up to be atleast 20:) Robin0 -
Side effect
Hi! I am a 10 year Hodgkins survivor and yes- there are long term effects. I notice some eye issues about 2 years into remission. I have been told it is called an ocular migrain. It doesnt hurt but is funky. If I go into bright sun without sun glasses, I will star seeing a bright "wiggling" worm. Thats what I call it-LOL. It is like a burst of light shaped like a wiggling jagged worm in my eyes and it continues into both eyes until I have tunnel vision - can only see strait in front of me and it is black every where else. After about 30 mins it goes away. I have learned to wear sun glasses- even on rainy days and NOT to look at the computer too long. I also am beginning to have heart issues. I am only 42 but because the pressure the tumor put on my heart, I am having valve issues. Nothing that needs immediate attention yet- but is sure to come. Still, I have been given a second chance at life and we now have 5 year old who is my joy. I will take 100 health problems as long as it doesnt inclue cancer again and as long as I can see my child grow up to be atleast 20:) Robin0 -
Side effect
Hi! I am a 10 year Hodgkins survivor and yes- there are long term effects. I notice some eye issues about 2 years into remission. I have been told it is called an ocular migrain. It doesnt hurt but is funky. If I go into bright sun without sun glasses, I will star seeing a bright "wiggling" worm. Thats what I call it-LOL. It is like a burst of light shaped like a wiggling jagged worm in my eyes and it continues into both eyes until I have tunnel vision - can only see strait in front of me and it is black every where else. After about 30 mins it goes away. I have learned to wear sun glasses- even on rainy days and NOT to look at the computer too long. I also am beginning to have heart issues. I am only 42 but because the pressure the tumor put on my heart, I am having valve issues. Nothing that needs immediate attention yet- but is sure to come. Still, I have been given a second chance at life and we now have 5 year old who is my joy. I will take 100 health problems as long as it doesnt inclue cancer again and as long as I can see my child grow up to be atleast 20:) Robin0 -
Side effect
Hi! I am a 10 year Hodgkins survivor and yes- there are long term effects. I notice some eye issues about 2 years into remission. I have been told it is called an ocular migrain. It doesnt hurt but is funky. If I go into bright sun without sun glasses, I will star seeing a bright "wiggling" worm. Thats what I call it-LOL. It is like a burst of light shaped like a wiggling jagged worm in my eyes and it continues into both eyes until I have tunnel vision - can only see strait in front of me and it is black every where else. After about 30 mins it goes away. I have learned to wear sun glasses- even on rainy days and NOT to look at the computer too long. I also am beginning to have heart issues. I am only 42 but because the pressure the tumor put on my heart, I am having valve issues. Nothing that needs immediate attention yet- but is sure to come. Still, I have been given a second chance at life and we now have 5 year old who is my joy. I will take 100 health problems as long as it doesnt inclue cancer again and as long as I can see my child grow up to be atleast 20:) Robin0
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