20 Plus years after radiation

oscarm

neuropathy
I have what I would call sunburn like feeling in radiation area. I'm looking for cures, help. Nerve damage is diagnosis. I've tried various drugs like nerontin, lyrica, tripylene. Someone told me to try infrared light treatments. I'm looking for help too.

wetz5526

oscarm said:

neuropathy
I have what I would call sunburn like feeling in radiation area. I'm looking for cures, help. Nerve damage is diagnosis. I've tried various drugs like nerontin, lyrica, tripylene. Someone told me to try infrared light treatments. I'm looking for help too.

23 years after radiation
I was diagnosed with lumbar sacral radiation plexopathy this past year as a result of radiation treatment I had 23 years ago for colorectal cancer. My symptoms are: buzzing, tightening, twitching and aching in my legs from my butt down to the tips of my toes. I do not have a "sunburn" feeling tho. It's awful because it's always there - during the day it's more tolerable as I'm busy working, running errands etc., but at night it's just awful. My Neurologist put me on gabapentin but I've had a hard time tolerating it. I get terrible headaches and backaches when I try to increase the amount (I'm currently on a very low dose). I'm going to see about trying lyrica. I also take vicodin which does help in calming down the legs expecially at night. I have also seen an accupuncturist which does help but only for a few days. I would be very interested in finding articles about late effects of radiation but they sure seem hard to come by. From what I've found so far, its pretty rare and there is not a lot out there as far as treatment for it. I would sure like to know what I have to look forward to...or not. I too am looking for any help as this nerve pain is just awful to deal with - makes you feel like you're going crazy.

bluerose

oscarm said:

neuropathy
I have what I would call sunburn like feeling in radiation area. I'm looking for cures, help. Nerve damage is diagnosis. I've tried various drugs like nerontin, lyrica, tripylene. Someone told me to try infrared light treatments. I'm looking for help too.

Hi Oscam
I don't know of anything that helps nerve damage but haven't investigated it thoroughly yet but do have it and my docs havent mentioned much to help.

I am sharing a couple of things about it. I have pain pretty much 24/7 and one of the newer diagnosis was fibromyalgia which personally I think can be linked to treatments too for some. See a rheumatologist and see if you have fibro.

Secondly something that helps me is a tempur pedic bed. I must have sent back 7 mattresses of various kinds cause I could feel every freakin spring in even top end mattresses - I truly felt like the princess and the pea - that children's story. Anywho I bought a tempur pedic mattress and I now can sleep through the night with no pressure point pain so I don't wake up as often. I think you can try out the tempurs because they are quite expensive so you might think about that. With fibro just being touched on the leg in some spots or arms is excrutiating and can be likened to nerve pain. Also my feet are always like ice cubes. I thought that was poor circulation but my doc said, no it's nerve damage symptoms too. I put socks on when I go to bed and that helps that cold pain too.

This sounds crazy but I get some relief from the nerve pain from plain old extra strength tylenol too. I take 2 of those as directed on the label and I tell you it helps me. Ask your doc if you can handle tylenol, your meds might not allow you to take it so best to check first.

Anywho, I hope you get some relief with some of this that works for me or through other avenues other might suggest.

Blessings,

Bluerose

wendyleigh27

brian50 said:

25 Years + Bone Marrow Transplant Surviviors
Hi,

Any members have a transplant at least 25 years ago,if so i'd like to hear how you are and how life has been in general

Kind Regards

Brian.

me too
Hi ya Brian-

Yes 25 ++years post transplant (1985) my senior year of high school- had total body radiation so fortunate my older bro was a perfect match

like others have the side effects more recently

HEP C - 1997

follicular thyroid cancer 3 years ago - thyroid removed and RAI

now salivary gland cancer surgery is set for Wednesday - they tell me this might not be due to Total Body radiation

would love to talk to others - for I try to stay hopeful !!!!

dallen1

20 years plus
Hi Alan, Hello all. In 1979 I was told I had a lemon size brain tumor which had malignant tendencies the tumor was removed. I also was told I would have to go thru radition treatments. Now 29 yesars later I have had in the last two years Basal cell skin cancer on my hesd the cancer has been removed and is now a non factor. Then Thyroid cancer was detected and the thyroid was removed along with routine follw ups. Squemous cell cancer was then found in the left ear canal. The cancer,ear canal and ear drum were removed and replaced with a new ear canal and ear drum made from a skin graph from my hip. Cancer returned to my new ear canal and has been removed again along with routine follow ups. The two later cancers are believed to be a direct result of my past radition treatments. Radition is a mother but without it you and I probably would not be sitting here with smiles on our face. I too have had all the common side effects that go along with being around for a while after radition, but we are still on the green side stay positive and good luck to you all.

dmarie725

brian50 said:

25 Years + Bone Marrow Transplant Surviviors
Hi,

Any members have a transplant at least 25 years ago,if so i'd like to hear how you are and how life has been in general

Kind Regards

Brian.

BMT
Hi,

Did you have a bone marrow transplant 25 years ago?? If so, congratulations, that is amazing!

My husband had a bone marrow transplant about 9 years ago. I consider him a long-term survivor of his transplant, but it is really great hearing of even longer. How have you been since your transplant? I've been thinking about his transplant a lot lately (not sure why)...I think sometimes it seems almost impossible that you could have something like that done and go on to live a normal life. I think it's definitely helpful to hear from people like you.

palmyrafan

dallen1 said:

20 years plus
Hi Alan, Hello all. In 1979 I was told I had a lemon size brain tumor which had malignant tendencies the tumor was removed. I also was told I would have to go thru radition treatments. Now 29 yesars later I have had in the last two years Basal cell skin cancer on my hesd the cancer has been removed and is now a non factor. Then Thyroid cancer was detected and the thyroid was removed along with routine follw ups. Squemous cell cancer was then found in the left ear canal. The cancer,ear canal and ear drum were removed and replaced with a new ear canal and ear drum made from a skin graph from my hip. Cancer returned to my new ear canal and has been removed again along with routine follow ups. The two later cancers are believed to be a direct result of my past radition treatments. Radition is a mother but without it you and I probably would not be sitting here with smiles on our face. I too have had all the common side effects that go along with being around for a while after radition, but we are still on the green side stay positive and good luck to you all.

15 Years Plus for Radiation Therapy
Hi all,

I have multiple meningiomas that were resected in 1994. They were located throughout my brain, skull base, the 4 major sinus cavities, carotid artery and left optic nerve. I had surgery at the Cleveland Clinic followed by traditional radiation therapy in 1996.

I was told at the time, that not only were short-term side effects possible but to expect long-term side effects as well. I have cognitive issues, memory problems and I get frustrated easily. I was recently diagnosed with hypothyroidism and adrenal gland issues. The doctors told me this was caused by the radiation therapy and I will have to be on Synrhroid and Prednisone the rest of my life. I am only 49. After radiation in 1996, I immediately went through menopause (I was only 34) but luckily the doctors don't want to put me on HRT (hornome replacement therapy).

My tumors have also come back in the same places that were radiated. So for me, the radiation didn't work the first time and unfortunately, where I need it the most, at the optic nerve and optic nerve chiasm, I have maxed out. Can't have any more radiation. If I do, I stand a 60-70% chance of losing my vision.

The tumors have also fused into the left eustacian tube, left jaw bone and have almost destroyed my hearing.

We have been told that I am a candidate for radiation at the skull base and carotid artery but we have decided to take a pass on that. I'm one of those that is more interested in Quality of Time vs. Quantity of Time. I'd rather have 10 years of reasonably good health doing the W&W (watch and wait) rather than 20 years of crappy health because I had more radiation.

brian50

wendyleigh27 said:

me too
Hi ya Brian-

Yes 25 ++years post transplant (1985) my senior year of high school- had total body radiation so fortunate my older bro was a perfect match

like others have the side effects more recently

HEP C - 1997

follicular thyroid cancer 3 years ago - thyroid removed and RAI

now salivary gland cancer surgery is set for Wednesday - they tell me this might not be due to Total Body radiation

would love to talk to others - for I try to stay hopeful !!!!

How are you
Hi Wendy,

Hope this finds you well,

just read your post from Feb2011,how did your recent surgery go ?

I like you Wendy am a long term bone marrow transplant survivor,got mine from my youngest sister she was a perfect match. Mine was carried out at Glasgow ,Scotland 24 years ago. I was 27 years old and was being treated for Acute Myloid Leukaemia.

I am 51 years old and in full time employment,no other cancers to date that I know of anyway,short term memory is really bad though.

Have you managed to work,have a near normal life e.t.c , would like to know how things have been.

bluerose

dmarie725 said:

BMT
Hi,

Did you have a bone marrow transplant 25 years ago?? If so, congratulations, that is amazing!

My husband had a bone marrow transplant about 9 years ago. I consider him a long-term survivor of his transplant, but it is really great hearing of even longer. How have you been since your transplant? I've been thinking about his transplant a lot lately (not sure why)...I think sometimes it seems almost impossible that you could have something like that done and go on to live a normal life. I think it's definitely helpful to hear from people like you.

23 years ago after bone marrow transplant here
Yes I had a bone marrow transplant 23 years ago for non hodgkins lymphoma. It was an autologus transplant meaning they took my own marrow then jetted it back into me after I was treated. I had total body rads as well.

Suffering many side effects that seem to keep building and now they recognize them as side effects but even 10 years ago they looked at me as if I had 3 heads, which I still might see due to all the rads, lol.

Hey if you don't have a sense of humour with it all then you really have problems.

All the best to all of you long term survivors.

Blessings,

Bluerose

bluerose

palmyrafan said:

15 Years Plus for Radiation Therapy
Hi all,

I have multiple meningiomas that were resected in 1994. They were located throughout my brain, skull base, the 4 major sinus cavities, carotid artery and left optic nerve. I had surgery at the Cleveland Clinic followed by traditional radiation therapy in 1996.

I was told at the time, that not only were short-term side effects possible but to expect long-term side effects as well. I have cognitive issues, memory problems and I get frustrated easily. I was recently diagnosed with hypothyroidism and adrenal gland issues. The doctors told me this was caused by the radiation therapy and I will have to be on Synrhroid and Prednisone the rest of my life. I am only 49. After radiation in 1996, I immediately went through menopause (I was only 34) but luckily the doctors don't want to put me on HRT (hornome replacement therapy).

My tumors have also come back in the same places that were radiated. So for me, the radiation didn't work the first time and unfortunately, where I need it the most, at the optic nerve and optic nerve chiasm, I have maxed out. Can't have any more radiation. If I do, I stand a 60-70% chance of losing my vision.

The tumors have also fused into the left eustacian tube, left jaw bone and have almost destroyed my hearing.

We have been told that I am a candidate for radiation at the skull base and carotid artery but we have decided to take a pass on that. I'm one of those that is more interested in Quality of Time vs. Quantity of Time. I'd rather have 10 years of reasonably good health doing the W&W (watch and wait) rather than 20 years of crappy health because I had more radiation.

They are recognizing our plight slowly
Over the last 24 years of my journey with cancer I have seen so many changes. In the first few years I was reporting all kinds of neuropathies and other medical issues that I KNEW were based in the treatments I had but there was no validation from the docs about it all then. Today they are even using words that we coined like 'chemo brain' and validate the effects of chemo drugs and radiation. Many of us were looked at like we had 3 eyes when we reported side effects way back when.

Ya ya I know, they didn't know, hmmm - the jury isn't in on that yet that I have heard but they are seeing more and more of us with the same complaints so now those who follow us are being validated more, right off the bat. That's a good thing.

But, what about us? We who have been subjected to invalidation for so many years - it can take it's toll. Just sayin, just being honest.

I am alright with it all now after all of this time, content to think 'it is what it is' and to trust my instincts more. I am taken way more seriously now that my docs have seen so many of us repeating the same things, same side effects over and over.

Validation is so important to our healing, better late than never. Right? Right, um, I think. lol.

Blessings,

Bluerose

sassy62

Long term radiation survivor
I'm a very long-term survivor of radiation. I had 2 operations for removal of astrocytomas near the cerebellum in 1959 and 1961. After the second surgery, I was given 6 weeks of cobalt radiation. (I was 11-12 at the time). I lost all the hair on the back of my head. I very hard thing for a 12 year old going into teens to deal with). But I went on with my life as best as I could. Went to college, married, had 2 terrific kids. Started losing my hearing 20 years after treatments (and yes, it is related to the radiation). After 3 grandsons and retirement, I thought that all was all behind me. Wrong ! A memenginona was found last month near the brain stem. It is benign, so I am told. I will be starting with CyberKnife treatments (concentrated and positioned radiation) in 2 weeks. The difficult part is they must be careful not to irradiate parts of my brain that were already treated with radiation. But I was also told that tumors will often occur near places that had been radiated before. Oh, gee. I really wanted to know that!

sassy62

genenie said:

Yup. I also had radiation (and chemo) as a toddler over 25 years ago to treat a neuroblastoma. I continue to face the side-effects. Its like the gift that keeps on giving:) I am thankfully healthy, with no recurrance of the cancer. However, I too am interested to know if there are others out there who have found ways to address the long-lasting effects. My doctors haven't been able to be that helpful.

20 years plus
Ha ! I call my radiation the "Gift that takes on taking." Mine timor was an astocutoma near the cerebellum. Radiation afterwards took the hair on the back of my head. 20 years after that I started losing my hearing. And now, IT'S BACK. A different kind of tumor and benign, but related to radiatio (?). That'swhat the docs are telling me.

sassy62

2manyrads said:

Radiated as an Infant

As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and children were given radiation treatments that would later result in many developing both cancer and radiation-induced heart disease. My mother—as no doubt many other mothers—held me on her lap, to make it easier for the radiologist to administer the x-rays. The cancer she developed from her own exposure to the radiation that passed through my 5 month old body to hers, was one of the causes of her death many years later. After surviving leukemia at age four, I spent the next thirty years in and out of hospitals for illnesses that seemed to have no identifiable cause. When my mother was diagnosed with a cancer the oncologist told her could only have come from exposure to large doses of radiation, she explained she had never been in that situation even as an emergency room nurse at Bellevue Hospital in Manhattan. After further questioning from the doctor she remembered our experience with x-ray treatments. The doctor said he’d studied in med school that erroneous diagnosis and x-ray treatment. He said, I assume your son died a long time ago since he received the bulk of the ionizing radiation. No, she told him. My son has had a lifetime of serious illnesses, including being placed at one time under hospice care for over four years. The doctor told her to call me and for me to get to an endocrinologist immediately because I most certainly had thyroid cancer. I did as told and the endocrinologist said he could see from across the room that I had an abnormal thyroid. It turned out to be Stage 3 metastasized thyroid cancer. After a thyroidectomy and radiation treatments (ironically to treat what had caused the disease in the first place) I slowly recovered. I take synthroid that is carefully monitored for correct dosage and the devastating symptoms caused by my thyroid cancer have been controlled. 

Radiaton as a tween
Wow. And I thought I had the record for the number of years since having radiation treatments. This web-site is a real eye-opener for me. I had my radiation in 1961-62 at the age of 11 - 12 years. It was cobalt. It was post-operative treatment for an astrocytoma near the cerebellum I'm now 61 years old and ab out to have CyberKnife radiation treatments for a menenginome.

wendyleigh27

brian50 said:

How are you
Hi Wendy,

Hope this finds you well,

just read your post from Feb2011,how did your recent surgery go ?

I like you Wendy am a long term bone marrow transplant survivor,got mine from my youngest sister she was a perfect match. Mine was carried out at Glasgow ,Scotland 24 years ago. I was 27 years old and was being treated for Acute Myloid Leukaemia.

I am 51 years old and in full time employment,no other cancers to date that I know of anyway,short term memory is really bad though.

Have you managed to work,have a near normal life e.t.c , would like to know how things have been.

hello Brian

My life has been well even with the many secondary cancers- I was wroking full time in the non profit world until about a year ago and realized life is too short to sit at a desk

so I started working with kids after school care

surgery went well and am finishing up with my radiation treatment in 3 days!! yipee!!

I try to count my blessings every day

Best to you

brian50

wendyleigh27 said:

hello Brian

My life has been well even with the many secondary cancers- I was wroking full time in the non profit world until about a year ago and realized life is too short to sit at a desk

so I started working with kids after school care

surgery went well and am finishing up with my radiation treatment in 3 days!! yipee!!

I try to count my blessings every day

Best to you

Hi Wendy
Sounds like you've had a bit of a hard time but you keep positive and are grateful with the cards you've been dealt.Do you still manage to party at the weekends,like you said life is to short to sit around moping ,we all need to get out and enjoy life and have as much fun as we can.

All the best

Brian.

ASG

sassy62 said:

Long term radiation survivor
I'm a very long-term survivor of radiation. I had 2 operations for removal of astrocytomas near the cerebellum in 1959 and 1961. After the second surgery, I was given 6 weeks of cobalt radiation. (I was 11-12 at the time). I lost all the hair on the back of my head. I very hard thing for a 12 year old going into teens to deal with). But I went on with my life as best as I could. Went to college, married, had 2 terrific kids. Started losing my hearing 20 years after treatments (and yes, it is related to the radiation). After 3 grandsons and retirement, I thought that all was all behind me. Wrong ! A memenginona was found last month near the brain stem. It is benign, so I am told. I will be starting with CyberKnife treatments (concentrated and positioned radiation) in 2 weeks. The difficult part is they must be careful not to irradiate parts of my brain that were already treated with radiation. But I was also told that tumors will often occur near places that had been radiated before. Oh, gee. I really wanted to know that!

Hearing Loss
Hi all of you who have had hearing loss,

Please tell me/us how you have dealt with the hearing loss?
I have been to a few hearing specialist who tell me My hearing loss (based on two years of audiology test results), is completely unique. They haven't seen another patient with this problem. (all of them are aware I am a long term, 37 years, survivor of astrocytoma) But I guess my doctors haven't seen any of you. This hearing loss is maddening, my insurance doesn't cover hearing aids, and do hearing aids work for this type of hearing loss in any of your experiences? Advice anyone?

Mary

brian50

ASG said:

Hearing Loss
Hi all of you who have had hearing loss,

Please tell me/us how you have dealt with the hearing loss?
I have been to a few hearing specialist who tell me My hearing loss (based on two years of audiology test results), is completely unique. They haven't seen another patient with this problem. (all of them are aware I am a long term, 37 years, survivor of astrocytoma) But I guess my doctors haven't seen any of you. This hearing loss is maddening, my insurance doesn't cover hearing aids, and do hearing aids work for this type of hearing loss in any of your experiences? Advice anyone?

Mary

20 Plus years after radiation and brittle bones
Any long term survivors been diagnosed with brittle bones,I am due to get a bone scan tommorow.

blake001

brian50 said:

20 Plus years after radiation and brittle bones
Any long term survivors been diagnosed with brittle bones,I am due to get a bone scan tommorow.

radiation head
hi all i has non hodgikins disease bcell lympfoma on my head in 1989 had lazer surgery radiation n chemo they promised me my hair will grow back never did i have a scar from oneside of my head to other i had to get extended radiation days because i got to tired after a week of radiation i was at mamomamadies hospital in brooklyn ny.. cant spell lol in 2005 discoved that from radiation on head n neck developed non cancerous nodules in my throat i lost all my teeth from the radiation it just fell out lol i have continous dry throat took me 6 res to say screw it im not wearing a hat no more finally the intense scalp itching stopped was going on for mre than 10 yrs after radiation ..

dallen1

2manyrads said:

Radiated as an Infant

As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and children were given radiation treatments that would later result in many developing both cancer and radiation-induced heart disease. My mother—as no doubt many other mothers—held me on her lap, to make it easier for the radiologist to administer the x-rays. The cancer she developed from her own exposure to the radiation that passed through my 5 month old body to hers, was one of the causes of her death many years later. After surviving leukemia at age four, I spent the next thirty years in and out of hospitals for illnesses that seemed to have no identifiable cause. When my mother was diagnosed with a cancer the oncologist told her could only have come from exposure to large doses of radiation, she explained she had never been in that situation even as an emergency room nurse at Bellevue Hospital in Manhattan. After further questioning from the doctor she remembered our experience with x-ray treatments. The doctor said he’d studied in med school that erroneous diagnosis and x-ray treatment. He said, I assume your son died a long time ago since he received the bulk of the ionizing radiation. No, she told him. My son has had a lifetime of serious illnesses, including being placed at one time under hospice care for over four years. The doctor told her to call me and for me to get to an endocrinologist immediately because I most certainly had thyroid cancer. I did as told and the endocrinologist said he could see from across the room that I had an abnormal thyroid. It turned out to be Stage 3 metastasized thyroid cancer. After a thyroidectomy and radiation treatments (ironically to treat what had caused the disease in the first place) I slowly recovered. I take synthroid that is carefully monitored for correct dosage and the devastating symptoms caused by my thyroid cancer have been controlled. 

effects
Although not quite a child at the age of 19.I was playing center field when
the deep fly ball struck my face just below the left eye. With concerns of broken facial bones x-rays were taken which revealed a lemon size brain tumor. The tumor was removed and finding the tumor shown malignant tendencies I was given what was said to be 6 weeks of high voltage radiation. Now at the age of 51 I have had 4 brain tumors and 3 different cancers, the Squamous cell in my middle ear has resulted in 3 operations all replacing ear drum and cannal along with bone. This is all believed to be the effect of radiation from over 30 years ago

15plusmore

2manyrads said:

Radiated as an Infant

As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and children were given radiation treatments that would later result in many developing both cancer and radiation-induced heart disease. My mother—as no doubt many other mothers—held me on her lap, to make it easier for the radiologist to administer the x-rays. The cancer she developed from her own exposure to the radiation that passed through my 5 month old body to hers, was one of the causes of her death many years later. After surviving leukemia at age four, I spent the next thirty years in and out of hospitals for illnesses that seemed to have no identifiable cause. When my mother was diagnosed with a cancer the oncologist told her could only have come from exposure to large doses of radiation, she explained she had never been in that situation even as an emergency room nurse at Bellevue Hospital in Manhattan. After further questioning from the doctor she remembered our experience with x-ray treatments. The doctor said he’d studied in med school that erroneous diagnosis and x-ray treatment. He said, I assume your son died a long time ago since he received the bulk of the ionizing radiation. No, she told him. My son has had a lifetime of serious illnesses, including being placed at one time under hospice care for over four years. The doctor told her to call me and for me to get to an endocrinologist immediately because I most certainly had thyroid cancer. I did as told and the endocrinologist said he could see from across the room that I had an abnormal thyroid. It turned out to be Stage 3 metastasized thyroid cancer. After a thyroidectomy and radiation treatments (ironically to treat what had caused the disease in the first place) I slowly recovered. I take synthroid that is carefully monitored for correct dosage and the devastating symptoms caused by my thyroid cancer have been controlled. 

Radiated as an infant

1998, full body radiation and bone Marrow transplant at 10 months of age. (rare and unknown cancer which ate all the bone marrow- 7 draws only produced 6 cells).  2013 is 15th yr. of cancer survivor.  Fairly heathy, but significant oral, dental issues.......lack of adult teeth present, spacers in use, root cannals, fillings, crowns needed.  16 yrs old.  They are seeing patches on thyroid and monitoring it, have undeveloped cateracts, growth is stunted and plataued at 5ft. School very difficult-memory issues and frustration.Thank you for beginning to write a book, as there is little information on bmt's or radiation of babies and the long term effects.