20 Plus years after radiation

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.

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.

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.

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 !!!!

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.

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.

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.

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!

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.

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. 

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.