20 Plus years after radiation

Hi All,

just a quick post, I'm doing well at present, no health issues. My son left school this year and is at college studying Petroleum Engineering.Doesn't time fly.

HI Alan! I am new to this site.  I also had radiation for Hodgkin's (in 1989).  I then had breast cancer in 2009.  I am having lots of effects of the radiation as well.  (bowel obstructions, thyroid nodules, heart problems and bone changes).  I'm 41 years old and recently feeling 101 years old!  Although you're a much "longer term survivor", I see what you're going through.  Do you have a doctor or doctors who are knowklegable about the long term effects of radiation? This is where I'm having trouble...they just don't have experience with this.

I am a 53 years cancer cured. Born with Wilms Tumor - treated with Radiation. I am new here but I am so happy to read your stories. They all inspire me because I can relate to something in each post (well, almost). Frankly, just to find this was pure vindication - IT'S NOT IN MY HEAD! I'm not afraid more like empowered now. I live in Southern Colorado and am now on the lookout for long/late term effects professionals. Any advice?

Btw, congratulations on your survival.

wetz5526 said:

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.

I have been diagnosed with Lumbar Plexopathy 12 years after cancer treatment including radiation... There is so little info and Iam ata loss as to what todo other than walking and gentle exercise to keep things going.. Fortunately Ido not have pain but the severe pins and needles and numbness and weakness in legs.. I also have Lymphoedema as a side effect but this stated straight after Ifinished treatment... How areyougoing since diagnosis?? Helen

mean56 said:

20 Plus years after radiation

I am a 53 years cancer cured. Born with Wilms Tumor - treated with Radiation. I am new here but I am so happy to read your stories. They all inspire me because I can relate to something in each post (well, almost). Frankly, just to find this was pure vindication - IT'S NOT IN MY HEAD! I'm not afraid more like empowered now. I live in Southern Colorado and am now on the lookout for long/late term effects professionals. Any advice?

Btw, congratulations on your survival.

I don't know If I am posting correctly, but here goes.  Back in 1966 I was admitted to University Hospital in Cleveland, OH for severe back pain.  After a miliogram? they determined that I had a tumor/growth/vascular malformation on my spinal column.  The doctors told me that they needed to operate immediately and that I had a 50/50 chance of ever walking again.  WOW!  After surgery they reported that this tumor was so entwined with my spinal cord, all they could do was grind some of my spinal column bone away to releive some of the pressure on the spinal cord.  The tumor was so entwined with the cord, that they were unable to take a biopsy to determine whether it was malignant or not.  The doctors then recommended that I undergo radiation to attempt to shrink the tumor and to reduce future problems.  They indicated that the biggest risk from the radiation was that I may become sterile.

I was 24 years old, newly married, new job,  in great health, recently graduated from college, in which I participated in wrestling, gymnastics, etc.   My wife and I decided to go ahead with the radiation and I was radiated everyday for 6 weeks.   Since that time, I have not had any issues with my back and have lived a very active and full life, including raising two great kids and as wrestling coach for 13 years.  I am now 71 years old.

The reason for this post is that unfortunately, approximately 10 years ago, I began to experience some weakness in my legs.  Almost imperceptable at first, but as the years progressed, it began to impact my ability to get around.  The first symtom began as a drop foot condition in my left foot and then the weakness progressed.  None of my doctors had any idea as to what was going on or causing this condition.  I now use a cane when walking and have a lot of difficulty going up steps.  Even getting out of a chair is difficult.  My condition has finally been diagnosed as nerve damage as a result of radiation.  This diagnosis came from the Cleveland Clinic Neurological Dept. and after numerous tests.  The doctors indicate that there is no cure and nothing can be done.  They even flat-out told me that physical therapy will not help other than slow down normal aging atrophy of muscles.  So far the doctors have been correct.  I work out consistently and the weakness continues to progress.  I have undergone physical therapy with no improvement and attempted accupuncture, again without any benefits. 

 Would I undergo this radiation treatment again, knowing what I know now?  Absolutely!  It just amazes me that the medical community is somewhat clueless as the the long term effects.  In fact, I did not know how common nerve damage from radiation is, until I located this site several weeks ago.  Thanks for listening and I wish a great 2014 to everyone.

ManuelaMM said:

Hodgkins Lymphoma Survivor Diagnosed and treated in 1984

Hello to everyone, 

I see that I share a similar history with many of you....

I was diagnosed at age 15 with Hodgkins Lymphoma in 1984 Stage 2A - had a splenectomy and recived upper mantle radiation...gamma, cobalt something like that for about 12 weeks.

I am 45 years old, never smoked and drink rarely. Have maintained a healthy weight until recently and excercised regularly for most of the past 30 years. I had a healthy child via C- section (2005) 8 years ago. No trouble conceiving and a trouble free pregnancy.

1996 - Hypothyroidism (still have my thyroid, although full of nodules)

1987 to 2001 weird inflamatory attacks for 2 to 3 days at a time. No real solution or diagnosis but VERY painful. ANYONE ELSE?!

2000 - discovered bone degeneration of my cervical spine. In 2009 2 herniated disks in the same area) ANYBODY ELSE!?

2008 - First lumpectomy of the left breast LCIS 

2013 - Lumpectomy of the right LCIS

2013- bilateral mastectomy - the choice was initially in order to prevent a diagnosis it turns out I had DCIS in the left breast.  DID NOT do chemo, radiation, tamoxifin, etc...

2014- rapid heart rate 98 to 100 , shortness of breath, feel asmatic...

Still finishing up reconstructive surgery for my breasts, hoping this new "heart trouble" isn't going to get in the way. Waiting for clearance , going back to the cardiologist next week. 

I too have had trouble finding an endocrinologist who looks beyond the surface of level ranges and who is willing to experiment with my dose. 

I would be interested in knowing what else is out there that I should be aware of...

Until now, I always felt so alone. Never realized there were so many of us  and so happy to have found this forum! 

Stay healthy everyone and NEVER give up! 

Hi,

I had Hodgkin’s stage 2A in 1975.  I had my spleen removed too, and intensive Colbalt radiation that took almost a year to complete. It was from the tips of my ears to the middle of my thighs.

In the beginning I didn’t have any resistance to any type of germ.  If someone sneezed with in the week I was in the hospital.

Ten years later the fun began.  The rouge lymph glands collapsed the biliary duct to the liver and they at first thought I had jaundice.  After many tests exploratory surgery was done and the problem was fixed.

Several years later I had a Squamous cell on my gum,  resulted in three teeth removed.  I had early onset of Menopause.  I was not able to have children.  I had many issues with my teeth and now I have all caps and lots of gum issues.

Currently I am dealing with a nodule in the esophagus that is causing all kinds of problems.  I can’t gain weight and I feel sick most of the time.  Hopefully they will get this under control soon.  In addition to the Hypothyroid, and advanced osteoporosis.

Right now I am trying to find more information about these side effects to that I can inform my doctor because most medical people right now do not even know what Colbalt radiation was and more importantly what it does to your body.  Ugh.

Good luck to you and prayers for health.  If you know of any place that has more info please let  me know.

Thanks,

D  

ManuelaMM said:

Hodgkins Lymphoma Survivor Diagnosed and treated in 1984

Hello to everyone, 

I see that I share a similar history with many of you....

I was diagnosed at age 15 with Hodgkins Lymphoma in 1984 Stage 2A - had a splenectomy and recived upper mantle radiation...gamma, cobalt something like that for about 12 weeks.

I am 45 years old, never smoked and drink rarely. Have maintained a healthy weight until recently and excercised regularly for most of the past 30 years. I had a healthy child via C- section (2005) 8 years ago. No trouble conceiving and a trouble free pregnancy.

1996 - Hypothyroidism (still have my thyroid, although full of nodules)

1987 to 2001 weird inflamatory attacks for 2 to 3 days at a time. No real solution or diagnosis but VERY painful. ANYONE ELSE?!

2000 - discovered bone degeneration of my cervical spine. In 2009 2 herniated disks in the same area) ANYBODY ELSE!?

2008 - First lumpectomy of the left breast LCIS 

2013 - Lumpectomy of the right LCIS

2013- bilateral mastectomy - the choice was initially in order to prevent a diagnosis it turns out I had DCIS in the left breast.  DID NOT do chemo, radiation, tamoxifin, etc...

2014- rapid heart rate 98 to 100 , shortness of breath, feel asmatic...

Still finishing up reconstructive surgery for my breasts, hoping this new "heart trouble" isn't going to get in the way. Waiting for clearance , going back to the cardiologist next week. 

I too have had trouble finding an endocrinologist who looks beyond the surface of level ranges and who is willing to experiment with my dose. 

I would be interested in knowing what else is out there that I should be aware of...

Until now, I always felt so alone. Never realized there were so many of us  and so happy to have found this forum! 

Stay healthy everyone and NEVER give up! 

Not to scare you, but for your asthma symptoms you really need to see a heart doctor to make sure you do not have any heart issures.  I had my radiation treatments in 1987 and in 2010 starting have asthma symptoms and used an inhaler and when I got a cold and had to get albuteral treatments at the doctors office.  In 2014 I had a heart attack and tripple bypass surgery.  I am doing good now.  The heart doctor told me my heart problems was the issue and after my heart surgery my asthma symptoms went away.    I went to a pulmonary doctor because after my heart surgery I was still having trouble breathing when doing things around the house and walking for my cardio rehab.  I was told I have restrictive lung disease and some pulmonary fibrosis.  I like many am doctor poor, but don't give up on getting the correct health care.  I am finding if we do not live in the areas that specialize in long term effect care we are our only advocate. Keep searching for a doctor that will pay attention to you and not look at you like you are crazy and have two heads.  They are out there.  Good luck with all and I will keep you and all cancer survivors in my prayers.

ManuelaMM said:

Hodgkins Lymphoma Survivor Diagnosed and treated in 1984

Hello to everyone, 

I see that I share a similar history with many of you....

I was diagnosed at age 15 with Hodgkins Lymphoma in 1984 Stage 2A - had a splenectomy and recived upper mantle radiation...gamma, cobalt something like that for about 12 weeks.

I am 45 years old, never smoked and drink rarely. Have maintained a healthy weight until recently and excercised regularly for most of the past 30 years. I had a healthy child via C- section (2005) 8 years ago. No trouble conceiving and a trouble free pregnancy.

1996 - Hypothyroidism (still have my thyroid, although full of nodules)

1987 to 2001 weird inflamatory attacks for 2 to 3 days at a time. No real solution or diagnosis but VERY painful. ANYONE ELSE?!

2000 - discovered bone degeneration of my cervical spine. In 2009 2 herniated disks in the same area) ANYBODY ELSE!?

2008 - First lumpectomy of the left breast LCIS 

2013 - Lumpectomy of the right LCIS

2013- bilateral mastectomy - the choice was initially in order to prevent a diagnosis it turns out I had DCIS in the left breast.  DID NOT do chemo, radiation, tamoxifin, etc...

2014- rapid heart rate 98 to 100 , shortness of breath, feel asmatic...

Still finishing up reconstructive surgery for my breasts, hoping this new "heart trouble" isn't going to get in the way. Waiting for clearance , going back to the cardiologist next week. 

I too have had trouble finding an endocrinologist who looks beyond the surface of level ranges and who is willing to experiment with my dose. 

I would be interested in knowing what else is out there that I should be aware of...

Until now, I always felt so alone. Never realized there were so many of us  and so happy to have found this forum! 

Stay healthy everyone and NEVER give up! 

I had my treatments back in 1983, full torso radiation.

i amnow 52 and dealing with shortness of breath. I fly to Chicago tomorrow to see a cardiologist, long story short most Doctors have not had to deal with survivors over 25 years and they have never realized what long term effects the radiation caused.

Most of my isssues are with my heart and lungs. hope to get some answers this wekend.

Stay positive and enjoy every day.

John

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.

Hello, 

I had a bone marrow transplant in January of 1990. I was diagnosed with leukemia in 1983 at the age of 6. I relapsed a second time in 1989 and the last treatment option was a BMT. I had an unrelated donor.

I went through radiation following my chemotherapy treatments after my second relapse and then again before my transplant. I had severe graft-vs-host disease immediately following the transplant. 

I didn't begin to notice any long-term side effects until my first seizure in 2010. I think side effects were present before that, but I didn't link them to the chemo or radiation. After the seizure they discovered several cavernous malformations in my brain and I also have signs of mesial temporal sclerosis. 

Like many of you, I have a long list of side effects, some of which I probably still don't identify with chemo or radiation. The seizure is what first led me to try and find out more about possible long-term side effects of chemo and radiation, but I haven't been very diligent about it. 

One of the things that has been most difficult for me over the last few years has been financial stability and healthcare coverage. After my first seizure I began having employment problems. Now I'm in a catch 22. I'm on medicaid, but in order to maintain eligibility I have to make sure my income doesn't rise too far above the poverty level. Without a significanlty higher income I can't afford healthcare coverage.

The cognitive issues have also been an increasing source of frustration. I have difficulty communicating my thoughts. I have word retrieval problems. I have memory issues. 

I was hoping to keep this post short, but it feels good to air some of these things.

God bless, Dan