Really long term effects of cobalt radiation?

Robstar said:

frontal lobe radiation
I was diagnosed with A.L.L at 1 1/2 (1971) remission at 5 and cured at 10 (1980). I received frontal lobe radiation and chemo. SInce age 5 I have had learning disabilities, short term memory, attention issues, comprehension, problems with mathmetics, and concentration. I haven't had any problems coordination though (although I not very athletic though). I haven't found a lot of research of long term cancer survivors. I wish there was more. I know it's important to get you cured and out the door, but it seems once you're 5yrs out..they seem to forget about you.

Forgotten No More
Please locate a late term effects clinic. While most doctors now have a protocol for children following cancer, only recently have they realized that so many of us, while no longer a child, but were treated at a younger age, are now feeling the effects of what cured us.

I feel confident in my L.E. doc that I will not be forgotten (they actually call me when I don't follow through quick enough with their orders).

Paul E. (Hodgkoid2003)

Not cobalt treatments but 20 year survivor with side effects
Had a bone marrow transplant and total body radiation as my treatment for non hodgkins lymphoma and have had a ton of side effects over the years that just pile up. I
went to see a neurosurgeon at a Memory Clinic here in Canada about cognitive issues
I have and memory issues. He ran tests and confirmed 'chemo brain' which never was
validated before but explained it by saying that some cancer drugs do cross the
blood-brain barrier but that this just kind of weakens the foundation of the brain,
didn't reallly say 'damaged it', although not sure I know the difference.

Anywho he said that what this means to me and others in my situation with treatments
like that is that because the foundation of the brain is weaker then natural things
like aging of the brain is not as solid as someone who hadn't had treatment that
affected the brain. He also said that pain can be a factor in losing some cognitive function
as can stress affect us that way as well. Apparently Ritalin and anti depressants can help some in this regard.

I have had other side effects as well, those being heart damage from a chemo drug, early arthritis, respiratory issues, blah blah blah blah blah. lol.

You might also want to have a neuropathy test done to see what nerve damage you might have sustained in treatment. I have one scheduled for later this next month. The fun never ends, lol.

There can be a high price in late effects caused by cancer treatment but then look at how long we have survived as well. Cobalt treatment was so long ago but I have known many other cobalt recipients that are still going strong today. Amazing what the human body and spirit can survive. Blessings, Bluerose

allwaysjudee said:

I received cobalt radiation
I received cobalt radiation treatments 42 years ago, at the age of 16, for treatment of Hodgkins Disease. Cured me, and offered me a good life, but now the problems are arising. Neck and upper thoracis muscles are deteriorating, and I'm told that some neural cells may be involved too, as I develop problems lower down.

At first the doctors didn't want to believe it was the radiation treatments, but finally they decided it couldn't be anything lese. The muscular decay is very visibly in the area of treatment.

I have learned to accept this, but it was very frustrating during those 4 to 5 years of worsening symptoms, to be sent from specialist to specialist and no one knowing what it was. But I look at it this way - we are the first generation of cancer survivors to live this long. Such statistics couldn't be known before, because people didn't live as long before having relapses, or other cancers, etc.

It is my hope that whatever suffering I experience now can serve as a kind of indicator to current treatment methods, an incentive to look for treatments that will cure without such strong and painful effects so many years down the line.

But hey, as I always say, if it weren't for the treatments, i wouldn't be here to complain about it.

ps - sorry for the typos

Back muscle atrophy, aortic valve, colon ca., blocked Mesenteric
I was very happy to read your entry. I received cobalt radiation 37 years ago @ 17 yrs old for Hodgkins (Mantle & Inverted Y, neck to tailbone). My neck & back muscles are severely "wasted" & atrophied, I look like my back muscles were "scooped out" with an ice cream scoop. Like you say, the muscle decay is very visible. Have you found a doctor that has given you any idea of anything that will help or any treatment?

I have not found any dr. or Orthopedic dr. that will speculate that it is radiation damage. All they'll offer is cortisone shots in the spine "when the pain becomes intolerable". One dr. looked at my back,neck,lower buttock area....shook his head in disbelief.....but told me that I "slouch & don't stand up straight". He was young & he just does not have the education/ training to understand. I wish I COULD stand up straight.

I have had numerous heart problems, stents, & am in congestive heart failure. I had colon cancer about 10 yrs ago, & also a blocked Mesenteric (abdominal) Artery that nearly killed me about 4 yrs. ago (all probably caused by cobalt & MOPP chemo). I am facing aortic/mitral valve replacement & probably heart bypasses very soon (I hope to go to Cleveland Clinic).

What were you told about the "neural cells", if u don't mind me asking. I just can't find any help in the regular medical doctors. I will appreciate any info you can provide.

I have a clue what you have been thru. I appreciate your attitude. I too am thankful to be alive. However, I did not like being used as a 17 year-old guinea pig without my consent. Best regards & thanks, Janet B

allwaysjudee said:

I received cobalt radiation
I received cobalt radiation treatments 42 years ago, at the age of 16, for treatment of Hodgkins Disease. Cured me, and offered me a good life, but now the problems are arising. Neck and upper thoracis muscles are deteriorating, and I'm told that some neural cells may be involved too, as I develop problems lower down.

At first the doctors didn't want to believe it was the radiation treatments, but finally they decided it couldn't be anything lese. The muscular decay is very visibly in the area of treatment.

I have learned to accept this, but it was very frustrating during those 4 to 5 years of worsening symptoms, to be sent from specialist to specialist and no one knowing what it was. But I look at it this way - we are the first generation of cancer survivors to live this long. Such statistics couldn't be known before, because people didn't live as long before having relapses, or other cancers, etc.

It is my hope that whatever suffering I experience now can serve as a kind of indicator to current treatment methods, an incentive to look for treatments that will cure without such strong and painful effects so many years down the line.

But hey, as I always say, if it weren't for the treatments, i wouldn't be here to complain about it.

ps - sorry for the typos

In 1969 I was given radiation in the neck and chest area to treat hodgkins disease. I was blessed with many healthy years until 1995 when my throid started to malfunction. This has been easily treated with synthroid. Then in 2002, despite being a non-smoker, I was diagnosed with lung cancer. Part of one lung was removed with no recurrence of cancer thusfar. However I recently have experienced shortness of breath and am bothered more by the heat and humidity. I will see my doctor next month for his assessment. It is amazing how many long term survivors have experienced unanticipated health issues because of radiation. Thankfully new methods of radiation are less risky and more effective, but it makes me wonder what else might surface in my personal health. Best of luck to all cancer survivors!

allwaysjudee said:

I received cobalt radiation
I received cobalt radiation treatments 42 years ago, at the age of 16, for treatment of Hodgkins Disease. Cured me, and offered me a good life, but now the problems are arising. Neck and upper thoracis muscles are deteriorating, and I'm told that some neural cells may be involved too, as I develop problems lower down.

At first the doctors didn't want to believe it was the radiation treatments, but finally they decided it couldn't be anything lese. The muscular decay is very visibly in the area of treatment.

I have learned to accept this, but it was very frustrating during those 4 to 5 years of worsening symptoms, to be sent from specialist to specialist and no one knowing what it was. But I look at it this way - we are the first generation of cancer survivors to live this long. Such statistics couldn't be known before, because people didn't live as long before having relapses, or other cancers, etc.

It is my hope that whatever suffering I experience now can serve as a kind of indicator to current treatment methods, an incentive to look for treatments that will cure without such strong and painful effects so many years down the line.

But hey, as I always say, if it weren't for the treatments, i wouldn't be here to complain about it.

ps - sorry for the typos

Hello and my daughter Theresa
Well, first off, nice to meet you. My daughter was diagnosed with Hodgkins disease in Feb of 1984 when she was 12. She is now 40 years old. Had radiation on her neck where the lump was plus in the area of her speen. Now she has become sick. All this testing and still have not found out why she is ill. Her endocrinologist plus her cancer dr. said it may be due to all this radiation she had. She has also been to The Mayo clinic this year for an enlarged liver. And her list of symptoms goes on; she mentioned like 30 to me. So, I go with ehr this thursday to see her cancer dr. for a meeting. If you want to e-mail her it is: gr8lilfarmgal@yahoo.com. Her name is Theresa. I am her mom shirley. Take care.

allwaysjudee said:

I received cobalt radiation
I received cobalt radiation treatments 42 years ago, at the age of 16, for treatment of Hodgkins Disease. Cured me, and offered me a good life, but now the problems are arising. Neck and upper thoracis muscles are deteriorating, and I'm told that some neural cells may be involved too, as I develop problems lower down.

At first the doctors didn't want to believe it was the radiation treatments, but finally they decided it couldn't be anything lese. The muscular decay is very visibly in the area of treatment.

I have learned to accept this, but it was very frustrating during those 4 to 5 years of worsening symptoms, to be sent from specialist to specialist and no one knowing what it was. But I look at it this way - we are the first generation of cancer survivors to live this long. Such statistics couldn't be known before, because people didn't live as long before having relapses, or other cancers, etc.

It is my hope that whatever suffering I experience now can serve as a kind of indicator to current treatment methods, an incentive to look for treatments that will cure without such strong and painful effects so many years down the line.

But hey, as I always say, if it weren't for the treatments, i wouldn't be here to complain about it.

ps - sorry for the typos

Wow
So glad I found this website and this info... I follow NCCn guidelines every year but this has never been discussed at least I have info to know what the future may hold... Had rad in 1978 1979 when I was 16. Have LE but doctors are following me close.... I always say the same to my mom who cries every time i have another cancer.... Good Luck

allwaysjudee said:

I received cobalt radiation
I received cobalt radiation treatments 42 years ago, at the age of 16, for treatment of Hodgkins Disease. Cured me, and offered me a good life, but now the problems are arising. Neck and upper thoracis muscles are deteriorating, and I'm told that some neural cells may be involved too, as I develop problems lower down.

At first the doctors didn't want to believe it was the radiation treatments, but finally they decided it couldn't be anything lese. The muscular decay is very visibly in the area of treatment.

I have learned to accept this, but it was very frustrating during those 4 to 5 years of worsening symptoms, to be sent from specialist to specialist and no one knowing what it was. But I look at it this way - we are the first generation of cancer survivors to live this long. Such statistics couldn't be known before, because people didn't live as long before having relapses, or other cancers, etc.

It is my hope that whatever suffering I experience now can serve as a kind of indicator to current treatment methods, an incentive to look for treatments that will cure without such strong and painful effects so many years down the line.

But hey, as I always say, if it weren't for the treatments, i wouldn't be here to complain about it.

ps - sorry for the typos

Wow
So glad I found this website and this info... I follow NCCn guidelines every year but this has never been discussed at least I have info to know what the future may hold... Had rad in 1978 1979 when I was 16. Have LE but doctors are following me close.... I always say the same to my mom who cries every time i have another cancer.... Good Luck

Now you have me worried
KM25, like you, I had surgery and cobalt radiation treatments for a medulloblastoma. I was only two and a half years old in 1973 and don't remember it. I had thyroid and petituary (sp) gland issues. I stopped growing around the age of ten or eleven and received growth hormone shots for a long time. I was the first or one of the first to receive the new synthetic hormone after they discovered a hidden, undetectable disease in human growth hormone.

It's 38 years later and this thread has me woried about future issues. What those Doctors did for me back then saved my life and I would never want the outcome to be different. We are the first generation to deal with these issues and like it was said above, I hope it does some good for future cases. I know what I've gone through already has. Hold your heads' up high everyone and stay positive. Km, I have same symptoms, that area of the brain controlls balance and motor function. Hope to talk again.

MEM2 said:

37 years since my Radiation
I had Hodgkins and had Cobalt Radiation when I was 8 turning 9 and 3 years of MOPP Chemo. Probably around the same year you were having your. I think I began in 1974 and ended in 1977. I can never have any more radiation. I am fortunate to be alive. I have many mishaps due to the radition. Major one being a right sided hemidiaphram. I only have one function lung. The doctor didn't know where the tumor ended and my lung began because of the radiation.

Right now I am experience problems with my heart and lungs and am aggressively trying to find out what exactly is going on. I have been told that these problems are directly related to the radiation treatmnent.

I thank God everyday that I wake up and everyday for the children I was never supposed to have. My doctors saved my life back then also and although I hope that they can figure out what is going on I too wouldn't change a thing. Everyone has something in life that makes them different mine just happens to be scars and affects of cancer and the treatment. Just be thankful that the doctors who where treating you had the foresight to give you that treatment. They didn't know then whatt the long term affects would be.

sly
i also have side effects from radiation to all areas of my neck. I had throat ca. in 2000 and had 37 radiation treatment to my neck.. No i am a silent aspirator because my gag reflex in my throat is almost shot due to radiation. I have to have my esoghagus dilated every year due to heavy scar tissue in my throat.I am now on nectar thickened liquids or i aspirate regular liquids in my lungs. So i am leaarning to live with all this. I copd now so i seem to get pneumonia easily. But the Lord has helped to get through this. One day at a time. I am still working full time. I am a nurse.

KM25 said:

Hoping that late is better than never.
Dear dubc -

First of all, I must profusely and sincerely apologize for being so late about responding so slowly to your earlier response to my posted message – about others who might have knowledge about long term effects about cobalt radiation received during surgery for a medulla blastoma.

It seems that I had stumbled across the Cancer Survivors Network, posted my inquiry, and then … simply forgot it. A new internet search, recently, got me a “hit” consisting of my old message, I was surprised at how many responses I had received. Of course, I was most interested about someone who has and is having the same experience that I have,


It is now 43 years later, and the degradation in my legs appears to have finally stabilized, and I do get around using my walking sticks or one of my 3 rollators i.e “walkers” on wheels. I do hope you are doing well, and that we can continue to exchange information and knowledge. If you prefer, you can also contact me directly at ikaupe@sonic.net.

- Take care!

survivor
I too am a long-term survivor of cobalt radiation therapy. I had a large growing cavernous hemangioma on the entire length of my medial side of the right upper thigh. I underwent the therapy 37 years ago at Mayo clinic-St Mary's in Rochester, MN, and had been warned by a few doctors over the years that i should keep in touch with an oncology practitioner for cancer screenings due to the type of therapy i had recieved in the past. So far the long term effects... noticable difference in the size of my two legs. My treated leg is about 70% the circumference of the non-treated one. Function-wise there is no noticable difference; but the CT scans i have had all show dramatically less adipose tissue on my right leg. I feel fortunate to have been able to father a child, and she is an angel!
i have also noticed that whenever i have a bacterial infection, if it gets severe enough, my right groin lymph nodes become severely engorged, the area where the tumor was becomes extremely swollen, red and warm to the touch - looks like a cellulitis but IS NOT. The whole faux cellulitis thing is not an actual infection, but it is a secondary symptom of the bacterial infection (usually a strep infection). Sometimes my various doctors in the past have not wanted to listen, but that's why they are not my current doctors. I have had this problem 2 - 3 dozen times over the years. I hate getting sick, as it is never "just a fever" but all this other crap happens. viral infections seem to have not been a problem when they strike... don't know why, just that i never had these symptoms with flu, cold, varicella, etc. I hope cancer does not strike, but if it does, i will go down fighting if it takes me out.