Cancer Survivors Network

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)

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

In some ways it is wonderful to be able to see that there are others experiencing what I have been experiencing for some time now. I was treated for Stage 1 Hodgkins with cobalt radiation 36 years ago. With the exception of emotional effects from the disease I hadn't any secondary problems until 13 years ago when it was thought that I had thyroid cancer, which I did not but had a thyroidectomy due to the increased risk from radiation. Then 5 years ago I developed Stage 2 Breast Cancer. Treated with chemotherapy and am now cancer free. Each day, as I'm sure most of you know, is a blessing but we have to always live with the fear(which I TRY not do do) of a reoccurrence or new type of cancer. Every test we take turns out to be a rollercoaster ride of emotions because I think the doctors tend to be overly sensitive to the fact that we are cancer survivors. I have just recently learned that I too have not only mitral valve prolapse but aortic stenosis and leakage which is assumed to be from the radiation therapy. I have been told that I do not need valve replacement at this present time but we are watching things very carefully. I too have done my research for the possible future at the Cleveland Clinic. I read the other person's blog about Late Term Effects Clinics and I will have to look into my area (south Florida) to see if there is any such thing. Presently most of my doctors work independent of one another and that can be quite frustrating. I pray that all of us will continue to live a long and at best productive life. I have a 13 year old son that I intend to see grow into a fine "middle aged" man.

I was hopeful after I learned that all of us have our own stem cell "factories" in our brains. After listening to a speaker at a "Brain Tumor Workshop, I was optimistic and many non-neurosurgeon - doctors seemed to have - superficially at least - a similar response.

However, it doesn't look like anything is going to happen soon. MAYBE there are so few of us who have survived 40 years after the tumor. that there isn't much of a "market" to develop this new technology.

I have learned that there is more location, in our bodies, that manufacture adult stem cells - beside in our brain, there are locations in our muscles, in our hearts, and in ??. And in weach location, the stem cells are preset to become what ever cell they are supposed to be.

As for myself, my main focus has been on trying to restore my strenght / stamina and to adapt.

I am so sorry that I have replied sooner. I have my reasons / excuses. I wish you are still doing well.

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!

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.

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

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

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

I was so glad to find others going through what I am. My treatment was 25 years ago. I am having heart problems and kidney problems. I am also getting tired of my kids telling me I'm crazy!!! I will do more research and just wanted to thank you all for turning on the light!

Had cobalt radiation in 1977 for a brain tumor. No side effects until 1997. Since then I've had seizures which are now under control, but I feel like my mind is going! I can't remember things and mostly my sense of orientation is diminishing. Yesterday I got turned around in my own house! Just so you know we're not crazy. Just tell your kids that you had a close encounter. The Aliens were so impressed with your brain that they had to take a sample. Buy the Anatomy Coloring Book. It is very cool and your kids will start saying nephrotic, cytology and auricular. Have a great day.

Caryn

I am Neil's wife and caregiver. I did not know him when he had cancer, but I can certainly testify to the side effects of cobalt radiation. He had 5500 rads over the period of a year to his abdomen centered on the small intestine area. Over the years he has developed multiple problems. About a year after treatment he developed "radiation enteritis" which caused "malabsorption syndrome" in the affected area. He next developed intestinal adhesions which caused numerous small bowel obstructions which could sometimes be resolved by decompression with a naso-gastric tube. He has also had several bowel resections to remove necrotic intestine because the adhesions cut off the blood supply. The latest problem has proved to be by far the most serious. The superior mesenteric and celiac arteries became occluded by a combination of scar tissue and plaque. Stents were inserted but failed. In mid July he had a major operation (80% mortality) to insert a graft into his aorta and in turn graft the two other arteries to it. Although blood supply has been restored and his intestines are functioning, we are 5 months out and his wounds have not yet healed - to make matters worse he has several small abscesses that have popped up around the wound site. The wound care nurse is treating another patient with the same problem who was treated with hyperbaric oxygen, which, as I understand, delivers greater amounts of oxygen at greater pressures while the patient is in a chamber similar to a decompression chamber. She said that patient made astonishing progress and recommended it for Neil but his surgeon has not approved it.

Neil has been through hell for the past several years, but he has lived almost 40 years cancer-free. He realizes each day he has is a gift, and that has made him the most kind and gentle man I have ever met. He was hospitalized for 54 days last summer and I lived in his room with him. I took care of the "scut work" and helped out his nurses every way I could - when I had to call them for pain or nausea meds, they were very prompt with their attention. I was also there whenever his doctors made rounds with my pen and notebook ready. I asked questions and if I didn't completely understand the answers I researched them on my notebook. It was very fortunate that I was once a biology major, and that I had just retired so I could devote my full time to his care.

At anyrate, that is our story. From many of your questions and as the result of my research, it is probably that cobalt radiation is probably at least partially to blame. The latest scientific study I read said that it shortened telomeres in hampsters. Telomeres are on the end of each strand of DNA to keep the ends safe. Every time a cell divides, it loses a telomere. When there are no more the cell can no longer reproduce. There is a protein or enzyme called telomerase that is always found in cancer cells. It allows cells without telomres to reproduce. Apparantly in some cases it can "grow" more telomeres so the cell can live and divide longer. In 2009, the Nobel prize was awarded for the discovery of telomeres and their function, so it is new science. It follows that when many "good cells" are killed by radiation and the ones that survive have shortened telomeres (yet to be proven in humans) the survivors have to replicate far more often, which causes premature aging and, if the cell starts producing telomerase to keep alive, the hypothesis is that it could lead to primary or recurrent cancer.

Amen blue rose,thanks alwaysjudee. 32 years after my brain tumor and subsequent cobalt radiation treatments I have developed three different cancers as a direct effect from those treatments. I have memory issues and a neurologist informed me that my brain is aging at a faster rate. I am still hanging, I have lost some parts gained some too. I am working and playing golf (badly)l would like to blame radiation for that, but no one will give me any strokes. Stay positive, attitude is important. Good luck all

Sorry to hear you are going through all this 32 years after radiation treatment. I am just at 9 years out and so many side affects and every years a lot more new ones to add to the list. But I guess I should just be thankful that I am still here.

╠╣ONDO

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.

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.

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!

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.

You are a long term survivor at 37 years I am glad you found CSN and hope you can share some of you passed experience on C treatment with us on other forums here.

Wishing you the best
Hondo

Wow so sorry to hear about the many side effects after so long a time. I am just 9 years passed my first treatment and 6 years passed the second treatment and side affects from the all the treatment are like non stop. I hate to see what is in store for me 35 years down the line. I wish you well as you continue your fight.

PS: Welcome to CSN
Hondo

Hi Hondo

It has been 49 years now since my treatment with little side effects other than short energy and vertigo. Now I have been diagnosed with basal cell carcinoma in back of my ear. I am considering just leaving it alone because it doesn't really bother me. If it is another 20 years before it gets worse why not leave it. I adjust my life as any side effects show up and pray that I am doing the right thing. It is good to hear from other people that experienced similar medical conditions. It always has information on how to cope with the conditions you may experience.