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long term effects of radiation

JC2010's picture
JC2010
Posts: 4
Joined: Mar 2007

Hi, I am a college freshmen and just found this site a few days ago while doing some research.
I had a brain stem glioma when I was 3. I went through chemo, a bonemarrow transplant, and had high doses of radiation. The radiation caused me to lose my hearing and it stunted my growth. I have had many surgeries on my ears. I took growth hormone shots a few years back.
I was just wondering what others here have gone through due to radiation. I'd love to chat sometime.

kristy25
Posts: 2
Joined: Apr 2004

I was diagnosed with a medduloblastoma at 16yrs. in 2002 and went through both radiation and chemo. I have noticed the effects on my body such as bald ares behind my ears where the radiation went in, new moles and freckles on my body and ringing in my ears. The biggest thing is that my pituitary gland was kind of fried, which affects most of my other glands, so I have to be on hormone replacement therapy for the rest of my life. Since I have not hit my 5 year mark from chemo yet I dont really know what the long-term effects could be, but I hope you can find what youre looking for. Message me if you would like to chat. :)

james8220
Posts: 13
Joined: May 2009

Hi I was diagnosed with a germinoma brain tumor. I had both radation and chemo. The radation destroyed my pituitary gland. Do to that I take desmopressin 3 times a day which I will have to take for the rest of my life. I also have problems with heat and am high tone deaf.

Matty
Posts: 21
Joined: Aug 2008

What problems does heat cause you?I have problems with heat in the summer. I can not tolerate heat and do not sweat like others. I don't know if it could be problems from treatment. I had radiation and surgery for my brain tumor.

james8220
Posts: 13
Joined: May 2009

Because the tumor destroyed my pituitary gland as my doctors put it my internal thermometer is off whack. So I get hot very easy.

KarenMR
Posts: 3
Joined: Jul 2009

Hi,

It's hard to find others who have been diagnosed with germinoma's! My son, who just turned 18, was diagnosed in 2007 with a germinoma on his pituitary gland. He lost all pituitary function. He takes ddavp, synthroid, cortef, testosterone, growth hormone. He doesn't have any hearing problems though. It's a challenge to keep up with his ever changing hormone levels. Good luck to you.

margin
Posts: 8
Joined: Sep 2007

I am 50 yrs old & will complete my 30th radiation treatment tomorrow. I had one big blast 8 yrs ago on brain called gammaknife radiation. recently had brain tumor removed and followup treatments of radiaton & chemo (temodar/pills). only took temodar about a month into radiation. developed bad rash and stopped temodar. glad you are doing well and I am doing well also. would love to chat sometimes too.

davidbdailey's picture
davidbdailey
Posts: 20
Joined: May 2009

Margin,I aM 53 now, Male, I had a GBM IV Tumor Right Temperal Lob and I am being seen by
the Preston Robert Tish Brain Tumor Center at Duke and my treatments are being done here in Columbia SC. and today I will be taking my last Temador Meds and Tomorrow I will be Getting my Last Radiation Treatments. I am still taking meds for Siezures at which I had one this morning still. they are Focal Siezures. I feel So GREAT Ever since the almighty God held my head on July 5th at 04:30 am. It was amazing. I haven't had any problems at all with any of my treatments as of yet. After I complete this first part, My next MRI scan is Aug 12th and we go to Duke U, on Aug 19 to see what is what. they have mentioned about doing IV Avastin for awhile and them CPT 11. They may do them both at the same time. We shall see. What ever it takes. I am Praying for you and your family to have good health and a long loving life.

Take care and God Bless
LIVE LOVE LAUGH DANCE DREAM BELIEVE

WE Will Be Survivors. David B, Dailey

Matty
Posts: 21
Joined: Aug 2008

I had an ependymoma (malignant brain tumor)at age 4. I had surgery and radiation to the back of my brain and spine. I am 47 and last year first found out that all my difficulties
I have with work are due to late effects. I never heard of late effects until I joined a
survivor group at Memorial Sloan Kettering Cancer Center in New York. I never had vision problems or hearing problems. My problems are cognitive. I can not muti task, have alot of
problems with organization, planning, time management,communications,problem solving, all
executive functions and social relations with others. My growth is stunted, I am quite short. My parents were afraid of using growth hormone. How tall are you? Did the growth hormone help? I have also had chronic deppression for as long as I could rember. I also
found out last year these low feelings are related to treatment. You may have skipped some of these feelings since you took growth hormone. Lack of growth hormone can lead to depression. I am not depressed after getting good treatment. What kind of work do you do? I have had problems holding jobs. Are you on disability because of your late effects? Please write, I would be happy to hear from you.

Matty

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

I was diagnosed with with a cancerous brain tumor in early March of 1983 just before my 11th birthday. The tumor was dx'd from a biopsy of the tumor during the surgery. I had high intensity radiation about a month after. That was followed by i think 9 months of chemo.
The biggest and worst late affect I've had from radiation was a begnin brain tumor on my brain over my sinus about 19 nearly 20 years after dx.

infoneeded
Posts: 24
Joined: Jul 2009

My husband finished his temodar and radiation two weeks ago for a gbm IV found April 29th. He flew through it like Superman until the last two treatments. He started getting bad headaches like he had pre surgery. They come and go and aren't on a regular basis. They were supposed to have stopped by now but he is still getting them. The steroid isn't stopping them or taking the edge off. He doesn't have an mri until August 11th and doesn't want to contact the dr due to being treatment free for one more week. Has anyone else had headaches that didn't go away????

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

My son had terrible debiliting headaches before he had surgery to remove a tumor. He would throw up over and over and he couldn't see and he couldn't do anything because the pain was so bad. He said that he felt like he was dying....such a terrible time. It was right before he was diagnosed and right before he had brain surgery. He still had headaches after the tumor was removed, and headaches during radiation, and after radiation. They were pretty bad headaches, but not nearly as bad as the ones before surgery. I was so affected by his headaches...terrified that they meant something was wrong or growing back or whatever. But then the neurologist/oncologist's nurse told me that my son had basically had three traumas to his head...a tumor, a surgery, and the radiation, and that it takes the brain some time to heal.

My son was diagnosed and had surgery in May of 2009, and today he is still having headaches, but they are not as bad as they were. They lessened very slowly, but they did lessen, in frequency and in strength. Your husband and my son had different types of tumors, but I thought that our experience might give you some hope.

The steroids didn't help with his headaches at all. I wonder if they contributed to the headaches? My son took Vicodin and even Dilaudid a few times and that helped, especially the Dilaudid. But it was hard for him to function when he took such powerful pain medication. His oncologist sent him to a headache specialist and they tried different things, even acupuncture, but that didn't help. It just took time, I guess, to heal. Today his headaches are much more bearable and he has them less frequently.

I hope that your husband can get some relief from his headaches soon. Please forgive me if I am crossing a line here, but I do think that either you or he should call his doctor and see if there is any pain medicine or treatment that your husband can take that would give him some relief from his headaches. It's so demoralizing and and it makes one feel so much more discouraged when one is in consant, unrelenting pain. I'm so, so sorry that your husband and you are going through this.

Love and blessings,
Cindy

summer11's picture
summer11
Posts: 1
Joined: Feb 2011

I am now 43. I was diagnosed with my brain stem glyoma in 1988 and was treated with the maximum amount of radiation. I presently suffer, not from the tumor but from the radiation, poor balance, hearing loss, double vision, left side of tong is atrophied, left arm s week, left hand has poor motor control, spasticity in legs, sleep apnea, short term memory loss, walking is a challenge, can not run and no tickle sensation. I have resently developed a nose allergy. I still love life!

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I had radiation therapy 15 years ago at the age of 34 for muliple mengiomas that had invaded areas they weren't supposed to grow in.

For the last 6 months I have been experiencing severe hearing loss, blurred vision, positional vertigo, etc. and we have finally started getting the answers. They are late side effects from the traditional radiation I had 15 years ago. My hypothalmus was almost destroyed which has also been affecting my thyroid and adrenal glands for the last 6 months. After 2 hospital stays I am finally on the correct medications (low dose prednisone and synthroid) that the docs say I will probably be on the rest of my life.

We have also been advised that the tumors are back, growing and in inoperable locations. They tell me they want me to sign up for radiation again. I do remember the headaches and everything else I experienced with radiation but the treatment was only for 6 weeks and after the treatment stopped the side-effects did ease pretty quickly. Headaches have been a way of life for me for the past 20 years and I have learned what works to help ease them.

By the way, we were warned 15 years ago that it is not uncommon for the effects of radiation to take years to show up.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Well, it took 22 years for my husband's Whole Brain Radiation (WBR) of 1987 to manifest three inoperable AA tumors in August 2009, and now a GBM on the optic chiasm.

He has been on Synthroid, DDAVP, Cortef and Androgel since 1987, as his first germinoma was on the hypothalamus.

I'm hearing more and more and more late effects (some very serious) of radiation. At the time, my husband's germinoma had completely disappeared after two months of chemo. They insisted (to his mother) that they do WBR to make sure it was gone. We'll always wonder what would be if they hadn't done it, but there's no point in going there.

Hearing loss has presented itself, too, but nothing too drastic. His current doc thinks that was the Cisplatin they gave him in 1987. At 45, you don't expect hearing loss, but it's not unusual.

I pray there will come a day when treatments can become full-fledged cures, without late effects of another aspect of the disease with even more devastating effects.

All the best to each of you.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I was interested in your comment about the tumors now on the optic chiasm because they tell me I now have them there as well.

AS for the wondering about what if I didn't have the radiation? I have done that as well. But I refuse to keep kicking myself for something that did extend my life by another 15 years. It enabled me to be here to watch our kids grow up and be able to spend time with our 5 beautiful granddaughters, something I may not have had without the radiation.

As for the hearing loss and possibility of losing my vision? We are addressing both of those. My husband and I are learning sign language (great YouTube videos) and we have already discussed the possibility of what if about my vision. The doctors don't seem to think I will lose either one but I want to be prepared just in case.

I hope things work out for your husband.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

what kind of radiotherapy did you receive 15 years ago? so you had radiation to your brain twice?

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I had "traditional" radiation therapy in 1996. They made a face mask and screwed my face to the table. The proton beam therapy and radiostactic therapy were not yet available at the Cleveland Clinic; they were just getting ready to introduce them a few months later.

Now they want me to have more radiation therapy in many of the same areas where the traditional therapy was done. They are suggesting a combination of "traditional" therapy combined with one of the newer forms to get the tumors. I go this week for my MRI, CT Scan and a fitting for a traditional face mask.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I had my face mask made and it wasn't anything like the one I had made 15 years ago. The original was blue, hardshell and it wasn't malleable at all. The current one is white and comes in 4 pieces. I did tell them that I want the mouth and nostril area cut out (I am claustrophobic) and they said they would see to it.

Getting the mask made actually took longer than the actual sessions will and I figure I can tolerate 5-15 minutes in the mask for therapy sessions.

But it was rather creepy seeing all the face masks in the room made in the image of people's faces.

Thanks for the heads up about the salve. Never heard of it, but will certainly put it in my medicine cabinet if I need it.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

You and Rory will be interested to know what we were presented with as a possible option for my husband yesterday. Our Atlanta doctors are thinking gamma knife COULD be used to zap this GBM on the optic chiasm. Duke's radiation oncologist is suggesting no radiation. We are sooooo confused.

The doctors here feel if after this round of chemo (ends next Thursday) the next MRI still shows the tumor encapsulated in the optic area as it had shown in February, that they could safely do the gamma knife to give him more of a fighting chance. They do not feel his sight will return, and this is why they are even considering it for this area of the brain.

We know so very little about gamma knife, but the fact that two great teams are not on the same page is highly confusing as to what to do. I think we like the idea of being aggessive, if we can, because with a GBM what more do you have to lose?

Would love to know your thoughts. This would be a THIRD time of radiation. They assured us because of this area the rad onc could contain it in that optic area. Of course that means NO possibility of vision restoration. (I have a call into his Neuro-Ophtalmologist for her opinion.)

I never dreamed we'd ever have so many heavy, heavy decisions to make. It's such a rollercoaster.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Oh sweetheart, you are in my prayers.

Are the Atlanta doctors specialists in Optic Nerve and Optic Nerve Chiasm tumors? Do they have experience in Gamma Knife in this area?

That is why it is so important to get opinions from more than one doctor. There is one doctor at Wake Forest University Baptist Medical Center in Winston-Salem, NC who may or may not be of use to you. His name is Dr. Patrick R. Yeatts. His area of expertise is: Oculoplastic Surgery; Orbital Tumors/Cancer; Eyelid Tumors/Cancer, Orbital Diseases. He is the only one listed in the 9th Edition (2010) "America's Top Doctors" located in your area (listed in the book).

As far as your husband's vision is concerned, I don't mean to be insensitive or stupid, but is it due to loss of cornea vision (is that what he lost)? If so, there are specialists listed who may also be of help.

Also, as he does have a GBM, time may be of the essence. In this instance, if you have a little window of opportunity, try to find a 3rd opinion to help balance what you have learned. As you well know, we can never have enough information when it comes to deciding the best course of treatment.

We are struggling with the same issue. I've had no movement or growth around the optic nerve or optic chiasm in 2 years and yet I am having issues with photophobia and eye strain. Our options on the table are surgery, radiation, a combination of surgery and radiation or none of the above. Do we wait and see what happens and lose my vision, do I have surgery and possibly lose my vision, or do I have radiation to that area and stand a 60+ % chance of losing my vision? We are torn because what if some new therapy is just around the corner and in a year or 2 we could safely radiate or operate and spare my vision? We too are in a quandary and can only hope that we make the best decision possible based on the information we receive. We are balancing what we hear in Philadelphia with the original surgical/radiation team at the Cleveland Clinic. At least in our instance, the 2 teams of doctors are in agreement about our options. We just have to decide what we want to do.

This is a very personal issue, one that I understand all too well. For me, it is an issue of Quality of Time VS. Quantity of Time. I already know that at some point, the tumors will kill me; the doctors have all agreed on that. The ones around the carotid artery can't be safely operated on and can only be radiated so many times before it doesn't do any good. That's what makes the decision about the Optic Nerve and Optic Nerve Chiasm so difficult.

But what we all have is HOPE. No one can ever steal that away from us. HOPE is the one thing that makes our arms a little longer when we think that we can't reach any more. HOPE helps keep us sane and positive during the times when we think that there is nothing sane or positive to any of this. And HOPE is what we have for our future.

Don't let anyone ever take that away. Please keep us posted.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

You may want to check out the Holden Comprehensive Cancer Center in Iowa. They have a website and the link to FAQ, which includes Optic Nerve Gliomas is:

http://webeye.ophth.uiowa.edu/toni/faq.htm#4 (at least that is the one on link)

Anyhoo, they are located at the University of Iowa and they specialize in Optic Nerve treatment. It would be worth a phone call or a look at the website to see if they can at least answer any questions you might have.

Hope this helps!

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