CSN Login
Members Online: 14

Radiation induced deficets: permanent or temporary?

connsteele
Posts: 232
Joined: May 2011

Our son, who is 34, has GBM. He had surgery on April 18, and only enough tissue was removed to get a biopsy. He is currently midway through radiation and Temodar treatment. However, since he started radiation, he has really declined, especially re: gait, fine motor, and speech. Last week, the docs were concerned that maybe it was tumor progression rather than radiation induced. They doubled his Decadron to 24 mg a day, and we did see some improvement...nothing dramatic... so they're thinking it's radiation. However, he still is much worse now than after surgery.

I'm wondering: has anyone experienced a dramatic decline while on radiation? if so, did gait, speech improve after radiation was done? I'm concerned that this may be permanent.

palmyrafan's picture
palmyrafan
Posts: 397
Joined: Mar 2011

I'm sorry to hear about the problems your son is having.

As I'm sure you will discover, radiation affects all of us differently, even with the same tumors. It depends on the location of the tumors, the intensity (dosage) of the radiation, any medication that the patient might be on (read the blog about Decadron and Steroid Psychosis), plus their overall health prior to radiation and/or surgery beginning.

I had high intensity traditional radiation (face mask, screw your face to the table) in 1996. I did not experience issues with speech, memory or gait during radiation; however, AFTER radiation was complete I had some issues with memory and other cognitive abilities.

Again, it can depend on the mitigating factors as listed above. Continue to keep a watchful eye on your son and talk to the doctor about your concerns. Perhaps keep a journal so you can quickly reference any change or differences you note on a daily basis.

Peace.

Teresa

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

Hi

sorry to hear about your son's decline

i just had WBRT completed last feb 7 and as far as side effects are concerned I didn't experience any decline in speech, memory or gait. People react differently to cancer treatments but it's strange for someone his age to decline during radiation, radiation side effects also depend on the type of radiation a person is having (whole brain, 3d conformal, GK etc.) I have read that there are temporary early cognitive issues. Another reason for his decline could be the chemo and radiation combo given at the same time. Whatever the reason is, let's just pray and hope that his condition will improve. I will include your family in my prayers

God bless

Rory

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Had some left sided weakness, decardron and avastin helped. We were told that the radiation starts breaking things down in there and things would get worst before getting better. And it got better...Just havnt got off that decardron yet...

micgrace
Posts: 131
Joined: May 2011

Grace is coming up for a radiation dose soon as the rad mask will be complete soon. The problem with radiation it can cause severe necrosis and oedema just like the original cancer and therefore has the same effects. The treatment is the same if necrosis is present (resection and steroids).

My hopes lies on the traditional intense radiation to sufficiently reduce the tumor to give Grace a fighting chance. The part that couldn't be removed is pressing into the left ventricle and that is causing immense problems. Hopefully the radiation will destroy it.

Anyway, today I became the poditrist and clipped Graces toenails and fingernails and put on red highly glossy nail polish. I received plenty of complements and I am sure more than a few nurses would not have minded if I did theirs as well while at it. She looked pleased with the result.

connsteele
Posts: 232
Joined: May 2011

Is your sister done with radiation? If so, how long ago and is she still on the decadron? Also, for some reason, the docs here haven't mentioned the Avastin. His tumors are aggressive and this is his second time having radiation for a brain tumor. He was previously diagnosed with a medulloblastoma at the age of 8, which the docs say the radiation back then probably caused the GBM 26 years later as the tumors are all located in the same location where he received the boost for the medullo. Because of that, docs don't want to give him the normal dose for GBM as it would cause severe necrosis to brain tissue that has been previously affected by radiation. He's getting 2/3 the normal dose and just to the cerebellum, where the tumors are located.

The high dose Decadron helped his symptoms some, but nothing dramatic. He'd like to get off the Decadron ASAP as it affects his blood sugars (he's also diabetic).

We are thinking that he will need to apply for social security disability as we don't really know the outcome. The only thing we've been told is that these tumors won't go away and that treatment will only "slow things down." But then, when he was 8, he was given a 20 % chance of surviving 10 years and he's now 34, has lived independently, and held down a good job. So, what do the docs know!

palmyrafan's picture
palmyrafan
Posts: 397
Joined: Mar 2011

If he is going to apply for Social Security Disability, I would do so now to get the ball rolling. It can take time to fill out all the paperwork and get all the documentation together from all the different doctors, etc.

Peace.

Teresa

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Last day of radiation was May 6, She had to stop the avastin and temador the week before because of low platlets, The next day she went septic and spent 16 days in the hospital. Sepsis kicked her butt, has very low energy , but is getting a little better, She is still on 4 mg of decadron. Was suppose to go down to 2 mg last week but didnt. Doctor wants her off in one month from now. She started back on avastin and the 5 day temador today. We had a long delay because of the sepsis. With the decadron and avastin she got back 99% of the left sided weakness in about 2 weeks or so. A little forgetful now, but mostly with all the appt. she has.Im having a hard time keeping up too. This is all such a new kind of life.

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

yeah right?! That's what doctors do give survival rates and stuff to scare their patients. I don't think that treatments will only slow things down as I have read a lot of survivor stories of GBM patients who are alive 10-20 years since they were diagnosed. Blessing to your son.

Rory

micgrace
Posts: 131
Joined: May 2011

Hi seen Grace again. I sure hope she is one of those. I am trying to persuade the docs to let me look at the MRI and CT scans to see for myself what exactly is going on. However her situation keeps deterioating each day and we seem to be forever waiting for treatment to start. She was scheduled for a CT scan with contrast but was thrashing around so much that had to be abandoned. I still have not been updated and that scares me.

palmyrafan's picture
palmyrafan
Posts: 397
Joined: Mar 2011

Hey again,

For the CT Scans and MRI's, my docs have always offered to sedate me (twilight sleep) in order to get MRI's or CT scans if I am having problems with vertigo or seizures. I have never needed it, but it is nice to know it is available if needed.

As for statistics, I think that is the worst thing a doctor can do is to tell a patient how long they have to live. It becomes a self-fulfilling prophecy and can keep the patient from seeking therapy and/or other medical opinions when needed.

Good luck.

Teresa

micgrace
Posts: 131
Joined: May 2011

Grace does seem to calm down after endo. I know they still have a few scans to do for the dreaded radiation mask. And the clock keeps ticking.....

gdpawel's picture
gdpawel
Posts: 548
Joined: May 2001

When brain tumors are treated with radiation therapy, there is always a risk of radiation-induced necrosis of healthy brain tissue. Insidious and potentially fatal, radiation necrosis of the brain may develop months or even years after irradiation.

This poorly understood side effect can occur even when the most stringent measures are taken to avoid exposing healthy tissue to harmful levels of radiation. In most cases, radiation necrosis of the brain occurs at random, without known genetic or other predisposing risk factors. The only treatment options typically available for radiation necrosis of the brain are surgery to remove dead tissue and use of the steroid dexamethasone to provide limited symptom control. But clinicians have not found a way to stop the progression of necrosis, despite having tested a range of therapies including anticoagulants, hyperbaric oxygen, and high-dose anti-inflammatory regimens.

However, recent studies at M. D. Anderson have shown that the monoclonal antibody bevacizumab (Avastin) may be able to stop radiation necrosis of the brain and allow some of the damage to be reversed. Victor A. Levin, M.D., a professor in the Department of Neuro-Oncology and the senior researcher on the studies, said the findings suggest that radiation necrosis of the brain can be successfully managed-and perhaps even prevented-with bevacizumab or similar drugs.

The need for such a breakthrough is as old as radiation therapy for cancers in the brain. "No matter what we do or how good we do it, we know a small percentage of patients who receive radiation therapy to the central nervous system will suffer late-occurring radiation necrosis," Dr. Levin said. "We used to think it was the dose that was causing problems. Then we did a study and found that there was little to no relation to radiation dose or radiation volume-the necrosis occurred simply by chance. So it is impossible to say which patients will develop this problem; we just have to monitor them and hope for the best."

Like necrosis, the discovery that bevacizumab has an effect on necrosis can also be attributed to chance. Bevacizumab, a newer drug that prevents blood vessel growth in tumors by blocking vascular endothelial growth factor (VEGF), was originally approved in the United States for the treatment of metastatic colon cancer and non-small cell lung cancer. An M. D. Anderson group that included Dr. Levin decided to test the drug in patients who had VEGF-expressing brain tumors. "Some of these patients also had necrosis from prior radiation therapy, and we were struck by the positive response of those patients to bevacizumab," Dr. Levin said. "We had never seen such a regression of necrotic lesions with any other drug like we did in those patients." The observation prompted the researchers to design a placebo-controlled, double-blind, phase II trial sponsored by the U.S. Cancer Therapy Evaluation Program in which bevacizumab would be tested specifically for the treatment of radiation necrosis of the brain.

The trial is small, having accrued 13 of a planned 16 patients, and is limited to those with progressive symptoms, lower-grade primary brain tumors, and head and neck cancers. But the results have been unlike anything the researchers have seen before in radiation necrosis therapy. All of the patients receiving bevacizumab responded almost immediately to treatment, with regression of necrotic lesions evident on magnetic resonance images, while none of the patients receiving the placebo showed a response. The results were striking, and all of the patients who switched from placebo showed a response to bevacizumab as well. So far, responses have persisted over 6 months even after the end of bevacizumab treatment.

Side effects seen in the trial so far included venous thromboembolism in one patient, small vessel thrombosis in two patients, and a large venous sinus thrombosis in one patient. Dr. Levin is unsure whether the side effects were caused by therapy or the radiation necrosis itself. "We're also not absolutely sure what is causing the positive effects against the radiation necrosis," he said. "We presume it's related to the release of cytokines like VEGF, since bevacizumab is very specific and only reduces VEGF levels. We think aberrant production of VEGF is involved with radiation necrosis of the brain, and the fact that even short treatment with bevacizumab seems to turn off the cycle of radiation damage further confirms the central role of VEGF in the process."

The multidisciplinary research team has also postulated that radiation therapy damages astrocytes, a cell type involved in various brain functions, and causes them to leak VEGF. This leaked VEGF might then cause further damage to brain cells and further leakage of VEGF. "It gets to be a very vicious cycle," Dr. Levin said. "The question is, is that all that's going on?"

Dr. Levin hopes that the answers to that question and others may lead to preventive measures against radiation necrosis, beyond what is already done to control the development of radiation itself. Perhaps bevacizumab can be given in low doses before radiation or intermittently afterward to reduce VEGF levels and protect the brain from abnormally high levels of the protein. He hopes such approaches can be tested in future studies. "Just the fact that bevacizumab works has helped us understand so much more about what happens in radiation necrosis," he said. "Everything we've tried up until now has been a brick wall."

Source: OncoLog, May 2009, Vol. 54, No. 5

http://www2.mdanderson.org/depts/oncolog/articles/09/5-may/5-09-2.html

Visualizing the effects of Avastin (bevacizumab)

http://www2.mdanderson.org/depts/oncolog/articles/09/5-may/pop.html

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

It began on January 6th, exactly one year after the last radiation treatment.
It is now July 1st? I think.
She is currently enrolled in occupational, speech and physical therapy at one of our local rehab places.
She is VERY slowly staring to improve, but still dosen't talk in complete sentences and still has many of the alzheimer type traits that would startle any loved one.
Yet I think it is coming back.
I have added as her picture a comparison shot of the necrosis first starting up, then the February shot of it in full force where she couldn't even set up straight and finally the third scan two weeks after he first infusion of avastin.

She has destroyed our house, wears her clothes backwards and has single handidly kept the "Depends" company in business.
All from the necrosis.
If you get a routine MRI and it looks like the middle picture, the middle scan, raise holy heck with your NEURO-oncologist to get you some avstin!

sadinholland
Posts: 245
Joined: Apr 2011

There was something like that showing up on my husband's last sccan but it was more along the outline of that spot in the middle rather than looking like a round circle like that. Should I be alarmed? They told us it may be effects of his treatment or something else.
Not that I am not alarmed already! The way the put it though, it was like if it is effects of the treatment, it is nothing to worry about. At least that's how I took it.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network