Effects of WBR

Are any of you ladies familiar with the long term effects of WBR? My mom had WBR in 02/2003 followed by Gamma Knife in 04/2003. When brain mets appeared they told us she was terminal and the WBR would give her some time. We later found this sight and she was eligible for Gamma Knife. All went well and mom was doing reasonably well. She was walking, cooking, taking care of herself ect. In October she had her six month scan the tumors were gone and most of the brain swelling was gone. She now has holes in her brain where the tumors once were. Since the end of October mom has gone down hill significantly. The only thing she can basically do on her own now is feed herself. They say that there is no new cancer and aren't giving us any reason for such drastic decline. Is this a result of WBR? Will this continue? We don't really know what to do at this point. Any thoughts or suggestions would be greatly appreciated.

JaneC

Come on ladies, surely one of you have an idea of what is going on? What about the care givers? Have any of you seen this type of decline? JaneC and I are brother and sister and we (along with our little siser) are trying to get some understanding of what is going on. It is just hard to imagine that from October until now you can have someone go from living on their own to being totally dependent on us for help. We are taking care of Mom the best we can but we have a need for answers. Any thoughts? I would just like to have an answer as to why, when there is no new cancer and the brain tumors are gone, do I have to carry her from one room to the other and put her in bed because she can't walk....and of course, explain to her why I can't take her to the jewelery store at midnight to look at diamonds....

To the best of my knowledge, any of the radiation procedures to the brain are more inclined to do 'long term' damage to the person dependant on age...the youngest and oldest.

And I don't think the damage is as severe as before, because of what it says down the page here on amounts of radiation given in each dose. However, damage still occurs. I can't believe your doctors have not talked to you about this. Unconscionable in my opinion.

These are some of the risks I was not willing to take, so opted to have THREE Stereotactic Radiosurgies, against the advice of my radiation onc. He in fact, became quite angry with me.

I am pasting some of the info I have saved over time. I am so sorry for your mom...and your family. I can't seem to find the right words here, that express what I want to say to you. I am angry and sad this has happened. Want to hug all of you. And wish I had more to offer.
pattyz



Whole Brain Radiation

Less Likely But Serious

Temporary aggravation of tumor symptoms such as seizures or weakness
Drainage from the ears or plugging of the ears with decreased hearing
Memory loss, behavioral change and/or increased sleepiness (occurring four to ten weeks after the radiation therapy is completed and lasting for several days up to two weeks)
Cataracts and eye damage with the possibility of blindness
Severe local damage to normal brain tissue (necrosis), which may require surgery

Certain drugs used in the treatment of brain tumors may cause kidney damage. Patients are given large amounts of fluid while taking these drugs. Patients may also have tingling in the fingers, ringing in the ears, or difficulty hearing. These problems may not clear up after treatment stops.
Fluid accumulation in your middle ear may cause you to experience a feeling of "plugged" ears and decrease your hearing in the ear that is in the radiation treatment field. This fluid accumulation is usually temporary and can result from inflammation of the middle ear. Should you develop this problem, your radiation oncologist may prescribe medication to help "dry-up" this fluid. Also, your ears will be inspected for any signs of infection which may occur with the irritation and fluid build-up in the ear. An antibiotic will be prescribed should this occur.
Long term injury from radiation is much less common than the side effects noted above. Your radiation oncologist will talk to you about these less common side effects.

Risks of Gamma Knife Surgery

As with any operation, there are some risks associated with Gamma Knife surgery. Other than mild nausea or headache related to the application and removal of the guiding device, there are usually no immediate side effects of Gamma Knife treatment.

Possible delayed (3 to 18 months after treatment) transient or persistent side effects depend on the size and location of the tumor or AVM and include problems such as weakness, numbness, hearing loss, imbalance or worsening of vision.

And.............

MORBIDITY OF WHOLE BRAIN IRRADIATION

Acute: erythema in scalp, dry desquamation, hair loss, otitis media, HA, nausea and visual disturbances, due to increased ICP.

Early delayed: Somnolence syndrome (1-4 mo after XRT), due to interference in the metabolic turnover of the myelin.

Long-term effects: The literature of the early and mid-80s is flooded with papers reporting long-term side effects, such as dementia, memory loss, radiation-induced necrosis, leukoencephalopathy, in up to 50% of two year survivors. It is now known that WBXRT below 60 Gy@2 Gy/fx very seldom produces radionecrosis, although there is a strong dependency on the fraction size.

Very few patients survive longer than a year, so in general, long-term effects are not a concern, with the exception of patients with solitary brain metastasis. Because of the relationship between large fraction size and long-term side effects, the so called standard of 30 Gy/10 fractions is being challenged; in modern research protocols that include whole brain irradiation, the recommended treatment is 37.50 Gy in 15 fractions.

i really dont know the answer to your question. my mom had wbr back in sept of 03 and is doing pretty well now. she is on 4mg of decadron daily to control the swelling from the dead tumors, but has no symptons. i have heard of brain necrosis (sp) after wbr. i believe that sometimes the wbr also kills healty cells. but im not sure about that. you may want to try puttin radiation necrosis into a search ngine and see if you can find anything.

how long have you had brain mets? something in that post scares me. the sentence that says most live 1 yr w brain mets. i have talked w several ppl that have had mets to the brain for yrs and are still here. our onc says that he believes that the tumors can be contolled. is that what you have been told?

My mother received WBRT last November and radiosurgery in December. Now she is experiencing symptoms (nausea, cognitive problems, fatigue) that resemble the problems she had when the brain mets were first diagnosed. I'm hoping that this is a subacute reaction due to myelin depletion and swelling, but the doctors haven't been very helpful in explaining what is going on or whether we can expect improvement. She is on Decadron, and we don't know when or if she'll be able to get off of it. I wish I could help, but I'm as confused as you are.

To the best of my knowledge, any of the radiation procedures to the brain are more inclined to do 'long term' damage to the person dependant on age...the youngest and oldest.

And I don't think the damage is as severe as before, because of what it says down the page here on amounts of radiation given in each dose. However, damage still occurs. I can't believe your doctors have not talked to you about this. Unconscionable in my opinion.

These are some of the risks I was not willing to take, so opted to have THREE Stereotactic Radiosurgies, against the advice of my radiation onc. He in fact, became quite angry with me.

I am pasting some of the info I have saved over time. I am so sorry for your mom...and your family. I can't seem to find the right words here, that express what I want to say to you. I am angry and sad this has happened. Want to hug all of you. And wish I had more to offer.
pattyz



Whole Brain Radiation

Less Likely But Serious

Temporary aggravation of tumor symptoms such as seizures or weakness
Drainage from the ears or plugging of the ears with decreased hearing
Memory loss, behavioral change and/or increased sleepiness (occurring four to ten weeks after the radiation therapy is completed and lasting for several days up to two weeks)
Cataracts and eye damage with the possibility of blindness
Severe local damage to normal brain tissue (necrosis), which may require surgery

Certain drugs used in the treatment of brain tumors may cause kidney damage. Patients are given large amounts of fluid while taking these drugs. Patients may also have tingling in the fingers, ringing in the ears, or difficulty hearing. These problems may not clear up after treatment stops.
Fluid accumulation in your middle ear may cause you to experience a feeling of "plugged" ears and decrease your hearing in the ear that is in the radiation treatment field. This fluid accumulation is usually temporary and can result from inflammation of the middle ear. Should you develop this problem, your radiation oncologist may prescribe medication to help "dry-up" this fluid. Also, your ears will be inspected for any signs of infection which may occur with the irritation and fluid build-up in the ear. An antibiotic will be prescribed should this occur.
Long term injury from radiation is much less common than the side effects noted above. Your radiation oncologist will talk to you about these less common side effects.

Risks of Gamma Knife Surgery

As with any operation, there are some risks associated with Gamma Knife surgery. Other than mild nausea or headache related to the application and removal of the guiding device, there are usually no immediate side effects of Gamma Knife treatment.

Possible delayed (3 to 18 months after treatment) transient or persistent side effects depend on the size and location of the tumor or AVM and include problems such as weakness, numbness, hearing loss, imbalance or worsening of vision.

And.............

MORBIDITY OF WHOLE BRAIN IRRADIATION

Acute: erythema in scalp, dry desquamation, hair loss, otitis media, HA, nausea and visual disturbances, due to increased ICP.

Early delayed: Somnolence syndrome (1-4 mo after XRT), due to interference in the metabolic turnover of the myelin.

Long-term effects: The literature of the early and mid-80s is flooded with papers reporting long-term side effects, such as dementia, memory loss, radiation-induced necrosis, leukoencephalopathy, in up to 50% of two year survivors. It is now known that WBXRT below 60 Gy@2 Gy/fx very seldom produces radionecrosis, although there is a strong dependency on the fraction size.

Very few patients survive longer than a year, so in general, long-term effects are not a concern, with the exception of patients with solitary brain metastasis. Because of the relationship between large fraction size and long-term side effects, the so called standard of 30 Gy/10 fractions is being challenged; in modern research protocols that include whole brain irradiation, the recommended treatment is 37.50 Gy in 15 fractions.

Hi Kim,
I also have been living with mets to the brain for almost a year now. Had wbr in July and having some problems with side effects, and have some tumors remaining. I see the survival length and get very upset. Lets remind ourselves that this takes in a whole pool of people with probalbly all different types of cancers. I'm sure lung cancer in the brain must take more radiation, and survival for lung cancer is never as good as breast. Im having a hard time staying positive, but we have too!!

Take care,
Julie