Whole Brain Radiation

This is my new Yule Brenner look. But let me explain how this came about.

I finished chemo on May 30th. At that point Scott Lunin told me that there is nothing further to do, other than perhaps WBR (whole brain radiation). (When you do WRB without having any detectable tumors, it is known as PCI -- Prophylactic Cranial Irradiation). The idea is to irradiate the brain before the cancer metastasize to the brain.

My understanding is that the more robust the response lung cancer patients have to chemo and radiation, the more likely it is that the cancer will move to the brain. I think of it like a round-up. We poisoned the body and killed most of the cancer -- to the point where it is not now detectable. The only place of "escape" is the brain, where the blood-brain barrier prevents chemo from working effectively on cancerous cells. PCI will (theoretically) take care of any cancer cells hiding in the brain. At least that is the theory.

Knowing that after consolidation there is no further treatment that we can PROACTIVELY do, I considered whether or not going the next step to PCI was worth the risk. I asked the question to my online Lung Cancer support group. To say the least, the responses were not encouraging. Here is one reply regarding side effects:

Radiation Therapy Side Effects

The side effects of Radiation Therapy can be classified as Acute, Sub acute and Delayed. Acute reactions occur during the course of treatment and are temporary. They are manifested as signs of increased inter-cranial pressure or worsening of neurological deficits. They result from an increase in cerebral edema (abnormal accumulation of fluid). The administration of corticosteroids usually decreases or alleviates symptoms. Steroids are generally administered during the course of therapy to prevent this occurrence. Other acute reactions are nausea, vomiting, anorexia (loss of appetite), fatigue, alopecia (loss of hair) and skin irritation.

Sub acute reactions generally develop one to three months after completion of therapy. These are temporary in nature. Symptoms include anorexia (loss of
appetite), sleepiness, lethargy (drowsiness) and an increase in neurological deficits. These effects result from the temporary disruption of myelin formation, which helps speed the relay of nerve signals. It takes approximately six weeks for myelin to repair.

Delayed reactions usually occur 6-24 months after completion of therapy. These effects are irreversible and often progressive. They result from direct injury to brain tissue and blood vessels. These reactions are due to changes in the white matter and death of brain tissue caused by radiation-damaged blood vessels. Symptoms vary from mild to severe decreased intellect, memory impairment, confusion, personality changes and alteration of the normal function of the area irradiated. Leukoencephalopathy (degeneration of the white matter) occurs at the tumor site and surrounding irradiated brain. The clinical manifestations range from mild cognitive neurological impairment to dementia to death.

Those at increased risk for long-term radiation effects are children less than 2 and adults over 50 years of age. Long-term effects can be initially managed to some degree with corticosteroids and surgery to remove necrotic tissue. Other long-term reactions include loss of vision, development of secondary malignancies (oncogenesis) and pituitary-hypothalamic dysfunction (changes in normal hormone levels) leading to problems with your thyroid, sugar metabolism, fertility or ability to process water.

Sources: International Journal of Radiation Oncology
University of Pittsburgh Medical Center

You get the idea. Electing to have PCI was not something you decide lightly. I spoke at length with my doctors, other cancer patients, researched what I could on the internet, etc. At the end of the day, there was no medical studies that said it was PROVEN to be a good idea, but then, there were no studies that said it was NOT! Part of the problem here is that your doctor does not want to give medical advice that is not "evidenced based." The fact of the matter is, while it might make logical sense, it has not been proven and is therefore not typically recommended.

I decided that I would rather be dummied down than dead. What do I have to loose? If I DON'T do it and develop brain cancer, I will kick myself for not having tried. If I never develop brain cancer I will look back on it as having perhaps been a contributor to helping me survive. If I get brain cancer 3 years from now because, who is to say I would not have developed it anyway? The way I looked at it, I have little to loose and everything to gain by giving it a try.

It turned out that, in order to enter the clinical trial, I had to have my last treatment (including chemo and radiation) within a certain window of time, which worked out to be July 18th. If I did not get the PCI done by that date, I would become ineligible for the clinical trial.

I got back from the wedding on June 14th. I began PCI on June 30th. The treatment required that they stretch a mask over you to position you for the machine. As in the chest radiation, there was a certain amount of set-up time required.

Once the set-up was complete I went to 21st Century Oncology every day before work for three weeks, with each session lasting only a few minutes (2 grays per day X 15 days). The 30 grays was half of what I got in radiation to my right lung. I was lucky in that I was able to complete the treatment without the use of steroids. The only side effect was the loss of hair. I was loosing it in patches and decided to simply shave my head. It has not since come back!

I am glad to have done this as I don't believe I am going to suffer any bad side effects. I want to have done everything possible to prevent the cancer from returning. Realistically I know that the cancer can (and probably will) come back. I would like to at least have the satisfaction of putting up a good fight. Now it is on to the vaccinations and clinical trial! Let's roll!