Whole Brain Radiation - I Need Your Help

[Peachy]

In July, I was told by a radiation oncologist that I will never again feel as good as I do now. It is suggested that I have whole brain radiation followed by six weeks of chemotherapy. Until now I have put off treatment to spend some quality time with those I love.

I considered putting off any treatment until I begin to feel poorly. Right now I feel fine with a bit of heaviness in my chest and some lightheadedness and nausea in the mornings.

I recently made a decision to have the whole brain radiation. I need some input into what I might expect from this treatment... how I will feel, discomforts, pain, mood swings, hair loss, other side effects, etc. and what my caregiver might expect from me.

This is such a great forum for information because you have been through it, and are not just telling me what a doctor might speculate.

Thanks for any help or advice. I will truly appreciate it.

[alexan]

Peachy, me too had 4 little mets in my brain, since tthat I had hey where so small the decide for the WBR. 18 at 200. It has beeing 3 month since I finish and not really bad side efects. Sometime I am not hungry & get tired more often, but I still doing the same things i did before. 3 days after the radiation we went to Malorca for a month and the only problem that I had was a panic atack. Go a doit, you are in a good shape. Staage IV is not the death sentence anymore. dont look at stadistics. they kill you.

All the best

hugs bucky

[Peachy]

HI Bucky,

Thanks you so much for your reply. I'm happy that you didn't suffer many side effects from the WBR. I pray that you will continue to improve. Good luck and God bless you.

Peachy

[wondermom]

Hi Peachy,

My mom had WBR. It was in 15 sessions. She was having chemo concurrently so I am not sure which side effects are from what. She did have hair loss but that was mostly from the chemo I think. Although, I know that can happen with WBR as well. Mom also had some fatigue but it seemed like it was kind of delayed. She started to feel more tired after treatment was over. The procedure itself was quick and easy with the main side effect for my mom being fatigue.

Jill

[alexan]

Oh Peachy i forgot, I never lost my hair with chemo evenif I was soupouse. With the WBR I have being bold since the begining of the treatment. But if they kill the cancer who care about hair.

Hugs 7 prayers

[mary colleen]

My husband completed 20 sessions of WBR on 6/22. He lost all of his hair after about 12-13 treatments. Like Bucky said, no big deal there. The most significant other side effect was ongoing fatigue after about the first week of treatment, and persisting for about 4-5 weeks. He did some normal activity during all of this, but on a pretty limited basis. Other side effects have been a loss of appetite, an occasional sense of fullness within the head, irritation to the irradiated areas of skin, and some inner ear irritation. No significant pain, no significant mood swings.

My husband did recover quite a bit of his energy and other functionality about 4 weeks after WBR. He is currently showing a resurgence of symptoms, but I'm doubtful that this is attributable to WBR. I'm telling you this part because you may see a new post from me describing to the board what is currently going on - don't want you to think that this has been continuous since the WBR.

It was all "doable", but it's good to be prepared for the side effects. I do read once in a while of someone going through WBR with virtually no disruptions. Best of luck to you.

[teriw]

Peachy,

Bill had just 10 sessions of WBR. He did lose his hair. It took a couple weeks for that to happen. He felt unsteady on his feet, but I'm not sure if that was the WBR or the steroids. Other than that, no obvious side-effects.

Wishing you the best,

[Peachy]

Thank you for your responses. This really helps me to prepare for the radiation, and it will help my son to know what to expect.

God bless you all!

Peachy

[donaght]

I was on Decadron during wbr. I took 4 mg 4 times a day for 4 weeks and then slowly weaned off the drug over the course of six weeks.

While on the drug I became an insomniac. I was down to 3 or 4 hours of sleep every day and spent most of my waking hours being active. As the drug built up I became more irritable and edgy. My appetite increased as well, but that was important.

Coming off the steroids was harder. I suffered from swelling (edema) and cushinoid syndrome. I got a strange rash on the legs. The blood vessels constricted interfering with the blood circulation through my hips and knees. That caused the most pain and it was hard to treat except by taking lots of Tylenol 3 (with it's own side effects.)

Unfortunately, the withdrawl of the steroid overlapped with delayed fatigue from the radiation, so when I crashed, I really crashed. I was always a very active person and found ways to stay busy at home and off the couch. Being unable to get off the couch was so depressing. But as I didn't have much choice in the matter of whether to take the drug or not, I made the best of the situation.

good luck to you,

Tom

so that blood flowing through my hips

[Peachy]

Thank you so much, Tom. Your response was very informative. My doctor says I have no edema in my brain, so I will not need the steriods. I have had four treadments of wbr and I feel lightheaded and very nauseous. I still have six treatments to go. Did you smell an awful smell during the radiation? I smell an awful smell, like chemicals burning. This smell stays with me the entire day and adds to my nausea.

[alexan]

peachy, after 2 month of the wbr I start feeling a little nauseous & not hungry at all & really tired, now I am much better & back to eating a lot. Like you no steroids/

Best of luck & a lot of prayers

bucky

[Peachy]

Thanks, Bucky. I will look forward to feeling better.

Peachy

[DrWest]

Peachy,

I haven't heard of people having a change in what they smell during radiation, but then I haven't gone through it, so others here may say that they experienced it too. There are parts of the brain (temporal lobe) that can be tickled/activated, such as by metastases, to lead to something like hallucinations of smell, like "rotting strawberries" or "burning plastic" strangely enough as a common report. I don't know if you have any cancer involvement in your temporal lobes (you almost certainly wouldn't have been told that level of detail, since it really doesn't change how it's managed vs. other parts of the brain). If the cancer is causing the symptoms, radiation may diminish that sensation over time, or potentially steroids or even anti-seizure medicine might improve that. It's probably worth keeping track of whether that's getting better, worse, or just not changing over time, and keeping in touch with your docs about whether they might suggest anything. These changes in sensation of smell don't tend to be so debilitating, but if it's really bothersome, they may be things to try based on discussions with your medical team.

Good luck,

Dr. West

[donaght]

Hi again,

glad to hear you won't need the decadron.

I've never smelled any burning during any of the radiation I've had. I can't guess what that might be about. But if it bothers you maybe you should mention it to see if anything can be done.

Tom

[Heather_T]

I know the smell you are talking about. For me as soon as the radiation starts I smell something don't know what it is but it stinks. I thought it was just me. haha

[Peachy]

Thank you all for the useful information you provided.

Dr. West, when the radiation begins, I smell a putrid smell somewhat like chemicals burning. I did mention this to the radiation team and asked if I could hold my breath during the treatment. They responded that the treatment was quite long and that they didn't think I should hold my breath for that long a period of time. I then realized that the smell was prevalent only during the first 5 or 6 seconds of the treatment on each side of my brain. We agreed that they would signal me when treatment begins. I now hold my breath for the first several seconds and no long have to withstand the smell or the resulting nausea that I had endure for the rest of the day.

Heather, thanks! Now I know that I'm not nuts. The radiation team did look at me queerly when I tried to explain the experience I was having!

Peachy