Delayed radiation side effects....(Patti B?)

[tjrasMOM]

Mom finished her 22 days of radiation on August 14th. Since then, she's experienced almost ALL of the side effects they warned us about. Her head was very burned and the redness appeared during the last week of radiation treatment. It actually got worse once treatment was completed, and just over the past few days I've finally noticed her scalp drying out & almost peeling as if it's an old sunburn. The worst of the side effects was the burning inside her ears. I'm assuming the radiation rays got inside her ears causing the skin inside to burn. She experienced fluid draining and some hearing problems, as well as an ear infection. Also, her headaches have not gotten much better.

Poor Mom...these headaches have been torturing her now for over 3 months. Now, the radiation, although I'm sure effective on attacking the cancer cells in her brain, also has caused fluid retention in her brain which causes more throbbing headaches. Her blood pressure has become very high. Mom and I have always had very low blood pressure. But Mom's has been extremely high lately. The doctor thinks this is either the cause or the effect of the headaches. Now she's also on blood pressure medication. Her pain medication has been upped to small doses of Morphine, but only when the pain is unbearable.

The doctors also warned of some temporary memory loss. Mom has started to notice that she can't remember simple things. I was with her the other night and witnessed her struggling a bit to tell me things or do things.

I'm amazed at what she's suffered through lately while still having a great attitude. To add to everything else, she has lost muscle strength in her legs. She almost can't bend down to pick up things. Recently she's gone outside to pick up the paper and once she's down, she's had to crawl back up the porch. A few weeks ago she needed my help getting back up from getting something out of the bottom drawer in the fridge.

She was given steroids to help relieve the water retention in her head, and we were told that the side effects would be muscle loss. This past week however, her doctor explained that the muscle loss could also be from the radiation. The radiation affects the brain's communication with the rest of the body. He explained that it is temporary and that she will regain her strength.

There's been so much to deal with lately with all these side effects hitting AFTER radiation and all at once, but Mom just keeps pushing through. Thankfully, this is all supposed to be temporary. We look forward to the coming weeks when symptoms ease up and we regain some bit of normalcy. =)

Patti B. -- I was just wondering if you experienced any of these side effects towards the end of your radiation? As for Mom's radiation...I think one of the doctors there developed a crush on her! LOL He kept asking her what the youngest age was that she'd date. So cute! Mom brought her radiologists treats every Friday. On her last day they took a picture with her & made her do a gangster pose with them. Made her turn her hat backwards & throw up a sign. TOO FUNNY! These guys were ALL humor. It was enjoyable for Mom to look forward to seeing them every day. On her last day they gave her a Certificate of Completion! If I could figure out how to post more than one picture, I'd upload that picture here on my profile. It's framed & on my fridge now. =)

[michellep]

I'm sure Patti will be posting soon and will be very helpful. I don't have any experience with radiation side effects since my hubby is just on chemo, but I wanted to tell you that I think you're a wonderful caring daughter and I wish the best for your Mom! I'm sure you'll be relived when these nasty side effects begin to subside. Take care!

[Barb73]

You are a wonderful, caring daughter. I know exactly what the radiation of over 20 zaps can do. My husband has survived them. His last WBR was over two years ago. So far, not one met has returned.

Yes, he had a ribbon of fluid in his brain as a result of that, but it has increased/decreased over the past two years. His short term memory has been an off and on again issue, but he can still do many of the things he once did of a mental nature. In fact, he does better when I cannot resolve the checking account, and completes it in fine fashion.

I worried so much that he would become mentally deficient. He has some problems, but nothing as were described in "worse case scenario." His humor is still intact. His ability to "push buttons" has never been erased.

Wishing you good vibes and please know that your caring and assistance is what has added greatly to your Mom's support.

Much success,

Barbara

[Suzie Q]

The headaches and high blood pressure appeared in my mom with Avastin therapy. Is your mom still on Avastin?

[Patti B]

Hi Tova-

I am so sorry that your mom is experiencing the bad side effects of the radiation. That was something I was so afraid of and actually had a meltdown the first day of radiation because I worried so much who would I be after this was all over. I am, however, on a clinical trial using an approved Alzhemiers drug to see if it will help stop the loss of cognitive thinking after WBR. Its a double blind, so I don't really know if I am taking it or not.

I am almost feeling guilty saying that I really had very few side effects at all. My head burned like a sunburn and my forehead, even though the mask was on, had huge dark tanned blotches which I did manage to scrub off. Behind my ears peeled terribly. I did have some headaches and earaches but I took the steroid for two weeks and am already tapered off of it. I really feel good and have already had two chemo sessions.

I ended on a Friday and on Monday Chris from Mass came to visit me and we ran like teenagers. Maybe it was the steroid that gave me so much energy.

At Cleveland Clinic, they have a bell that looks like a ships bell mounted on the wall. Your last day, all the techs walk you out to the lobby and you get to ring the bell!!! Its kinds cute altho I just wanted to get home and cut off the rest of my hair that was falling all around me.

I am hoping and praying that your mom starts to feel better soon. Please let me know how she continues to do.

Hugs - Patti B.

[Patti B]

Tova-

I just re-read your original post and realized that your mom had 22 treatments. I had only 15 so maybe thats the difference. It will probably take longer for her to get back on track than me.

And, yes, I was on Avastin and now having high blood pressure. It started out with horrid headaches. High BP unfortunately is a side effect of

Avastin. I have been off of it for over a year and still cannot come of the Norvasc and Atenelol. Guess once you have it, you have it for good!!!

Once again, Hugs and prayers for you and Mom.

Patti B

[Katy66]

My husband had WBR and the majority of the side effects didn't hit until afterward. He had hearing loss prior but it was definately worse. His scalp peeled and so did the inside of his ears, no draining though. Didn't really experience fluid on the brain from it but was on steroids the majority of the time. Good Luck and hang in there... I really can't imagine how difficult it is for the patient. I admire the positive attitudes!