Please share what you know about WBR

[mary colleen]

My husband is tentatively scheduled to begin Whole Brain Radiation in about 2 weeks, after his surgical wound is healed. I use the word "tentatively" because after reading various studies, I'm not sure that I won't end up questioning whether this is something he may want to reconsider.

That aside, I'm looking for input from any WBR-experienced patients or caregivers

regarding side effects and recovery time. I'm curious about the length and frequency of treatment, side effects, functionality during treatment, any care tips that I may need to be aware of, etc.

My husband has had substantial loss of eyesight from his tumor, so I'm especially curious regarding whether anyone had any vision damage from WBR - he certainly cannot afford to lose any further eyesight. He can't drive or work with his current eyesight, but he can do a lot of normal things, and I certainly don't want him to lose that functionality.

Any input is appreciated - thanks for your help.

[missyk]

Hi...

My mom was extremely anxious about WBR, especially the possibility of vision problems as her main tumor was right behind her right eye.

As far as side effect went for her...she had fatigue (common with most radiation therapies, it seems) and hairloss. She wasn't allowed to drive because of the chance of seizures (she never had one, though)...for the most part sailed through treatment. I believe she had 15 rounds, though I'm not completely positive on that.

I'm sure someone will come along with more indepth information for you. Hopes and prayers that his treatment works wonders!!

[Tanner]

My wife - Karen - had 16 shots of WBR. She was tired a lot more than usual. And cold. But she sailed thru it too. She has slowly been regaining her strength, hard to tell if it was the cumulative effects of the chemo or if it was just the radiation. Probably both. She slept for 20 hours a day. But had no eye issues with WBR. The doctor told us that other cancer cells could be lurking in her brain that were too small to detect with the MRI - that is why we opted to do the WBR. Kill the cancer. Hope this helps.

Tanner

[Nick C]

My mother was very tired, but now I wonder if it was the radiation. It turned out my mother had developed pneumonia and everything else basically failed very rapidly.

I guess my comment is, if WBR wears you out, OK, but if the patient is acting completely incapacitated, I would consult a doctor.

Those warnings aside, Mom did say radiation was a piece of cake for the times she did it. The decadron had her bouncing off the walls, she was glad the radiation would help her sleep.

[mary colleen]

Thanks all. Nick: Maybe I myself need WBR just to sleep these days - it's about all I haven't tried!

[Nick C]

I hear ya...I'm sure the stress keeps you up.

Hang in there.

And really good luck with the WBR.

BTW, the ACS has a pretty good brochure on WBR I'm sure they would get to you ASAP.

[Flowergirlie]

My hubby had a tough experience with WBR. I think it is good that you have more time to anticipate what affects it may have and that should help. My hubby was no longer able to eat once he started WBR and it seemed like none of the doctors were able to figure out why or offer any help. Things to look for based on our experience would be: lack of appetite, bathroom problems, severe dizziness, off balance/ falling.

I hope it all goes well though. I know some people handle it just fine and hopefully that is how it will be.

Peace...Flowergirlie

[dchurchi]

My husband Alan had WBR almost 2 years ago. we did

not have much choice at the time. Alan does have some

sort term memory issues that do appear to be getting

worse over time, but we adjust by writing things down

Also he has lost most the hearing in his left ear.

Now having said all that, Alan lives a very very active and high quality of life.

if you read through his profile you will see when the

tumor in his brain was discovered the Dr. did not think Alan would make it a couple of months.

The tumor was crushing his brain stem. (Alan was never told this).

It is now almost 2 years later. No one knows for sure

how one will react to treatments, but it was a life

saver for Alan.

[mary colleen]

Debbie,

Thanks so much for your information. I have always read your posts, and have admired your way of coping and getting to the good stuff, in spite of the rest.

While I worry a bit about cognitive defects from WBR, I worry far more about any risk of further vision issues.

Vic probably has about the amount of vision left that one needs in order to manage around the house and yard a bit, and that's about it. Still, we are only a week out from surgery, and good things could still happen as things heal.

You guys are heroes to me - God Bless!

[kamataca]

WBR saved my friend's life...at a cost.

He went through WBR 8 years ago. The drs never expected him to live 8 years, mind you. He is basically an Alzehemier's patient now. Finally they had a dr recently give the honest diagnosis of 'fried brain'--other than try to manage him on meds, there is nothing they can do.

His wife is, of course, glad they have had him around for the kids. Unfortunately, it is so bad now that her son is embarrassed to have his father out in public with them. She says that 8 years ago, no one warned her of this possibility.

That said, I would hope that WBR technology has improved over the past 8 years.

Prayers for you!

Kelly

[twodogs]

Hello Mary,

Many of us, myself included, have had PCI, a prophylactic procedure generally considered a lesser and limited degree of WBR.

My results have been pretty much as predicted by my radiation oncologist. Loss of instant recall and some deterioration of my vision have occurred. However, I'm 67 now and those things may have been imminent anyway.

I'm not the sharpest blade in the drawer these days but I do function fairly well four years after treatment. I do a local radio spot two days a week, an occasional local interest newspaper column and I recently accepted the job as chairman of our local streets and roads committee.

WBR is going to be a tough choice, I know. We leaned very heavily on the advice of my doctors.

Prayers and best wishes to you both.

John

[pammie]

Just finshed WBR on April 29. First tumor in occipital lobe took away the lower left quadrant of my vision. Have had seven aditional brain tumors so the docs convinced me that WBR was about the only way to touch the seed tumors. Deep fatigue has been my biggest problem. Just want to sleep and sleep. Am also taking temodar 7days on, 7 off. Today is the first day since i finished WBR that i have not spent most time sleeping. So I am praying and hoping that the fatigue will begin to lift a little each day. So far i don't have any cognitive problems and take care of my physical needs just fine. There may be cognitive problems down the road, i don't know. I am very thankful that God has brought me to this point. Each person is unique so their reactions will be just a little different. Age of treatment with WBR is also a big influence on how the patient responds cognitavely. Praying that you will be at peace with whatever decision is made. pammie

[mary colleen]

John: Thank you - your activity level reassures me. You probably do more than I do!

Pammie: Your profile is amazing - your endurance through this, with MS to deal with as well, is inspiring. In addition, you are the first person I have run into so far that also had an occipital lobe tumor.

Thanks!

[teriw]

Mary Colleen,

Looks like you got some great advice from people with the experience that counts. I'm not one of those, but I do want you to know I'm thinking of you and hoping that you both find peace about this decision. The loss of eyesight is a frightening prospect, for sure.

I'm getting ready to go to bed shortly, so you'll be at the top of my prayer list...

[laban]

Bill had 17 rounds of PCI. He does have a little short term memory thing going on and did have some sensitivity issues for a time but is ok now.

Laurie

[daddyslittlegirl]

Is it okay if I ask some questions about this too? My dad has now had 9 of 13 treatments. He is starting to get very tired. That is to be expected though since he didn't really have much of a break after his 38 rounds to the chest. How long will it take before he starts to get his strenght back? He has also started complaining that his vision is blury. Do you think this is from the tumors or the WBR? Lastly, (and this is the least important) many of you wrote about hair loss. How long does that take for it to happen? My dad has started to lose a strand here and there. I'm asking because he wants to get a haircut, but my mom has been telling him to just leave it alone (because she's anticipating it falling out soon). He has always taken my 2 year old son with him for his haircuts and I didn't want to bring it up to him if it's not a good idea. Anyway, thank you so much for the info!

[twodogs]

daddyslittlegirl,

I was so hammered when everything was finally over that I considered it a major accomplishment just to walk to the mailbox and back. I'm still only a fraction as active and strong as I was going into this. The positive part is that, although my stamina is pretty slim, I generally feel very good. I think I'm gradually improving but not by giant leaps and bounds. I do have friends and acquaintances though who have come through treatment seemingly as strong and active as before.

I got through my first months of radiation and chemo with all my hair intact. Then I went in for PCI and after about one week my hair was going away so fast I just had it all buzzed off. I think the haircut was just before Christmas and by March my hair had begun to regrow. That has been interesting to say the least. Many people had never known me with anything but white hair and were amazed that it came in thick and dark brown. Since then it's gone to a lighter brown and is gradually thinning and going back to grey, maybe even white again.

Good luck and best wishes for you and Dad.

John

[alexan]

Dear Mary Collen, They gave you a good advice. I don't know anytging, but you & your dad are on my mind.

hugs & prayers

bucky

[daddyslittlegirl]

John,

thank you so much for the info. It sounds like I should not push my dad to og with us for my little guys haircut??? My dad is the same way. I'm 34 and only remember him with his silver hair. They did tell him that it may grow back (assuming he loses it) darker or curier or maybe not at all. Did you have any vision loss or blured vision? If so, was it temporary? Did they ever tell you that you couldn't drive? And if so, was that temporary? These are alot of questions I should probably just pm you (sorry). We keep telling him once this is over he will start to get some of his strength back and I keep praying for that. Thanks again.[/b]