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Need to know your WBR experience please I start tommarow.


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Posted

Jen,

Do a search on SDianneB's posts. She posted about her experiences every day starting with Day 0. Should help walk you through everything. Good luck tomorrow.

Posted

Jen (and Ry) Dianne didn't have WBR...she had PCI. It's the same thing really, only PCI is lower doses...so am not sure how side effects might compare.

FWIW, I had few side effects with my PCI...just a bit of faltering memory...but then I'm old too! Comes with my age. :D

Posted

Hi, Jen! I am two days ahead of you! I started WBR on Monday. The first day is a pain. Much medical history, a movie to watch and they must set the radiation machine to hit the spots they want to hit. Mine hold my head in place with a piece of tape and have a shield for my eyes, on the arm of the machine.

My Radiation Doc. Put me on Decadron, 2mgs. twice a day, because I told him the the stuff makes me "nuttsy." He also gave me a Rx for Ambien, so I can sleep. I will have radiation 5 days a week for three weeks. So far, no problems! I am tired from worry! Otherwise OK! Call me! Love, Marge

PS. We will go forward together! Never give up!

Posted

Jen my wife completed 3 week's of WBR at 5 day's a week and 200 rads each time. It only took like 10 minutes each session and the only thing she did not like was the mask. The radiation for her was painless and no burn's. They also kept her on steroid's which she hated as they in her own word's made her wheepy. The after effect's of it are just now hitting and for her it was loss of hair again,tiredness and weakness and headaches and nausea. Now she completed her radiation in March and the first couple of week's out she felt great and then the afore mentioned syptom's.. This week she has started feeling good again but does have trouble walking any distance, but her appetite is coming back and the nausea is not near as bad.

Hang in there kid and you'll do fine i feel....

Larry

Posted

Addie is correct -- I had PCI not WBR. Fewer treatments, lower dose radiation, etc. Don't know, but suspect the side effects would increase with the dosage and duration of treatments. I didn't have many side effects -- got a mohawk hairdo when my hair fell out, was a little tired for a while, but that was about it.

I will say that if it ever comes to a point where I have to have more head radiation, I will be going the route of having my head taped to the table instead of the mask. I "endured" the mask as best I could with the PCI, but won't do that again. If they won't treat me because of it, so be it.

I'm not the "average" patient -- in the brace they rest your head/neck in while you're lying on the table and with a strap across the forehead, I know not to wiggle around. Another possibility is that they cut the nose and mouth out on the mask and I'll do that, but not the whole mask. Not again. Nope.

Di

Posted

Jen,

So sorry that you are going thru all this; my husband endured the whole brain radiation in October 2004 and the actual radiation treatments had no ill effect on him. As everyone else has said, he was in and out in under 10 minutes every day (except the first) and had no burn or pain. Like clockwork, however, the day after his last treatment...he hit the bed and stayed there for about 10 - 14 days. He had no appetite, ZERO energy and did loose most all of his hair. Those two weeks following were the worst days for him...and it makes you think that you will never feel good again, but gradually he began to get back on track. I hope your treatments go smooth and you begin to feel better soon.

Love,

Posted

Raising hand - today was my 3rd WBR. I have a total of 15 so it will be good to get week one marked off the calendar. I don't feel any differently now altho tired because I still haven't totally recovered from the chemo I was on just prior to starting this.

I hope I don't get hit really hard at the end of the WBR as some of you did.

Let's those of us who are currently having this lovely treatment post right here if we have anything unusual or just share our experiences. I don't like the mask but I had prepared myself for it as best I could and my onc gave me Antivan - maybe that's helping keep me calm. The decadron is making me grow extra chins so I think that mask is gonna be pretty darn tight by the 15th day.

I just pray it's doing it's thing!

Posted

Hi Jen.

Just want to wish you the best with your radiation.

And as far as Addie's claim to losing it from the radiation or old age...I will have to say neither. I am sure it was the salted margaritas that she has been whooping it up with.

Well anyway. Good luck to you. And then when you're done, try out the margaritas too..and then blame everything on the age and the radiation!

love, Cindi o'h

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