Mom and WBR Treatment

[Guest NowakowDA]

OK children. I need the stright poop on WBR, and I need it ASAP. Mom is scheduled to start her WBR this Wednesday. She is going to get 15 treatments spread over a period of 3 weeks. I figured I'd get the honest low down here and not a bunch of doctor double talk. So if anyone out there has had or has had a loved one get WBR, let me know what I can expect in the way of side effects.

Mom has two tumors in the rear of her brain. Apparently, one tumor is still growing. Her rad onc wants the WBR. He said, two months from now he dosen't want to find out that he missed some tiny tumor floating around in her head. He wants to do WBR and nuke any tumors that may be too small to show up on the MRI.

So! Start singing! I'm all ears.

Don

[TBone]

Hi,

I posted about my experience with WBR under the NSCLC forum a couple of months ago.You can search my posts and find it.I hope it helps.It had WBR in the title I think.Praying for us all.TBone

[djs1171]

Dear NowakowDA:

I did a post under RAD Treatments. My wife had WBR and it did not work out well for her. That does not mean that it won't work out for your Mom. My wife was doing fine with the Chest treatments and even with the first week and 1/2 WBR. She then started getting extremely tired and started using a wheel chair. In retrospect, by that time, she would have had mets to the spine so its hard to say which put her in the wheel chair. I can tell you that it probably will cause a lot of fatigue; she will loose her hair; and it just seems to take something out of them. I hate to sound so pessimistic but that was OUR experience. The one thing that I have learned is that everyone reacts just a little differently to their treatments. What makes one person sick doesn't do anything to someone else. Hope this helps.

[karen335]

Don,

I just had one brain met removed surgicaly in April 2004. It was also in the back of my head on the left side in the ceribellum (sp?) area. They wanted to do WBR after the surgery, I opted for stereotactic radiation instead. I had it done at City of Hope in Duarte, CA. It is my understanding that if you have 1-4 brain mets, you can have this treatment and that it is very effective and not as harsh as the WBR. It also depends on the size of the tumors. It is an individual situation and everyone responds differently. It is hard to give an opinion, it is an individual decision. Sorry I couldn't help more. Prayers for your mom and you...

God Bless,

Karen

[SJAS]

Steve was first scheduled for WBRT in 12/03, but we opted to pursue Gamma Knife. That was cancelled when his tumors disappeared after chemo and the onc. tried to convince us to do WBRT for possible cells. We refused (the neurosurgeon agreed with us), but I guess the onc. "won" the argument about a month later when Steve was dx'd with 15 lesions and thus began WBRT in 2/04. WBRT was extremely rough and Steve almost couldn't make it through it. The skin on his head was badly burned and his ears so swollen inside and out he had difficulty hearing. Recovery has been very, very slow, but part of that may be the return of cancer in his body. (We had about 3 1/2 weeks where there appeared to be no active tumors!) I won't mislead you - WBRT was much harder on him than either his initial body radiation and chemo. Fatigue was overwhelming and we used every imaginable cream/gel/etc. trying to relieve the burned skin. If your mom has only a few tumors at least talk with a neurosurgeon skilled in Gamma Knife. However, don't be surprised if your onc. still wants to do prophylactic WBRT. We may have made a mistake refusing to do it originally, but seeing what Steve has gone through with WBRT, I still think I would do it only if there is absolutely no other option. On a lighter note - the bad news is you can forget about hair on your head and most of your eyebrows, but you get to keep eyelashes this time!