Today will be my husbands 6 WBR treatment. So far he has not had any side effects except fatigue which he had before after 1st treatments of Chemo and Radiation to the Lung, Chest area. His MRI last week showed 12 small mets to his brain which did not show up in February 09 when he was first diagnosed and had 1st Brain Scan. His Radiation Dr. warned him about fatigue, headaches, dizziness but we felt like there was no choice since 12 mets to his Brain. Now with all the discussions about WBR, Gamma Knife & Cyber Knife I have concerns. My husband is only 59 and in good health until this awful disease struck him.
Please someone tell us we made the right decision. We like his doctors and so far have really trusted them. Also, the left Lung, mets to lymph nodes on both sides, clavicle, and chest wall lining has almost gone, adrenal gland has increased. Chemo had to be delayed until after 14 WBR treatments. This has been so hard & stressful. Its almost like your in a race for time having to pick & choose which body part do you work on first and keep hoping and praying it doesn't spread anywhere else.
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Discussions about WBR has me really worried
- By canbeatthis
- Posted July 1, 2009 at 11:43 am · 11 replies
- In Treatment options
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Cancer Dizziness Surgery Brain tumors Dexamethasone Decadron Seizures Hypotension Ataxia Aricept Memory Lung cancer
11 replies
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- By debra1
- Posted July 1, 2009 at 1:15 pm
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I can not tell you it was the right decision but I can tell you I had WBR to help prevent my SCLC from moving to the brain. I made the decision without all the knowledge you hear on this site. On a positive note, I had 15 treatments Oct. 07 and am still here NED. From what you posted, I think you just have to be positive that you have made the right decision. Keep us updated.
- By Granny888
- Posted July 1, 2009 at 3:35 pm
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If you read a lot of the research you may find that the long-term effects of WBR are not worth it. Very alzheimers-like and the effects don't start til a couple years ago.
I am glad so far I have not made the choice. Who says if I was in a situation for WBR that I would even HAVE 2 years left? The question becomes -- what if you live? If you have it, and you do, it could be bad -- if you don't, you possibly won't -- just the like chemo it is a very individual choice. Every single case has got to be different
I have enough of a hard time deciding if I should have radiation to the one spot they removed from my brain, especially after loosing my teeth (I lost 4 in the space of a week) which though I wouldn't have lost if I had taken better care I couldn't save them after getting only 4 radiation treatments to what was almost that area by mistake. I will avoid the decision as long as I can, right now I don't even know if I should follow up my surgery with the radiation.
Good luck in your choices. It has to be really hard.
My brain surgeon says yea, my oncologist says nah but it's up to me. I don't want to think about it I think, not now.
You don't really have that choice.
- By Daughter816
- Posted July 1, 2009 at 4:48 pm
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My dad just completed 15 WBR treatments for small cell lung cancer. He had a siezure 5 weeks ago and they found the tumor in his brain.
So far so good! His only side affect is tiredness. He is 64 and in good health otherwise.
I say follow your doctors advice if you trust him. Take it day by day and if WBR is going to kill the cancer in my Dad's brain then I def. think it is the right choice. Worrying about the future is not worth it. Who says something else bad might not happen to you or me or them!!
Live each day to the fullest and trust your instincts!
Good luck!
D
- By StuartFL
- Posted July 1, 2009 at 6:57 pm
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Is your husband on Decadron? I would worry more about the steriod side effects than the WBR for the near future. As beneficial as Decadron is the flip side is horrible.
Pam
- By tazzy1994
- Posted July 1, 2009 at 9:24 pm
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My husband had surgery 11/07 for brain met, gamma knife for "activity" at tumor site and then 17 days of WBR. He was very tired but worked the whole radiation period. His hair fell out , his speech was a little stuttery for a while, and had short term memory loss problems for a time. But he has been NED since then and what problems he had/has certainly outweigh the alternative!
Actually I wish I had his long term memory and he is stronger and better by the day. He does forget a word now and then. But he is still better than me cause I have total CRS!!
P
- By canbeatthis
- Posted July 1, 2009 at 10:23 pm
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Thank you for your replys. My husband is on Decadron. He takes 2 a day. Pam, what side effects did you have from this drug.
- By whynotme
- Posted July 1, 2009 at 10:48 pm
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My husband had 15 whole brain rads for three mets, 3/09, little ones, and the worse side effect that lasted is the terrible way food tastes. The decadron, for him, made him very irritable and puffy and constipated and the fatigue was so overwhelming that he slept alot. But that was weeks ago. He was just feeling better, even food tasted good, had a clean mri (yay!) and now is undergoing chest radiation, which has nasty side effects too. But if the poison works... He still does crossword puzzles, reads and remembers where I left my keys! Bless you all (group hug) Susan
- By stage4survivor
- Posted July 1, 2009 at 11:04 pm
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canbeatthis,
OK, I've been avoiding this discussion while podering the situation, there's no "sugar coating" WBR, if it can be avoided or delayed, it should be.
OTOH, anyone with >10 brain mets doesn't have any realistic alternative.
His age and general health are certainly in his favor so, hopefully any serious collateral damage will be minimal and not appear for many years.
I would definitely inquire about using Aricept and any holistic/alternative treatments to minimize these side effects, too.
G
- By drrust
- Posted July 2, 2009 at 8:34 am
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Late effects from whole brain radiation (WBR) are said to be especially problematic for patients over 60, as my wife is. In the case of my wife, seven months after WBR she began to lose control (ataxia) of her legs, and then her vision started to go. At 18 months after WBR, she totally lost her sight. Brain MRIs show white matter nerve damage (leukoencephalopathy) and non-tumor effects in her optic chiasm. Her doctors indicate that the brain radiation she received is the cause of her debilitated condition, and literature found by searching the web backs up that conclusion.
Happily she remains her sweet self, though she is unable to voice her thoughts much at all.
Whole brain radiation is also considered by her doctors to be the cause of her low blood pressure on standing (orthostatic hypotension). Because of this phenomenon, she fell at night and broke her hip, requiring surgical repair.
Large doses of dexamethasone were prescribed when the WBR late effects were rapidly progressing. It seems to have slowed their progression. When she is entirely off dexa, the effects noticeably start progressing again.
At the time my wife had WBR she had extensive brain metastases, and was beginning to show effects in gait and motor responses. The WBR knocked out all of the then-active mets, but new mets have appeared. So the WBR was effective, and I am sure prolonged my wife's life, but at great cost to her mobility and sight.
I should say that from what I read and have been told, the WBR late effects my wife experiences are not inevitable. However I suspect they are more common than are generally recognized and revealed to patients.
- By dwareham
- Posted July 2, 2009 at 9:34 am
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Don't ever, ever second-guess your treatment choices. You are making the best possible decisions for yourselves based on the information, and that's really all you can do.
My dad did great with WBR -- it eliminated all of his brain tumors. GONE. He was having seizures prior to WBR and was unable to write his name or do simple word association puzzles. He is now back with us about 90% (mentally, that is). He had some fatigue but otherwise sailed through the procedures.
We were also scared off by all the negative stories posted on this forum, and we had a really difficult time deciding to go forward with WBR because of it. While I'm thankful for those warnings, I'm also convinced WBR was the right thing to do for us and it turned out better than we could have expected.
It's good to be skeptical and better to be informed, but remember that most doctors really are trying to help you beat this. It's easy for all of us to gripe about their methods and motives (believe me, I'm one of them!) but at a certain point, you and your husband need to turn down all the noise, make the best decision for you and never look back.
Good luck to you; I wish you the best.
- By lbp08
- Posted July 3, 2009 at 8:46 pm
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You cannot undo what has been done. I argued and tried to present as good a case as I could AGAINST my mom having WBR. She had one spot on her brain that was 5.3 mm. Her onc. and the radiation onc. convienced her that WBR was the only way to start on her tx. Even before chemo!! I took my information and tried to make a case to the radiation dr. against it - with no success and since they are the doctors - my mother went with what they told her. She is 69 and had been in overall good health until all of the treatment has started. Her memory and concentration were better than mine. Now, she has such limited short term memory, she has trouble "finding words", she is having one fall after the next because of her blood pressure dropping when she stands, she has balance problems, her hearing has been affected, the list goes on. My father-in-law has so many of the same complaints - his doctors also talked him into WBR. I asked several times about a different approach and was given the "lecture" - where actually the doctor talks down to the one questioning their judgement - afterall - who has the bigger student loan here? Mother's radiation was 10 rounds and was over in early February - we are already having problems. On the last day of her tx. when she "graduated" from their "program" and got her freaking t-shirt and do-rag - the rad.onc. said, now I understand you still have some concerns? - I was so angry that I wanted to slap him - all I could do was look him in the eye and say - "for better or worse, you have done what you have done - and there is no way to ever "un-do" it - my concerns should have been addressed 2 weeks ago, don't speak to me again". But, there again, my mom only had 1 spot that they could not prove was a met - I am still angry.
It has been great for some - a nightmare for others. Only time will tell - I hope your outcome will be completely different.
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