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Petunia

Preventative radiation to the brain wbr/pci?

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Just a few questions about wbr/pci. My mother is about to do her 6th cycle of chemo of ext. sclc. (etop/cis) and she has been doing very well with side effects. She has just finished 20 rounds of radiation to her back/bones/tumor and finished her 5th cycle of chemo. Her main tumor has shrink as has most of her other tumors (her adrenal only shrunk a little bit.) She will be getting her 2nd mri of the brain in a week. The dr. recommended wbr/pci. I have done much research on this and know that there are pros and cons. I know the one con is that she may experience early dementia, however, the pro is that it may prolong her time here with everyone. Can anyone give insight of wbr/pci (especially with ext. sclc)? I have heard that they do not worry about side effects with ext. sclc because they say the patients are not usually alive long enough to experience such side effects (years later). Is it worth my mother going through this radiation? She is beginning to cough up stuff at night again (although it is clear with no blood) but this worries me. It has only been 4 months since diagnosis and you would never know she has sclc expect for her hair loss. She has been the same person except for some fatigue. What is there to expect with WBR? Thanks for any honest advice, opinion, and information. Sending good thoughts and well wishes to all.

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Hello Petunia,

I have been following your posts since you joined this site and I realise some of our thoughts are so similar.

As you will see from my signature, my father had not done wbr and his brain met showed up with an epileptic crisis. There are times when I have wondered what would have happened if he had done wbr. The radiation therapy he did after the episode with the crisis was ok. I mean he did not have severe side effects and it has been 1 year and 4 months that he feels good except a small noice he occasionally has in his ears. But he does not judge it as something so important.

I hope the best for your mother and you.

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Hi Petunia,

Sorry to be getting back to you a little late.

I have had two rounds of PCI. One in March of 2009 which I cut short by about 4 days and then again in july and august of 2009.

No immediate side effects but tiredness. a couplle of moths later, I noticed a problem with cognitive functioning, In I would lose my train of thought and also my words. I still have those problems to a much smaller degree. And the biggest problem that I have at this point is that I look like I have male pattern baldness going on but not to the extent of complete baldness, just my hair is much thinner where the radiation was a little stronger because they have to do both sides of the brain and it over laps in the middle. Sometimes I feel like asking my Dr.s if I can use rogaine for women to get it to come in a little thicker .

If she is handling all of her chemo and the other radiation she has had, she should be okay. just make sure they do that after her last round of chemo; my last round of chemo was Oct.08 so my Dr.s waited to see how I would be doing for about 5 months before they referred me to the radiooncologist.

I hope this helps.

Dawn

(Outrider)

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Thank you both very much. Your advice has been helpful. I am guessing then if her last round of chemo is in July then they may not want to start the wbr until December. My mother is worried about permanent hair loss from the radiation but I think that hair loss is better than brain mets. Do you feel like it was worth the side effects to get the pci? I wish you all the best. Good thoughts and vibes sent always.

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Petunia,

She should not have even as much damage To her hair as I did, mainly because I had PCI twice. My hair took a while to come back in and is just now getting long enough to brush, but this last time it was from chemo again (only 2 months worth) in August of last year. If her hair is already gone due to chemo, It should not be too bad. If it has already started to grow back in, just let it fall out naturally with combing.

Dawn

(Outrider)

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