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hutchibk 04-04-2007 03:59 PM

Brain radiation side effects?
 
The doctor just called to tell me that Monday's MRI of my cervical spine and
head/brain revealed 3 new brain mets. Not what I wanted to hear.

They are all small (2 are 9mm and 1 is so small that it can't be measured.

There is also the one we already knew about at C3 on my neck.

Of the new mets, one is in the right cerebellum, one is in the right
frontal lobe and the tiniest one is in the right parietal lobe.

I will meet with the radiation oncologist in the next couple of days to plan
a full compliment of brain zapping sessions, and my oncologist and I will
talk Monday about changing to a Tykerb cocktail instead of Herceptin/Taxol that I have been on since August....

sighhhhhhhhhhh.... and this after I heard from the genetic counselor today that I tested negative for BRAC 1 and 2, which was good news.

I have never had radiation, and I know that the Rads oncologist will fill me in on what to expect, but many of you ladies have already experienced whole brain radiation so I am reaching out to you for info on potential side effects. Thanks so much for any info you all can provide! I feel so lucky that this amazing website/community/resource exists!!

chrisy 04-04-2007 04:54 PM

Sorry to hear your not so good news. I don't have a targeted radiation such as CyberKnife or Gamma Knife rather than WBR, right? This would have less severe side effects and, since you have small lesions, should be effective in zapping them out of the picture. You will do fine.

Take care
Chris

Mary Anne in TX 04-04-2007 07:42 PM

Oh, yuk! I'm so sorry to hear your news. Glad they are small and you will see your rad onc soon to get your questions answered. I hope they get busy soon and eradicate those places. Best wishes to you. mary anne

hutchibk 04-05-2007 10:06 AM

I will know more when I meet with the rads onc... He should have other options and theories.

My onc sounded like he leaned more towards WBR to be sure we are also zapping the little spots that could be there lurking but cannot be seen on the scans... I have been reading more about WBR, and noticing that it is not showing to have great results as a prophylactic approach.

I plan to pursue all angles and my cousin is a neurosurgeon, so I will probably hit him up for thoughts and info as well.

Esther 04-08-2007 04:44 PM

Early this year I had 2 brain lesions found 2 months apart. One 4mm, and the latest one 1 mm. The rads onc and neuro-surgeon also recommended WBR. However, after I shared the information on Tykerb with them, they decided that they could treat the 1 mm latest lesion with fracationated targeted rads instead.

They said if Tykerb was not newly in the picture, WBR would be their recomendation, but since it was available, the more targeted approach made sense to them.

I had gama knife for the 4 mm lesion March 5, and am having 5 fractionated rads treatments for the 1mm lesion, which will end with my last 3 treatments next week.

I would research WBR carefully. It can have significant side effects, and is not necessarily the answer to brain mets.

I consulted Dr. Pegram, who recomended that I add the Tykerb to Herceptin. My regular onc is recommending that I add Xeloda as well. I will be starting my new treatment regimen next week.

Kim in CA 04-08-2007 05:53 PM

I tend to agree with Esther. I would try to go with something like Gamma Knife, because you could treat those small lesions you have now, and even do it again later if more poped up. Especially with the availability of Tykerb now, you could always save the WBR for later.

I didn't have any side effects from the Gamma Knife and went riding a few days later.
Hope your Rad Onc agrees. Kim in CA

Barbara H. 04-08-2007 07:01 PM

I had one brain met three years ago. I had surgery followed by stereotactic radiation. I have experienced radiation necrosis and have had to have two subsequent surgeries. I refused WBR and am glad I did. I would try Gamma Knife and consider Tykerb.
Best regards,
Barbara H.


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