WBRT ???? info input ??
 

Hi All,
I've been away for a while. My MRI showed bandlike areas on the outside of the cerebellum and ALL Docs felt it didn't look like typical mets. The neurosurgeon said given my history lets do craniotomy to make sure. Well it was breast CA (I understand it's better than my renal going there). I had my craniotomy on 7-30, got to my room at 7:30 PM, and was discharged to home 7-1 in the afternoon so that part went well. Weaning off the dex not so much (I feel for you Denise and anyone else who had/has to go through that) and I wasn't on all that much.
We have talked follow up radiation and WBRT seems to be the choice of Docs so far. I see my rad onc on Tue 7-13 to discuss it.
I have read about all the long standing permanent issues and future problems accociated with it and it is very scary. Obviously I want the best chance at no recurrence but not at the expense of who I am and what I can physically do. It's kind of vain but my hair just started growing back after 1 1/2 years and it's been so nice, I hate the thought of permanent hair loss.
I know there must be sisters who have had or know of experience with this and would love some input and maybe a little hope.
Hugs to all,
Cathy

Re: WBRT ???? info input ??
 

Dear cat,I am sorry to hear about your brain mets! I don't have any input on war but our gurus will kindly share their experience. Few people have tried injecting herceptin in the brain- Paul is an expert on this! There are only few locations that offers it - maybe worth checking out. Hugs to you!

Re: WBRT ???? info input ??
 

It is very scary. I had whole brain radiation this January. The treatment itself was not painful and actually did not bother me much. The side effects from the high dose steroids...I noticed very much and they are hard to wean off. I gained a LOT of weight. Im back down to my normal size now. My hair did fall out, and I was shiny bald...it has grown back now for the most part. I have one thin patch right at the middle of my forehead. I do notice some deficits...I don't exactly feel "normal" per se...I search for words, my short term memory is kind of shot. Im tired and weak a lot of the time. I don't feel like it has affected who I am, and in my case with five tumors and now no tumors, I feel like it was worth it. But each person is different, and hopefully others will come along and share their experience as well.

Re: WBRT ???? info input ??
 

Thank you Yanyan for your support and KSgal for your insight. I am glad you have beaten the tumors and are able to deal with the side effects.
I saw my rad onc on Tue with my husband and we decided since I had 2 areas at this time we would cyberknife the areas and keep a close eye on things with MRIs every 3 months. It would be nice to have a decreased chance of recurrance but at this time fits better with my life. I had a routine physical/Pap and I cannot believe it but they found adenocarcinoma cells in the Pap! I think my husband believes it to be more breast CA and I don't have the heart yet to tell him it may be endometrial, at least until I get a biopsy from the gyn/onc. I am hoping it is some sort of fluke. I just can't believe what God is throwing at me lately. I feel like I'm sitting in one of those dunk tanks and he keeps throwing balls, hitting the mark and I keep getting dunked over and over. I still feel strong and have not quit in any way but my shoulders are starting to feel weak and it is getting harder to hold them up under all that is happening.
Thanks for letting me vent.
It is helpful to read the good news people write in about so keep it up everybody.
Hugs, Cathy

Re: WBRT ???? info input ??
 

Cathy,
I love your dunk tank analogy... well said.
It does just seem to be one dunk right after another sometimes!
Unfortunately, being God, he has excellent aim...never misses.
I guess we should count ourselves lucky that so far the tank is only filled with water, and not too deep! :)

If it's true that "what doesn't kill you, makes you stronger"... you...me...and a few of our HER2 friends could take over the world if we wanted to!

Best of luck with your cyberknife! If it matters at all... I think you've made a wise choice.
Sending love and prayers your way!
Denise

Re: WBRT ???? info input ??
 

Denise, Thank you for putting into perspective that at least it's only water and not too deep. I guess going to a pity party once in awhile is neccesary to realize things could be so much worse. There are so many people dealing with issues medical or otherwise, that it made me think how gratefull I am for the rest of my life and the blessings I do have.
And yes, I do feel I am stronger than I ever have been, not always physically, but definately mentally.
So, moving forward, one thing at a time, one day at a time.
Thank you, Cathy

Re: WBRT ???? info input ??
 

Cat,
There is a rumor of a new clinical trial using Intrathecal Pertuzumab at relatively high dose. This is based on work with my wife, Nina, who had the same issue in the brain as you did. I can tell you that the IT Herceptin with Topotecan has kept her brain and spine issues under control for almost two years. She initially had a large tumor on the brain surface that was removed by surgery, followed with Cyber knife, then lapatinib and Xeloda. She had additional Cyber knife treatments, but it progressed into the spinal area. At that point, we took charge and started IT Herceptin and Toptecan through MD Anderson. The results have been very good. The MRI scans this weekend on the brain and spine show no evidence of disease, which agrees with the spinal fluid analysis. Keep the faith as wee are trying to get women like you into a large clinical study.
Paul