Brain Mets Sisters
Comments
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Jill,
My neuro oncologist also refuses to do IT Herceptin even though I ask every time. It is nt mainstream enough yet I think. But I continue to bug them. Good luck with your MRI on Friday.
Karen,
Sorry this taking forever. Hope the date goes by without a hitch. Wish you luck and a speedy recovery.
Nancy,
I hope your headaches are getting better. Mine just stopped last week after two three weeks of headaches and I was thinking how lucky I was to not have a headache today. We become so grateful for symptom free days. I hope I have not jinxed myself!0 -
FINALLY .... My craniotomy is booked for 8:35 a.m. tomorrow morning after delay and delay. I will keep in touch after my surgery to let you know how I'm doing. My husband is not a computer guy so I'll text as soon as I can. Thanks to all for your well wishes. Thanks goodness I'm not superstitious .... Friday the 13th.
Hugs Karen
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Thougts will be with you tomorrow and through your healing.
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Cheers Karen, I'm out of town and checking in to add my energy. Meeting you for coffee when you're through this "head-ache" and back to the bliss of ordinary, everydays.
All my beach energy heading your way!!!!!!
Sophie0 -
Hello ladies,
Looking for anyone living in the GTA, who wants to meet up for a coffee/tea to chat?
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Thanks girl I had my surgery on September 13th and was ready to go home on the evening of Sept 13. Have a little bit of a problem in the occiput all lobe. My sentences I am reading are missing a couple of letters here and there but it seems to be getting better. The narrow surgeon told me it wo. the nurses and doctors are amazed at how well I'm doinguld get worse within the next couple of days before it gets better but it's actually getting better already. Got lots of energy And no balance issues at all. Ready to go home an feeling great. the doctors and nurses are amazed at how well I am doing. I think I may be going home tomorrow. And it's all because of your healing energy vibes and prayers sent to me
his Karen0 -
sorry for the crappy typing. Not quite there yet.
Love, Karen0 -
Karen,
So great to see this update and read that you are doing well. Hope you continue to improve and go home tomorrow. ((Hugs)).0 -
Thanks formy from time to times throughout the day my vision gets about 50 percent better which is a good sign. I guess it gets better in waves like that.
Hugs, Karen0 -
thank you for the update, so happy you doing well.
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Thanks 1maximums.
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Karen, So so happy all went well. Here's praying that your recovery continues. Are you on steroids?
Marilyn
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What great news Karen! Praying you continue with your healing and are home soon.
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Wonderful news, Karen
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I'm home already. Yay...no pathology yet. But I feel good sleeping in my own bed tonight. Yes I'm on steroids Marilyn. Going for as nap now. What a great thing to have brain surgery on Friday and go home Sunday.
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Glad you are back home!
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You are amazing Karen! Continued prayers for a great recovery
Amy0 -
Huge smile as I read your news Karen. So delighted you are home and doing so excellent!!
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I am so relieved Karen. So happy that you're doing better than anticipated. xo Jill
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Wow, Karen! Amazing!! Glad you are doing well, take it easy.
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So glad it's behind you and you're doing well!!
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Quick update - I am on day 2 of 5 cyberknife zaps. Yesterday was easy as could be, just 15 minutes. I don't know why, but brain radiation freaks me out a little, which is crazy since compared to all the crap we go through, it is truly one of the easiest, painless things. There's just something about being snapped to the table with the mask, then they close that enormous door, then it is just you and the radioactive arm pointing at your head. I try to relax and think about other things, but for some reason, it just really freaks me out.
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Karen- wow. you are a wonder women. I am glad you are home. Take some time to rest.
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Nancyh know what you mean and feel my last cyber was also 5 the bad thing for this one was i was on steroids and my face swelled so they had to cut the nose out of the mask so i could breath, but my 1 month mri came back with no new ones 1st time in along time. i've had a total of 13 zapps over the past year and a half. hope the next 3 go swift.
love and blessings to all
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Thanks, Braids3, hope you are doing well.
Has anyone experienced the weird taste/smell during treatment? I thought I was imagining it yesterday, but it happened again today. I asked then about it and they said it happens when they radiate certain sensory nerves. I feel like the taste has lingered all day, blech!0 -
Chanah, Amy, Sophie Jean, Leftfootforward, dearjilly, Nancy, and Jill -Thanks for your well wishes. What a light show. I feel like I'm in the cartoons with a holographic halo of colourful stars and a disco ball going.
Nancy - keep me up to date so I know what to expect next. I hope it gets better for you. I have had scent and taste problems for 2-1/2 years now. It's like a chemical or acetone taste and smell at the same time, and unfortunately it lasts about 2 weeks. Then disappears for about 4 months then comes back. No idea what causes it. It doesn't seem to matter what kind of treatment I'm on. But that's just my experience. It always goes back to normal. Good luck to you with that taste/scent. It's a pain in the butt.
Hugs Karen
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Thanks, Karen. Eventually, the taste/smell wore off today, but dang it was miserarble and I get to look forward to it again tomorrow, Th, and Fri. Yay. I think I was a little freaked out today because their computer broke down in the middle of my treatment, so there was a delay. I was determined to be brave today, but the breakdown tested my limits. The cyberknife thing was pointed right at my eye and the little trap door kept opening and closing, I was just praying it wasn't spewing out massive doses of unplanned radiation at my head. Oy. Freaky, freaky.
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Nancy - Yeah that does sound freaky. What we have to go through some days is so intimidating. One of my tumours (occipital - the eye) was very deep,not near the surface. I'm hoping that will respond to radiation without destroying visual field. Things are getting so complicated between treatment, Prednisone ans Diabetes.
But you'll get through like you always do. You're my inspiration!!!!!
Hugs, Karen0 -
Just got home from 3 nights in the hospital with Xeloda/BKM120 rash. I think it's the sun sensitivity that really set it off but I've had an awful rash down my arms and around my torso-it follows the lines of my bra and pants so its like the rash flares up wherever the sun shines through my clothes. Anyway, feel like a beached whale pumped with saline and steroids for 3 days. Just thought I'd share my experience. Don't know now if I'll be taken off the trial and what my next step will be but the Xeloda, while seeming to work on my brain mets, caused me feet and skin problems that were too severe. Anyway, on we go to the next thing right?
Gail
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I had my follow up MRI today after going thought SRS in July. Bad news. Two of the treated lesions have grown but they are not sure if it necrosis or tumor growth. So I get to have a PET BRain with spectroscopy next week to determine and WBR if PET is conclusive. He said SRS will not be an option this time. I had stable scans in my liver, lungs and bones on Monday so I am very disappointed with these findings. Stopping chemo for WBR is a scary option with the amt of cancer I have in lungs and liver. Hopefully, the PET will show necrosis. I am so bummed today. I was hoping to have a week of no bad news. These cliff hangers are horrible.
Hope everyone is doing well.0
