Please help me get through this

cyalata · 05-09-2011, 12:48 PM

Pulled a muscle in my leg over a week ago, went for MRI 2 days ago & my onc called me today at work & said I have a tumor on the back of my neck pressing on my spinal cord! I am so depressed & scared. She wants me to stop my tykerb/xeloda & start on strong steroids & go to the radiologist tomorrow. Has anyone ever had anything like this? The tykerb/xeloda worked for the first 2 months I was on it, it made the lesions in my right lung disappear & my trachea & sternum node & just left a little in the lower left lobe. She thought I would be NED by my next scan! But now she says it isn't working because of a new tumor on the back of my neck! I really need some encouragement. She said there are alot more treatment options for me but we have to address this tumor first - she's very concerned.
My history is:
lumpectomy in 11/08 4/12 nodes+, PR/ER+ HER2+, 10/10 mets to lungs, trachea, bones, PR/ER now - & HER 2+++. Started tykerb/xeloda 12/10.

Lien · 05-09-2011, 02:06 PM

That is scary and I don't blame you for being depressed. New mets are always reason for worry. I'm glad to hear that you still have quite a few options and that tykerb/xeloda worked well on the other mets. This may mean that you could go back to that combo.

Is your onc sure the tumor is malignant? Could it be a b9 growth?

Sending you big hugs and calming vibes

Love

Jacqueline

Jackie07 · 05-09-2011, 02:35 PM

Gail,

I'm sorry for the new development. The new finding explained all the problems you've been experiencing. Rest be assured that the radiation oncologist will have a good plan to get the growth under control. There are so many new machines and treatment methods available nowadays.

Take several deep breaths whenever you feel panic hits. There are websites you can read about new technology in the radiation therapy/radiosurgery field. [For example: http://www.radiologyinfo.org/en/info...g=stereotactic You can do a web search and find more.]

I'm sending you good vibes.

BonnieR · 05-09-2011, 10:11 PM

Of course you are scared. I dont have any medical recommendations for you but your post asks "please help me get through this" and that is something we can all try to do for you. We will be here to answer your questions if we can. And we will always be a collective shoulder to cry on and friends to offer support and empathy. We understand. And will go through it with you.
Keep the faith.

Pam P · 05-10-2011, 02:26 PM

I can "hear" the anxiety in your words. This is scary news to get for sure. As Jackie said there are many radiation technologies that are very effective. I don't have any expertise in these methods, but your radiologist will make the best choices --- and you can always seek 2nd opinion. Take one step at a time and try to find a place of calm as you sort through this news. Keep us posted on your treatment. Pam

cyalata · 05-10-2011, 02:32 PM

Thank you all for your support. I went to the radiologist today & she said the report was so much worse than the scan acutally is. Her & her partner looked at the scan & said it's not that bad, not an emergency like the report showed. She said my onc didn't look at the scan just read the report which they said was over-exagerated. But, I am starting radiation tomorrow for 10 days to shrink the tumors. I don't know if I mentioned the one in my lumbar. They are going to kill 2 birds with one stone & that will be for 10 days & then the new plan of attack will start. I'm trying to syke myself up for a new vegan diet but my radiologist wants me to have lots of protein to heal - any suggestions? Gail

tricia keegan · 05-10-2011, 03:36 PM

Im sorry to read your news Gail which must have been so scary, but would hold back on the change of diet for the moment as the rad onc suggests, you can always see a dietician after the rads when this latest "Bump" is taken care of!

BonnieR · 05-10-2011, 11:13 PM

Gail, I have had a few situations like yours where things seem to be something they are not. But can be most scary. That is why I often take the attitude of trying not to be too alarmed until I am SURE there is a reason. Of course you have cause for concern but it sounds as though it is managable.
As far as "lots of protein", enjoy it while you can! They encouraged me to eat protein dense foods and even have milkshakes! I also ate cheese, yogurts, drank Ensure supplement.
Keep the faith.

krisvell · 05-11-2011, 10:04 AM

Gail,
Please know that I am praying for you that your new treatment plan will kill the mets in your spine. I too have a scary dx -- brain met. The Gamma Knife has shrunk the tumor to 25% of it's orginal size. I am trying to stay hopeful. Radiation does work. Just look at the many signatures. That helps me out from being too anxious. Also, you shouldn't have to suffer mentally. I started taking Adavan and it helped me out a lot.
Hugs and Love,
Kris...

cyalata · 05-11-2011, 10:12 AM

Thanks Kris - I do have Ativan from when I found out about my mets but haven't taken it since this new finding. I will take it though - it did help me relax. I'm going for my first radiation treatment in about an hour - can't wait to get started to zap these tumors! I was on a year of Herceptin with my original BC diagnosis in 10/2008 - I wonder if I'm eligible to go back on it again. I noticed alot of women on here are on Herceptin & Tykerb. I'll see what my onc has planned. Getting nervous not being on any chemo for the next 10 days or so. Good luck with your tx - it seems like brain mets are taken care really well from what I've read on here. I have a question, how do I post a profile picture & how do I add my tx status to my posts? I can't figure it out! Thanks again, Gail

krisvell · 05-11-2011, 03:25 PM

Gail;
Wow! you are wasting no time with the radiation. You'll zap those nasty guys in no time.
To put a signature and post your picture is a little hard to find. Here's the navigation
Top of Web Site == Menu Bar that is Colored Red > Click User CP
Select: Edit Signature (This is where you can type your what I call Cancer resume)

Select: Avatar -- You can upload a picture that will display when you post and reply

Hope this helps. I had to hunt around for this when I first joined.

Hang in there Gail. As KDR's dad says --- "You're gonna be good."

Hugs, Prayers and Love,

Kris....

chrisy · 05-11-2011, 06:06 PM

Hi Gail,

Sorry to hear about this bump in the road - I know it probably seems more like a mountain!

Re your concern "trying to psych up for a vegan diet" vs. the "radiologist wants me to have a lot of protein" I would say unless there is a compelling reason, you may want to consider deferring your commitment to a vegan diet as that will make it more challenging to get enough protein. There are many ways to boost protein intake (BonnieR had some great suggestions - and I also like to spike a smoothie with whey protein isolate) but the most protein dense food options tend to be animal based. You could use soy protein but there is much controversy about if soy is advisable for breast cancer patients.

You are in battle mode right now - and want to give it full strength...maybe take baby steps towards the vegan thing for now.

Hang in there

Elizabethtx · 05-11-2011, 08:56 PM

Praying that all goes well with your radiation. You may be scared but you sound well informed and assured of your treatment! Stay strong. Sending hugs your way!
Elizabeth