Feb 5, 2013 05:10PM bottkota wrote:

Oh Debbie....those emotions are normal. Just take it one day at a time and sometimes moment by moment. I still have days like that and I am 3 years in. Vent all you want it will truly help in everything!!! And we will be here for you every step of the way!!

Cathi

Feb 5, 2013 07:54PM debbiej wrote:

Thanks, I need to hear that.  Please keep posting on here to keep me up to date on how you all are doing I need to know you are there and doing okay and that we all have hope of a more time with our family's.  I know I need to focuse more on that and less on the demon inside me.  I also know I need to let out a lot more of my emotions that are held inside.  I am so used to being the protecter and now I need help, that's hard!  Huge hugs to you all, Debbie

Feb 6, 2013 12:04AM - edited Feb 6, 2013 12:14AM by Elisha82

posted yesterday about getting ready for chemo #9. I didn't actually get the chemo, just got the not FDA approved steroid that is supposedly not safe for IT use, solu-cortef. As the med was going in my ommaya reservoir, I could feel myself getting hot, flushed, nauseous. I vomited and dry heaved for almost an hour. I dont know what all meds they gave me for all that to go away. (reason for steroid needing to be given w chemo. Last few methotrexate doses have given me a case of chemical meningitis, so Dr figured steroid would help w inflammation)

Dr made me stay at hospital again last night just to keep an eye in me. Today, got premeds, phenerghan and toradol. Doc pushed med and the solu-cortef in reservoir over 10 minutes, very slow. No reaction til she finished, but then exact same reaction! I thought I was going to die. My heart was pounding, sweat dripping off my bald head, shaking, dry heaving for 30 min. It was awful. Gave me ativan and another dose if phenerghan. Slept for while.

Tomorrow getting lumbar puncture to see if fluid pressure in spinal cord causing compression and the intense pain in my pelvic hip areas, both sides and lower back and neck.

Anyone here familiar with leptomeningeal carcinomas (also called carcinomas meningitis) Breast cancer cells floating around in spinal fluid and thin layer of meninges under skull. Right now I'm having chemo inserted directly into am ommaya reservoir, inserted into top of my head, takes chemo directly into CSF. I've had reactions last week to the Methotrexate alone, so now trying to put steroid w it to keep inflammation down.

I feel really alone. I've not found anyone remotely similiar in dx. The LM cancer has 4-6 month survival w treatment. Of course were praying so hard for a miracle!! Anyone familiar with anything in my story.

(if you want more info about my story, my sister is writing a caring bridge. Message for my last name. Also have blog, address below)

I haven't posted here a lot before...hope someone can identify with me. this is my 3rd hospitalization since Dec 28. First time 16 days, then 4 days,now working on night #2.

dx Nov 2011 IDC stage 3- all clear after surf,chemo,rads.

dx in Dec 2012 w7 plus brain Mets, also  leptomeningeal carcinomas both stage 4 and LM especially poor prognosis- praying against and trusting the Lord.

Feb 6, 2013 04:36AM Angela-R wrote:

Hi Elisha

My current dx is nothing like yours but I wanted you to know how angry and sorry I am that you are going through this nightmare. Of course we all say on here that 'you are not alone' and we mean it, but in truth there are many times when it is only us going through the experience. No matter how similar we like to think our situations might be, no one will ever know how you or i am personally experiencing this s#%t of a disease.

I can only offer you my online words and heartfelt positive thoughts.

If you feel it helps at all to vent on here, please do so. We won't be able to change your situation, but we can listen, and maybe it will give you some extra strength to deal with what you are facing.

With much love and best wishes

Angela

Feb 6, 2013 03:46PM LuvRVing wrote:

Just got back from carbo #6 - it's not working one bit...my tumor markers have gone from about 600 to over 1000 in a month.  Next choice - gemzar and abraxane.  I have not yet found anything that can slow down this beast, I would like some chemo sensitivity testing.  Has anyone been able to get that done?  And did it give you any ideas as to what might be the next chemo to try?

Now I am putting all of this out of my mind - we are leaving for Kauai tomorrow morning at 6 a.m. and will be gone for 11 days.  Hoping for a "no cancer zone" for the duration of the trip!

Aloha everyone!!!