FOB not well. Needs ideas.

[michka]

FOB posted in her already open thread but it seems it got lost so I am pasting her post hereunder.

ANY IDEAS FOR OUR FOB? FOB, I hope you are out of the hospital, patting your dog.. Hugs. Hugs. Hugs. Michka



Re: Not good news..
thanks friends

Well i am writing to you from the hospital after I nearly suffocated after my first dose of navelbine +h. I was put on high O2. I have stopped oxigen now but I am very breathless when I have to move. cant walk much.

I have been suffering from spike in temperature for 6 weeks which makes my quality of life very poor.

I was not accepted on the trial around where i live and they took 5 weeks to look at my case and wasted my time.

Scan show progession to new places: neck and liver in 8 weeks.

I am a mess after navelbine chemo, my lung hurts and cant manage to get any sleep at the hospital 4 days. I have decided to go home tomorrow whatever.

I have won many many battles, endured many treatments. No one can say that I have not turned every stones and fighted every corners kicking and scratching. But I am now showing the white flag.

For the first time I am happy that I don't have a family, because thinking of not seeing my dog in the future is soooo painful already. do you know when I cough she comes and lick my neck she is amazing and so sweet. I have found her a lovely god mother who has a dog already and the dogs play so well together so I know she will be happy.

I know that I will not be accept in any trials in my state and chemo sent me to hospital. And cant travel any more for a trial anyway. If you have any idea let me know

not good news indeed

All love
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama

[Ellie F]

Thanks for posting this, I had missed it but was worried I'd not heard from FOB. I wish I had some better suggestions to make but am sending love and hope for a miracle.

Ellie

['lizbeth]

FOB,

Sending you love and prayers.

I don't have any great suggestions. I remember reading one lady's story where she just starting drinking tons of vegetable juice at the 11th hour and was determined for a miracle. She felt she was pretty much on her death bed when she started. It might have been in the Gerson book.

I pray that you are comfortable and peaceful, and are sharing lots of love with your precious pooch.

[Nancy L]

FOB

Can they do a tumor sensitivity test on your last biopsied tumor to see if there is any chemo or combination of chemos your tumor is sensitive to. You haven't had a lot of the combos they serve up these days so it is just a thought. I hate the "we'll try this and see it works" approach.

Gene mapping is intriguing to me. My retired doc friends feel it is the future for oncology and is close to being affordable--certainly not cheap but you would not have to morgage your house. The only way this makes sense is to be connected to a major research university/hospital that is working in this area and knows how to use the data. Maybe the researchers at UW that you worked with during the vaccine trial could provide insight.

I know the fear of not being able to breath. My BC metatasized to my neck and supraclavical nodes, paralyzed both of my vocal cords and attacked other central nervous system nerves that control swallowing, etc. I have been living with a trach for almost a year. It is a big pain to manage but certainly takes care of the breathing problem.

Take down the white flag for now and put your warrior suit back on. Every time I take out my white flag my husband will say to me "why do you want to give up? You are going to be dead for a long time." I know he is right but some days it just doesn't seem worth the struggle. So I truly do understand what you are going through. If you need someone to talk to, just send me a private message.

Wishing you peace with whatever decision you make.

Nancy

[suzan w]

Dear FOB...you sure do live up to your name because even now, you are still a feisty gal! Sending prayers and love across the ocean XOX Suzan and Bette

[Pamelamary]

Dear FOB,
I can't add any new ideas, but don't wave the white flag yet - whatever is in store, enjoy your time at home with your beloved dog and remember people all round the world are thinking of you.
Best wishes... Pam

['lizbeth]

FOB,

It has been a couple days. Please post and let us know how you are doing.

Are you still in the hospital? Have you come home?

Sending prayers