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Old 08-06-2006, 09:22 AM   #1
Val Pfeiffer
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My thoughts are with you.
I hope you can get on Tykerb soon :-)
Best wishes...please keep posting when you are able.
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Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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Old 08-06-2006, 01:29 PM   #2
R.B.
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Weight loss fish oil and melatonin combination helps 63% Adv gastro cancer

"After combining interventions, approximately 63% of patients showed such responses. "

I have also posted this under Greek Diet to try and keep the omega three bits in one place but thought you may not check there - just in case of help or interest to you and your advisor.

RB

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Title: Impact of fish oil and melatonin on cachexia in patients with advanced gastrointestinal cancer: a randomized pilot study.
Author: Persson,-C; Glimelius,-B; Ronnelid,-J; Nygren,-P
Citation: Nutrition. 2005 Feb; 21(2): 170-8
Abstract: OBJECTIVE: The effect of fish oil (FO), melatonin (MLT), or their combination and dietary advice on cachexia and biochemistry variables reflecting cachexia were investigated in patients with advanced gastrointestinal cancer. METHODS: Twenty-four patients not amenable to standard anticancer treatment and with documented weight loss and/or decreased serum albumin were included. They were randomized to 30 mL/d of FO, which provided 4.9 g of eicosapentaenoic acid and 3.2 g of docosahexanoic acid, or 18 mg/d of MLT for 4 wk. During the next 4 wk, all patients had FO and MLT. Serum or plasma was analyzed for tumor necrosis factor-alpha, interleukin-1beta, soluble interleukin-2 receptor, interleukin-6, and interleukin-8 and the fatty acids eicosapentaenoic acid, docosahexanoic acid, arachidonic acid, and linoleic acid. RESULTS: Serum levels of eicosapentaenoic acid and docosahexanoic acid increased as expected with FO. No major changes in biochemical variables and cytokines were observed with any intervention. In the FO group, 5 of 13 patients (38%) showed weight stabilization or gain compared with 3 of 11 patients (27%) in the MLT group. After combining interventions, approximately 63% of patients showed such responses. CONCLUSIONS: FO, MLT, or their combination did not induce major biochemical changes indicative of a strong anticachectic effect. Nonetheless, the interventions used may have produced a weight-stabilizing effect.
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Old 08-07-2006, 05:17 AM   #3
koolbreeze
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Your post brought tears to my eyes. May you be surrounded by comfort and love. Keep fighting if that is what your heart is telling you to do.

We are all with you in thought. With love and blessings, Kool
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Old 08-07-2006, 03:34 PM   #4
margaret
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Your strong beautiful spirit shines brightly!

Dear Sherry,
Remember that cancer and illness can never diminish your spirit. Keep shining your brilliant light no matter what. Prayers and blessings being sent your way.
Love,
Margaret
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Old 08-08-2006, 12:32 AM   #5
lu ann
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Dear Sherry, I have been on 100 mcg. fentynyl patch for over a year. The cancer ate away at a vertebre in my spine and caused a compression fracture which was very painful. I started at 25 mcg. and have been at 100 mcg for the last year. I have a good quality of life with this med. It does not make me feel drugged or tired all the time. But, if I don't replace the patch every 72 hours I experience withdrawal. I was on oxycontin prior to this and had more constipation. Love and Blessings, Lu Ann.
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Old 07-30-2006, 05:21 PM   #6
pattyz
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Dearest Sherry,

I don't know what your onc saw in you, but what I hear from you is one strong (inside) kickass lady. If intent and will have any real effect, I have no doubt you will be giving hugs back to your onc for a long long while.

and if you need to change your mind, we'll still be here to listen...

Wishing you good days apon good days,
and hugs, pattyz
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Old 07-30-2006, 07:51 PM   #7
Lolly
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Dear Sherry,

You don't sound like you're ready to go yet, so just say no Just a little humor to give you a smile, but I'm also serious as I believe we do some choice in the matter. As the others have said, you are one tough cookie and I'm pulling for you. I'm sending you hugs.

<3 Lolly
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Old 07-31-2006, 05:57 PM   #8
dawn
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Sherry,
I think you are very brave to be facing what you are. I think with BC, that is really the first thing that pops into our minds, but then hope and science take over and we go on from there. But as you said you are not ready yet and I think attitude makes a difference. But only God and yourself can decide what is to come and not medical science or the doctors. Good lUCK and all the best
DAwn
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Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.


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Old 07-31-2006, 06:43 PM   #9
Sheila
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Sherry

You need to take things in control the way YOU want them...don't ever let anyone else tell you everything that can be done has been done...this is such a science...thats why one of us responds and another doesn't to chemos....Dr.s are people who don't know either...they are giving educated guesses....I wish I had a penny for everytime one of their "educated guesses was wrong!" Working as a nurse with cancer patients for many years, I learned that the best medicine in the world won't help if you give up....attitude is so important, and you have a very courageous and strong one...take control and do what YOU want to do....
You are in my prayers!
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 07-31-2006, 07:38 PM   #10
Bev
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I can't add to what others have already said. Hope the tykerb works and just wanted to let you know, you're in my prayers. BB
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Old 07-31-2006, 09:04 PM   #11
al from Canada
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Dear Sherry,

This sucks so bad but you have to get creative if you want to go on. The one thing I would do is get your advocate to help you fight as once you jaundice, it's very difficult to think clearly. Second, think about the chemos that have knocked-out the liver mets in the past as tons of research has shown that after 6 mos. to 1 year, most drug resistance disappears. chemo plus tykerb or another EGFR inhibitor such as tarceva or irressa + herceptin, could very well do it for you but you have to want it and be willing to fight for it. I recall Ginger Emprey telling me how she had jaundiced, had ascites and was checking out but still fought for her right to live by getting that "new" drug herceptin, off label. that was 10 years ago.........if you get no where with your onc, get on the phone like I did when Linda was given 2 weeks in the exact same situation, and we got another 2 years. A doctor that kisses you good-bye.....I think I would find one that kisses you hello instead, get your advocate to get on the phone and find someone with a creative solution. There are no garantees in this life but every now and then you may get a free lunch, you just have to find it.
Anything I can do,
Al
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Old 08-01-2006, 06:16 AM   #12
Mary Anne in TX
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If this web site doesn't make a fighter out of ya, I don't know what would!

I have gotten so much encouragement from all the messages to Sherry. I'm doing better with the last treatment because I got a "mind fix" from this fabulous group!

Sherry, may the mighty life inside rise up and give you strength to fight once more! So many good thoughts on what to do! God Bless you.

Thanks to all for being my much needed inspiration.
mary anne
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Old 08-01-2006, 06:29 AM   #13
Sherry in WV
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Red face Thank you

You all are so wonderful!!!!!! As I sit here reading ur posts, I have so many tears, good tears, for all the outpouring of LOVE, CARE and advice. My life was blessed so richly when I found this board and was welcomed and embraced here.
I do take fish oil and flaxseed oil. I am starting back on milk thistle. I have taken it in the past.
I go today to see the Doc about Tykerb. believe me I am not giving up, however was in a very "low place" when I posted. Glad I did your thoughts, advice and prayers mean so very much.
I will keep fighting. I do count my blessings. I have a wonderful husband who takes such very good care of me and this "curse" has brought us even closer.
Our wonderful 14 year old Granddaughter is staying with us. She is such a good girl. She sings in the church choir, helped teach vacation bible school. She just came back from Mexico on a mission. She is beutiful, kind and sweet. Our very chubby little 4 month old Grandson.
When my Once told me this, he really did mean it with love and kindness. He is afraid that in my present condition, anything I take will kill me in 24hours,
and I will be gone faster than he would like. We have become friends as well as pt/doc. Yes, I have thought about quality of life vs quantity. When the time comes, I will know. As I said I WILL NOT GO QUIETLY INTO THE NIGHT.
God bless you all and thak you
Sherry in WV.
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Old 08-08-2006, 02:56 AM   #14
PFFr
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Cool http://www.stem-cell-clinic.co.uk/

Hi have a look at this web site http://www.stem-cell-clinic.co.uk/
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