Doc says time to stop all treatment

[Tessa]

Dear Sherry,

You are splendidly courageous in the face of what is clearly an incredibly difficult situation. I agree that your oncologist was probably at a low point anyway, and seeing you so frail prompted words which should be interpreted with care. So many people on this Board have offered excellent advice, please take it.

I read yesterday about the humorist Art Buchwald who has advanced diabetes, had one leg amputated, and when his kidneys started to fail refused dialysis and checked himself into a hospice expecting a gradual decline and death. But then, to everyone's total amazement, inexplicably, his kidneys started to function again, and he's home and doing very well. There is no medical explanation.

Art Buchwald is famous and that's why we hear about this, but I know it happens to other people and just never makes the papers. It can definitely happen to you. Meet your body half way, with all the ideas posted above, and you'll be there for your granddaughter's Homecoming.

I doubt if I would be remotely as strong as you, so I send heartfelt admiration with my very bext wishes

[tousled1]

Sherry,

My heart goes out to you. I don't know how I would react hearing the words that you did from your oncologist. You appear to be a very strong willed person so now is the time to prove everyone wrong. Tylkerb is just around the corner for you and hopefully it will help. Keep your fighting spirit. My thoughts and prayers are with you.

[pattyz]

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

[Lolly]

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

[michele u]

Sherry,

Don't think of it as giving up. We are not in control. God will take us all when he is ready. Live every second. Love every moment. Find peace in His word. Let him comfort you. Don't worry about what you can not control. I will pray that He will give you strength through this hard time. Don't let any one or any Dr. tell you when it's your time to go. Know that when the time does come He will be there right by your side, like all of us, every single living soul. You are NOT ALONE

[RhondaH]

I'm behind you in your decision and will continue to offer my thoughts and prayers. Take care and God bless.

Rhonda

[Cathya]

Sherry;

I am wondering about this drug as you have likely gone through all the chemo's and have resistance?....it apparently does not affect normal cells ...

Regulatory News ArticlePhenoxodiol Increases Effectiveness of Docetaxel
Recent laboratory findings have revealed that when used with docetaxel, the anti-cancer drug phenoxodiol elevates docetaxel's ability to kill human ovarian cancer cells.

In November 2004, phenoxodiol received fast-track status from the FDA in relation to a continual multi-center phase Ib/IIa study. This study used tumor measurements from radiographic examinations of women with recurrent ovarian cancer. It shows the development of phenoxodiol as a chemo-sensitizer for standard chemotherapy agents for ovarian cancer, including the taxanes and platinum compounds.

Researchers from the Yale University School of Medicine used cancer cell lines from patients who had failed to responsd to standard anti-cancer drugs. Laboratory results showed these cells as being highly resistant to anti-cancer drugs, such as docetaxel. Not only did phenoxodiol restore docetaxel's activity, but when added to the treatment mix, the synergistic effect was so great that it allotted 1/100 th of the amount of docetaxel to be more powerful toward cells previously unaffected by docetaxel alone.

The FDA has approved the use of docetaxel for:

• Treatment of women with early stage, locally advanced or metastatic breast cancer after failure of prior platinum-based chemotherapy
• Treatment of locally advanced or metastatic breast cancer after anthracyline-based therapy
• First-line therapy for non-small cell lung cancer
• Second-line therapy for non-small cell lung cancer following prior treatment with cisplatin
• Hormone-refractory prostate cancer in combination with prednisone

Phenoxodiol works to regulate signal transduction pathways in cancer cells resulting in the breakdown of the intra-cellular proteins XIAP (X-linked Inhibitor of Apoptosis Protein) and FLIP (Fas Ligand Inhibitory Protein), which block the capability of the cancer cell to undergo apoptosis via the death receptor mechanism.(1) These proteins are preventing unintentional cell death in healthy cells, but they are also over-expressed in many forms of cancer and are associated with the development of resistance to anti-cancer drugs. (2) Phenoxodiol is working selectively on tumor cells because of its interaction with the tumor-specific NADH oxidase, which is restricted to cancer cells.

When used with docetaxel, phenoxodiol enhances the capability and sensitivity of docetaxel in killing human ovarian cancer cells. Previously, these cells had not responded to docetaxel when used alone, but the addition of phenoxodiol has effectively increased the response.

(1) Kamsteeg M et al. Ibid.

(2) Cheng JQ et al., 2002. Drug Resist Update 5, 131.

Here is a website that explains this drug in understandable english.

Cathy

[dawn]

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

[Sheila]

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!

[Bev]

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

[al from Canada]

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

[Mary Anne in TX]

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

[Sherry in WV]

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.

[Rendi69CA]

You are welcome, Sherry.

XOXOXO!

[sarah]

Dear Sherry,
I hope you're either seeing a new doctor or the old one realizes he'd better come up with some better ideas.
Thinking about you. Keep fighting. You are surrounded by loving people.
A very big cyber hug.
sarah

[VaMoonRise]

Sherry,

My heart is breaking after reading your post. I can't imagine what it must be like to hear those awful words from your oncologist but we have to remember, always, that doctors may know more than us but they don't know more than the man upstairs.

I have read many of your posts over the past year and you have been such an inspiration to me. You have always been such a fighter with an amazingly positive attitude, the beauty of your inner spirit always shines through. I wish there was some great medical advice I could offer you but I am still so knew to this journey that I find myself at a loss as to what I can offer. The only things that come to mind are that if you are experiencing a really low appetite that the drug Marinol has proven to help with this, it is a form of marijuana that doesn't give you a buzz but the THC in it helps to increase appetite and also helps to relieve nausea. My mother took this drug during her battle with BC and it really helped to maintain her weight. I also truly hope that you can get started on Tykerb or some other type of treatment that will reverse your prognosis.

I will be praying diligently for you and your family, I am a firm believer in the power of prayer and that prayer can create miracles and you are certainly most deserving of a miracle. I am also a firm believer that there is a reason and a purpose for all things even if we don't always know what that is and that no matter where life may take us it always serves a greater good.

Sending you lots of warm thoughts, well wishes, hugs and prayers.

God Bless & Lots of Love,
Nicola

[Val Pfeiffer]

My thoughts are with you.
I hope you can get on Tykerb soon :-)
Best wishes...please keep posting when you are able.

[R.B.]

"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

Save:
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.
Detail Save:

[koolbreeze]

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

[margaret]

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