Doc says time to stop all treatment

[Sherry in WV]

I received herceptin yesterday. Was not day for MD visit, however he saw me walking down hall, with a cane, (new Addition) and stumbling to the left, also new. My eyes were very yellow, looked as if someone colored them with a highlighter pen, and skin had slight yellow cast. I am loosing about 1/2lb a day, no matter if I eat or not. He was alarmed at the changes in my in 3 weeks, I am also getting vein distention on breasts and stomach and abdomen, sign of portal HTN. He knows that I am about to see about compassion use of Tynib on Aut 1st, however, he believes that any treatment at all will end my life faster than no treatment at this time. I am not afraid to die, but I am not ready yet, My new Grandson is only 4 mos old and my Grand daughter (14) who lives with us begged me to stay around at least for her first home coming, she starts High School this year. I have fought a long fight, like all of you, had all chemos available, herceptin, chemo emblolization and nephrostomy tube place, which I HATE. I am not one to give up easily, however, yesterday upsetme, depressed me and for the first time in a long time, I cried myself to sleep. My Onc is good doctor and a good man, he kissed me on the check, hugged me and wiped a tear from him eye.
Now I am confused, I can feel my body failing daily, I am tired alot, but we went shopping for a little while yesterday, took a trip to Tn a week ago and I would like to go out to Ill to see my Daughters home, she just got marred this past Dec.
I have never given up, but it is getting harder and harder to stay focused on the positive. I have to be very careful what I take for pain, anything with acetemetifin turns me yellow.
He gave me a script for Fentynl patch yesterday, I gues I wll try it, but I don't want something that will make me sleep the rest of my life away.
I WILL NOT GO QUIETLY INTO THE NIGHT!!!!!!!!!!!

Dx Stage IV breast CA with mets to liver Sept 11, 2002
Thank all of you for listening, your support, emails, advice and love for all of us has kept me going and means a lot to me.,
love and peace
Sherry Poarch
Wellsburg, WV
But Oz gave nothing to the tin man, that he didn't, didn't already have.

[CLTann]

Dear Sherry,

Although I don't know you well, yet I read many of your writings and have always felt that I know you. Your last message cried out for replies from your fellow BC sufferers. It was a message, so real and so frustrating. It is a difficult task to write a compassionate message, knowing the deteriorating conditions you are experiencing everyday.

The important point here is the quality of life. I would think that you would rather be free of the burdensome injections and tubes. Everyday we should all count as blessings to have your loved ones around you. Enjoy to see them as often as you can. Ask Him to be your guide. Peace and tranquility.

My sincere best wishes.

Ann

[Patty H]

I know that this is a scary thought at the back of all our minds. It has been 6 years since my dx. I am progressing again right now. I am still feeling good but my family doesn't let me talk about the fact that I know there is no cure and I don't know how much longer or if treatments will help. There are little things that I notice, like I get tired easier and run out of breath quicker. It's got to be really hard to have your doctor tell you that treatments will no longer help. What ever it takes you need to work on quality of life and maybe you will even show them that you are not ready. I have to amitt that almost all the discomfort I have had from this cancer has been from treatments not the cancer. You really touch my heart. Patty H

[heblaj01]

Sherry,
It is very important you stop loosing weight.
Ask your onc if you can take Omega 3 fish oil pills or L-glutamine which have been shown to be effective in many cases against weight loss.

Acemitophen (Tylenol or Atasol) in high doses is toxic to the liver & may be a cause of your yellow skin colour. NAcetyl L-Cysteine (NAC) pills can be taken with Acemitophen to prevent liver damage (check with your onc but NAC pills can be procured without prescription).

Once you are stabilized you should be able to benefit from Tykerb.
Good luck.

[R.B.]

I think I have read that fish oil based lipid infusions help stem weight loss in cancer.

Fish oil based infusion are also being tried with low dose cox inhibitors as a treatment in varous cancer types see Geek diet post link below.

The article on the lung cancer patient is also thought provoking.

Dietary change should be discussed with you medical advisors. If the lipid infusion was of any interest you could always print out the trials and take them along.

I hope things improve.

You are being very brave about it all.

RB





http://www.her2support.org/vbulletin...ught+provoking



http://www.her2support.org/vbulletin...ght=greek+diet

[Barbara H.]

Hi Sherry,
Your post brought tears to my eyes. While you are such a fighter, I am also amazed at your courage to deal with your current situation. Nevertheless, there are a few members here that have been in the same situation with liver mets, and may have some ideas. If you haven't posted all the chemos and procedures you have had, it might help let those members know who may have some ideas. I know that Al went to the ends of the earth to find treatment for Linda, which gave her more extended time. I am also stage 4, and know that I will be in your place sometime down the road. I admire you.
Best wishes,
Barbara H.

[Becky]

Dear Sherry

Since you need a pain killer, ask your doctor to prescribe Celibrex. It is a Cox 2 inhibitor pain killer. It can show some promise. It will NOT hurt and may help while you wait for Tykerb. Do it now, today.

What about Avastin? Can you also use that with Herceptin while you are waiting. Just thinking out loud here. Ask if you can slowly up the Omega 3 fish oil - don't know what you are taking to even make a suggestion. You can up CoQ10 to over 390mg per day. Shows anti cancer effects. Ask - you will need to up this over a 2 week period if given the ok.

Call about Celibrex today. It's worth a really good shot during the wait.

Love, Becky

I am hearing that you are not ready to "give up." Did your doc hear that? When you are ready counts for alot. That is one way people outlive their prognosis with will and spirit.

One possibility that you may consider is that it was hard for YOUR DOC to see you suffering. And that his words, as kind as they were, were also to help HIM. Just a thought.

Please keep posting and let me know how you are doing with this.

Peace and love.

Dilly
(i'm having login problems)

[Kaye]

Sherry, sorry to hear about what is going on. I want to say I don't know you. I don't know what treatments you have had or have not yet tried--but I do know others who have been where you are and have hung on. I don't know if that will be your fate either--but, at the least, I can share what was going on that may have enabled them to improve.

One gal I know was given similar feedback by her onc. She switched treatment facilities and 6 mos. later improved enough to go backpacking with her son in Europe. She changed dr's 2.5 yrs. ago.

I had a colleague who had a failed stem cell transplant. He was given a prognosis of 2 weeks to 2 mos. He came back to work and basically slept there. He didn't want to sit around at home waiting to die. He was allowed to continue with the medication he was on, Rituxin, despite progression. That was 4 years ago. He is still here.

There is a gal who was also given a 2 week prognosis--she was also quite yellow. She was given Navelbine and Herceptin first, I believe but if I recall correctly that either didn't help or helped for awhile. She then switched to Xeloda and Herceptin (although may have still had the Navelbine). Irregardless she improved enough to return to one of her favorite sports--skiing and the bc turned around. That was 3 years ago. It did return to her bones but she is still quite active.

I don't know if this will help or if you could even tolerate but there are alternatives that some have found helpful. These include the antibiotic Doxycycline (50 mg/twice/day or 100 mg/once?) and the non-steroid anti-inflammatory drug, Celebrex (400 mg/twice day=800 mg/day--which, supposedly when taken together have anti-cancer property. In addition, Lovastatin, the cholesterol medication may have anti-cancer properties.
Another possible way to target cancer cells is through pro-biotics--with kefir (liquid yogurt) which can either be homemade or bought at health foods store such as Whole Foods.

I don't know if any of the above is at all of interest or would even be helpful but wanted to share with possibility of such in mind. Take care, sending positive thoughts and prayers...peace and {{{hugs}}}

[Tom]

Sherry,

Here are two links that describe the actions of whey protein isolate, and it's effects on cancer and cancer-related weight loss. You can buy whey protein isolate powders at most health food stores such as The Vitamin Shoppe, and even at Trader Joe's markets if there is one near you. There is one brand that is called Designer Whey, that is very good. Whatever brand you buy, make sure that the whey is NOT denatured. It will tell you right on the can. Use the whey along with a good Omega-3 fish oil supplement as R.B. recommends. We expect to hear from you soon. Let's get this train rolling !

http://www.drugs.com/pdr/WHEY_PROTEIN_ISOLATE.html


http://www.lef.org/protocols/prtcls-txt/t-prtcl-029.html

[Mary Anne in TX]

just hearing all the love being sent your way! You must have given so much to receive so much love.
I know that when I feel tired, defeated, and unsure I make goofy decisions. Sometimes just resting and waiting til peace comes helps me make wiser decisions for me. God bless you!

[MJo]

I wish you all the very best. The fact that you've travelled to Tennessee and are planning a trip to Illinois sure sounds like you have a lot of kicking left in you. As for the Tykerb, it seems to me it's your body, your choice. Whatever you decide you have a whole board full of people pulling for you. MJo
PS Where are you in WVa. My mom grew up near Beckley.

[mamacze]

Dear Sherry,
You are an incredible angel, to have heard a virtual death sentence from your well meaning oncologist who wanted to give you relief and instead handed you a boat load of worry. And after being up all night rightfully thinking of your goals and the loves of your life (daughters, grand daughter and cherub of a grandson), you had the overflowing kindness to get on the boards and share your most intimate pain with us. Do you remember your loudest statement to us at the end of that long night? I WILL NOT GO QUIETLY IN TO THE NIGHT!!! It sounds like that still small voice inside of you is no longer still and small...it is SHOUTING! It sounds like it is a loud "2x4 over the head" spriitual message that wants to be heard!
I believe in divine intervention, Sherry and the mere fact that you are discerning a huge worry, and connecting with the ones you love is telling of the strength that you still have inside of you. You will not go quietly into the night; nor should you. Listen to your still small... and the loud voices, hear your smart, compassionate b.c. sisters who stand by you, and feel us reach out to help you fight like hell. Stay with us . Know that you are loved and supported. This is a time when you need to rest in the arms of the ones who pray for you; and know that we are praying for you.
Love, Kim from CT

[Rendi69CA]

I don't know you. But , your words are telling me that you are a very strong woman. I know it is hard to be positive. Don't give up! Please! It is hurting me that you and all of us going though this nasty disease. It hurt so bad. I want you here as long as possible to be with your family. I will PRAY for you and your family. I love you!

[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.

[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

[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