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chrisy 04-05-2013 01:52 PM

update I hate to give (with a little more positive spin)
 
Well sisters, and brothers...

Looks like I'm teetering on the edge of acute liver failure. I'm still fighting and so far on the right side of the grass, but facing some very scary times.

Ironically, the TACE procedure I had done a few weeks ago actually worked, stopping cancer growth in the small area they did. So that was good news.

The not good news is that the "untreated" areas which were massive continued to "flourish" and sprout new little tumors to the degree that the rest of my liver is just crashing big time. Today my total bili was over 10 from 8.1 Tuesday.

Tuesday was a rather startling day when my onc (who was running 2 1/2 hours behind) looked at me and said "this is it. Your liver is disentegrating. We can give you low dose eribulin, which might land you in the hospital and make you feel sick but might help. I asked what was the alternative and the answer was do nothing, hospice.

So it has been a tearful week realizing my timer might be about to ding. Really hard on my hubby and so also on me because I love him so and hate to see him hurting and feeling that his life is over, too. Hard on my sister and niece as well. I don't fear death, and know it will all make sense from the "other side" but it is so painful to be causing pain to those I love most.

So I'm trying the eribulin and rushing to finish some trust issues...what a dope. About the last minute paperwork that is!

I love you all and am so grateful for the lifeline this group has been for me for so many years.

Will continue to check in as able, so you keep behaving yourselves! The fat lady hasn't sung yet.

Much love
Chris

Mtngrl 04-05-2013 02:05 PM

Re: update I hate to give
 
Oh, Chris. Oh, no.

I'm so sorry. So sad. For you. For your family. For us.

But I can't tell you how grateful I am. To have known you. And to know you love all of us enough to take the time to tell us this. You get it. We're all in this together forever. It's a community. It's a family.

I love you.

Amy

Mary Anne in TX 04-05-2013 02:45 PM

Re: update I hate to give
 
Chris, I'm so sad. This just can't be true. I'm sending you lots of love and also thanks for being you and sharing that you with us. Meeting you at the San Antonio Conference was such a gift to me. It made me so committed to being my own advocate and researcher. You are one very special lady. I'm praying for a Big Miracle. Love and peace in bundles, ma

KDR 04-05-2013 02:48 PM

Re: update I hate to give
 
Chrisy,
You know we have always had a connectedness. Writing to you now, I feel the same way I did when my horse decided not to take a jump and screeched to a halt in front of it. What was that? I am truly stumped on what to say.
But I love you, feel for you, admire you, hold hands with you, and cry for you. Rule out what's influencing the bili numbers, it could just be the new drug...
Chrisy edited and so did I!
With love,
Karen

chrisy 04-05-2013 02:59 PM

Re: update I hate to give (with a little more positive spin)
 
Just rereading my post...what a downer it was! So not my style. So I changed it a little.

Forgot to add...the eribulin also increases bilirubin. So although it's very precarious there's questions.

StephN 04-05-2013 03:00 PM

Re: update I hate to give
 
Dear Chris -
I feared your silence meant that things were not going so well. You have been and continue to be very brave and plunge on battle after battle.

When I thought my timer was nearing the dinging point a few years back, I could see all the pain and suffering in the eyes of my family and loved ones. That brought me up short. They tried so hard to be helpful and not show their feelings, but it comes through all the same. It is very hard to reassure your close ones at that stage, but you will do it through love and grace.

My "papers" were not ready either, and that seemed more of reaction to a death knell than tidying up in any event.

My prayers are with you. I will never forget the great time we had as roomies at the swanky spa Miraval. We were free to be ourselves, wander the grounds, have spa services and wonderful treatments like the watsu we discovered. That was WAY back in early January of 2008.

dawny 04-05-2013 03:26 PM

Re: update I hate to give (with a little more positive spin)
 
Chris, thanks for updating us, even though you don't like to give us bad news, I can tell. Fingers and toes crossed that the eribulin works for you, and will give you more time. You are an inspiration on this board, full of knowledge, humor and hope
Dawn xxx

NEDenise 04-05-2013 03:30 PM

Re: update I hate to give (with a little more positive spin)
 
Chris,
As you once said to me...I will always be proud to be one of your peeps. Prayers are still headed your way, along with loads of love. You have been a lifeline for me on more than one occasion...and I hope my love and prayers are a comfort to you as you fight this latest, most unfair battle. Cancer sucks! What an inadequate understatement that is!

I'm counting on that one set of footsteps to carry you, and make you feel safe, and loved. Rest easy...but lean hard.

Love you, Chris
Denise

Joan M 04-05-2013 03:35 PM

Re: update I hate to give (with a little more positive spin)
 
Chrisy, Crap!!! And you know that doesn't really do justice to what I want to write. Love you always, girl. Joan

europa 04-05-2013 04:23 PM

Re: update I hate to give (with a little more positive spin)
 
I am dumbfounded ...speechless. You have always chimed in to my worries and boohoo moments and I love you dearly for being as unique and fabulous as you are. But sista....the fat lady has not sung yet. So hike up your nickers and get that eribulin.

Paty 04-05-2013 05:02 PM

Re: update I hate to give (with a little more positive spin)
 
Chrisy,
I am so sorry to hear the news, all we can have is hope. I will be praying so this hard time with the medication willnot be as difficult. You have been one of the great examples that BC has given me. I will be praying. Sending you hugs and all my love.

Paty

'lizbeth 04-05-2013 05:23 PM

Re: update I hate to give (with a little more positive spin)
 
Chrisy,

Oh I wish that you had received better news. You are very brave in a tough situation.

My husband just had an MRI on his liver this week because it looked "wavy". He comes home from work today with a stomach ache and I'm thinking this is so not good. I did some energy work and Thai abdominal work and he started feeling much better. Then the hospital calls and he gets the all clear on the MRI. Wow. Such a huge relief. So unexpected as he enjoys enough wine to pickle the darn thing. I feel like we dodged a bullet.

What the heck, the Erubilin might be your Unicorn. Maybe the fat lady won't get to sing. On the bright side, your paperwork will be done and you won't have to worry about it.

Sending you love and healing energy

tricia keegan 04-05-2013 05:44 PM

Re: update I hate to give (with a little more positive spin)
 
Chrisy you're a fighter and won't call halt until the end, keep on fighting girl!!!!

Jean 04-05-2013 05:52 PM

Re: update I hate to give (with a little more positive spin)
 
Chrisy,
I am praying hard for you, your husband and family.
I have admired your grace and strength. I am hoping that we will hear better news.

Hugs,
Jean

karen z 04-05-2013 06:04 PM

Re: update I hate to give (with a little more positive spin)
 
Chrisy,
I have spent enough time with you in San Antonio to know that in addition to hearing news you did not want to hear.........that it was likely quite difficult to post your news on the board. I am glad you are going to do eribulin and please do not worry that your post is a "downer". You are lots of things you are (bright, funny, brave, strong) but not someone who puts a negative spin on everything (or really anything). Please post when you can and let us know what is going on. I can imagine how difficult it is for you to watch your family worry during this time. Just love them and let them love you and be your wonderful self.
With love, thoughts and prayers in my mind and heart.
Karen Z

Ceesun 04-05-2013 06:17 PM

Re: update I hate to give (with a little more positive spin)
 
Chrisy, I don't know what to say exactly so I will just stumble around...because I cannot remain silent where you are concerned. I have admired your thoughts and comments over the many years on this board...and so very happy that you did so well on tdm1 for several years...good quality time. Please push on a little more...you have given me (us) faith, hope, and love, and the greatest of these is love...( Ceesun ) Cathy

LoisLane 04-05-2013 06:22 PM

Re: update I hate to give (with a little more positive spin)
 
Chrisy that post was not a downer. You are one amazing woman. Your acceptance of this progress is given to us with honesty, courage and absolute
strength. I dont know what else to say. It is women like you who guide us here and help us so much. Your posts have made me smile so many times, along with all you other lovely people here. Blessings to you beautiful Chrisy xo

CoolBreeze 04-05-2013 06:26 PM

Re: update I hate to give (with a little more positive spin)
 
I'm so sorry Chrisy. I have often wondered how on earth I will be able to tell my family when that day finally comes for me. I hope I can do it with as much grace as you have. If we didn't have our families, this wouldn't be such a terrible thing to face, would it?

Good luck with your paperwork. I'm hoping that eribulin gives you a lot of time to finish it.

suzan w 04-05-2013 06:53 PM

Re: update I hate to give (with a little more positive spin)
 
Oh my...What brave words you have written. Peace and love to you.

dchips1 04-05-2013 07:22 PM

Re: update I hate to give (with a little more positive spin)
 
prayers for you and your family.

Darita

Andrea Barnett Budin 04-05-2013 07:57 PM

update I hate to give (with a little more positive spin)
 


Cure Liver Damage

I am beside myself. In googling for some hope for you, which
you must cling to
-- I found this link above.

It's my feeble attempt to offer you food for thought. And HOPE! You are a star. Your radiance and down to earth humor shine on us all, all the time. We're all so blessed to have you. And, we're not letting go so fast.

Your family is scared. That's what you're seeing. I have seen that fear in my husband and daughters. The love that spews up and out is palpable. Focus on the love, Chrisy. Show them what you're made of. Reach for anything you can to get you out of this mess!

I live in hope. You live in hope. Don't stop now. Hospice? I don't think so. It's too unfathomable for me to think. Not Chrisy. No way.

My heart is out of my body and with you in California, dear friend. OOOOOOOOOOOOOOOOOOO and my love, as always, and forever...
Andi

Pamelamary 04-05-2013 09:28 PM

Re: update I hate to give (with a little more positive spin)
 
Chris, I am so saddened by your news, but awed by your grace and courage.
Thinking of you..... Pam

KsGal 04-05-2013 09:41 PM

Re: update I hate to give (with a little more positive spin)
 
Oh, Chrisy..nooo. :( I am truly saddened to hear the words your doctor spoke to you. I can't pretend to know exactly how you feel, but I do know that leaving my family and seeing them suffer and hurt is the worst part of this whole damned thing. This just isn't fair, none of it is. I will send lots of prayers, and I still believe in miracles and hope you do too.

Catherine 04-05-2013 09:49 PM

Re: update I hate to give (with a little more positive spin)
 
Chrisy, You are our standup, lie-down comic. You tell it like it is with wisdom, humor and honesty. No one would ever consider you a downer. You can sing off key if you want, but you are not closing down this bar. We will sing with you as you tell your liver to reboot. You are a doll and we all need you. Take good care of yourself and know that all of us are delighted to be your friend and allie. (sp)

Hugs,hope, prayers and miracles!

Debbie L. 04-05-2013 11:35 PM

Re: update I hate to give (with a little more positive spin)
 
Chris, only you would judge your original post to be a "downer". Your news, of course, is a downer. But your spirit shining so brightly thru it, as always -- NOT a downer at all.

Sending love and good thoughts. That does not sound like nearly enough but it's all we can do.

Much love to you,
Debbie Laxague

Emy 04-06-2013 12:07 AM

Re: update I hate to give (with a little more positive spin)
 
Christ,
I was praying the TACE procedure would work, I thought it was for the whole liver....Stay strong and fight....
With love,
Eileen

Jackie07 04-06-2013 12:09 AM

Re: update I hate to give (with a little more positive spin)
 
Chris,

Hand in there. Eribulin sounds like a winner ...

Am J Health Syst Pharm. 2012 May 1;69(9):745-55. doi: 10.2146/ajhp110237.
Eribulin mesylate: a novel halichondrin B analogue for the treatment of metastatic breast cancer.

McBride A, Butler SK.
Source

Arthur G. James Cancer Hospital, Richard J. Solove Research Institute, The Ohio State University, Columbus, 43212, USA. alimcbride@gmail.com

Abstract

PURPOSE:

The pharmacology, pharmacokinetics, clinical efficacy, safety, and administration of eribulin in patients with metastatic breast cancer are reviewed.
SUMMARY:

Classical chemotherapeutic agents for breast cancer have dominated treatment regimens even in the era of targeted therapy. Disease progression through these agents is often due to the development of resistance or lack of efficacy with these agents. Recently, a new nontaxane agent, eribulin mesylate, was approved for the treatment of metastatic breast cancer in patients who have received at least two prior chemotherapeutic agents.

Eribulin is a member of a new class of synthetic cytotoxic agents derived from the Japanese sea sponge Halichondria okadai. Eribulin differs from other antimicrotubule agents in that it can bind to the microtubule cap and inhibit tubulin polymerization, leading to microtubule arrest. In Phase II clinical trials, eribulin demonstrated activity in extensively pretreated patients who had previously received an anthracycline, taxane, and capecitabine and had shown disease progression within the last six months of treatment.

In a pivotal Phase III clinical trial of heavily pre-treated patients, patients who received eribulin versus the physician's treatment of choice showed a significant increase in overall and progression-free survival. Eribulin has a manageable adverse-effect profile, consisting mainly of neutropenia and fatigue. Eribulin has been associated with a low incidence of peripheral neuropathy.
CONCLUSION:

Eribulin, a novel synthetic antimicrotubule agent that binds to the vinca domain of tubulin and inhibits the polymerization of tubulin, offers a new treatment option for metastatic breast cancer or locally advanced breast cancer.

michka 04-06-2013 12:53 AM

Re: update I hate to give (with a little more positive spin)
 
Dear Chris. I just can't find the words. It is a shock. I just don't want this to be happening to you. You opened the way for me with your TDM1 success. When my liver was stopping and was close to the end, I fought to find TDM1 beause your story, Chris, was hope for me. You always answered all my questions. And today I am alive and well. Oh, how I hope Eribulin will stop this progresion. Allow your liver to try TDM1 again, give you time. I hope you are not suffering although I can imagine how you feel in your body and in your head. I am sending strength, hope and love. Michka

Ellie F 04-06-2013 03:34 AM

Re: update I hate to give (with a little more positive spin)
 
Don't know what to say that hasn't already been said. I am so sad to read this news. You have always been one of the ppl who have been so inspiring and caring for others even when having a tough time yourself. I am praying for more time and a miracle!
Hugs
Ellie

Bunty 04-06-2013 04:57 AM

Re: update I hate to give (with a little more positive spin)
 
Chrisy, I too was worried about not hearing an update from you, but you have again given a heartfelt post of your current place. I have always loved to read your posts and feel that you are connected to so many people here - you are a blessing. I really hope the eribulin works for you my friend......
Much love Marie x

Redwolf8812 04-06-2013 05:06 AM

Re: update I hate to give (with a little more positive spin)
 
I have no words, just prayers. You're one of my heroes.

- Penny

Midwest Alice 04-06-2013 05:16 AM

Re: update I hate to give (with a little more positive spin)
 
Chrisy, what a blessing you are! Praying for you

jaykay 04-06-2013 05:42 AM

Re: update I hate to give (with a little more positive spin)
 
Crap, f'ing cancer.

Lots of brave and strong ladies on this board and you are right up there. Keep fighting

Janis

schoonder 04-06-2013 05:45 AM

Re: update I hate to give (with a little more positive spin)
 
Chrisy,
I don't know what I'm talking about, but since you did so well on t-dm1, have been off the drug for some time, knowing so many things still aren't fully understood about cancer, I would question my onc before throwing in the towel, if kadcyla could be tried once more. One never knows.

vballmom 04-06-2013 05:54 AM

Re: update I hate to give (with a little more positive spin)
 
Love, hugs, prayers and positive healing thoughts coming your way.

Mtngrl 04-06-2013 06:01 AM

Re: update I hate to give (with a little more positive spin)
 
Chris,

Ditto to what others said above.

I agree that the toughest thing about this disease is knowing it, and my likely eventual demise from it, will cause others to suffer. I want so much to protect the people I love, and I can't.

Ultimately, all anyone can hope for is a life well lived. You, Chris, have achieved that. Your humor, compassion, dedication, loyalty, fierceness, and love shine through everything you write on this board. You set the standard for what it means to be a member of a support group.

I will never forget you. I will try, no matter what course my own cancer journey follows, to emulate your example and be a gift to others.

Your love is what will make it possible for those who love you to go on after you are no longer with them. The way you have lived your life is your legacy. You can rest assured that you have run the race extremely well.

LeahM 04-06-2013 07:59 AM

Re: update I hate to give (with a little more positive spin)
 
I am so sorry to hear this news. I will join the others in prayer.
Leah

caya 04-06-2013 08:16 AM

Re: update I hate to give (with a little more positive spin)
 
So sorry to hear about this dear Chrisy.
You have been such a Warrior Woman, fighter, esprit de coeur, you are AMAZING!
I am praying that the eribulin works, and add my thoughts that perhaps TDM1 can be given another chance.

Sending hugs and prayers from Canada, I'm sure PinkGirl will be doing the same.

all the best
caya

PatE 04-06-2013 09:46 AM

Re: update I hate to give (with a little more positive spin)
 
Chrisy,
Just wanted to say that I am thinking of you, praying for the new med to be the answer. You inspire me to fight this disease with your sage advice and whitty commentary. You are a survivor!
Sending hugs and healing vibes your way.
Pat

SoCalGal 04-06-2013 11:13 AM

Re: update I hate to give (with a little more positive spin)
 
"acute liver failure" At least it's cute - gotta be easier than having ugly liver failure. Okay, I am grasping at hay straws, not liking this news at all, but respecting your courage in posting.

I have spent my life avoiding "good-byes" so I'll just say that if I hear a fat lady singing, I'll join in one chorus to show solidarity. In the meantime, I will pray for you to feel peace and continue to have strength. You show such grace and courage.

I have so much respect and admiration for you, and I am so sorry that you were given such bad news. Perhaps the Erube will give you some more time, without being too harsh - I certainly hope so. I am sure that you are surrounded by love, loving husband and loving family and friends. That is really what life comes down to - love. I have no words of wisdom, I feel heart broken that you are going thru this and I am grateful for our connection, our friendship and all your support over the years. My mom always said, "don't write the ending" so I'll keep that in mind and look forward to your updates as you're able...Sending much love, healing light, energy and wishes for a miracle. Flori


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