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erbitux not working :(

AnneCan
Posts: 3692
Joined: Oct 2009

Hi everyone,

I went to the hospital with a fever on Monday, had a multitude of tests, including a CT scan which showed prgression of my cancer + therefore the erbitux not working. There is no traditinal chemo left fot me to try. I asked my onc about clinical trials ; the only ones nearby right now are stage 1 + my onc says I have to be "stronger" to be considered for these - I don't know that I would try one of these even if I could. I am looking to make my body as strong as I can; suggestions are welcome! Please do not feel sorry for me; I have had a wonderful run so far. I am married to the love of my life (25 years in July) with two beautiful, amazing daughters. I still plan to fight this tooth + nail. I continue to applaud everyone's success, large + small. I am out of the hospital on a weekend pass, today is my birthday. Thinking about all of you.

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

Enjoy your birthday, and your family. There is lots of comfort in knowing you are loved.

Blake

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

As I posted few days ago my onc told me about vaccines , this not chemo ,it seems they reinforce your immune system and it's your own body who fight against cancer!. I would suggest to ask your onc.Beside that hope you are feeling better than last few days ! take care. Enjoy the weekend and birthday! .
Hugs dearest Anne!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

http://fightcolorectalcancer.org/research_news/2010/11/patients_own_tumor_cells_make_effective_cancer_vaccine

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SisterSledge
Posts: 342
Joined: Feb 2011
pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hugs!

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

Hi Anne,

I'm fairly new here, so I don't know if I've had the honor of reading about your cancer details...but posting it here might help us to know what you've already tried for treatments...traditional and alternative. Give us the lowdown and I for one will put my thinking cap on tight <3

I hope your birthday celebration is as special as you are...you deserve lotsa smiles today.

Lotsa love,
Janine

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Lovekitties
Posts: 3357
Joined: Jan 2010

Happy Birthday! Hope you and your family have a great celebration.

I am sorry to hear you were in the hospital and the current treatment is not working. While I did not have chemo, I was wondering...if you once had a chemo that worked then stopped working, would they ever go back and try it again? It seems possible that maybe the cancer today would respond again to it. Just a thought.

If the onc has no options for you perhaps it is time to try one of the alternative options which Lisa or John or others have done.

You mention you are on a weekend pass from the hospital. Any idea when you will get perm release? From my personal experience, don't know how you can get stronger off of hospital food unless they do better in Canada than here in US.

Hugs to you and yours,

Marie who loves kitties

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I think hospital food has no remedy in any country !.
I agree with you as far it's been around couple of years since last round ,chemo use to work again! at least that's what I have been told!.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi pepe and marie

I am serious, I gained weight in hospital. I was pushy with the menu but
found lots of plant based food and lean protein.

but i know this is the exception not the rule.

hugs,
pete

BuckeyedPeach
Posts: 14
Joined: Mar 2011

I'm new here but wish you a very joyous birthday! I pray also you find something that will help you beat your cancer--and beat it quickly.

Hugs and blessings,
Lisa

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lisa42
Posts: 3661
Joined: Jul 2008

Hi Anne,

I'm sorry to hear the trouble you've had and that the Erbitux isn't working for you.
I was also in the position of having "used up" all the approved chemos for colorectal cancer in Feb 2010. That is when I saw Dr. Lenz in L.A. and he recommended to me and to my onc that I take Gemzar (gemcitabine) with either Xeloda or 5FU. I know you're in Canada, so don't know how that works with trying to get something approved that normally isn't approved for our type of cancer. For me, I appealed to my insurance company with all the clinical trial evidence from Dr. Lenz. Two times in a row they denied me- I honestly don't think they even read the information, as it was quite compelling & I also had included letters from my regular onc, an onc I consulted with at UCSD/Moores, along with Dr. Lenz's letter from USC/Norris. The third time was a charm. In the meantime since it was taking so much time, I went ahead and started on it & paid on my credit card for three treatments of it. The insurance still picked everything else up, and I think the actual Gemzar payments were like $1250 a time- something like that. I was sure glad we had success because we certainly couldn't have kept that up. I ended up getting reimbursed for what I put out of pocket too. It was when I wrote a personal letter and submitted it along with all my other info (highlighting important and key bits of info). I made myself a real person in my letter to them- not just a number. I wanted them to know I wasn't a weizened up dying patient, but I was young, a mother of three kids, and relatively otherwise healthy, and were they going to be the ones to cause my death by denying a drug that could save my life??

I honestly am not sure where I put all my info and copies of what I sent, but I know I have it somewhere in my files. If you are interested in hearing more specifics on this, send me a pm and I will find the info and try to get it to you.

Gemzar has not been a drug that has made anything in me shrink (actually, it did the first 3 months), but has mainly been acting like a "dam wall"- holding things back. I have had some minor size tumor growth in the past two scans, but we're talking a millimeter or two. No new tumors have popped up anywhere else in my body during this time, and that's a good thing! I've been on the Gemzar, now 5FU (did Xeloda awhile), and Avastin together since March 2010- so well over a year now.

I know the position you're in well and I know it's scary- blessings to you and let me know if I can help with any info.

Hugs,
Lisa

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BettyJoM
Posts: 86
Joined: May 2011

I like Janine would like to hear the details of your cancer as I am new and dont know them. Not that we can rethink your oncologist but I have learned quite a few things on here, enough for me to know my oncologist is decent. what a relief..when you dont know anything how can you be sure right?

there are always other things to try. Janine knows herbs, someone may hit on something for you to ask your doctor about

you say dont feel sorry for you..but I do, as does everyone else Im sure.
we all walk on the same path

I myself will pray for you and your family every day, that will give you strength

Hugs, Betty Jo

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

you been on erbitux just since a few weeks ago ,may be I'm wrong ,how many rounds you already had ?.
Hugs!.

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idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Happy Birthday! I don't have no brainy ideas right this moment but I just wanted you to know I am thinking about you.

Jennie

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tina dasilva
Posts: 644
Joined: Sep 2010

I'm sorry Anne hugs to you Tina

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

.....and I didn't even get you anything, Annie.

Now, I'm crushed! Well, Happy Birthday to my Canadien Annie:)

Are we still 29 or is it 30 now? LOL:)

I like Lisa's idea of the Gemzar - maybe you can ask about Vectibix as well? It may just be Erbitux's cousing, but it might have different properties or agents. I don't know the differences between the two.

My next stop would be Vectibix if Folfir were to ever stop - and from there clinical trials as well.

My heart hurts for you, Annie. I've seen the difference in your mood - I see the difference in the way you post. I've known something was wrong and the change started when you started this new treatment. I know you are good at hiding your feelings, but you can never fool Sundance - I know you well enough to sense when things are not my "normal Annie."

I'll study on this some more - I just want you to get better - want you to feel good. Ok, I won't feel sorry "for you." But I will feel sorry "with you." You're my friend, how can I not hurt over this news?

You are so brave and steadfast and support so many of us around here - there should be a medal for folks like you. You and many other Canadien friends have shown me how cool the Candadiens really are!

I'll close for now, but always with you - I don't have international calling or I would buzz you, but if you want to email me, just do it. I'll be here with you and for you.

-Craig

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Kathleen808
Posts: 2361
Joined: Jan 2009

Anne,
My thoughts and prayers are with you. I hope you can celebrate your birthday with your family. We are here for you.

Aloha,
Kathleen

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Annabelle41415
Posts: 6691
Joined: Feb 2009

So sorry to hear this but don't give up and hope you can have a happy birthday. You are welled loved on this board. Hope you can get another chemo treatment.

Hugs! Kim

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Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm sorry the Erbitux isn't working. I'm glad you are here for another birthday and that you got out of the hospital to celebrate!

I hope you can rest up and get stronger, so you can try something new. Maybe Gemzar? There is also a new drug similar to Avastin that should be released soon. It targets 3 different growth factors instead of just one, and looks hopeful. The clinical trials are done, I think they are going through the paperwork to get it approved and on the market now - Zaltrap.

Enjoy your weekend with your family.

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tootsie1
Posts: 5063
Joined: Feb 2008

I hope you enjoy your weekend pass and do something great for your birthday. Mine was yesterday! I'm very sorry about your news. Praying that a great solution will be found.

*hugs*
Gail

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

its time to get angry........and persistent with your onc...he needs to come up with a plan, or find one that will...now is not the time to be passive sweetheart...please take an aggressive run at this....I don't want to lose anymore people I love......I've lost enough, your Canuuk buddy....buzz

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear anne,

so sorry to hear about this dam crc being difficult.

i'll let the stage4 gurus comment about chemo options.

its probably time to pull out all stops.

you know what i have been into diet, vitamins, meditation, TCM, exercise etc etc

if you ever want to know where to start PM me. but you could just as well review the anticancer video and lecture i put up a month ago.

I can guarantee a healthy diet and lifestyle while seeming extreme will help you to feel better, will make you stronger and give your body and mind the best chance to fight and defeat crc.

its an extreme challenge so extreme counter measures made sense to me as I am extremely desperate not to meet my departed friends to soon.

but as always follow your heart and head, they will lead you on the best path for you. I did find going to seminars and reading and then a little surfing the net helped me evolve my treatment strategy.

happy birthday as well. if you want to read a mans search for reason by victor frankel just pm me with your email and I'll email you a copy as your birthday present. its a very thougth provoking read!

love and hugs,
pete

kluong
Posts: 23
Joined: Nov 2010

We got this news about 2 weeks ago and now the onc is going to put my hubby on Vectibux (similar to Erbitux). Have your doc mentioned this drug to you?

My hubby has colon cancer with mets to liver and bone. He is like you, in the hospital because of the horrible pain to his bone and it is a treat when he gets to come home. Anyway, he will be in the hospital tomorrow to start the new chemo. We are hopefully but cautious.

I would like to pm you for further talks if you are willing. I know how you are feeling and I respect your right if you do not want to share your pain with anyone. We felt like the world gave up on us when we got the news. There is not much joy in our life and it is hard to be around other people so we keep to ourself since we found out this news. Maybe one day we will be strong enough to share our experiences but for now, we just try to stay afloat.

All my best to you,

Kim

Patti1
Posts: 109
Joined: Feb 2006

Anne,

1st Happy Birthday, we know your plight all to well. Since December we have had Nanoknife, did not work, IRE (did not work), 75% liver removal resection, then developed an abcess, ended back in hospital 2 more time for 21 days. CT last week showed more tumors back in the liver, guess what we are not giving up either, we just celebrated out 42nd anniversay on May 3rd. We started Vectibix last Thursday, and we pray that this will work. We decided on a feeding tube to help hubby try to gain weight and stop the weight loss, its a pain but we have again 1 pound, does not sound like a lot but we will take it vs a weight loss.
My prayers are with you and your family. Keep that feisty attitude up....and may you get a extended pass.Keep us posted

Love ya
Patti

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

Happy belated birthday, Anne. just letting you know I'm thinking about you.
~Aud

bigCrandy
Posts: 75
Joined: Sep 2008

Hi Anne, sorry this chemo is not working for you. I tried erbitux about a year ago and had a bad reaction to it so the onc put me on vectibix and irinotecan. After 6 months my tumors shrunk by one half then went into remission for 6 months. After a 3 month lay off from chemo it started growing again so I'm back on folfox part 2. The tumors are once again shrinking. Please Anne do not give up, fight this horrible disease with everything you have, everyone wants you to enjoy many more Happy Birthdays. God Bless you, Randy

AnneCan
Posts: 3692
Joined: Oct 2009

Thanks for the thoughtful, caring responses, and the suggestions; I really appreciate everything. I am headed back into the hospital tomorrow after a lovely birthday weekend. I am not sure when I will be out + able to answer questions but I definitely will. Take good care everyone!

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

get through this...
Yesterday would have been my Dad's 93rd Birthday. I hope you enjoyed yourself even with all that's going on.
hugs
-phil

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lesvanb
Posts: 911
Joined: May 2008

and many many more birthdays.

love, Leslie

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

sorry to have missed your birthday.....been off in those northern woods....

happy belated....I too pray for many more birthdays.....on you go girl

hugs, mags

Erinb
Posts: 295
Joined: Apr 2010

Thinking of you Anne. I hope you enjoyed your birthday.
Erin

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