Exhausted all current chemo

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Patience
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Re: Exhausted all current chemo

Postby Patience » Mon Apr 23, 2012 6:27 pm

I am unclear on if your current doctor could oversee the clinical trial, or if you'd need to see someone else for it? If you need to see someone else, you might considering having a consultation with them about the trial (which in effect will also give you a second opinion on your current condition and treatment options). My husband visited another hospital when considering a drug trial, and the information we gained was very worthwhile (even though he did not join the trial).
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

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Rob in PA
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Re: Exhausted all current chemo

Postby Rob in PA » Mon Apr 23, 2012 6:53 pm

R,
I'll throw a couple ideas out there for you.
First, regarding the trial, I would seriously consider doing it. One thing I've always believed in since my diagnosis is that if I can participate in a trial that may not save my life but could save the lives of others down the road, then I would do it (especially if the side effects are not that bad). I've participated in two clinicals trials. One was pre-surgery (I forget the fancy name they have for it!) Xeloda, which is now FDA approved. The other was Stereotactic Radiosurgery on multiple lung mets in both lungs.

Also, I've participated in a new approach to defining cancer "signatures" and what drugs may be best for treatment. I'm writing this by pure memory, so don't quote me on specifics but in a nutshell there is a company out there called CARIS that takes a sample of your tumor (done through needle biopsy for my lung mets) and tests different kinds of chemo drugs on it to see how it reacts. What they claim to be finding is that some patients who have, like in my case, colorectal cancer with lung mets, are more responsive to, say, chemo drugs for lung cancer or brain cancer for example. Your local radiologist can take the sample and send it to CARIS, and then they get back to your doctor with the results.

Hope this helps, these are just opinions to help you make an informed decision.

Good luck with everything.

RM
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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KarMel
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Re: Exhausted all current chemo

Postby KarMel » Tue Apr 24, 2012 4:22 am

Raclette wrote:KarMel, I'm sorry you are in a similar situation, there just are way too many of us out there! Interesting what you say about this zorafenib. I will look that up also. If you find out more I'd appreciate hearing, thank you! But I would imagine if it's off label and no insurance coverage that we could not afford it anyway, but I am curious.
R



I found this from a previous post I had made about my trip to MD Anderson

SoConfused wrote:
Karmel - the drug is called sorafenib and used to treat advanced renal cell carcinoma and unresectable hepatocellular carcinoma ... perhaps, it's used, off-label, to treat unresectable CRC liver tumors? I am curious to learn more about this so I'll do some digging.

Yep, I have unresectable liver and lung tumors. The MDA doc says sorafenib differs from regorafenib by a single flourine molecule. However, that simple change makes it a distinctive entity and the company that makes regorafenib has proprietary interests which resulted in regorafanib being the drug that just wnet thru all the phase 3 trials and showed benefit for stage IV's who failed all the conventional treatments ( like me ) So the sorafenib would be just like regorafenib, I believe.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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CheeseHead
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Re: Exhausted all current chemo

Postby CheeseHead » Tue Apr 24, 2012 7:21 am

Sorry you are in this spot.

Just some more ideas: there's recent research that suggests that switching from Vectibix to Erbitux can help if Vectibix is losing its efficiency*). Perhaps the other way round could work as well?

Good luck,
Cheese

*) http://www.colorectal-cancer.ca/IMG/pdf/CCAC_Research_March_16_2012.pdf,
    2008
    10 Stg 4 colon srgry
    12 Xelox/Avast
    2009
    05 Liver srgry
    -12 Xelox
    2010
    05 Xelox
    08 Iri/Vect
    11 Liver srgry
    2011
    01-05 Iri,Vect,Xeloda
    09 CyberKnife
    2012
    03-07 Ph I trial
    08-11 Regorafenib
    2013-
    Xeloda
    Vecti
    Iri
    Xelox

stevel

Re: Exhausted all current chemo

Postby stevel » Tue May 01, 2012 8:45 pm

Hi Raclette,

I'm sorry that you have had to get the news you received. There is always hope and I would like to suggest you look into this link below, and read all you can on the subject matter, and then ask questions and demand answers. Not to far from you is the Mayo Clinic Rochester, the leader in colon cancer and also there is one of the top colon cancer doctor Dr. Axel Grothey.

http://fightcolorectalcancer.org/resear ... ded_access

This new drug shows great promise for those who have had progression on the desease even with current "standard of care" treatments. The research is ever changing. Please be strong, keep fighting.

I hope this information helps you.

God Bless,


Steve L

Raclette
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Location: Northern Illinois/WI

Re: Exhausted all current chemo

Postby Raclette » Wed May 02, 2012 8:07 am

Steve,
Thanks for that info, very interesting! Actually, I did talk to my onc. about receiving Regorafenib for compassionate reasons but he wants to save that and some of the other ideas I've been given e.g. using a mix of several previously used chemos all at once if there's nothing left. He thinks I should go ahead with the trial for the new drug first. So after talking to him more I have decided to go ahead with the trial. Even though it's a phase 1 study, apparently this drug has been tested enough on humans that they have a good idea of the minimal dose. And if this drug works as hoped, it will help many cc patients. So I am feeling better about it, and I do trust my oncologist.
R
Dx 01/10 stage IV cc, mets to uterus & sac ofcancer seeds
Folfax 1/10-5/10
06/10 5Fu & Avastin
NED until 12/11
Mets to ovaries & cancer seeds in pelvis
01/12 start irinotechan & Vectibix
04/12 stopped iri & Vectibix-not working

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Gaelen
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Re: Exhausted all current chemo

Postby Gaelen » Wed May 02, 2012 9:04 am

KarMel - regorafenib's expanded release program is available in some locations *now*. At leat one of them is in Houston TX. Take a look at the list in my article in the Regorafenib expanded access thread. Expanded access is kinda like a clinical trial - but with some significant differences.

And FWIW - using a drug off label isn't much different from expanded access...but EA does have more patient controls.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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elise
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Re: Exhausted all current chemo

Postby elise » Wed May 02, 2012 9:16 am

KEEP FIGHTING LIKE YOU MEAN IT!

I'd try the trial and so you'll never think "what if".

Love,
Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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KarMel
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Re: Exhausted all current chemo

Postby KarMel » Wed May 02, 2012 10:59 am

Gaelen wrote:KarMel - regorafenib's expanded release program is available in some locations *now*. At leat one of them is in Houston TX. Take a look at the list in my article in the Regorafenib expanded access thread. Expanded access is kinda like a clinical trial - but with some significant differences.

And FWIW - using a drug off label isn't much different from expanded access...but EA does have more patient controls.


I saw that thread...thanks very much for posting article. i have to wait for my next CT to determine if I am failing the irinotecan/avastin regimen. That is due in mid to late May. Then, if there is progression, I will be all over the expanded access program for REgorfanib.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"


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