Targeted Therapy

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Cazz
Cazz Member Posts: 106
in Colorectal Cancer #1

I am from the anal cancer forum, but the anal tumor has been radiated away and so I reckon that I am now more or less in the same situation as you guys with mets to my lung (removed) and liver and lymph nodes, so I want to pose the same question as I posted there:

Has anyone had targeted therapy and how did it go?  My oncologist has sent off tumor tissue to Foundation One for genetic testing and they are supposed to nail down all the mutations at the molecular level and then they search their database for the chemo drugs that are most likely to be effective (or won't be at all effective) for those particular mutations.  We are still waiting for the results to come back and in the meantime I have an appointment to go to MD Anderson at the end of the month to hopefully talk about clinical trials, one of which includes targeted therapy.  I really want to get into an immunotherapy trial, but hope to have targeted chemo as a backup in case I either can't get in for immunotherapy, or (heaven forbid) it doesn't work.  My oncologist agrees with me that the standard chemo is not likely to work for me as my latest tumors grew all through the last chemo, and it would just make me sick again, so we are anxiously looking for alternatives.

Any knowledge, opinions, thoughts?

Carol

Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
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    hi Carol,  sorry I don't have

    hi Carol,  sorry I don't have any answers, but I wanted to say hello and wish you luck.  

     

    Are you looking for info for liver and node mets?  Is surgery an option?

  • Easyflip
    Easyflip Member Posts: 588 Member
    #3
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    Hi Carol

    A new drug just got expanded access, TAS-102. It has a unique mechanism of action and it has helped some who have failed other chemos. I'm not sure if it applies to your situation but best of luck. I'm curious, was Foundation 1 covered by your insurance? I heard it costs about 10k privately. It sounds like you're in good hands, keep us posted on your progress and again best wishes!

    Easyflip/Richard

  • sflgirl
    sflgirl Member Posts: 220 Member
    #4
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    Easyflip said:

    Hi Carol

    A new drug just got expanded access, TAS-102. It has a unique mechanism of action and it has helped some who have failed other chemos. I'm not sure if it applies to your situation but best of luck. I'm curious, was Foundation 1 covered by your insurance? I heard it costs about 10k privately. It sounds like you're in good hands, keep us posted on your progress and again best wishes!

    Easyflip/Richard

    Foundation One

    Hi Richard,

    Foundation One costs $5800.  My insurance covered all but $1100.  I have blue cross PPO.

    Unfortunately the results were not helpful in terms of recommended first line treatments, my mutations were found in many patients but no specific treatments are known at this time.

    There are two phase 1 clinical trials that might help but I'm not ready to be a guinea pig yet, lol.  The good news was I tested negative for BRAF and KRAS.  

    My current Folfoxiri is working, confirmed by a scan yesterday :)

    i will say that if anyone's insurance covers it I would highly recommend  getting it done.

  • Cazz
    Cazz Member Posts: 106
    #5
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    sflgirl said:

    Foundation One

    Hi Richard,

    Foundation One costs $5800.  My insurance covered all but $1100.  I have blue cross PPO.

    Unfortunately the results were not helpful in terms of recommended first line treatments, my mutations were found in many patients but no specific treatments are known at this time.

    There are two phase 1 clinical trials that might help but I'm not ready to be a guinea pig yet, lol.  The good news was I tested negative for BRAF and KRAS.  

    My current Folfoxiri is working, confirmed by a scan yesterday :)

    i will say that if anyone's insurance covers it I would highly recommend  getting it done.

    Foundation One

    Hi Richard, yes, I saw on their website that its $5800 and $8,000 if its for a blood cancer.  I don't know yet whether my insurance company, Blue Shield PPO, will pay, or how much.  $1100 is a bit steep, but then I have met all my co-pays and deductibles for the year already, so if its considered in-network, I shouldn't have to pay anything.  If not, who knows.

    SFLGirl, I was sorry to hear that your mutations have no particular chemo treatment recommendations, I think that's a problem with this as it is still early days and they haven't yet got enough data, but hey at least you know that you are BRAF and KRAS negative, that might be useful one day.  I'm glad that your Folfoxiri is working - yay! - my own oncologist has told me that he doesn't think the standard therapy will help me.  So yes, I am willing to be a guinea pig as I don't feel I have many options, although I really want a phase II trial rather than a phase I where they are still trying to work out the optimum dosage - too much chance of getting too little or too much.

  • Cazz
    Cazz Member Posts: 106
    #6
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    Easyflip said:

    Hi Carol

    A new drug just got expanded access, TAS-102. It has a unique mechanism of action and it has helped some who have failed other chemos. I'm not sure if it applies to your situation but best of luck. I'm curious, was Foundation 1 covered by your insurance? I heard it costs about 10k privately. It sounds like you're in good hands, keep us posted on your progress and again best wishes!

    Easyflip/Richard

    Thanks

    Thanks, Richard, for the heads up on TAS-102, I'll mention it to my oncologist as it specifically states that its good for tumors that are FU resistant, and mine certainly are, they seemed to feed on the stuff, which meantime knocked me down and almost out!

  • sflgirl
    sflgirl Member Posts: 220 Member
    #7
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    Cazz said:

    Foundation One

    Hi Richard, yes, I saw on their website that its $5800 and $8,000 if its for a blood cancer.  I don't know yet whether my insurance company, Blue Shield PPO, will pay, or how much.  $1100 is a bit steep, but then I have met all my co-pays and deductibles for the year already, so if its considered in-network, I shouldn't have to pay anything.  If not, who knows.

    SFLGirl, I was sorry to hear that your mutations have no particular chemo treatment recommendations, I think that's a problem with this as it is still early days and they haven't yet got enough data, but hey at least you know that you are BRAF and KRAS negative, that might be useful one day.  I'm glad that your Folfoxiri is working - yay! - my own oncologist has told me that he doesn't think the standard therapy will help me.  So yes, I am willing to be a guinea pig as I don't feel I have many options, although I really want a phase II trial rather than a phase I where they are still trying to work out the optimum dosage - too much chance of getting too little or too much.

    foundation cost

    Hi Carol,

    i have met all my deductibles too, there were two tests that BCBS Rated as "investigative" so they declined payment.  However if you send your EOB's to Foundation One they will work on your behalf to try and get it covered.  You'll know if you need to do that after you get your EOB's.

    i agree, Phase 2 is much preferable than Phase 1.  Please let us know what your results report, I found it very interesting.  And if nothing else we had to the data base and hopefully help in the future.

    I'm wishing you the best and hope that you get a good report.

    Andrea

  • coloCan
    coloCan Member Posts: 1,944 Member
    #8
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    Cazz said:

    Thanks

    Thanks, Richard, for the heads up on TAS-102, I'll mention it to my oncologist as it specifically states that its good for tumors that are FU resistant, and mine certainly are, they seemed to feed on the stuff, which meantime knocked me down and almost out!

    TAS 102? This just out on it.....

    WARNING: there is a statistic in the following some may not want to see ,so be forewarned-"Number of Patients" section,second paragraph)

    http://euroscan.org.uk/technologies/technology/view/2904

    There's also something called Xilonix that'sgoing into phase III clinical trial

     

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #9
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    Dear Friend,

    There is an other test when they take actual live cancer cells and expose the to certain chemo drugs and combination to see which one is the most effective. I think it's called chemo sensitivity test. 

    www.rationaltherapeutics.com

    Laz

  • sweetheart238
    sweetheart238 Member Posts: 1
    #10
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    Thank

    Hi Cazz, can you let me know that website??

  • Cazz
    Cazz Member Posts: 106
    #11
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    sweetheart238 said:

    Thank

    Hi Cazz, can you let me know that website??

    Foundation One

    Their website is www.foundationone.com  I didn't find it particularly informative - but nor do I know why my text suddenly went green with no obvious way to change it!

    I just found out two days ago that my tissue had not gone to Foundation One after all as the lab didn't have enough left.  However, my leg tumor turned out to be cancerous and I asked them to take extra tissue at biopsy so now we have plenty and my oncologist just sent the sample off.  He said they should get back within two to three weeks.  I'll keep you posted on what and how the results are.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #12
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    Cazz said:

    Foundation One

    Their website is www.foundationone.com  I didn't find it particularly informative - but nor do I know why my text suddenly went green with no obvious way to change it!

    I just found out two days ago that my tissue had not gone to Foundation One after all as the lab didn't have enough left.  However, my leg tumor turned out to be cancerous and I asked them to take extra tissue at biopsy so now we have plenty and my oncologist just sent the sample off.  He said they should get back within two to three weeks.  I'll keep you posted on what and how the results are.

    I did the Foundation One

    I did the Foundation One test. It was $5800. They fought for months with my insurance but they refused to pay any part of the bill. They were nice enough to reduce the bill from $5800 to $4600. It really is a great test but unfortunately there currently isn't anything great or even available for the mutations they found in me. But the bright side there could be a trial one day for some of my mutations which I will alreay have that information. So it could be very useful in the future. Everything is a "crap shoot" when it comes to dealing with stage IV CRC but I have to keep rolling the dice at any remote possibility.

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