Disappointing Appointment

Chelsea71
Chelsea71 Member Posts: 1,169 Member
in Colorectal Cancer #1
Steve and I went to Montreal yesterday to find out what is next for him in terms of treatment. Up until this point we have believed the cancer to be in the liver only. Hoping for a two stage resection. If not, TACE, Theraspheres or any number of interventional procedures would have pleased us. Apparently there are now spots on the lung. This is preventing them from doing surgery. He's had a total of 27 Folfiri. Clearly, it is no longer cutting it. This surgeon is sending us to a new oncologist in Montreal. The regular onc is in Ottawa. The new chemo will be Folfirinox - oxaliplatin, irenotecan, flourouacil and leucovorin. Doesn't that sound like fun! They want to hit it hard and get the tumors under control and then do a liver resection, "with a curative intent.". To me, to even mention the c word is crazy, bit I do like their attitude. In addition, they are doing a biopsy of the liver. A piece of the tumor will be injected into a mouse. Steve will have his own mouse which will carry his tumor. Lucky mouse. They will do in depth testing to determine which chemos are effective on this tumor. Ottawa has tested for the KRAS mutation, which he has. They want to test for BRAF, as well. They will resets for KRAS. Apparently the fact that the primary tumor had the mutation doesn't necessarily mean the metastasis will.

I noticed on his blood work that the calcium level is slightly elevated. This has me wondering if there is bone involvement. He has no symptoms of it. No one has brought it up, but it concerns me.

All in all, it was very disappointing. I always go into these appointments prepared for the worse. Steve is a very positive thinker. Always thinks everything will just work out. He is very disappointed. Expected to hear lots of shrinkage, let's operate.

Thanks for "listening".

Chelsea
«1

Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
    Wow these boards are weird

    Wow these boards are weird today!   I keep trying to post and get knocked off. 

    I'm sorry to hear about the appt.

    Just keep listening to that cure word and let the doctors do their thing.  I know how stressed and anxious you are feeling, but lets keep hoping for the best.  Do some googling and ask about the liver biopsy - I think I remember reading that many recommend against them...

    DAMN!  I could have gotten Steve a mouse for free - one of five, he could have taken his pick!  I bet their mouse will cost top dollar.

    Hugs Chels!

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    The Air Just Went Out of the Room....

    Hi Chels:)

    I'm disappointed right along with you.  Steve has taken a harsh beating and I was optimistic as well that some kind of surgical intervention would be done.

    This is hard news.....I went from High to Low in a complete free-fall with your update.  Just saddens me to see people I care about getting hurt so badly when they are trying so hard.  Makes my stomach tie up in knots.

    That's a tough combo of chemo alright...I know that TaraHK did this one I believe and experienced some positive response, but I don't want to speak for her. 

    Your guy is hard as nails and I so much hope that this new plan will yield the expected results this time:)  You both deserve some good news!

    For what it's worth, give Steve my best....we're in your corner and wish we could do more.

    It's just so upsetting to watch all of us having to suffer so much. 

    I'm just about to finish up this post and was higher than a kite.....then I read the reality of what's happening to my friends and want to just hit the Delete key on what I wrote.  It just seems so not important anymore...

    Glad to be here 'listening' with you...

  • wolfen
    wolfen Member Posts: 1,324 Member
    #4
    Sundanceh said:

    The Air Just Went Out of the Room....

    Hi Chels:)

    I'm disappointed right along with you.  Steve has taken a harsh beating and I was optimistic as well that some kind of surgical intervention would be done.

    This is hard news.....I went from High to Low in a complete free-fall with your update.  Just saddens me to see people I care about getting hurt so badly when they are trying so hard.  Makes my stomach tie up in knots.

    That's a tough combo of chemo alright...I know that TaraHK did this one I believe and experienced some positive response, but I don't want to speak for her. 

    Your guy is hard as nails and I so much hope that this new plan will yield the expected results this time:)  You both deserve some good news!

    For what it's worth, give Steve my best....we're in your corner and wish we could do more.

    It's just so upsetting to watch all of us having to suffer so much. 

    I'm just about to finish up this post and was higher than a kite.....then I read the reality of what's happening to my friends and want to just hit the Delete key on what I wrote.  It just seems so not important anymore...

    Glad to be here 'listening' with you...

    On Hold

    Chelsea,

    So sorry for this latest news. Let's just believe that the liver surgery is "on hold" and as soon as these pesky lung mets are under control, the surgery will be "on" again. The dang road just seems to be filled with so many boulders.

    Wishing you both the strength to keep climbing over the boulders and onto a clear highway of success.

    Luv,

    Wolfen

  • tachilders
    tachilders Member Posts: 313
    #5
    Very interested in this

    Very interested in this information about KRAS not necessarily being the same on the matastases as it is on the primary tumor as I have never heard that before.  I will ask my oncologist about this when I see her on June 20th.  In fact, I think I will e-mail her NP right now and ask about this.  Was this the same with BRAF, or did he just never get BRAF testing done on the primary?  Very interested to hear more...

    Tedd

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #6
    tachilders said:

    Very interested in this

    Very interested in this information about KRAS not necessarily being the same on the matastases as it is on the primary tumor as I have never heard that before.  I will ask my oncologist about this when I see her on June 20th.  In fact, I think I will e-mail her NP right now and ask about this.  Was this the same with BRAF, or did he just never get BRAF testing done on the primary?  Very interested to hear more...

    Tedd

    When Steve was diagnosed two

    When Steve was diagnosed two years ago they tested for KRAS but not BRAF.  If he tests positive for BRAF the anti egfr drugs may be effective, after all. They are now testing a piece of the metastasized tumor (liver) for both mutations.  But even if they had already tested the primary for BRAF, they would still retest the met as it could be a completely different genetic makeup.  Interting, isn't it?  I knew about the first part but this was the first I had heard of there being any benefit to testing metastasis.

  • coloCan
    coloCan Member Posts: 1,944 Member
    #7
    tachilders said:

    Very interested in this

    Very interested in this information about KRAS not necessarily being the same on the matastases as it is on the primary tumor as I have never heard that before.  I will ask my oncologist about this when I see her on June 20th.  In fact, I think I will e-mail her NP right now and ask about this.  Was this the same with BRAF, or did he just never get BRAF testing done on the primary?  Very interested to hear more...

    Tedd

    I had read that primary CRC and subsequent

    liver mets are genetically different,which would imply mets elsewhere would differ too. PIK3CA should also be tested for. Further, tho i may be wrong here, i recall reading that if KRAS mutant,you won'tbe BRAF mutant and vice versa...

    http://clincancerres.aacrjournals.org/content/early/2012/01/17/1078-0432.CCR-11-1965.abstract

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #8
    coloCan said:

    I had read that primary CRC and subsequent

    liver mets are genetically different,which would imply mets elsewhere would differ too. PIK3CA should also be tested for. Further, tho i may be wrong here, i recall reading that if KRAS mutant,you won'tbe BRAF mutant and vice versa...

    http://clincancerres.aacrjournals.org/content/early/2012/01/17/1078-0432.CCR-11-1965.abstract

    Thanks Steve.

    Thanks Steve.

  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #9
    I am sorry...but at least it

    I am sorry...but at least it should like you have a plan and they are hopeful.  Does that chemo cocktail come with one of those little umbrellas that they usually put I tropical drinks?

    alex

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #10
    I wish the results had been better, Chels-

    I've had a couple of these "worse than expected" scans, and it sucks.  I guess the one thing I would say is that it sounds like you have a great team who are not giving up on Steve, and in my experience with doctors the "c" word doesn't get thrown around lightly.  If they think there is still hope for a cure for Steve, I would try to put trust in that for now, as best you can.  It's not easy, I know.  Sending strength your way~AA

  • tachilders
    tachilders Member Posts: 313
    #11
    Chelsea71 said:

    When Steve was diagnosed two

    When Steve was diagnosed two years ago they tested for KRAS but not BRAF.  If he tests positive for BRAF the anti egfr drugs may be effective, after all. They are now testing a piece of the metastasized tumor (liver) for both mutations.  But even if they had already tested the primary for BRAF, they would still retest the met as it could be a completely different genetic makeup.  Interting, isn't it?  I knew about the first part but this was the first I had heard of there being any benefit to testing metastasis.

    My primary tumor was KRAS

    My primary tumor was KRAS mutant, BRAF wild-type, according to the info I have.  They biopsied some peritoneal mets, but all I know about them is that they were confirmed to be adenocarcinoma and thus were mets from the colon tumor and not a different type of cancer.  I will have to ask my oncologist about all of this in more detail, as it could be very important with regard to treatment options.  Thank you so much for this information.  It could literally be a life-saver, or at least a life-extender....

    Tedd

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #12
    Sorry

    Sorry you didn't get better news.  I'm hoping that his new treatment works better for him and his next scan shows a big improvement.

    Kim

  • renw
    renw Member Posts: 282 Member
    #13
    coloCan said:

    I had read that primary CRC and subsequent

    liver mets are genetically different,which would imply mets elsewhere would differ too. PIK3CA should also be tested for. Further, tho i may be wrong here, i recall reading that if KRAS mutant,you won'tbe BRAF mutant and vice versa...

    http://clincancerres.aacrjournals.org/content/early/2012/01/17/1078-0432.CCR-11-1965.abstract

    chances of both kras and braf

    chances of both kras and braf mutations being present are statustically low, but they are not mutually exclusive. I had this argument with one of my oncs and eventually dug up the data and I got my braf test,despite being a kras mutant. :)

  • maglets
    maglets Member Posts: 2,576 Member
    #14
    sorry

    ah so so sorry about those results Chelsea.....indeed i know you must have hoping for so much more.  I do agree with the thinking that the cure word is still wonderful .....glad it is still floating around the room.  Sorry too that you now have this added to Montreal ....what a blessing to have fresh opportunities though.....

     

    sending love to you both, mags

  • tachilders
    tachilders Member Posts: 313
    #15
    I found a 2011 paper where

    I found a 2011 paper where they looked at 305 cases from patients that they had been able to biopsy bot the primary colon tumor site and the liver, and the results are below:

    197/305 were KRAS wild type at both sites

    108/305 had a KRAS mutation at one or both sites

    5 had KRAS mutant at primary and KRAS wild type in liver

    1 had KRAS wild type at primary and KRAS mutant in liver

    5 had a different KRAS mutation between primary and liver site

    In summary, there is only about a 3.6% chance of having a different KRAS at the primary site and the liver (they didn't look at lung or peritoneum).  Wish the chances were better....

    Tedd

  • tachilders
    tachilders Member Posts: 313
    #16
    tachilders said:

    I found a 2011 paper where

    I found a 2011 paper where they looked at 305 cases from patients that they had been able to biopsy bot the primary colon tumor site and the liver, and the results are below:

    197/305 were KRAS wild type at both sites

    108/305 had a KRAS mutation at one or both sites

    5 had KRAS mutant at primary and KRAS wild type in liver

    1 had KRAS wild type at primary and KRAS mutant in liver

    5 had a different KRAS mutation between primary and liver site

    In summary, there is only about a 3.6% chance of having a different KRAS at the primary site and the liver (they didn't look at lung or peritoneum).  Wish the chances were better....

    Tedd

    Well, my oncologist at NW has

    Well, my oncologist at NW has agreed that it might make sense to test my mets for KRAS and BRAF, so now I just have to hope they kept enough of the omental tumors that they did biopsy (to make sure they were colon cancer) to do the testing....

    Tedd

  • coloCan
    coloCan Member Posts: 1,944 Member
    #17
    tachilders said:

    I found a 2011 paper where

    I found a 2011 paper where they looked at 305 cases from patients that they had been able to biopsy bot the primary colon tumor site and the liver, and the results are below:

    197/305 were KRAS wild type at both sites

    108/305 had a KRAS mutation at one or both sites

    5 had KRAS mutant at primary and KRAS wild type in liver

    1 had KRAS wild type at primary and KRAS mutant in liver

    5 had a different KRAS mutation between primary and liver site

    In summary, there is only about a 3.6% chance of having a different KRAS at the primary site and the liver (they didn't look at lung or peritoneum).  Wish the chances were better....

    Tedd

    Current research seems to indicate that MET may have a

    greater influence on anti-EGFR treatment

    www.mdanderson.org/newsroom/news-releases/2013/met-protein-levels.html

    and

    http://ecancer.org/news/4107-asco-2013--some-patients-with-treatment-resistant-colorectal-cancers-may-have-a-new-option.php

     

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #18
    Chelsea

    I wish you folks got better news but it's pretty cool that they are using a mouse as a guinea pig so to speak. Being able to test treatments for effectiveness seems to me to be a positive step in the right direction... The roller coaster gets old, I understand how you folks must feel

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    #19
    Sorry

    Sad to hear the news, no sadder then you to be sure.  Most of all thanks for sharing with us.  

    Sudance said it best I think.  I hate to try and speak for everyone.  However, for me, it is hard to accept that this could be happening.  For the two of your it must be especially hard after so much hard and dedicated effort.  

    Hugs and hope that there is a "Cure" in the future.

    Art

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #20
    Wow! I wasn't expecting so
    Wow! I wasn't expecting so many responses to my post. Thank you so much for all your kind words.

    The positive side of all this is that Steve will now be treated at a new hospital by a new oncologist. He will now be treated in our neighboring province where they seem to take a more aggressive approach to cancer treatment. I couldn't help but be impressed by this whole mouse idea. Hopefully it will work out. It is very important when doing the biopsy that they extract a piece of the tumor that contains active cancer cells. Anyways, I really like this hospital (McGill Health Care Centre) and I like the team of doctors.

    Steve seems to be feeling better about it all. He was pretty discouraged the first couple days after learning about the progression. Talking about not renewing his magazine subscriptions etc.... It was upsetting to see him in this state of mind. He has always been so positive. I do worry about the Folfirinox. Mostly because of the Oxilaplatin. He plays the guitar and puts together model planes and has many other activities that involve fine motor
    skills. These hobbies keep him sane and occupy a lot of his time. So I am
    worried about how the neuropathy will affect his quality of life. We booked a trip to Vegas. We leave on Wednesday. Going all out. The helicopter ride over the Grand Canyon, Crisscross Angel, Cirque de Soleil etc... It may be a while before he feels well enough to do a trip like this. I feel that we just can't put these things off anymore.

    Thanks again to everybody for the support. Don't know what I'd do without you guys.

    Chelsea
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #21
    jen2012 said:

    Wow these boards are weird

    Wow these boards are weird today!   I keep trying to post and get knocked off. 

    I'm sorry to hear about the appt.

    Just keep listening to that cure word and let the doctors do their thing.  I know how stressed and anxious you are feeling, but lets keep hoping for the best.  Do some googling and ask about the liver biopsy - I think I remember reading that many recommend against them...

    DAMN!  I could have gotten Steve a mouse for free - one of five, he could have taken his pick!  I bet their mouse will cost top dollar.

    Hugs Chels!

    Hey Jen. Ha ha. Steve and I
    Hey Jen. Ha ha. Steve and I have had many laughs over the mouse thing. He has named it Bravo. Sorry to hear your still wrestling with the mouse situation.

    As for the liver biopsy, I did inquire about the risk of seeding. We weighed it out. They say it's less risky for him due to The HIPEC surgery that he's had. (No peritoneal membrane etc).

    Thanks and good luck with those mice.

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