Second Opinion Confirms Things - It Is Back & Inoperable - Not Happy :(

NewHere
NewHere Member Posts: 1,393 Member

Got a second opinion and it confirms what I was told.  Inoperable and it is just a question of when I go back on chemo and see how long it lasts.  The second opinon actually said start chemo now, though waiting to see when it spreads or I become symptomatic is also an approach to follow.  I think I am going to stick with that approach to see how long I can stretch things out.

I am using traditional chinese medicine, accupressure and accupunture, along with supplements of Vitamin D, C etc. to see if any of that helps hold things off.  Scan next month to see how it goes.  I will not turn down chemo when the time comes, but since there is no downside in pursuing the alternatives right now, might as well go for it.  

Looking at trials now based on my KRAS mutation (30-50% have this) and cetuximab/ERBITUX and panitumumab/Vectibix won't work.  Also have MMR-Proficient which messes with immunotherapy targeting death receptors (80-85% of CRC are MMR-Proficient )

I expected that MSK was not going to miss something, but would have been remiss in not at least trying for a second opinion.  Based on my next scans, may look for a third, but ....

The one positive is that it seems to not be aggressive and my general health should help with the chemo again when the time comes.  

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Comments

  • Tunadog
    Tunadog Member Posts: 235
    Sorry to hear about your problems

    I know what you mean about wait and see.

    Best of Luck 

  • airborne72
    airborne72 Member Posts: 286 Member
    Attitude is Everything

    That sucks, but more important is your affirmative attitude. I am impressed.

    Good luck my friend.

    Jim

  • Mikenh
    Mikenh Member Posts: 777
    Do you have KRAS G12D or G12V

    Do you have KRAS G12D or G12V?

    If you have KRAS G12D and one of two HLA (helper Alleles), then there's a Clinical Trial at NIH in Maryland using something called TIL Therapy. The first patient that they tried it on (7 lung mets) had an amazing recovery.

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    Drat!

    Not good news, New, I am sorry to hear it. 

    I know you will feel better to have gotten the second opinion.

    You know that you will now take over the batton from our friend, John; and report on how the TCM is working for you. He would be so chuffed to know that his words influenced you. 

    You are a positive spirit, New, and that will help you as you face the future. We will face it with you. 

    Tru

     

  • NewHere
    NewHere Member Posts: 1,393 Member
    Tunadog said:

    Sorry to hear about your problems

    I know what you mean about wait and see.

    Best of Luck 

    Thanks Tuna

    I will keep on keepin' on.  :)

  • NewHere
    NewHere Member Posts: 1,393 Member
    Mikenh said:

    Do you have KRAS G12D or G12V

    Do you have KRAS G12D or G12V?

    If you have KRAS G12D and one of two HLA (helper Alleles), then there's a Clinical Trial at NIH in Maryland using something called TIL Therapy. The first patient that they tried it on (7 lung mets) had an amazing recovery.

    KRAS

    KRAS (NM_033360) exon2 p.G13D (c.38G>A) is the one I have.  One of the things i asked on the second was should I do further genetic testing (this second from Mass General), was told no and that MSK test was enough. May still ask.  Not sure about the helper Alleles.  NIH is about 3 blocks from my brother.  I was scanning this site today - http://www.clinicaltrials.gov

    I know you mentioned you were tested by Mass General (Dana- Farber?) in MA.  I looked to find a testing center in NYC area or would travel to Boston.  Which test did you do?  (I have never gotten search down on this site Cool)   I can ask my PCP to arrange it.  Anything that can possibly help, I would do.

  • NewHere
    NewHere Member Posts: 1,393 Member

    Attitude is Everything

    That sucks, but more important is your affirmative attitude. I am impressed.

    Good luck my friend.

    Jim

    Trying My Best

    Got to keep on going and not let it bring me down too much.  This news was a bit more difficult to bounce back from, but to the extent I reduce stress it is good for the body.  The accupressure and accupuncture and meditation is fun.  Feel like I am pampering myself a bit.  Need to get better about completely zoning out - after the treatment, as the needles are in me, I am listening to mediatative flute music.  Need to calm my mind a bit more during that to relax.

  • NewHere
    NewHere Member Posts: 1,393 Member
    Trubrit said:

    Drat!

    Not good news, New, I am sorry to hear it. 

    I know you will feel better to have gotten the second opinion.

    You know that you will now take over the batton from our friend, John; and report on how the TCM is working for you. He would be so chuffed to know that his words influenced you. 

    You are a positive spirit, New, and that will help you as you face the future. We will face it with you. 

    Tru

     

    I Love The Word Chuffed

    And you know it. Still sounds risque.  LOL 

    The second opinion was worth it and I would highly recommend going to get one.  The report was nicely done and having an 8 page document and the ability to ask any questions and get answers was worth it.  One of the big ones was confirming it really is inoperable due to location and that it probably is running around everywhere at this point.  I do appreciate that they are not sending me into a h--lish surgery that would have limited benefits and would really dink me on the quality of life side.

    I wish John was around, would have a couple of questions to bounce off him.  Some guidance on TCM side of things would help.  Like Western Medicine, I have run into divergent opinions from a couple of TCM pracitioners.  The one I am working with is studied in both Eastern and Western medicine and someone from Asia.  (Not sure if you recall one of the things John and I discussed about selecting someone, he believed in someone who had an inherent belief as part of traditon, the pracitoners I have met with meet that criteria.)  The person I selected has me dosing on Vitamin D and C in high amounts (nothing crazy).  Some other supplements, Selenium and Artichoke Pills, plus also herb mixtures.  It is funny, as I stir the mixture in the pot, I think of John's instructions.  It seems to be a different mixture and different rules (about 12 tablespoons a day, not drinking cups, the first TCM had me drinking a glass of mixture tea twice a day.

    Will definately let everyone know how the next scan goes.  Fingers crossed that satys the same or shrinks.  That would be awesome.

  • Mikenh
    Mikenh Member Posts: 777
    NewHere said:

    KRAS

    KRAS (NM_033360) exon2 p.G13D (c.38G>A) is the one I have.  One of the things i asked on the second was should I do further genetic testing (this second from Mass General), was told no and that MSK test was enough. May still ask.  Not sure about the helper Alleles.  NIH is about 3 blocks from my brother.  I was scanning this site today - http://www.clinicaltrials.gov

    I know you mentioned you were tested by Mass General (Dana- Farber?) in MA.  I looked to find a testing center in NYC area or would travel to Boston.  Which test did you do?  (I have never gotten search down on this site Cool)   I can ask my PCP to arrange it.  Anything that can possibly help, I would do.

    Immunotherapy works by

    Immunotherapy works by targeting structures on the cell surface and telling the Immune system to go after cells with a particular structure. KRAS mutations are inside the cell so normally the immune system would be unaware of a cell that's bad. There are helper alleles. I've read that there are hundreds but that we typically have six of these. These Helper Alleles will signal bad cells to the cell surface if they find a problem. But the Helper Alleles need to be able to detect problems. The Allele HLA-C*08:02 will signal KRAS G12D to the cell surface. The Allele HLA-A-A*11:01 is thought to present G12D and G12V to the cell surface.

    So far, the trials are only for G12D and maybe G12V. It may be because G12D is the most common of the KRAS mutants. Or that it was the first match between HLAs and mutations that they ran into. I chatted with my son's manager and he told me that this area holds a lot of excitement but it would mean analyzing all of the mutations and the helper alleles to see which are useful for flagging tumor cells and then coming up with the immunotherapy for targeting the cell surface structures and that doing this would take a fair amount of time.

    The story of the first person (a lady on another board) that got this treatment is at:

    https://cancerriot.blogspot.ca/search?updated-max=2016-08-10T10:37:00-04:00&max-results=7

    And there's a more english version of what happened.

    So that's why I asked about G12D and G12V. I am not aware of anything in this space for G13D but so far they're only working on two out of a large number of mutations.

    One thing on terminology: genetic testing refers to testing your genes. Genomic tumor testing refers to testing the tumor. MGH requested what remained of my biopsy from my local hospital (the first part was sent to Mayo to confirm cancer) and had it transported to MGH. They performed two assays using their Next-Gen Sequencing Platform. An RNA assay looking for fusion transcripts as a result of translocations. They looked at 50+ target genes. The second assay looks at DNA variants for 91+ genes. BTW, this is the technology that you want as it finds your mutation instead of telling you what you don't have - in the old days, you tested for things one or two at a time.

    I believe that they do the complete sequence of the tumor and store it so I think that I could ask if they could tell me which HLAs are in the tumor to see if I have one of the two known HLAs that signal KRAS G12D to the cell surface. I've already had chemo, radiation and surgery so a lot of damage has already been done but it would be nice to know if I had the helpers in case I get a recurrence. It would also be nice if we could map out all of this stuff for all of the KRAS mutations to the HLAs. That way, future tests could just tell you if immunotherapy was an option. It seems to be luck of the draw right now. I've seen some of the statistics but they're on relatively small samples.

    Papers that I'm looking at: Adoptive T cell therapy for cancer in the clinic; Identification of T-cell Receptors Targeting KRAS-Mutated Human Tumors; T-Cell Transfer Therapy Targeting Mutant KRAS.

    If MSK uses the same tech as MGH, then they should have your entire tumor sequenced. But this other stuff wouldn't be helpful at this time because the research isn't there for G13* yet. When you said that your mutation was common - I assumed G12D which is why I asked.

    There's a long discussion on the therapy, called TIL, at http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=49736

  • NewHere
    NewHere Member Posts: 1,393 Member
    Mikenh said:

    Immunotherapy works by

    Immunotherapy works by targeting structures on the cell surface and telling the Immune system to go after cells with a particular structure. KRAS mutations are inside the cell so normally the immune system would be unaware of a cell that's bad. There are helper alleles. I've read that there are hundreds but that we typically have six of these. These Helper Alleles will signal bad cells to the cell surface if they find a problem. But the Helper Alleles need to be able to detect problems. The Allele HLA-C*08:02 will signal KRAS G12D to the cell surface. The Allele HLA-A-A*11:01 is thought to present G12D and G12V to the cell surface.

    So far, the trials are only for G12D and maybe G12V. It may be because G12D is the most common of the KRAS mutants. Or that it was the first match between HLAs and mutations that they ran into. I chatted with my son's manager and he told me that this area holds a lot of excitement but it would mean analyzing all of the mutations and the helper alleles to see which are useful for flagging tumor cells and then coming up with the immunotherapy for targeting the cell surface structures and that doing this would take a fair amount of time.

    The story of the first person (a lady on another board) that got this treatment is at:

    https://cancerriot.blogspot.ca/search?updated-max=2016-08-10T10:37:00-04:00&max-results=7

    And there's a more english version of what happened.

    So that's why I asked about G12D and G12V. I am not aware of anything in this space for G13D but so far they're only working on two out of a large number of mutations.

    One thing on terminology: genetic testing refers to testing your genes. Genomic tumor testing refers to testing the tumor. MGH requested what remained of my biopsy from my local hospital (the first part was sent to Mayo to confirm cancer) and had it transported to MGH. They performed two assays using their Next-Gen Sequencing Platform. An RNA assay looking for fusion transcripts as a result of translocations. They looked at 50+ target genes. The second assay looks at DNA variants for 91+ genes. BTW, this is the technology that you want as it finds your mutation instead of telling you what you don't have - in the old days, you tested for things one or two at a time.

    I believe that they do the complete sequence of the tumor and store it so I think that I could ask if they could tell me which HLAs are in the tumor to see if I have one of the two known HLAs that signal KRAS G12D to the cell surface. I've already had chemo, radiation and surgery so a lot of damage has already been done but it would be nice to know if I had the helpers in case I get a recurrence. It would also be nice if we could map out all of this stuff for all of the KRAS mutations to the HLAs. That way, future tests could just tell you if immunotherapy was an option. It seems to be luck of the draw right now. I've seen some of the statistics but they're on relatively small samples.

    Papers that I'm looking at: Adoptive T cell therapy for cancer in the clinic; Identification of T-cell Receptors Targeting KRAS-Mutated Human Tumors; T-Cell Transfer Therapy Targeting Mutant KRAS.

    If MSK uses the same tech as MGH, then they should have your entire tumor sequenced. But this other stuff wouldn't be helpful at this time because the research isn't there for G13* yet. When you said that your mutation was common - I assumed G12D which is why I asked.

    There's a long discussion on the therapy, called TIL, at http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=49736

    Will Repost Again To Mike

    I thought I had replied (I did and I hit post) to your post Mike.  I am not sure why it did not take.  Quick takeaway - you are seriously smart and I appreciate all you wrote ...  Not sure what happened.  The title of my reply was You Are Seriously Smart Mike.  And then went from there.  Urgh.  But thank you.

  • ron50
    ron50 Member Posts: 1,723 Member
    Wishing you well New.

    From our first diagnosis we all face the same situation that you are in now. Some of us luck out and some of us deal with it with commonsense and a plan . I applaud your plan and I hope it brings you a lot of quality time and peace of mind , Hugs Ron  .

     

  • Canadian Sandy
    Canadian Sandy Member Posts: 727 Member
    Sorry to here this New. As

    Sorry to here this New. As Ron says “we are all faced with this”. The strength you have will help carry you through. Your in my thoughts.

     

  • Mikenh
    Mikenh Member Posts: 777
    NewHere said:

    Will Repost Again To Mike

    I thought I had replied (I did and I hit post) to your post Mike.  I am not sure why it did not take.  Quick takeaway - you are seriously smart and I appreciate all you wrote ...  Not sure what happened.  The title of my reply was You Are Seriously Smart Mike.  And then went from there.  Urgh.  But thank you.

    It's actually my son that

    It's actually my son that knows this stuff. I run down papers, give them to him and then ask him to explain what they mean in simple terms. I have neither a biology nor chemistry background. I think that the future of cancer treatment is personalized medicine (that is custom for each person) but we're very early stages of this right now. I do hope that you find a solution for your recurrence and I will keep an eye out on G13D in case something pops up.

  • Lily Flower
    Lily Flower Member Posts: 256 Member
    I'm sorry to hear Newhere.

    I'm sorry to hear Newhere. You seem like you have a positive outlook of life even in this dreadful disease. I admire you. Attitude plays a great part in fighting. Good luck!

  • Cindy225
    Cindy225 Member Posts: 172
    Calming the Mind

    New - your approach to staying positive, being present and in control about your care is inspiring.  It's all so scary and having a way to calm your mind through this journey is so important. 

    Cindy 

  • PamRav
    PamRav Member Posts: 338 Member
    Sorry

    your news wasn’t better.  Do pamper yourself!!!   Meditation , relaxation can bring great comfort.  Help you focus on what’s truly important and that’s the here and now.  

    Yesterday is history; tomorrow is mystery...today is a gift. 

    Peace

    pam 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Sorry

    Sorry to hear of your recurrence.  Don't look at it as inoperable because if they or you decide to go back on treatment it could become so in the future.  There was a member here that did many of the treatments you did and he did very well for many years.  Wishing you the best and hoping that your team of doctors can give you some options moving forward.

    Kim

  • darcher
    darcher Member Posts: 304 Member
    Tough Break

      That's terrible getting news like that.  You probably want to do as the doctors say since it could become operable in the near future. 

  • NewHere
    NewHere Member Posts: 1,393 Member
    Not Operable Due To The Location

    The issue is the location. It is in area so risky they will not even do a needle biopsy due to spine, vascular area and the rest.  There could be a technique maybe at some point.  The second opinion also confirmed that it in all likelihood has spread elsewhere, so trying to do the surgery is very high risk low reward scenario.  (i.e., Bleeding out, paralysis, infection vs taking out one spot when it is most likely elsewhere and chemo bound anyway.)   

    But I am taking my vitamins, herbs and the rest.  And there is still a part of me believes that I am going to hold this at bay to avoid chemo. Maybe even have growth reduced without chemo  And there is part of me that believes even that it may not be cancer, CEA did not go up - actualy went down a tick.  I need to not get too attached to either of those thoughts, becuase when it turns out that it is cancer and spreading, that would make that time worse.

    Really do not want to go back on chemo, but I can deal with that and have a life every other week.  It is that it eventually stops working that is a bummer.  So c'mon science, new treatments hurry up please Cool

  • OzarkGal
    OzarkGal Member Posts: 41
    NewHere said:

    Not Operable Due To The Location

    The issue is the location. It is in area so risky they will not even do a needle biopsy due to spine, vascular area and the rest.  There could be a technique maybe at some point.  The second opinion also confirmed that it in all likelihood has spread elsewhere, so trying to do the surgery is very high risk low reward scenario.  (i.e., Bleeding out, paralysis, infection vs taking out one spot when it is most likely elsewhere and chemo bound anyway.)   

    But I am taking my vitamins, herbs and the rest.  And there is still a part of me believes that I am going to hold this at bay to avoid chemo. Maybe even have growth reduced without chemo  And there is part of me that believes even that it may not be cancer, CEA did not go up - actualy went down a tick.  I need to not get too attached to either of those thoughts, becuase when it turns out that it is cancer and spreading, that would make that time worse.

    Really do not want to go back on chemo, but I can deal with that and have a life every other week.  It is that it eventually stops working that is a bummer.  So c'mon science, new treatments hurry up please Cool

    AMEN!

    So c'mon science, new treatments hurry up please Cool

    AMEN to that!!!!!!