Looking for advice

Phoenix_66
Phoenix_66 Member Posts: 118
edited June 2017 in Colorectal Cancer #1

I am a two time Stage 4 colon cancer survivor.  It looks like the cancer may be recurring again (more test next week to see if same type or different).  I have used a highly recommended cancer clinic in the greater memphis area for the past 11 years during all this.  The Oncologist is suggesting we use the same chemo that was used two times before (that obviously did not work).  I am beginning to wonder if it is time to get a second opinion.  Everyone tells me to go to MD Anderson but I don't want to waste time (that I may not have) starting over with people I'm not comfortable with yet.  Any thoughts or advice?

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    Welcome to the forum

    I have noticed that you are already becoming familiar with the acronyms.  NED is what we are all after. NED is our friend. 

    I'm sorry that you have been diagnosed and joined our little club. The club nobody wants to be a part of. 

    I've heard that a second opinion is always a good idea. So far, I have been quite happy with my treatment, so have never sought out a second opinion. Of course, I live 300 mile drive (both ways) to my Oncologist, so I didn't bother looking around. 

    I wish you all the best as you make your decision. 

    Visit often. We're all here for you. 

    Tru

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #3
    Storm, you rock! You're the

    Storm, you rock! You're the cancer survivor that gives us all hope! Good for you!! I'm curious, what chemo have you been on? And my understanding is that cancer can become immune to a specific chemo like bacteria does to antibiotics, so maybe a new one is a good idea. But if it worked before then it's scary to try something different. I wonder of doing the one that worked first and then maybe switching to another would be of benefit.

    Good luck! I hope it turns out that it hasn't returned and it's not an issue.

    Jan

  • PamRav
    PamRav Member Posts: 348 Member
    #4
    Geez

    if you're 11 years out , even with a second occurrence I'd say your chemo worked really well !    

    I had a second opinion after my diagnosis with a well regarded facility ( not MD Anderson). And honestly their treatment options were no different from what I'm receiving now At myl university hospital. 

    wishing up another great outcome...if it indeed is back 

     

     

     

     

     

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #5
    JanJan63 said:

    Storm, you rock! You're the

    Storm, you rock! You're the cancer survivor that gives us all hope! Good for you!! I'm curious, what chemo have you been on? And my understanding is that cancer can become immune to a specific chemo like bacteria does to antibiotics, so maybe a new one is a good idea. But if it worked before then it's scary to try something different. I wonder of doing the one that worked first and then maybe switching to another would be of benefit.

    Good luck! I hope it turns out that it hasn't returned and it's not an issue.

    Jan

    Chemo

    In 2006 I took 12 rounds of Oxalyplatin, Leucavorin, & 5FU.  In 2013 I took the same three but they added Irrinatikin and Avastin.  (Sorry for the spelling)

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #6
    PamRav said:

    Geez

    if you're 11 years out , even with a second occurrence I'd say your chemo worked really well !    

    I had a second opinion after my diagnosis with a well regarded facility ( not MD Anderson). And honestly their treatment options were no different from what I'm receiving now At myl university hospital. 

    wishing up another great outcome...if it indeed is back 

     

     

     

     

     

    MD Anderson

    My wife actually ran into my primary care physician's nurse today and she basically said the same thing.  That most reputable clinics all administer from the same set of rules and usuall check with MD Anderson before prescribing a treatment regiment.

  • NewHere
    NewHere Member Posts: 1,428 Member
    #7
    Could Be The Chemo Worked

     If each round knocked it out for 7 years and 4 years, it sounds like it worked.  The same cocktail(s) may still work for you.

     Some things to also look at is genetic mutations (DNA testing) which your docs may have done in order to try combinations and/or new studies or treatments.  A lot of things are done as a matter of course pretty much across the board (i.e., FOLFOX is usually the first line of treatment in chemo), but a second opinion never hurts if you have concerns.  

    Try to stay positive.  I am Stage IVB myself.  The Oxiplatin caused me issues about two-thirds in my treatment, but if I had to go through 6 months of chemo (without the Ox) every four to seven years and be NED for a good chunk of time, I probably would sign up for it at this point.  (With the preference of never having this come back of course Laughing  )

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #8
    Hello Storm
    I will second NewHere's opinion above. After "generic" treatment like chemo, therapies targeting more specific defects like EGFR over-expression, or mutations in genes such as RAS or RAF are feasible options, depending on your case. Companies like Foundation One are doing wonderful job in genome profiling. They also look at micro-sattelite stability and tumor mutation burden, which is useful in determining likelihood of an effective immonotherapy as well.
    Wish you the best.
  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #9
    NewHere said:

    Could Be The Chemo Worked

     If each round knocked it out for 7 years and 4 years, it sounds like it worked.  The same cocktail(s) may still work for you.

     Some things to also look at is genetic mutations (DNA testing) which your docs may have done in order to try combinations and/or new studies or treatments.  A lot of things are done as a matter of course pretty much across the board (i.e., FOLFOX is usually the first line of treatment in chemo), but a second opinion never hurts if you have concerns.  

    Try to stay positive.  I am Stage IVB myself.  The Oxiplatin caused me issues about two-thirds in my treatment, but if I had to go through 6 months of chemo (without the Ox) every four to seven years and be NED for a good chunk of time, I probably would sign up for it at this point.  (With the preference of never having this come back of course Laughing  )

    Half Empty

    NewHere, I hadn't thought of it that way.  Sorry, I guess I was being a glass is half-empty person.  My doc did say that if this appeared to be the same cancer as before he recommended FOLFOX but we haven't discussed the regiment or length yet.  All that should come after the path report comes back and I see doc next Monday.

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #10
    MyJourneywithCancer said:

    Hello Storm
    I will second NewHere's opinion above. After "generic" treatment like chemo, therapies targeting more specific defects like EGFR over-expression, or mutations in genes such as RAS or RAF are feasible options, depending on your case. Companies like Foundation One are doing wonderful job in genome profiling. They also look at micro-sattelite stability and tumor mutation burden, which is useful in determining likelihood of an effective immonotherapy as well.
    Wish you the best.

    Thanks

    I may ask the doc when we talk next week about some genetic testing.  I want to say that they may have done some of that years ago on me but my memory stinks so it won't hurt to ask.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #11
    It's unfortunate that chemo

    It's unfortunate that chemo will knock out the majority or possibly all of cancer cells but all it takes is one to start up again. So I'd have to agree that it likely did work for you. Whatever you decide I hope it works for you and buys you a lot more time.

    Jan

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #12
    I'm 3 times in 9 1/2 years

    I'm 3 times in 9 1/2 years and my onc's attitude was, the Folfox didn't stop it, so no point in repeating it, and risking permenent neuropathy[ I had about a year and a half's worth of tingly numbness], so there is that pov by some cancer docs, however they were able to cut out the mets both times, so that option may sway his thoughts on repeat chemo. Best of luck...................................Dave

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #13
    Confirmed Again

    Well, yesterday yielded what I has assumed it would.  My colon cancer has returned in a lymph node near my left lung.  It is inoperable.  They are planning to begin a new FOLFOX plan every two weeks for 6 treatments in addition to some type of targeting chemo.  The type would depend on the results of some genetic testing they are now doing on the tissue sample.  My oncologist said some new data shows that 6 treatments are almost as good as 12 and doesn't pose as much long-term side effects.  I may also qualify for immunotherapy or clinical trials depending on the genetic testing but the positive news is that my cancer is relatively small, slow-growing, and non agressive.  If we do the maintenance chemo it would likely continue for the duration of my life or at least until my insurance decides to stop paying for it.  The onc did verify that I am now Stage 4b and not likely to ever get rid of this crap.  So for now, I am staying positive and getting things ready to begin the chemo again (CANCER SUX!). - Brett

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #14
    Phoenix_66 said:

    Confirmed Again

    Well, yesterday yielded what I has assumed it would.  My colon cancer has returned in a lymph node near my left lung.  It is inoperable.  They are planning to begin a new FOLFOX plan every two weeks for 6 treatments in addition to some type of targeting chemo.  The type would depend on the results of some genetic testing they are now doing on the tissue sample.  My oncologist said some new data shows that 6 treatments are almost as good as 12 and doesn't pose as much long-term side effects.  I may also qualify for immunotherapy or clinical trials depending on the genetic testing but the positive news is that my cancer is relatively small, slow-growing, and non agressive.  If we do the maintenance chemo it would likely continue for the duration of my life or at least until my insurance decides to stop paying for it.  The onc did verify that I am now Stage 4b and not likely to ever get rid of this crap.  So for now, I am staying positive and getting things ready to begin the chemo again (CANCER SUX!). - Brett

    I'm so sorry. I'm glad it's

    I'm so sorry. I'm glad it's not aggressive so you have some time to get on the right program but what a let down. I was also told that I'll probably never get rid of mine but they'll just be able to keep it under control for a long time. Stupid s**t cancer.  

    Hugs,

    Jan

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    edited June 2017 #15
    Best of luck
    I am sorry to hear about the new progression, but also glad that it is diagnosed, and you have multiple options and that you are being so positive.
    If your genomic profile shows a mismatch repair deficiency or high tumor burden, PD-1 and CTLA-4 blockade combo may be an attractive first option, followed by a direct targeting of any actionable mutation they find.
    You are in my thoughts.
  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #16
    MyJourneywithCancer said:

    Best of luck
    I am sorry to hear about the new progression, but also glad that it is diagnosed, and you have multiple options and that you are being so positive.
    If your genomic profile shows a mismatch repair deficiency or high tumor burden, PD-1 and CTLA-4 blockade combo may be an attractive first option, followed by a direct targeting of any actionable mutation they find.
    You are in my thoughts.

    Can you explain what PD-1 and

    Can you explain what PD-1 and CTLA-4 is?  I have never heard those terms before.

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #17
    Immunotherapy

     

     

    PD-1 and CTLA-4 blockade with antibodies are the most common T-cell mediated immunotherapies, recently the former being very much in the limelight in terms of its better efficacy and longevity - better than conventional therapies - independent of the affected organ/tissue type. These two pathways act as breaks, so normally our immune system does not attack “self”. Blocking these is kind of taking the break off, so that immune cells can recognize and destroy the cancer cells more aggressively. Though many clinical trials are underway to fine-tune the details of treatment plans, they work best together (if adverse effects are tolerable), or even in combination with other therapies. Though not a prerequisite, a deficiency in the mismatch repair or a high tumor mutation burden (reported in genomic profile) is usually indicative of favorable response to such therapy.

     

    Hope this helps.

     

     

     

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