Jason's new chemo & my many questions.....

gizzyluv
gizzyluv Member Posts: 143
in Colorectal Cancer #1

Jason started on the new course of chemo today, basically taking the Oxaliplatin away & adding Irinotecan. I'm so confused though, his CEA has gone from 75.9 in the beginning down to 8.9, now it's down to 3.52.....great news, huh? But then the dr. says his liver is much worse? The primary tumor on his colon & the surrounding areas is half the size it was to start with, & the ONE liver met I've talked about indeed was only one....the chemo wiped THAT one out, the 4 he has now are NEW ones that apparently grew while he has been on chemo since March. THAT I don't understand. I know that all tumors are different & what works for one person won't work for the other, etc. but what I'm confused about is if the liver is much worse (the doctors words....in his medical records) then how can his CEA be so much better? According to his doctors notes, he is going to be checking for KRAS mutations in the primary tumor & he also says "we would certainly contemplate testing for BRAF and similar mutations or evaluation at Vanderbilt to see if he may be eligible for a trial. Zaltrap would also remain a possibility."......(I suppose I should explain that his doctor wasn't in the office today for me to ask questions to, so I just have his office records to go by, so I'm hoping someone can tell me what all this means?....) We know that because of the location of the liver mets surgery is not an option, & neither is RFA. Sounds to me like there isn't much hope period, but I would never say that to Jason. I hope someone has had similar experiences & can give me some good news?.....Thanks in advance! ((((HUGS)))) to you all!

Comments

  • tachilders
    tachilders Member Posts: 313
    #2
    Ask about TACE (trans

    Ask about TACE (trans arterial chemoembolization) for the liver mets.  This is where they deliver the chemo directly into the liver arteries and they can use different drugs like mitomicin c and/or irinotecan right into the liver. They can also use a much higher dose this way without the side effects of systemic chemo. Don't give up hope as you guys have a long way to go before you are completely out of options. Get second or even third opinions if needed. They already should have tested him for KRAS and BRAF if they took a biopsy at any point but they may need to test the liver mets as they might be different than the primary tumor (fairly rare but it happens).  Keep the faith!!!

  • renw
    renw Member Posts: 282 Member
    #3
    The problem with cancer cells

    The problem with cancer cells is that they are very good adapting. The new mets in the liver most likely mutated and have developed resistance to the current chemo. In many cases oxaliplation becomes innefective within 6 months, but it can happen quicker, or take longer. What happens is that the cell overexpress extra repair genes.  Once that happens, the DNA segments that are damaged by Oxaliplatin are simply excised. Once the cancer cells learn to repair the DNA in this way, you need to switch to something else. Irinotecan is different to oxaliplatin as it does not damage the DNA, but interferes with cell replication. BTW The same repair mechanism can be used to repair radiation induced dna damage, hence why radiation also has a limited use by date as resistance can develop.

    Irinotecan and other drugs such as 5fu need to be inside the cell during its division phase to be effective. Cancer cells eventually learn to deal with this as well. They can mutate again and over express the MDR1 gene. When this happens the cancer cells become very good at pumping out poisons such as 5fu, irinotecan etc. out of the cell before it can do damage. With MDR1 most chemo will not be effective. I know cause I have it.

    I believe that one should use everything at ones disposal to hit the cancer early on, as over time the cancer will become harder and harder to treat. What does not kill you makes you stronger as the saying goes, is very appropriate in this context.

    TACE, RFA, Sirtex, immunotherapies all options to reduce the liver mets. Even if RFA can not be used on some mets due to location, it may be useable on others.

  • Dyanclark
    Dyanclark Member Posts: 296
    #4
    CEA

    Smile

    CEA numbers from what I think are more accurate for colon and lymph nodes in that area.  CEA is not a blood test for Lungs and liver.   George's CEA is only ..07, but we have to worry about his lungs now.  His pet scan still shows stable.   

    The problem is cancer gets in your DNA and that is the big battle.  

    We can call George's  onc. nurse for any questions or problems, for us this is so helpful.  If we need an answer about anything she calls back within 30 min, if she can't help she talks to Dr for us.   I have to say we call the nurse almost every week about something.  George is with comprehensive cancer center afiliated with UCLA.

    George had I think 6 rounds of Irinotecan it works very well, first 48 hours he was pretty nauseated.  Be sure Jason has lometil for diarrhea.   

    HUgs from George & Dyan

  • rogina2336
    rogina2336 Member Posts: 188
    #5
    i don't have any advice, just

    i don't have any advice, just sending hopes and prayers.  kim

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #6
    I'm sorry things are so complicated, Kris.

    That seems to be the way with cancer.  What works great for one person doesn't work very well (or in my case, at all) for another.  I hope that one of these targeted therapies that the others have mentioned will be possible options for Jason.  This must be so hard on you both, and my thoughts and hopes for better times in the future are with you.  Bih hugs~AA

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #7
    Only a theory....

    Cancer growing despite chemotherapy?

    The only plausible explanation is that perhaps 'now' Jason is no longer experiencing positive response to that particular chemo drug....the one that shrunk obviously responded....but the 4 new ones may have developed (or already been there but took time to surface) because his body desensitized itself to that chemo drug - thus resulting in growth.

    I can't think of anything else...

    Except....it might be possible for him to revisit the Oxy at a later date....my onc switches between the Tecan and Oxy to mix it up, so the body doesn't get used to one particular drug....over time, the cancer cells adapt and make the change and the chemo becomes ineffective. 

    This would be hard news for any of us....I've always felt that for what we have to go through, that we should all respond when we're paying such a heavy price....

    Further testing sounds like a good idea...that way they can tell if he would have the possibility of response, before having to take anything that would be hard on him and not offer the benefit of what you were both looking for.

    Irinotecan is a known tumor shrinker....so hopefully, there will be good response from me.  I took it and was hard on me to do, but felt that it certainly helped contribute to my last clear streak. 

    Keep us all posted and best of luck!

  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #8
    We are sending our thoughts

    We are sending our thoughts and prayers for Jason to find a cure.

     

    We searched for my cancer, and went on to the alternatives in conjunction with the Folfiri w?Avastin.  Juicing, Mistle Toe extract, adding Mushrooms to our diet, etc...  Spread our eggs in several baskets.  It worked for me. I have 90% tumor reduction. I still have several mets, and some may not be operable. (I will find out at the end of the month.)  

     

    My point is, Do not put all of your efforts in only ine therapy. There are many suplements and diet plans that seem to help reduce cancer.  Most of the suplements and diet plans do not affect Chemo, and do not hurt you. Why not add another layer of armor to Jason's body?

     

    Do not get discouraged. We all have the ups and downs. 6 weeks after my Oncologist telling me I was NED, I was told the cancer is back and you have little hope.  (Luckily I do not listen to people whom are negative.) I changed Oncologists, found a great surgical team, etc....  That was 7 months ago and I am fighting the good fight.  I am sitting here ripping music and making play lists for the hospital stay. lol  Read Beating Cancer with Nutrition   http://patrickquillin.com/nutritioncancer.html   It was less then $10 on eBay or Amazon.  A great read and has helped me a lot!

    Best Always, mike 

  • gizzyluv
    gizzyluv Member Posts: 143
    #9
    SO frustrated!

    As usual, I don't have time to answer each reply individually, but thank you to everyone for the advice. All I know in regards to Jason's liver mets is that due to their location, according to his last CT Scan one of the tumors "compresses & attenuates the lumen of the intrahepatic portion of the inferior vena cava".....THAT is why surgery isn't an option, & according to the dr. he isn't very optimistic that chemo will shrink the tumor enough for surgery to be feasable at a later time & also due to the location the "targeted" therapies aren't an option either. SO frustrating. I just want someone to say "oh! I had the same thing, but mine eventually became operable & now I'm fine".....doesn't hurt to hope, I guess.

  • renw
    renw Member Posts: 282 Member
    #10
    gizzyluv said:

    SO frustrated!

    As usual, I don't have time to answer each reply individually, but thank you to everyone for the advice. All I know in regards to Jason's liver mets is that due to their location, according to his last CT Scan one of the tumors "compresses & attenuates the lumen of the intrahepatic portion of the inferior vena cava".....THAT is why surgery isn't an option, & according to the dr. he isn't very optimistic that chemo will shrink the tumor enough for surgery to be feasable at a later time & also due to the location the "targeted" therapies aren't an option either. SO frustrating. I just want someone to say "oh! I had the same thing, but mine eventually became operable & now I'm fine".....doesn't hurt to hope, I guess.

    If it helps, my liver mets

    If it helps, my liver mets are not operable either, but I am quite happily getting TACE done on them.

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    #11
    Hard Place

    Sorry that you are in a hard place right now.  

    I see cancer treatment as a marathon.  Like any racer preparing for a marathon, there is a training routine before, with a strategy to be used as the race is run.  

    My Onc (the coach/trainer), and I, have developed the best possible strategy for me.

    For me the race is now on...we will make strategic changes as the race unfolds.  I remain positive of attitude and diligently continue the race.  

    I offer positive thoughts and Hugs of comfort as you run the cancer marathon.

    Art

  • coloCan
    coloCan Member Posts: 1,944 Member
    #12
    fatbob2010 said:

    Hard Place

    Sorry that you are in a hard place right now.  

    I see cancer treatment as a marathon.  Like any racer preparing for a marathon, there is a training routine before, with a strategy to be used as the race is run.  

    My Onc (the coach/trainer), and I, have developed the best possible strategy for me.

    For me the race is now on...we will make strategic changes as the race unfolds.  I remain positive of attitude and diligently continue the race.  

    I offer positive thoughts and Hugs of comfort as you run the cancer marathon.

    Art

    I'll repost this on possible alternatives

    http://effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=1354&pageaction=displayproduct

    scroll down to Table A for start of options described further

  • gizzyluv
    gizzyluv Member Posts: 143
    #13
    renw said:

    If it helps, my liver mets

    If it helps, my liver mets are not operable either, but I am quite happily getting TACE done on them.

    That's interesting.....

    I asked the dr. we went to see on Wednesday (Jason's second opinion) & he said that he isn't a candidate for TACE, but I will definitely be asking his regular oncologist during the next visit! Thanks for the info! If you don't mind me asking, why are they saying yours aren't operable now?

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