Rats, any advice?

Easyflip
Easyflip Member Posts: 588 Member
in Colorectal Cancer #1
I was diagnosed stage 3a in March of 2013. 2 feet of colon were removed and then I did folfox 6 for 6 months. I was declared NED 4 months ago but a pet scan this week showed a 1 cm spot on my liver. I'm talking to the surgeon in 3 days. The 3 months of remission were great. I traveled and got closer to family and friends and had a happier more grateful attitude towards life. Now I feel like the storm is happening all over again. What should I ask my surgeon? Should I retire? Is the chemo after surgery different and harder? Thanks ahead of time

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    Happened to me too

    I had one liver spot about eight months after finishing treatment.  My Oncologist talked about a Liver Resection, but my surgeon did a Liver Ablation and removed a 2.2cm tumour. I went home the same day and the recovery was fine. OK, it was a little painful for a while, but NOTHING compared to what it would have been with a  Liver Resection.

    I had my sugery in April, and my Oncologist has been doing blood work every month. I have had one post surgery CT scan and will have another one next month. 

    My first CT scan was clear, and my CEA has gone down from the pre-surgery 18.6 to 3.5.  

    I feel great, I look great (see my avatar taken just the other week) and I live each day to its fullest. 

    My Oncologist told me that if its just the one liver spot, and the surgery works, the odds are pretty good even though I am now Stage IV. 

    I intend to live until I am 89, although I will accept it if it is 84, but nothing lower. 

    Ask your Oncologist and surgeon about a Liver Ablation as well as a Resection. He may also suggest Y90 if the tumour doesn't look to big or aggresive. I know they take into consideration lots of things that I don't know about, so go to your appointment laden with questions. 

    Good luck! I will be thinking about you, and please keep us posted. 

    SUE/TRU

     

  • Easyflip
    Easyflip Member Posts: 588 Member
    #3
    Trubrit said:

    Happened to me too

    I had one liver spot about eight months after finishing treatment.  My Oncologist talked about a Liver Resection, but my surgeon did a Liver Ablation and removed a 2.2cm tumour. I went home the same day and the recovery was fine. OK, it was a little painful for a while, but NOTHING compared to what it would have been with a  Liver Resection.

    I had my sugery in April, and my Oncologist has been doing blood work every month. I have had one post surgery CT scan and will have another one next month. 

    My first CT scan was clear, and my CEA has gone down from the pre-surgery 18.6 to 3.5.  

    I feel great, I look great (see my avatar taken just the other week) and I live each day to its fullest. 

    My Oncologist told me that if its just the one liver spot, and the surgery works, the odds are pretty good even though I am now Stage IV. 

    I intend to live until I am 89, although I will accept it if it is 84, but nothing lower. 

    Ask your Oncologist and surgeon about a Liver Ablation as well as a Resection. He may also suggest Y90 if the tumour doesn't look to big or aggresive. I know they take into consideration lots of things that I don't know about, so go to your appointment laden with questions. 

    Good luck! I will be thinking about you, and please keep us posted. 

    SUE/TRU

     

    Thanks Trubrit
    That makes me feel better. There's nothing like hearing from someone who's been there. I've been asked to do a survivors walk today, I'll be thinking about everyone on this network. I see the surgeon Monday, fingers crossed, and hey, you do look great, why don't we both shoot for 90!
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #4
    I am sorry to hear about you

    I am sorry to hear about you recurrence. I always felt the news of a recurrence is harder then the initial diagnosis. I have always done surgeries on my liver when i could. I know ablation is a good and much less painful as Trubrit mentioned. Especially since your tumor is so small. My surgeon has alwaysbeen aggressive with surgery. Chemo was harder for me because they switched from FOLFOX to FOLFIRI. The Irinotecan in FOLFIRI was much harder on me than the Oxilplatin in FOLFOX but many experienced just the opposite. We all react differently.

     

  • Nana b
    Nana b Member Posts: 3,030 Member
    #5
    janderson1964 said:

    I am sorry to hear about you

    I am sorry to hear about you recurrence. I always felt the news of a recurrence is harder then the initial diagnosis. I have always done surgeries on my liver when i could. I know ablation is a good and much less painful as Trubrit mentioned. Especially since your tumor is so small. My surgeon has alwaysbeen aggressive with surgery. Chemo was harder for me because they switched from FOLFOX to FOLFIRI. The Irinotecan in FOLFIRI was much harder on me than the Oxilplatin in FOLFOX but many experienced just the opposite. We all react differently.

     

    I had a spot in my liver for

    I had a spot in my liver for a couple years after Folfox. It has grown now after trying three different chemos. Had I known about chemoemobilization I would have insisted that it be done back then instead if chemo running through my entire body forb two Years. 

     

     

    http://stanfordhospital.org/clinicsmedServices/medicalServices/interventionalRadiology/forms/1ChemoembolizationPrep.docx

     

  • Easyflip
    Easyflip Member Posts: 588 Member
    #6
    Nana b said:

    I had a spot in my liver for

    I had a spot in my liver for a couple years after Folfox. It has grown now after trying three different chemos. Had I known about chemoemobilization I would have insisted that it be done back then instead if chemo running through my entire body forb two Years. 

     

     

    http://stanfordhospital.org/clinicsmedServices/medicalServices/interventionalRadiology/forms/1ChemoembolizationPrep.docx

     

    Chemomobilization
    Thanks Nana. Is that the same as the hepatic pump? All the options are confusing. Im getting a second opinion at UCSF, I'm confident they will give me sound advice but if I'm given options I'll post again on the board. Our knowledge together is pretty impressive plus we have the unfortunate advantage of first hand experience.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #7
    I'm so sorry that you're facing more cancer

    but I would continue to be hopeful.  There's some special word for a single met like that (which of course I can't remember), but what I do recall is that a situation like this has a much more positive prognosis.  If you can have it surgically removed, you can still have hope for a cure.

    FWIW, I had four recurrences, and five surgeries, before reaching NED, where I've been for 2 1/2 years.  It sucks, without a doubt, but you can get through this and come out the other side in better health.

    Oh, and if you do have surgery, I would make use of Tagamet/cimetidine for a week before and after.  It's an OTC drug that may reduce the chance of further spread.  Kind of a can't hurt, might help sort of thing.

    Keep us posted and hang in there!

    ETA that I found the term:  

    Oligometastatic 

    If you are doing any research you might want to focus on this.  There are some trials and studies devoted specifically to this issue.

  • gfpiv
    gfpiv Member Posts: 59 Member
    #8
    I would have used a different 4-letter word than 'rats'...

    Sorry you have to face this again, but at least it appears you caught the liver met pretty early.  (I'm assuming you're resectable already.)  fyi chemoembolization works on kinda the same idea as HAI...i.e. the fact that liver tumors are mostly nourished through the hepatic vein.  But chemoembolization is a one-time (and occasionally repeated) injection of concentrated chemo into the hepatic vein.  HAI / hepatic pump is actually a hockey-puck sized semi-permanent implant which delivers concentrated chemo to your liver over a 2-week on 2-week off period.  Frankly, either one 'may' be overkill in your current situation, given the potential risks, and assuming that you're resectable already.  In fact, who knows if insurance would even agree to pay for it in your case.  On the other hand, HAI after resection will reduce the odds of recurrence.  Good luck, you can beat this.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #9
    we do more, with less expense

    We are more aggressive on blood testing, including CEA and CA19-9, for longer term targeted cimetidine treatment at a higher dose (LEF prefers 1000-1600 mg) for her stage IV colon cancer. Also PSK (Corioilus versicolor extract), 12,000 iu vitamin D3 or more, among many of the Life Extension ingredients list, too.  When my wife was diagnosed, she did 4 weeks cimetidine before surgery and 6 weeks after surgery before chemo for the perioperative cimetidine tx with a lot of supplements. Her boosted immune response necrosed a lot cancerous tissues, observed by a very surprised surgeon. Then based on her CEA/CA19-9 blood tests before surgery, CIM became a permanent part of her immunochemo.  She's done pretty well in a particular situation where 99+% of patients die off in about 40 months without multiple surgeries and long term chemo with Avastin or 'tux/EGFR inhibitors.   

    You might tell us more about your surgeon/drs. Our surgeons have always initiated celebrex/celecoxib peri/postoperatively for several weeks, too.  Celecoxib is an inexpensive generic in asia. Since three years after diagnosis, she has used celecoxib most of the time.

    If you can get a curative surgery and a good follow up therapy, you may still have a great outcome.  Especially with the skillful execution on cimetidine and/or celecoxib with low dose chemo.  Like much of asia, UFT is also cheaply available in the Philippines, as Tefudex.  [Warning, none of these combinations are mCRC "standard treatments", yet. UFT is an approved CRC drug in many countries.]

    I would take this as a wake up call to read all the Life Extension articles on cancer in general, especially on cancer surgery and colorectal cancer.  LEF made our (first) day, and maybe her decade....

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    #10
    Easyflip

    So sorry for your reccurrance, but being a single met is definitely the best kind of reaccurrance.  I was diagnosed 2 years ago April and has a single liver met at the time of diagnosis.  I had 1 surgery in June 2012 for my rectal tumor and liver met.  My surgeon felt surgery on the liver met was the only way to become NED and after reading much literature I felt it was the best way for me.  Make sure you research all options yourself to be sure you are comfortable with decisions.  I have been NED now for 2 years 1 month.  I know it's hard now but you will make it through this.  Good luck with your appointment.

    Sandy

  • Nana b
    Nana b Member Posts: 3,030 Member
    #11
    Momof2plusteentwins said:

    Easyflip

    So sorry for your reccurrance, but being a single met is definitely the best kind of reaccurrance.  I was diagnosed 2 years ago April and has a single liver met at the time of diagnosis.  I had 1 surgery in June 2012 for my rectal tumor and liver met.  My surgeon felt surgery on the liver met was the only way to become NED and after reading much literature I felt it was the best way for me.  Make sure you research all options yourself to be sure you are comfortable with decisions.  I have been NED now for 2 years 1 month.  I know it's hard now but you will make it through this.  Good luck with your appointment.

    Sandy

    No it's different.   Check

    No it's different.   Check out chemoemobilization and cyberknife on YouTube. Enter Stanford, they have the best videos. 

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