Stage IV incurable Colon cancer.

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  • Kevin1224
    Kevin1224 Member Posts: 34
    #42
    annie4145 said:

    Kevin, Please let us know how

    Kevin, Please let us know how it turns out... Also, if my cancer spreads any further, I will be looking at the clinical trials.  They seem to be having a good result, but sometimes they have certain criteria that have to be met before you can get into them. I wouldn't want to wait too long in case I no longer meet the entrance criteria, but it all depends on the trial, and there is a certain unknown risk about participating in a clinical trial over a known treatment.  is the surgeon that you are working with from a good facility?

    Good Luck to your family!!!!

     

    Barbara

    Hello Barbara

    my wife did the biopsy two and a half weeks ago.  She experienced pain for the first week around the abdoman area, we meet with the doctor last week and he said she is healing just fine. He said he cleaned out the entire left side of her liver, but while inside he noticed she had more tumors on the right side then what the last cat showed.  He was not to worried about it though.  He plan is to have another CT done in a week and by that time the results of the biopsy should be in.  His plan is if the left side did not grow back meaning the tumor then he wants to infuse the liver directly with chemo for about 3 to 6 months and then do surgery.  If it grew back he will do surgery first then chemo after that.  The doctors name is Dimitri Alden and he works out of Lenox Hill which is an affiliate of Northwell.

     

     

    Kevin

  • linda7408
    linda7408 Member Posts: 21
    #43
    PADAVE1 said:

    Treatment timeline question

    Jan - My situation sounds very much like yours - mets in lung and liver - my recent treatment was FOLFIRI + Avastin - worked pretty well.  Question - i'm currently getting a 3-month "break" from treatment - will regroup in the Fall.  I'm curious how often you would get "breaks"and how you / they rotated treatment [or are you consistantly on the same thing].  TY - Dave

    PADAVE1

    Hi Dave.  I had rectal cancer with mets now scattered throughout both lungs. Sigh   I am on the Folfiri and Avastin right now.  My oncologist told me that I will be getting 3 month breaks as well as long as the tumors have shrunk down.

  • Mystimom
    Mystimom Member Posts: 10
    edited August 2018 #44
    myAZmountain said:

    I am Stage 4 with mets in

    I am Stage 4 with mets in both lungs--they think.  Had large mass in cecum that spread into appendix that ruptured--that is how the cancer was discovered. They did surgery first, my CEA was 25.--NO lymph nodes were positive (23 taken) Had a tumor on the omentum that they removed, margins clean in all areas. Original CT scan had shown areas on lungs and ileum , the PET scan had two  small (1cm) tumors in Right lower lobe. CEA down to 1.7!  I was on cloudnine thinking they could resect the liver and I would possible be curable. Ghe I had a high resolution Lung CT and the radiologist thought there were some small tumore in both lungs .5 cm so now am on FOLFOX.  Two treatments so far and the second one kicked my ****--so tired and that awful neuropathh, and terrible terrible mouth sores on palate and lips..  Has anyone on 5FU had their actinic keratosis on their skin flare up? A bunch of places I had burned off seem to have reappeared and are red and scaly. I know topical 5FU wil slough off precancerous cells but am wondering if it is working from the inside out lol.  Also Jan did you have a high resolution CT on your lungs? 

    same thing happened to me

    hello.... when i saw how your cancer was discovered I had to reach out.... 

    same thing happened to me, with a large cecal mass infiltrating my appendix and bursting through the tip. I was initailly diagnosed as having appendiceal primary cancer, but was adjusted to colon primary after surgery.

    I am Stge 4...currently on a hard-hitting regime of Folfoxiri w/ Avastin, and the 48 hour 5-Fu pump. I am surprised that so few colon cancer pateints are doing the 3-drug Folfoxiri? This is strong but I want as much cnance as I can get to cover all bases.

    How are you doing ..?

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    #45
    Mystimom said:

    same thing happened to me

    hello.... when i saw how your cancer was discovered I had to reach out.... 

    same thing happened to me, with a large cecal mass infiltrating my appendix and bursting through the tip. I was initailly diagnosed as having appendiceal primary cancer, but was adjusted to colon primary after surgery.

    I am Stge 4...currently on a hard-hitting regime of Folfoxiri w/ Avastin, and the 48 hour 5-Fu pump. I am surprised that so few colon cancer pateints are doing the 3-drug Folfoxiri? This is strong but I want as much cnance as I can get to cover all bases.

    How are you doing ..?

    Hello Mystimom!

    So glad your primary wasn't appendix- I think that is a nasty one!. I am on FolFox/avastin and the 5Fu pump, have completed 6 rounds and am getting  a bit of break to get rescanned. Really don't have confidence in my Oncologist/treatment center, I live in rural Arizona and am rethinking everything--had infected ort oafter one month and I feel like I am now "the problem patient" and get very little feedback from ONC. Plus I have yet to see any of the nurses wash their hands whitch freaks me out. AM readin a book "Radical Remissions" and dang it makes you reassess everything! Hoe you are doing well-assuming you have mets somewhere? Did they do a hemicoletomy for the ceum/apendix tumor? Another axe I grind with my doctor is his complete dismissal of B12 --Surgeon removed the ileo-cecal valve and part of the lower ileum which is where  B12 primarily absorbed. He poo poos it. I take b12 supplements anyways.

  • abrub
    abrub Member Posts: 2,174 Member
    #46
    Mystimom said:

    same thing happened to me

    hello.... when i saw how your cancer was discovered I had to reach out.... 

    same thing happened to me, with a large cecal mass infiltrating my appendix and bursting through the tip. I was initailly diagnosed as having appendiceal primary cancer, but was adjusted to colon primary after surgery.

    I am Stge 4...currently on a hard-hitting regime of Folfoxiri w/ Avastin, and the 48 hour 5-Fu pump. I am surprised that so few colon cancer pateints are doing the 3-drug Folfoxiri? This is strong but I want as much cnance as I can get to cover all bases.

    How are you doing ..?

    My primary was my appendix

    And if there is any question, you need to be seen by an appendix cancer specialist, not just a colorectal specialist who will treat it as a variant of colon cancer.  Btw, I was dx'd Stage 4 in 2007.  I'm doing quite well.

  • Mystimom
    Mystimom Member Posts: 10
    edited August 2018 #47
    myAZmountain said:

    Hello Mystimom!

    So glad your primary wasn't appendix- I think that is a nasty one!. I am on FolFox/avastin and the 5Fu pump, have completed 6 rounds and am getting  a bit of break to get rescanned. Really don't have confidence in my Oncologist/treatment center, I live in rural Arizona and am rethinking everything--had infected ort oafter one month and I feel like I am now "the problem patient" and get very little feedback from ONC. Plus I have yet to see any of the nurses wash their hands whitch freaks me out. AM readin a book "Radical Remissions" and dang it makes you reassess everything! Hoe you are doing well-assuming you have mets somewhere? Did they do a hemicoletomy for the ceum/apendix tumor? Another axe I grind with my doctor is his complete dismissal of B12 --Surgeon removed the ileo-cecal valve and part of the lower ileum which is where  B12 primarily absorbed. He poo poos it. I take b12 supplements anyways.

    Thanks for responding, myAZmountain...

    yes, I heard, too, about appendiceal cancer being a whole other situation. I was believing I had it for weeks, in addition to probably needing HIPEC surgery. As it turned out, I have liver mets and now ovary mets, so HIPEC is out the window thankfully. I just couldn't imagine finding the courage to undergo the Shake and Bake!

    So I am doing the same chemo as you, with the added 3rd drug, irinotecan. My onc has ordered 12 rounds for me... how fun.....I have completed 4 rounds so far. I initially had a hemi-colectomy and liver resection in May. Then since I had to wait to start chemo, a new liver met and both ovary mets developed in the meantime. My next scan is this coming Monday. I feel pretty normal during my infusions... just after the pump comes off I get depressed and in general icky feeling. I think the Neulasta shot they give me at pump disconnect makes me ill, so I am asking about the necessity of that at my appointment next tuesday. There is no way I could work outside of the house during this treatment..

    i am so sorry you have doubts about your care team! I feel for you. Do you have a port? The nurses definitely have to not only wash their hands and wear gloves, but also wear a face mask when accessing your port, if so. I didn't know about the B-12 issue...very interesting. It sounds as though you're doing the right chemo cocktail, however, have you asked about Irinotecan? My onc is senior colon cancer specialist at Yale in New Haven CT...she has told me that adding this drug has been demonstarting superior outcomes.

     

  • Mystimom
    Mystimom Member Posts: 10
    edited August 2018 #48
    abrub said:

    My primary was my appendix

    And if there is any question, you need to be seen by an appendix cancer specialist, not just a colorectal specialist who will treat it as a variant of colon cancer.  Btw, I was dx'd Stage 4 in 2007.  I'm doing quite well.

    great news

    I'm so happy that you are doing well...you are a strong person for sure. At this point, my doctors are sure it was colon primary...it was just so confusing at first because my appendix burst and the tumor got messy...floated in a free-for-all inside me...ugh. May I ask what your treatment consisted of, and how are you maintaining?

  • Mystimom
    Mystimom Member Posts: 10
    edited August 2018 #49
    Otto605 said:

    Stage IV with liver, lung mets

    Kevin,

    This will probably provide no new info, but I was diagnosed with stage4 in November 2016 and immediately went on the standard of treatment care (5FU, Avastin, Oxaliplatin).  I withstood Oxy through ten cycles before the neuropathy caused my Oncologist (Stein at Smilow Cancer Hospital (Yale)) to take me off the Oxy.  I just completed my 40th cycle.  I go every other week.  I’ve only taken time off because I had travel plans.  Dr Stein said I could stop treatment altogether and ‘see how it goes,’ or continue; I’m tolerating it well, I’m going to continue!  I, too, am not a candidate for liver resection, so I keep on the5FU and Avastin and tgectumors keep shrinking.  I think I am one lucky man.

    My advice to you and your wife: keep a positive attitude.  I truly think my attitude has helped me thus far.  I know it has helped my family deal with this.

     

    please let me know if I can help you at all.

     

    Regards,

    Paul

    Im at Yale, too.

    hi...I noticed you go to Yale also. It's good to hear you are doing well! Has your onc ever discussed Irinotecan with you? Im cc Stage 4 with liver mets. I am doing Folfoxiri, Avastin and the pump for 48 hours. I feel fine until the pump comes off...then so depressed I keep getting in bed and watching movies....

  • Mystimom
    Mystimom Member Posts: 10
    #50
    abita said:

    I am currently being treated

    I am currently being treated for stage 4 colon cancer. I was in folfox for a while then had a reaction and switched to folfiri. Oxaliplatin is one of the folfox drugs. It causes cold issues so for about the first week of cycle, can't have cold foods or beverages. I haven't had food issues around not eating. In fact, for me, the drugs have me starving all the time and I have gained 25 pounds. I do have to eat smaller meals. I get a bit of indigestion. My gall bladder was removed with my liver resection, so too much bad fats at one time doesn't work for me. You didn't ask about cold, but it hurts. You literally need gloves to get something out of fridge. The fatigue for me is bad the first week, gets better towards the end. Although, each round has made me have worse fatigue. My hospital has a nutritionist who talked with me during my first infusion. Apparently, protein is very important. You should speak to one if it is available. She gave me a handout that had the various scenarios that can affect appetite and the best way to handle each.

    same cold issues

    the cold sensitivity is very upsetting sometime isnt it! Sometimes i forget and take a sip of something cold and reality comes crashing in. The fatigue is so upsetting too...

  • Mystimom
    Mystimom Member Posts: 10
    edited August 2018 #51
    update?

    Hi Kevin.... i am in a similar situation as your wife. I am on my fourth cycle of oxaliplatin, irinotecan, 5FU, avastin and leucovorin. 9this is folfoxiri w/ avastin.)

    I am stage 4 with liver and ovary mets. my onc wants to be aggressive w me- hence the heavy regime. How is your wife doing with the irinotecan?

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