New Member and a Question

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  • plsletitrain
    plsletitrain Member Posts: 252 Member
    Hello Lily Flower

    Welcome and I'm sorry to read you lost loved ones because of colon cancer.  I don't have much input but I agree with everyone who says you should ask your doctors (and also research on your own) and weigh all the pros and cons.  I have an ileostomy and I don't plan on having it reversed.  I was not given a choice though so by default, I had to have the ileostomy.  Good luck on whatever decision you make.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    edited July 2017 #23
    first aid

    We did several things for my wife, who had an obstructing sigmoid colon cancer and turned out to be metastatic with a number of mets, after some initial confusions.   She has greatly exceeeded all expectations by years, especially for her biomarkers and  (bad) real estate.

    First we mostly followed several Life Extension Foundation cancer articles on surgery, supplements, cimetidine and eventually celecoxib.  Even (much) higher on vitamin C and vitamin D3. Especially cimetidine before and after surgery - even during surgery for the second surgery, prescribed by the second surgeon.  Basically "standard medicine" is 20 years behind on these things.

    Some of the LEF articles recommended extra blood markers and panels beyond CEA, we have found CA19-9 and CEA before and ca a week after surgery especially important. We also monitor CA19-9 and LDH continually with ESR and/or hsCRP and others to track and treat her cancer better. Serum CA19-9 correlates a lot with BRAF and KRAS mutant CRC cells.  Some cancer clinics use extra markers to more thoroughly assess their patients and are discussed in the medical literature. 

    --------

    An initial total colostomy is uncommon, it sounds drastic. If the testing for Lynch Syndrome is positive, which implies MSI-high, a new recommendation may be one of the new anti-PD1 drugs.  Keytruda, aka pembrolizumab,  is now FDA approved for all  MSI-high cancers, making it elgible for insurance coverage too.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member

    Hi Kim. Oh my goodness...15

    Hi Kim. Oh my goodness...15 times a day? I'm so sorry to hear. Yes I'm doing a lot of research and also asking everyone here as well. It's a decision I have to make and live by it. My best wishes to you! 

    I'm Blessed that I'm here

    I'm not complaining by all means, it might be a lot of bathroom issues but I'm still here since 2008.  This is my new normal.  I'm glad that you are doing your homework.  Good luck and I'll continue to give you advice and follow your story.

    Kim

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited July 2017 #25
    Colectomy

    I think if you read through some of the symptoms people have after removing a large section of the colon, you will think that keeping as much of it as possible is a good idea.  Initially I was supposed to have 50% removed, but they only needed to take out 25% which allowed me to retain normal bowel function, which I consider very fortunate.  Doing annual colonoscopies would be a small price to pay for keeping a large part of your digestive tract.  Doctors say that the colon serves no real function than removing moisture from the waste products, but I think they are wrong.  Every part of the body has an important fuction and in my opinion you should keep as much of your body intact as you can.  I echo the earlier comments that you should request a second opinion and try to get the best qualified surgeon you can find.  Best of luck.

  • Lily Flower
    Lily Flower Member Posts: 260 Member

    I'm Blessed that I'm here

    I'm not complaining by all means, it might be a lot of bathroom issues but I'm still here since 2008.  This is my new normal.  I'm glad that you are doing your homework.  Good luck and I'll continue to give you advice and follow your story.

    Kim

    Thank you so much Kim! :)

    Thank you so much Kim! :)

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    Trubrit said:

    Family history

    I am truly sorry for you losses, but lets put a stop to that, right now.

    YOU WILL BEAT THIS!

    We have come a long way over the years, and know more about using not only medication, but our own natural abitilites, to beat this disease. 

    Tru

    Thank you so much Tru! 

    Thank you so much Tru! 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    Thank you everyone for your

    Thank you everyone for your feedback. Very much appreciated!

    I had a CT scan for my chest area yesterday and my surgeon called me today said he got the result. My lungs are clear. However they detected 3 very small lesions on my liver, which the CT scan for my abdominal I did 2 weeks ago had stated the same. They're pretty sure the lesions are hemangioma which are benign. But my doctor still scheduled me for a MRI for next Monday just to rule it out completely. I also received some good news... I did a genetic test last Thursday for the Lynch Syndrome and the result came back negative. Yay! So he said the surgery that I'll be having will be the partial colectomy.  i gotta say, what a great news to receive on this day being that it's also my birthday. :)

  • darcher
    darcher Member Posts: 304 Member
    edited July 2017 #29
    That's a great present

    That's a great present considering our circumstances.  Happy Birthday and congrats. 

    Enjoy life and live !

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    Congrats on your good news

    Congrats on your good news and a big Happy Birthday also!

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    Happy Birthday!

    image  And congrats for all of the good news. 

    Tru

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    darcher said:

    That's a great present

    That's a great present considering our circumstances.  Happy Birthday and congrats. 

    Enjoy life and live !

    Indeed it is darcher. Thank

    Indeed it is darcher. Thank you so much!

  • Lily Flower
    Lily Flower Member Posts: 260 Member

    Congrats on your good news

    Congrats on your good news and a big Happy Birthday also!

    Thank you so much Sandy!

    Thank you so much Sandy!

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    Thank you so much Tru! 

    Thank you so much Tru!