Post-surgery and the shock of hearing the word "cure". And a philosophical question.

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Comments

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    I did talk with my surgeon...
    and he had never heard of it, but thought it sounded interesting and worth a try. I wasn't able to get the post-surgical IV that was used in the study, however; my doc checked on that and said it's not made anymore. So I choked down the pills three times a day. I did later learn that there is a liquid version that might be better, especially if a patient had a resection done (my surgery didn't involve the intestines this time, so I was able to eat and swallow pills a lot sooner than in previous surgeries). Do you have surgery coming up?

    No, I am taking cimetidine
    No, I am taking cimetidine though to prevent spread of mets. I had my surgery last December....3 days before x-mas, colon and hysterectomy, 2 surgeons. But, I'm on a chemo. break right now...the day he ran the chemo. break suggestion to me I brought up to my onc. about the cimetidine, he'd never heard of it, but while sitting there with him he looked it up on his computer then gave me the prescription for it (in Canada you need a prescription for it). I had scans over a week ago...don't know the results yet...I see him next week...yikes!!!
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Hope & Cure
    It's always great to hear those words. I'm still working on the cure and believe that having hope helps.
    Feeling hopeless can really put oneself into the victim category which I've never seen as being helpful in the least.
    -phil
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    smokeyjoe said:

    No, I am taking cimetidine
    No, I am taking cimetidine though to prevent spread of mets. I had my surgery last December....3 days before x-mas, colon and hysterectomy, 2 surgeons. But, I'm on a chemo. break right now...the day he ran the chemo. break suggestion to me I brought up to my onc. about the cimetidine, he'd never heard of it, but while sitting there with him he looked it up on his computer then gave me the prescription for it (in Canada you need a prescription for it). I had scans over a week ago...don't know the results yet...I see him next week...yikes!!!

    I'll be thinking of you next week,
    and hoping for the very best possible outcome. And there's that word "hope" again, I guess we all need it! Especially when waiting for scan results, which is the most nerve-wracking part of the whole process to me. Hugs to you!
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    PhillieG said:

    Hope & Cure
    It's always great to hear those words. I'm still working on the cure and believe that having hope helps.
    Feeling hopeless can really put oneself into the victim category which I've never seen as being helpful in the least.
    -phil

    True...
    viewing ourselves as "victims" definitely puts cancer in the driver's seat. I don't even much like referring to myself as a cancer patient, as somehow that suggests the cancer is an integral part of who I am, like "mom" or "librarian" or "crazed liberal"...I don't want to let it become a defining characteristic!
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    I say yay for you and cheers
    I say yay for you and cheers to hope. Love those words. Hold on to them everyday!

    plh4gail
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member

    I'll be thinking of you next week,
    and hoping for the very best possible outcome. And there's that word "hope" again, I guess we all need it! Especially when waiting for scan results, which is the most nerve-wracking part of the whole process to me. Hugs to you!

    CIM experience
    My wife has taken cimetidine from about the first 24 hrs of diagnosis. Mostly 1200-1600 mg/day, with digestive support like betaine hydrochloride + pepsin, pancreatin and glutamine. Also she's using supplements as chemo adjuncts, where her 5FU chemo by itself couldn't kill tumor cells efficiently, the combo could. She was at CA19-9 positive before both surgeries. A hard lower threshold for long term cimetidine based on blood serum CA19-9 is not optimal by a longshot, it creates a common false negative for people who really could benefit greatly. More tumor tissue histological tests like both CA19-9 and CSLEX stains appear to be definitive. See Matsumoto (2002) for starters. About 70% of stage III are positive for both stains, and probably ~3/4+ of stage IV are.
  • KathiM
    KathiM Member Posts: 8,028 Member
    tommycat said:

    :)
    My eyes welled up as I read this.....my God. What a time you are having!!!
    As far as "hope"....this quote came immediately to mind.
    "There's a surefire way to tell if your purpose here is over. If you're alive, it isn't."
    Or something along those lines.
    This Board is full of amazing stories. Why not think of yourself as one of them? :)
    Big Hugs!!!!!

    I LOVE that quote~~~~~
    Obviously, 7 years later....I still have something on my 'to do' list....*smile*

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    I am supposed to be gone by now...
    6 1/2 years ago, to be exact...

    At 6 years ago, I started treatment on my second cancer...breast...

    NED, at least so far...sigh...wish the Insurance companies would look at that...I'm 'red lined' from 2 primary site cancers...

    I had a conversation with a guy trying to sell me a couch one time. After listening to me (I said 'I am finally thinking I'm staying for awhile, I'm starting to make big purchases again'), he told of his dad. He had made it thru childhood leukemia, after a very dismal prognosis. 40 years later, he lay at the end of his life, nothing more to be done. He said to his son "You know, 40 years ago, I was dead by statistics. I have looked at every day for the last 40 years as a gift. Please don't mourn my passing now."....

    That was 5 years ago, and I still carry the story with me...

    Hugs, Kathi
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    KathiM said:

    I am supposed to be gone by now...
    6 1/2 years ago, to be exact...

    At 6 years ago, I started treatment on my second cancer...breast...

    NED, at least so far...sigh...wish the Insurance companies would look at that...I'm 'red lined' from 2 primary site cancers...

    I had a conversation with a guy trying to sell me a couch one time. After listening to me (I said 'I am finally thinking I'm staying for awhile, I'm starting to make big purchases again'), he told of his dad. He had made it thru childhood leukemia, after a very dismal prognosis. 40 years later, he lay at the end of his life, nothing more to be done. He said to his son "You know, 40 years ago, I was dead by statistics. I have looked at every day for the last 40 years as a gift. Please don't mourn my passing now."....

    That was 5 years ago, and I still carry the story with me...

    Hugs, Kathi

    That's a good story...
    And yours is a good one as well! I love to hear from folks who proved their doctor's prediction wrong. May you keep doing so for many, many years.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    tanstaafl said:

    CIM experience
    My wife has taken cimetidine from about the first 24 hrs of diagnosis. Mostly 1200-1600 mg/day, with digestive support like betaine hydrochloride + pepsin, pancreatin and glutamine. Also she's using supplements as chemo adjuncts, where her 5FU chemo by itself couldn't kill tumor cells efficiently, the combo could. She was at CA19-9 positive before both surgeries. A hard lower threshold for long term cimetidine based on blood serum CA19-9 is not optimal by a longshot, it creates a common false negative for people who really could benefit greatly. More tumor tissue histological tests like both CA19-9 and CSLEX stains appear to be definitive. See Matsumoto (2002) for starters. About 70% of stage III are positive for both stains, and probably ~3/4+ of stage IV are.

    Thanks...
    I'll check that out. I mentioned being tested for CA 19-9 to my doctor (CEA is not a marker that works for me) and he looked at me like it was the dumbest thing he'd ever heard of. "Not national standards", according to him.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member

    Thanks...
    I'll check that out. I mentioned being tested for CA 19-9 to my doctor (CEA is not a marker that works for me) and he looked at me like it was the dumbest thing he'd ever heard of. "Not national standards", according to him.

    yep
    Yes, typical reaction. He hasn't really been following the journals, "standards" hides a lot of important medicine. One often has to arrange things these through the labs directly or rare US doctors that know. Got to create a demand, and an expectation (e.g. people's same dumbstruck look back when the doctor doesn't know).

    We order serum CA19-9 ourselves for monitoring, after the initial setup. The maximum CA19-9 serum level was likely before surgery. However, it should still be the quickest piece of info to get with any doctor's order.

    It would be good to see if any commercial labs in the US, like Caris or the others can do the tissue stains (best data) and report (overexpressed or not, relative degree of overexpression).