Met with the surgeon

jen2012
jen2012 Member Posts: 1,607 Member
in Colorectal Cancer #1

We met with the surgeon yesterday and he recommended one more treatment tomorrow (this was actually my request, since my husband had a mini 3 week chemo break) and then surgery to remove the rectal tumor mid-late April.  The para-aortic nodes that orginally lit up in August pet scan were removed for biopsy and nothing else in that area has lit up since.....except he does have multiple bone lesions.   He's had 2 bone biopsies that have both been clear, but this continues to concern the docs.  I'm not sure what to make of it.    My husband is worried about the surgery and not thrilled with the idea of having a ileostomy or colostomy, but the surgeon said that his first priority is getting clear margins.  He said he'd rather have him live 30 yrs with a colostomy than have the cancer come back.  That was a little shocking to hear him say after the onc. mentioned that 2 yr time frame.  He also said that if it does come back in one area, such as a spot on the liver, there is still the possibility of cure.    That was good to hear, as it's the first time with heard anyone even mention cure as a possibility...but then he has to mention the concern of the bones again.

Overall, good appt and feeling very thankful that he can have the surgery.

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Comments

  • Goldie1
    Goldie1 Member Posts: 264 Member
    #2
    Just a quick word...

    about a colostomy or ileostomy.  My husband has had a colostomy for over a year now and I can't even begin to tell you how it has improved his quality of life.  And as his wife, I have no issue with it at all...he feels better, I feel better!

    Good thoughts for you both on the upcoming surgery!

    Ellen

  • maglets
    maglets Member Posts: 2,576 Member
    #3
    good good

    ahhh gotta love surgeons......that is good news. If it is any help at all I really believe surgery has saved my life when the predicitions were very dire.....cut cut cut it out so to speak.....i followed with lots of chemo but i think your hubby will be very glad if he hears that the surgeon got clean margins.

    Every glimmer of good news is something to hold onto......

    Good for you two .....so happy to read this post

    mags

  • dmj101
    dmj101 Member Posts: 527 Member
    #4
    I have had my colostomy for 2

    I have had my colostomy for 2 years next month.. while it took a few months to get used to and I learn more about it all the time.. I really think it probaby saved my life..

    I have met people that have had colostomy's for 20+ yrs at a support group and was in shock, while I was never as sick as others I completely understand the aprehensions toward it.. but I can truly say... it really isn't the end of the world and if fact I think it is easier to deal with than the alternatives of not having it..

    Good Luck and if you need any questions answered about it let me know.. Donna

  • coloCan
    coloCan Member Posts: 1,944 Member
    #5
    dmj101 said:

    I have had my colostomy for 2

    I have had my colostomy for 2 years next month.. while it took a few months to get used to and I learn more about it all the time.. I really think it probaby saved my life..

    I have met people that have had colostomy's for 20+ yrs at a support group and was in shock, while I was never as sick as others I completely understand the aprehensions toward it.. but I can truly say... it really isn't the end of the world and if fact I think it is easier to deal with than the alternatives of not having it..

    Good Luck and if you need any questions answered about it let me know.. Donna

    If your husband needs an ostomy,

    supposedly chewing gum and/or drinking coffee after the surgery gets the digestive juices,etc flowing quicker tho i've read of this only after my own so can;t confirm empirically......

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #6
    That does sound like a very
    That does sound like a very positive appointment. Generally speaking, surgeons don't seem to throw around the c word lightly. Sounds hopeful. I'm sure this is a stressful time for your husband. Steve was very much against the idea of an ileostomy. He adapted well. We have a lot of regrets in that department. Had he got rid of colon earlier (due to his ulcerative colitis) we would have avoided this whole stage four cancer mess. Made the mistake of trusting his Gastroenterologist. Costly error. Surgeons seem to also really prepare the patient for the bag. It seems like often times, it can be avoided. Hopefully that will be the case for you guys.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #7
    CIM

    Is he able to use cimetidine around surgery (the p-nodes then, and now)?  Our surgeon volunteered to do 800 mg / 4-6 hours orally for presurgery build up, since injectable was not immediately available.  It's important to get the surgeons buy-in because some of the experimental evidence suggests that other proton inhibitors (ranitidine etc) interfere with the anti-cancer actions of cimetidine and cimetidine has been longer approved for surgery anyway.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #8
    tanstaafl said:

    CIM

    Is he able to use cimetidine around surgery (the p-nodes then, and now)?  Our surgeon volunteered to do 800 mg / 4-6 hours orally for presurgery build up, since injectable was not immediately available.  It's important to get the surgeons buy-in because some of the experimental evidence suggests that other proton inhibitors (ranitidine etc) interfere with the anti-cancer actions of cimetidine and cimetidine has been longer approved for surgery anyway.

    I used cimetidine,

    for my last surgery.  I don't know if that has helped me reach the remission I've been in for over a year now or not, but it's certainly worth a try.  I think having surgery is almost always a good thing...I know in my case it's the only reason I'm still here, as chemo never worked for me.  I'm happy that your husband gets to have it!  AA

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #9
    Thanks everyone!
    I did ask
    Thanks everyone!
    I did ask the surgeon about the cimetidine....he said no truth to it. Kind of annoying that he just dismissed it. I had already emailed the onc about it and she is checking with the pharmacist to make sure its not a problem with any of his other meds.
  • renw
    renw Member Posts: 282 Member
    #10
    Officially surgery is
    Officially surgery is considered the only curative option for CRC.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #11
    jen2012 said:

    Thanks everyone!
    I did ask
    Thanks everyone!
    I did ask the surgeon about the cimetidine....he said no truth to it. Kind of annoying that he just dismissed it. I had already emailed the onc about it and she is checking with the pharmacist to make sure its not a problem with any of his other meds.

    hmmm

    That's too bad.  So many haven't read and understood what evidence there is for perioperative cimetidine.  Often a fatal error for histamine reactive, CA19-9 bearing patients,  if one accepts any of the published papers' actual survival curves.

    Now my wife had a number of immune enhancing and molecularly targetable items (a la LEF.org plus 15,000 iu extra D3 daily, and high dose K2) before her first surgery.  The first surgeon completely forgot about the cimetidine.   grrrr.   However she had had 1600 mg cimetidine for almost 4 weeks prior to surgery, and some ever after, more than exceeding the cimetidine papers' criteria for success (including nonzero serum CA19-9 for long term tx).   Her immune response was outstanding and melted the mesenteric/peritoneal stuff, shrank the primary, and perhaps helped liver mets (she has "cysts" that don't behave like cysts).  The first surgeon still can't believe it.  But at least half dozen others do, including the second set of surgeons from the leading research hospital that pulled out the conglomerated para aortic cluster of met nodes.  Also both sets of surgeons used Celebrex perioperatively, without my even asking.

    With specialized surgery, it may not always be feasible to replace a surgeon.  However I enlist other doctors for quiet support.  Even further, although I am not cavelier about it and do a tremendous amount of homework, after several fubars, I control the nurse, the IV and our own pharmaceutical supplies. I am no longer a deer frozen in the headlights.

  • bailee2012
    bailee2012 Member Posts: 60
    #12
    tanstaafl said:

    hmmm

    That's too bad.  So many haven't read and understood what evidence there is for perioperative cimetidine.  Often a fatal error for histamine reactive, CA19-9 bearing patients,  if one accepts any of the published papers' actual survival curves.

    Now my wife had a number of immune enhancing and molecularly targetable items (a la LEF.org plus 15,000 iu extra D3 daily, and high dose K2) before her first surgery.  The first surgeon completely forgot about the cimetidine.   grrrr.   However she had had 1600 mg cimetidine for almost 4 weeks prior to surgery, and some ever after, more than exceeding the cimetidine papers' criteria for success (including nonzero serum CA19-9 for long term tx).   Her immune response was outstanding and melted the mesenteric/peritoneal stuff, shrank the primary, and perhaps helped liver mets (she has "cysts" that don't behave like cysts).  The first surgeon still can't believe it.  But at least half dozen others do, including the second set of surgeons from the leading research hospital that pulled out the conglomerated para aortic cluster of met nodes.  Also both sets of surgeons used Celebrex perioperatively, without my even asking.

    With specialized surgery, it may not always be feasible to replace a surgeon.  However I enlist other doctors for quiet support.  Even further, although I am not cavelier about it and do a tremendous amount of homework, after several fubars, I control the nurse, the IV and our own pharmaceutical supplies. I am no longer a deer frozen in the headlights.

    cimetidine

    my husband isnt scheduled for surgery but do you think there is a benefit to taking cimetidine anyways during chemo treatment?  i am open  to suggestions as they werent able to remove tumor surgically. he is on chemo only right now.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #13
    bailee2012 said:

    cimetidine

    my husband isnt scheduled for surgery but do you think there is a benefit to taking cimetidine anyways during chemo treatment?  i am open  to suggestions as they werent able to remove tumor surgically. he is on chemo only right now.

    no se'

    Cimetidine has been human trialed in conjunction primarily with 5FU, alone, also clinical experience with PSK.   We have used it with UFT (oral 5FU precursor) + leucovorin, celebrex, PSK,  and supplements.   I've seen little published cimetidine experience with irinotecan and oxaliplatin.  A manufacturer insert says that a CYP inhhibitor like cimetidine may increase irinotecan's toxicity effect and  irinotecan dosage should be reviewed by a physician.    In vitro lab tests with CRC cells suggest that cimetidine should not directly overlap oxaliplatin.  Whether taking cimetidine separated in  time should be 1-3 days or much longer after oxaliplatin tx, or 12 or more hours before oxi- tx or much longer,  I don't know.    

    Also avastin and cimetidine may interact since they overlap effects in targets like VEGF-A. 

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #14
    bailee2012 said:

    cimetidine

    my husband isnt scheduled for surgery but do you think there is a benefit to taking cimetidine anyways during chemo treatment?  i am open  to suggestions as they werent able to remove tumor surgically. he is on chemo only right now.

    Hi bailee..are they trying to
    Hi bailee..are they trying to get him at a point where he can have surgery? How are you guys doing?

    Tans...thank you for sharing your knowledge with us. Still waiting to hear back from the onc. I let her know early on that im never looking for her to agree with a paper or study i send her...just to tell me it will do no harm. Shes been open and great about looking things over. My husband hasnt had oxi for 5 weeks now...avastin i think its been 7 weeks...so hopefully she'll say its ok. I asked her about 1000 mg day.
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #15
    tanstaafl said:

    no se'

    Cimetidine has been human trialed in conjunction primarily with 5FU, alone, also clinical experience with PSK.   We have used it with UFT (oral 5FU precursor) + leucovorin, celebrex, PSK,  and supplements.   I've seen little published cimetidine experience with irinotecan and oxaliplatin.  A manufacturer insert says that a CYP inhhibitor like cimetidine may increase irinotecan's toxicity effect and  irinotecan dosage should be reviewed by a physician.    In vitro lab tests with CRC cells suggest that cimetidine should not directly overlap oxaliplatin.  Whether taking cimetidine separated in  time should be 1-3 days or much longer after oxaliplatin tx, or 12 or more hours before oxi- tx or much longer,  I don't know.    

    Also avastin and cimetidine may interact since they overlap effects in targets like VEGF-A. 

    Tans, Ann, Jen,
    Wondering
    Tans, Ann, Jen,

    Wondering what you guys think about Steve taking cimetidine before his upcoming liver surgery (may or may not happen)? Steves onc mentioned that there is not usually a lot of bleeding during liver surgery, unlike his HIPEC surgery. I can't help but think that cimetidine can't hurt. The surgery MAY happen mid to late June. How far in advance should he begin taking it? What dosage should he take? (weighs 205 lbs.). How long after surgery? If you guys could give me your opinions and then I will ask the pharmacist at chemo to make sure there are no interactions.

    Thanks a lot
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #16
    There Should be a Law

    Where any Dr who tells a patient they have X years to live should have their license revoked unless they are planning on "whacking" the patient on a certain date....
    They don't know so why lie and needlessly upset people?

  • bailee2012
    bailee2012 Member Posts: 60
    #17
    jen2012 said:

    Hi bailee..are they trying to
    Hi bailee..are they trying to get him at a point where he can have surgery? How are you guys doing?

    Tans...thank you for sharing your knowledge with us. Still waiting to hear back from the onc. I let her know early on that im never looking for her to agree with a paper or study i send her...just to tell me it will do no harm. Shes been open and great about looking things over. My husband hasnt had oxi for 5 weeks now...avastin i think its been 7 weeks...so hopefully she'll say its ok. I asked her about 1000 mg day.

    Thanks for askin

    Honestly we have just been tryin to get it under control since his dx.  We havent really asked whats later just jumped in and started treatment immediately. At dx stage 4 with numerous mets to liver and lungs and tumor too large to remove so he needed colostomy, his cea was 3600 and we got it down as low as 20 in December then he was fighting a cold so chemo got pushed back couple weeks and then the arterial bleeding ended him in hospital twice in January so chemo was interrupted and all this caused cea back up to 97. So we really just tryin to get things under control still.  I hope everything works for you guys.  Sounds like they are going to be able to remove your husbands tumor which is great!  If he ends up with colostomy you guys will adjust just fine.  It's weird what we all find ourselves able to deal with just to stay in the fight against this mess.  Keep us posted on how things are going. Sending prayers up!

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #18
    Chelsea71 said:

    Tans, Ann, Jen,
    Wondering
    Tans, Ann, Jen,

    Wondering what you guys think about Steve taking cimetidine before his upcoming liver surgery (may or may not happen)? Steves onc mentioned that there is not usually a lot of bleeding during liver surgery, unlike his HIPEC surgery. I can't help but think that cimetidine can't hurt. The surgery MAY happen mid to late June. How far in advance should he begin taking it? What dosage should he take? (weighs 205 lbs.). How long after surgery? If you guys could give me your opinions and then I will ask the pharmacist at chemo to make sure there are no interactions.

    Thanks a lot

    ....

    I've laid out our pre-op experience and sources [click on tanstaafl].  You still need a doctor to support you on this, but you can rehash their comments here.  

    For those 65-75% of stage III and IV whose tumors stain positive with CA19-9/CSLEX, the peri-operative statistics are awesome.  I  got my wife started on cimetidine as soon as possible, and she's never stopped because it may help stop metastasis.  Some peri-operative cimetidine trials have been successful with a week to a month for stage II and III cases.  For a variety of reasons we decided to use more cimetidine, indefinitely for her stage IV.  I told my wife on day 1 over the phone, it took until day 2 or 3 to get to go and buy the cimetidine.     Guys may want to use the lower, basic amounts long term.  Read, read, read, where the LEF articles on colorectal cancer are a good starting point.    

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #19
    jen2012 said:

    Hi bailee..are they trying to
    Hi bailee..are they trying to get him at a point where he can have surgery? How are you guys doing?

    Tans...thank you for sharing your knowledge with us. Still waiting to hear back from the onc. I let her know early on that im never looking for her to agree with a paper or study i send her...just to tell me it will do no harm. Shes been open and great about looking things over. My husband hasnt had oxi for 5 weeks now...avastin i think its been 7 weeks...so hopefully she'll say its ok. I asked her about 1000 mg day.

    I got my info from the LEF articles as well...

    there are a handful of studies that they reference.  I followed the protocol of one of the Japanese studies which called for 1 week before and 1 week after, 800 mg per day, but I weigh 140 pounds or so, so I would think maybe a higher dose based on weight?  And there are studies in which people were on it for a year or more, so I think that's an option too.  From what I've read, the only issue is getting your stomach acids out of whack (because you're taking an acid med that you may not need for its stated purpose).  Tans, didn't you have something you have your wife do to avoid this?  AA

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #20
    annalexandria said:

    I got my info from the LEF articles as well...

    there are a handful of studies that they reference.  I followed the protocol of one of the Japanese studies which called for 1 week before and 1 week after, 800 mg per day, but I weigh 140 pounds or so, so I would think maybe a higher dose based on weight?  And there are studies in which people were on it for a year or more, so I think that's an option too.  From what I've read, the only issue is getting your stomach acids out of whack (because you're taking an acid med that you may not need for its stated purpose).  Tans, didn't you have something you have your wife do to avoid this?  AA

    Betaine HCl

    Betaine hydrochloride, with or without pepsin, for stomach acid replacement, starting or during the meal.  We never use more than two 10 grain tablets in a 5 minute period.  Also pancreatin (enzymes) between meals can help.  Both supplements contain substantial calcium, so blood calcium may need a little watching on heavy vitamin D.   But chemo sucks calcium out, so blood calcium may still need watching on the low end.  

    My wife gets lazy about the acid at meals (skips a week or three) and her blood calcium drops like a rock even with (calcium attracting) "toxic amounts" of vitamin D3.  Fact is maintaining a healthy blood chemistry on chemo requires active management.  

    Those 800 mg cimetidine dosages are developed with stage II and III in Japan.  Stage IV has less experimental experience, much less optimization.  Ultimately, tolerance  may determine the max dose. My wife has no problem staying on high dose cimetidine, and doesn't fudge that.  

      

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #21
    Ostomy

    Mine was a temporary ilostomy but there are days that I'd wish it was still there.  Agree with the doctor 30 years vs. 2 sounds like a lot more living to do.  My husband was never put off by it either.  Hope that all continues to go well and he doesn't stress about the ostomy - it's just a new normal.

    Kim

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