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Met with the surgeon

jen2012
Posts: 1188
Joined: Aug 2012

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.

Goldie1's picture
Goldie1
Posts: 250
Joined: Sep 2011

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's picture
maglets
Posts: 2397
Joined: Jun 2006

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's picture
dmj101
Posts: 521
Joined: Nov 2011

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
Posts: 1842
Joined: Oct 2009

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
Posts: 1168
Joined: Sep 2012

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's picture
tanstaafl
Posts: 946
Joined: Oct 2010

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's picture
annalexandria
Posts: 2184
Joined: Oct 2011

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
Posts: 1188
Joined: Aug 2012

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.

tanstaafl's picture
tanstaafl
Posts: 946
Joined: Oct 2010

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
Posts: 60
Joined: Jul 2012

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's picture
tanstaafl
Posts: 946
Joined: Oct 2010

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. 

Chelsea71
Posts: 1168
Joined: Sep 2012

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

tanstaafl's picture
tanstaafl
Posts: 946
Joined: Oct 2010

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.    

jen2012
Posts: 1188
Joined: Aug 2012

Chels - I figure if it can't hurt, why not try it?   Still waiting to hear if the pharmacist says okay.

So this is annoying and good at the same time....after meeting with the surgeon and him mentioning the bone lesions, I emailed the onc.   Surgeon hadn't looked at the pet scan recently and couldn't remember if there were new spots or just the same old ones .. grrr.  So I asked the onc that question - her response was none of the bone lesions were positive on the most recent scan; so nothing clearly new.   

Chelsea71
Posts: 1168
Joined: Sep 2012

Hey Jen. That's very annoying. We had something similar happen. I'm guessing these bone lesions are a big worry for you. I really don't think it's metastasis. It just doesnt make sense. It would be weird for the cancer to go there this early on in his diagnosis. Bone mets are very painful. Everyone says it. He is not in pain. Right? Two biopsis have been negative. It could be so many other things. The chemo has been working for him. The tumor has shrunk. I think it would be unlikely for the chemo to work in one area area while the "bone mets" progressed. I think it's just a non cancer flukey thing. It's so frustrating. We just met with the surgeon a couple weeks ago. Went over the ct scan. He mentioned that the radiologist commented on some possible swollen lymph nodes in the chest cavity. I had a fit. Said that this is the first that we have ever been told of anything going on in the chest cavity. He assured me that it could be nothing. They had no baseline to compare it to. It wasn't even a scan of the chest. Just pelvis/abdomen. The scan just caught a glimpse of these nodes that seemed big to the radiologist. Said not to worry. Sure. No problem. Months ago it was retroperitoneal lymph nodes that were a concern. That seemed to die down. There just always seems to be some area of uncertainty to stress over. If I were you I would focus on the 30 year comment. That must have been music to your ears.

jen2012
Posts: 1188
Joined: Aug 2012

No pain..besides the typical body aches! We need to not worry..easier after getting the email from the onc. They dont understand how we grab every comment they make...good or bad! I dwell on things and analyze everything they say and how they say it...not good!

jen2012
Posts: 1188
Joined: Aug 2012

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.

bailee2012
Posts: 60
Joined: Jul 2012

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!

jen2012
Posts: 1188
Joined: Aug 2012

I hope they get his cea back down soon.  Sounds like you guys have been through a lot in the last few months - I hope things improve for you soon. 

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

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's picture
tanstaafl
Posts: 946
Joined: Oct 2010

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.  

  

 

renw's picture
renw
Posts: 282
Joined: Jan 2013

Officially surgery is considered the only curative option for CRC.

PhillieG's picture
PhillieG
Posts: 4665
Joined: May 2005

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?

jen2012
Posts: 1188
Joined: Aug 2012

I hear you Phil and I was upset with her for a while.  But I have come to like and appreciate her.  She is really good about answering emails and is very patient with my many questions and concerned about me and the kids, along with my husband.   She is young and was referred by a doctor friend of ours.  Her youngest child was born the month before our little guy.  She was so obviously nervous and uncomfortable at that first visit - like she really didn't want to break the news.  She got emotional telling us.   I know that all sounds unprofessional, but I do appreciate a doctor with a human side and I'm not really upset with her about it anymore, though I may mention it to her in the future that it's very overwhelming to hear on that first visit.    

Annabelle41415's picture
Annabelle41415
Posts: 4207
Joined: Feb 2009

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

smokeyjoe
Posts: 1428
Joined: Feb 2011

Tans, my oncologist gave me the script for cimitidine (we have to have prescription for it in Canada.   When he put me on Avastin he never brought up the cimitidine, I didn't either .... he doesn't really know much about the cc/cimetidine research.   Anyhow,  I've noticed if I take above the prescribed dose I get achey muscles in my shoulders,  one day it literally felt like I had done a workout with bench press the day before .... has your wife ever experienced anything like this, muscle or joint pain from high doses of cimitidine?

Chelsea71
Posts: 1168
Joined: Sep 2012

What dosage are you on?

smokeyjoe
Posts: 1428
Joined: Feb 2011

If you're asking me 800 mg/day  .... two in the morning and two at night ....  I thought I'd just up it by one pill for a couple of days and that's when I noticed that pain....dropped back  and pain went away .... weird/ don't know if it's a connection or just a co-incidence. 

Chelsea71
Posts: 1168
Joined: Sep 2012

I would like Steve to take it. Crossed the border and purchased some in New York State. The back of the bottle made mention about telling your doctor if you are on blood thinners prior to taking it. (must thin the blood, as well). Steve has had such a time of it lately with blood clots etc. He developed a spontaneous hematoma due to his blood being too thin. The last thing we want is another hematoma. If I mention it to the onc I know she will tell me that it's not worth the risk. Am very reluctant to try it. He may have surgery in June. Not sure what to do.

Chelsea

jen2012
Posts: 1188
Joined: Aug 2012

Hmmm! Well I assume they stop the blood thinners before surgery? Im going to ask our doc about it and will post her reply! Thanks chelsea!

smokeyjoe
Posts: 1428
Joined: Feb 2011

I'm on lovenox, have been for over two years ......   it may have an effect on oral blood thinners, I don't know.     I find it so odd that you can walk into Walmart and buy cimitidine on the shelf  but in Canada you need a prescription for it.   

Chelsea71
Posts: 1168
Joined: Sep 2012

It is weird. That's exactly what I did, got it at good old Walmart. You wouldn't believe how much cheaper prescription meds are over there. We save a fortune on groceries and gas, as well.

Chelsea71
Posts: 1168
Joined: Sep 2012

It is weird. That's exactly what I did, got it at good old Walmart. You wouldn't believe how much cheaper prescription meds are over there. We save a fortune on groceries and gas, as well.

jen2012
Posts: 1188
Joined: Aug 2012

Onc just emailed back and said the pharmacist wants to look over the chart further, but her first reaction is that she doesn't see a problem.  Maybe you can just ask Steve's doctor about it...without bringing up the warning.    Thinking about it, I would guess that most medications (in the US anyhow!) say to talk to your doctor before taking if you are on blood thinners, blood pressure meds, have diabetes, heart disease, ever stubbed a toe, etc!  We are really sue happy here so they want to make sure to cover all bases.

Chelsea71
Posts: 1168
Joined: Sep 2012

Thanks for the info. Yeah, they are likely just being overly cautious and covering their ass. However, Steve has the craziest things go wrong with him. If someone was going to have an unusual side affect it would be him. If a hematoma developed before surgery, I'm sure he would not end up getting surgery. I'll ask the onc and weigh out the risks vs. benefits.

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