Discontinuing Cimetidine

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Badass
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Joined: Sun Jan 15, 2012 11:42 am

Discontinuing Cimetidine

Postby Badass » Tue Feb 16, 2016 4:03 am

I am wondering how many here have been on Cimetidine long-term. I have been taking it for three years and thought I would pass on my concerns. I am going to discontinue it and hope that it is ok to stop abruptly.

You may have read in the news some of the issues that have been associated with proton pump inhibitors (Cimetidine is not a PPI, but rather an H2 blocker). PPI's are being linked to increased risk of dementia, broken bones and nutritional deficits. Out of curiosity, I googled "H2 blockers" and found reports of studies linking them as well to an increased risk of dementia if used long-term. I also found references to studies linking them to sexual arousal dysfunction as I guess they interfere with androgen, and one study even reports prescribing them to treat hypersexuality in demented patients.

I had always considered Cimetidine a benign medication and saw no harm in taking it as extra insurance in preventing recurrence. I am no longer convinced that that it's worth the risks.

Jane
Last edited by Badass on Tue Feb 16, 2016 7:00 pm, edited 2 times in total.
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Long term use of Cimetidine

Postby JDinNC » Tue Feb 16, 2016 8:36 am

I've regularly used them for two years when I realized I had forgotten to take them for about 4 months. I thought about restarting them again but wonder since they are out of my system if it would have the same usefulness.
Would also love to hear other people thoughts.

Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

rp1954
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Re: Long term use of Cimetidine

Postby rp1954 » Tue Feb 16, 2016 12:45 pm

Overall, I consider the (over)common modern (ab)use of PPIs, marketing driven medical quackery, damaging digestion and nutrition.

I never consider Cimetidine as completely benign and have sought objective bases for its long term, targeted use with biomarkers vs when best to quit. In our initial era of darkness and incomplete information, we carefully considered the circumstances to quit using cimetidine: a month after surgery vs a year after surgery vs settled in for long term use. In fairness, we have had greater worries to consider about 5FU and celecoxib as daily diet items.

We seem to have bypassed many cimetidine related nutritional-bone issues with extra vitamin D3, K2 and magnesium, while monitoring monthly calcium levels. Likewise many maldigestive issues may be improved with betaine HCl and pancreatin, used them earlier after the lower weight era following surgery, not so much now, although probably still useful.

Dealing with smoldering distant lymph nodes and positive biomarkers for cimetidine use, quitting cimetidine has not been a realistic option for us. Without doing the CA199 and e-selectin (CSLEX1, CD15s or KM93) biomarkers, one is simply not sure whether the cimetidine is or was a critical adjuvant in the months and year(s) after surgery for advanced CRC.

One might get a rough, quick and dirty idea of the tumor biomarkers from pretreatment serum CA19-9 and CEA, or maybe even Kras type, or other partial information. However, the CA19-9 and e-selectin (CSLEX1) tissue stains are simply some of the best and most cost effective means for CRC treatment targeting available to predict, reduce, prevent or treat spread by probably the most common mechanism of fatal CRC spread and recurs if Matsumoto (2002), etc are correct.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Long term use of Cimetidine

Postby Badass » Tue Feb 16, 2016 3:18 pm

rp1954 wrote:Dealing with smoldering distant lymph nodes and positive biomarkers for cimetidine use, quitting cimetidine has not been a realistic option for us. Without doing the CA199 and e-selectin (CSLEX1, CD15s or KM93) biomarkers, one is simply not sure whether the cimetidine is or was a critical adjuvant in the months and year(s) after surgery for advanced CRC.


So, are you saying you are on it indefinitely?
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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Jimswife
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Re: Long term use of Cimetidine

Postby Jimswife » Tue Feb 16, 2016 3:52 pm

My husbands been taking it for 4 years now
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

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artifact
Posts: 8
Joined: Sat Jun 08, 2013 8:44 am

Re: Long term use of Cimetidine

Postby artifact » Tue Feb 16, 2016 4:46 pm

Pollo65 took it for the long term. Not sure when she started (some of you would know better--I'm sure the answer is in the forum somewhere) but for as long as I can remember it was a part of, what we considered to be, her "benign" regiment, with Tumeric and Milk Thistle, vitamins and gasX.
C.L.
Life partner to Marge Leopold (Pollo65) for 28 years
I met her as "Lee", though her given name was Margie and her professional persona over time became, "Marge". Early on in our relationship she got a piece of junkmail addressed to L. Leo Polo. After that she was "Polo" to me. My little niece, at two (more than twenty-five years ago), gave her what might be her most endearing nickname by excitedly scampering to the door and crying, "E's home! E's home!"

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juliej
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Joined: Thu Aug 05, 2010 12:59 pm

Re: Discontinuing Cimetidine

Postby juliej » Tue Feb 16, 2016 7:04 pm

Very good question, Jane!! It's the risk/reward thing -- when does the risk exceed the reward? Eager to see other's opinions.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Discontinuing Cimetidine

Postby Badass » Tue Feb 16, 2016 8:06 pm

juliej wrote: It's the risk/reward thing -- when does the risk exceed the reward? Eager to see other's opinions.


Exactly, Julie! And I am fuzzy on the reward, especially years out from surgery.
Do you take it? Do you have any clarity about the benefit?

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Sams wife
Posts: 753
Joined: Sun Jan 11, 2015 2:49 pm

Re: Discontinuing Cimetidine

Postby Sams wife » Tue Feb 16, 2016 10:02 pm

Well. I'm not smart enough to be answering any of this :D . But did want to put down what happened to hubby.

He was on it for a month before surgery.
Surgeon didn't give it to him while he was in hospital, but when he got out (we) started again.
After he ran out of those he ended up with pains down there where surgery was.

I took it that it helped immune system & not to spread after (during ) surgery. They said if an infection would show up it should do it in a week. It showed up a month later, when he ran out. I think he got back on it but I'm not sure. Our doc had him on Prilosec & tagament because he said they worked on 2 different things. I just wanted him on it around surgery. So doc let him.

I know ajane quit taking it because it was reacting with something (chemo). I can't remember but I think her pancreatic enzymes went high.
When hubby went to ER one time his were high & I'm pretty sure he didn't! have tagament after that.
Hubby does lots of things he shouldnt do. He could have had fried chicken on the day he went to ER & it raised enzymes? No telling.

Everyone was surprised he got an infection after a month but they gave him 2 sets of antibiotics. One, 1 week & 1 maybe 2 weeks later. Then the pains went away.i think it helped his immune system. But he quit having gasses & acid on his belly & ajane mentioned pancreatic enzymes after it happened to hubby or around the same time so he quit.

If tagament is on the list for althiemers ill have to make sure my brother knows!
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: Long term use of Cimetidine

Postby rp1954 » Wed Feb 17, 2016 6:15 am

Badass wrote:
rp1954 wrote:Dealing with smoldering distant lymph nodes and positive biomarkers for cimetidine use, quitting cimetidine has not been a realistic option for us. Without doing the CA199 and e-selectin (CSLEX1, CD15s or KM93) biomarkers, one is simply not sure whether the cimetidine is or was a critical adjuvant in the months and year(s) after surgery for advanced CRC.

...So, are you saying you are on it indefinitely?

Since I'm the caretaker, I've been buying it almost 6 years, sacks of boxes.
We see it as a permenant part of daily "chemo forever" with mCRC disseminated in distant lymph nodes, stained positive for CSLEX1 and CA19-9.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Discontinuing Cimetidine

Postby elise » Wed Feb 17, 2016 8:35 am

My liver surgeon urged me not to bother. He saw no advantage to it, even after reading the studies that we often quote on this site. I went with his opinion after being unconvinced by the studies.

This is just my 2 cents.

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Discontinuing Cimetidine

Postby juliej » Tue Feb 23, 2016 5:18 pm

Badass wrote:
juliej wrote: It's the risk/reward thing -- when does the risk exceed the reward? Eager to see other's opinions.


Exactly, Julie! And I am fuzzy on the reward, especially years out from surgery.
Do you take it? Do you have any clarity about the benefit?

Jane, as you undoubtedly know, there are studies showing a definite pre-operative and post-operative effect and other studies showing an effect for patients taking it for one year (which is how I took it - surgery + one year). But as far as long-term use in NED patients, there's not a lot of data. The ReDO Project (http://www.redo-project.org/drug-candidates/ has Cimetidine has one of its drug candidates, but they are investigating it in combination with existing standard treatments - again, not for long-term preventive usage. I can't find any controlled studies of long-term maintenance cimetidine except for ulcer patients, so we're kind of in the dark here. Let me know if you hear of anything, pro or con, and I'll do the same!
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1


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