Cimetidine/Tagament

[JDinNC]

After reading Articles after article regarding Tagamet. I decided to start taking 400 mg in the morning and 400 mg at night. I figure I need all the ammunition I can get to slow/ stop this cancer....even though I'm stage 4.
I'm having my first scan since completing chemo on Aug. 4th. I don't know if my nervousness of having the scan is causing me to have points of pain. It's not a continual pain but a ache here an ache there round my right lung/ chest area, where I had my lung resection. This is causing me to wonder if the cancer has come back....though I never had any pain with my original tumor.

Also...don't you normally have a three months CT after chemo....mine is almost 6 months...should I question this with my oncologist

[Charlie]

B&h consult - looking forward to that bad hospital food!! When were you allowed to swallow a pill re: Tagamet?
I have been on 400 mg for a few months, just upped it to 800 based on all of you! I am becoming a little obsessed with trying to get back on it as soon as possible because it seems post operative is a crucial time. I guess I will have no say in this, I will not be able to take a pill until they allow me to!! Tomorrow is surgery.

[rp1954]

Grouseman, read all the papers on celecoxib, go see Lin, do a mini PhD on the subject. If you're worried about side effects, research what are potential warning signs, at risk groups, and biomarkers. Map out a side effect prevention and response plan. We view the doctors as consultants, not gods or gatekeepers. You've been stopped out by individual doctors who don't have enough experience and independent capability to help you - others have done it at each point that you've been stopped out.

If you spent hundreds of hours researching and interviewing, have a successful doctor with actual experience on the subject, do you derail for a guy who spent 5-15 minutes skimming abstracts? And if he also scored a std deviation lower on the GRE and "flunked" the research portion of his medical training (didn't ask him back)? What is the oncologist's bonus if you switch to low dose xeloda-cimetidine-celecoxib-PSK?

We've had to find doctors that support us. We make the final call.

The Lung things have not changed one iota since her first CT scan a year ago, which makes the oncologist question if they really are mets, or have anything to do with it.
I've seen this several times, too. I think many doctors are not prepared to see unexpectedly good results or how to followup and firm up initial observations. Some, their minds just shut down and hit the reject button. "Next!"

[GrouseMan]

Grouseman, read all the papers on celecoxib, go see Lin, do a mini PhD on the subject. If you're worried about side effects, research what are potential warning signs, at risk groups, and biomarkers. Map out a side effect prevention and response plan. We view the doctors as consultants, not gods or gatekeepers. You've been stopped out by individual doctors who don't have enough experience and independent capability to help you - others have done it at each point that you've been stopped out.

If you spent hundreds of hours researching and interviewing, have a successful doctor with actual experience on the subject, do you derail for a guy who spent 5-15 minutes skimming abstracts? And if he also scored a std deviation lower on the GRE and "flunked" the research portion of his medical training (didn't ask him back)? What is the oncologist's bonus if you switch to low dose xeloda-cimetidine-celecoxib-PSK?

We've had to find doctors that support us. We make the final call.

The Lung things have not changed one iota since her first CT scan a year ago, which makes the oncologist question if they really are mets, or have anything to do with it.
I've seen this several times, too. I think many doctors are not prepared to see unexpectedly good results or how to followup and firm up initial observations. Some, their minds just shut down and hit the reject button. "Next!"

rpt1954,

You need not preach to me. I hold most of the medical profession in a great deal of contempt. I use to train/educate some of them in chemistry early on before they went on to attempt to get into med school, hopefully a lot of them dropped out before they got that far. I have read the papers, and abstracts, and am not afraid of the side effects from Celebrex..... I knew about Celebrex many many years ago. My wife's oncologist is very good. But he and many others need more convincing, other than animal studies and some limited observations from a couple of oncologists.... That's why we do trials! He is the actual doctor not me. I just happen to have spent 20 years doing anti-cancer drug discovery... Not everyone has the option of traveling around the world to see this or that doctor, and since my wife is happy with her oncologist right now she will not seek another opinion at this time. She and I both know the only cure is surgical, and she is hopping that when the tumor board again takes a look at her progress that they may take a more direct approach to intervention. Her oncologist was going to present her case again prior to him going to a conference. She is not one for grasping at straws. She is an engineer and evaluates things accordingly. I provide her information and explain things as best I can, but they are her decisions to make. We have been together over 30 years now, and I learned that long ago otherwise we would have not made it this far together

As to you comments about GRE education etc... Yes some quit studying. Not all. But I discount that in our oncologists case. I have provided him with some papers outside of his experience and he responds with well thought out questions and observations. He knows he is not talking to someone that has little better than a high school education, and is use to speaking with PhD's and researches directly as a peer.

Personally - I don't like the side effects of Xeloda. It tends to have worse HFS than 5-FU. Some people are fine with it others are not. Its more a matter of convenience for some. My wife is doing well with 5-FU and I see no reason to go to Xeloda. Adding Celebrex would be a bonus and when Dr Lin's trail is finished, I think our oncologist likely will adopt it as a part of his tool kit.

Regards,

GrouseMan

[behconsult]

B&h consult - looking forward to that bad hospital food!! When were you allowed to swallow a pill re: Tagamet?
I have been on 400 mg for a few months, just upped it to 800 based on all of you! I am becoming a little obsessed with trying to get back on it as soon as possible because it seems post operative is a crucial time. I guess I will have no say in this, I will not be able to take a pill until they allow me to!! Tomorrow is surgery.

You are correct. When they let you have food which is usually day two or three. Be sure and get up walking after the surgery as soon as your are approved to. It helps, though takes effort as it is easier to hang in bed. Good luck on your surgery Charlie

[rp1954]

Thanks, Grouse, didn't mean to sound quite that strong. Hope that surgery is forthcoming without the hassle of having to shop.

Your posts setting forth your rationale and wife's experience combining frequent cimetidine tx with Folfox and Avastin are excellent and add a vital first demo in targetable cimetidine use here. Any hints on peak CA199, min/max?

[GrouseMan]

Thanks, Grouse, didn't mean to sound quite that strong. Hope that surgery is forthcoming without the hassle of having to shop.

Your posts setting forth your rationale and wife's experience combining frequent cimetidine tx with Folfox and Avastin are excellent and add a vital first demo in targetable cimetidine use here. Any hints on peak CA199, min/max?

My wife's oncologist hasn't run a CA 19-9. CEA. Seems to be a good marker for her. Started post op at 110, sitting now around 2 for the last 4 months. I doubt I would have to shop, when the time comes. Her original surgeon is part of the team, and he trains many others in Robotic laproscopic techniques. We have very many options. A Karmanos cancer Center in near by, and a major Midwest research/med school also is near by that is also an NCI regional center. I also know a lot of experts personally, that continue to do research, for which I can get additional advise from when I need it. But no mater what - all decisions are hers until she is no longer able to make them.

I seriously doubt that we will absolutely ever know that cimetidine helped or not. And frankly it doesn't matter to me. It's all I could contribute rationally after so many years of standing by helplessly while friends lost loved ones over the years I was doing research and couldn't really help them much while I was doing so. Nothing I could do, the drugs I was creating had many years of testing ahead of them. I felt very helpless with all that i knew but still don't know. My wife's diagnoses almost drove me over the edge. Her consent to at least try this was about all that saved me. I still have some very dark moments. She perhaps does as well but she hides them well from me.

Knowing what I know I am always on the edge of complete despair. I have no religious faith, and neither does my wife. We are very rational people. But for the moment I guess I will put my faith in this one drug as something that helps.

GrouseMan

[rp1954]

...I seriously doubt that we will absolutely ever know that cimetidine helped or not.
If you have CA19-9 stains done for sialyl Lewis A, and they are grade 2 or 3 (~3/4 st IV are), out of grades 0, 1, 2 and 3, you can reasonably count the cimetidine as a major benefit according to a number of Japanese MD-PhD researchers and their papers. That high CEA value ~110 strongly correlates with overexpressed sialyl Lewis X, or you could have CSLEX1 stains done on fixed path samples per Matsumoto (2002). A number of the Japanese MD-PhD researchers consider tissue positive CSLEX and CA19-9, for overexpressed sialyl Lewis X and A, a definitive biomarker pair.

That CA19-9 and cimetidine were familiar discussions here in spite of "standard medicine", ASCO, or NCCN guidelines when your wife got sick, is precisely because of often difficult board discussions from a minority of patients determined to find out more about cimetidine treatment or get their CA19-9 tested, and communicate it. Fours years ago, the big shots were c-l-u-e-l-e-s-s, we asked around. Four years ago, to mention cimetidine or CA19-9, was a good way to get ignorantly laughed at by oncologists, "oh, that's a pancreatic marker" or "...cimetidine ?!?". Today, primarily those doctors who want to embarrass themselves, still laugh outright.

CA19-9 for initial detection and for monitoring is statistically inferior to CEA, superior perhaps for only 1 in 20 patients stages I-IV. The odds for CA19-9 superiority are much better in stages III and IV but still the minority, so CEA "wins". What is missing is that an elevated peak CA19-9 value, combined with e-selectin/CSLEX1 or CEA, even a single CA19-9 blood test near surgery or before treatment, biotypes the cancer for beneficial targeted cimetidine treatment. The Matsumoto (2002) data, nonsignificantly combined for CSLEX1 and CA19-9 survival, show a survival shift from ~17% for 5FU alone to ~95% for cimetidine - 5FU treatment. Matsumoto elsewhere made statements for the heavily biomarked stage II and stage III patients, like all dead at 6 years without cimetidine vs all alive at 6 years with cimetidine. A dozen years later, little more trial work has been done since Smith Kline's cimetidine patents have long lapsed.

At this point, one can still get CA19-9 tissue stains (ca $150) and a serum CA19-9. We have to help ourselves to move the ball forward. If there is one thing that time here teaches us, is how fast things change, what information means to decisions, and how treatments are "tested" IRL. Numerous times survival came from being ahead of the curve vs being buried by it. Again G-man, thank you for your salient cimetidine-folfox/5FU-avastin contributions.

[Bev G]

rp1954,

Although I can't claim any expertise in understanding biochemical nuances, I read with great interest your last post about CA19-9 markers and, if I'm reading correctly, the enhanced benefit of Cimetidine in people who have particularly high 19-9 levels. It gives me renewed grief and frustration regarding our recently departed Ashlee. She was diagnosed with a crazily high CA19-9 (>4000 I believe) and they, of course, thought she had pancreatic CA. Through the years of her colon CA, her CA19-9 would go up before her CEA, which would certainly go up, but not extraordinarily so. I couldn't stand her oncologist (though of course I didn't know him) but I spoke with her a couple of times about cimetidine. She had great confidence in him, and never wanted to rock his boat. She never had any tumor testing done. I miss her so much. I wish we all had oncologist who would consider EVERYTHING, and were not too busy, or disinterested, to fully keep up with what little seems to actually or potentially seems to be available to help us.

As I'm sure you recall, Gaelen was involved in the development of anti-cancer drugs. She told me once privately years ago that she wished she could tell everyone on the Board to take Cimetidine, but because of the nature of her work she could not do that. Incredibly, I still don't take it. Have no idea why I don't. Pretty sure I'm crazy. I wonder if we should all just be put on it at diagnosis.

Thank you for your interesting post.

Bev

[pollo65]

I have been trying to stay out of things lately but must add my 2 cents. I have been on cimediine(sp) since surgery 5.5 years ago, does it help, I don't know because I also take curcumin ,milk thistle and aspirin. What I do know is that I listen to my onc, weigh what he says carefully and then follow my own intuition and research.
BTW I was in the hospital for 10 days with Xeloda induced pancreatitis last year and when I asked my onc he said that because I had GI issues before I should not have been put on Xeloda because oral Xeloda is harder on the intestinal tract than by infusion 5fu. Makes sense to me.
I wish there was better communication between oncs, that they all would stay as current with research as WE do, and I especially wish they listened better/more, I always feel that after about 15 minutes their heads go to the patient and whether we know it or not our appointment is over(whine/gripe.)
pollo 65

[rp1954]

I wonder if we should all just be put on it at diagnosis.

Probably yes, probably for 2-6 weeks, until a while after surgery for more optimum immunological benefit, similar to the Life Extension recommendation. After that, the dual biomarker tests should be considered for long term use. Matusmoto's data still showed a net benefit even without biomarker testing for stage III and stage IIs. Although most advanced CRC should benefit, cimetidine is not health food. It may slightly burden patients with one or both biomarkers negative over the long term for those predeterminable to have little or no antimetastasis benefit.

For the majority of mCRC patients that are ++ biomarked, adding cimetidine might well be a life long necessity, although there is not the volume of formal trial data to cast that in concrete for ASCO/NCCN. Particularly with maintenance chemo. In the meantime, they're considered lucky anecdotes until more peak e-selectin or CEA plus CA19-9 tissue/blood data is available.

[Cherie]

I wish there was better communication between oncs, that they all would stay as current with research as WE do, and I especially wish they listened better/more, I always feel that after about 15 minutes their heads go to the patient and whether we know it or not our appointment is over(whine/gripe.)

Completely agree often I am tell the doctors about new treatments. Luckily I have a doctor willing to catch up.

[edi12]

Hi, first post here, although I'm reading the messages in the last 4 months.

My wife is going to do the first pet/ct after chemo next week and, if lucky, go to liver resection.

We're really interested in cimetidine, she's already taking them since yesterday, but I'm concerned about possible liver failure related to pos resection. Is it safe going with cimetidine before liver resection or the indication is only to colon resection?

Next appt with onc will be only after pet/ct results when we'll ask his oppinion.

Thanks! Hugs from Brazil,
and sorry for my bad english.

[coloradowalt]

I too read this thread with interest. After reading the references in this thread and other papers I felt that this was a nobrainer, I could see only an upside. My wife is going to have her first liver surgery this August (it will be a two stage liver resection). I queried her surgeon on Cimetidine/Tagament and he had no problem with her taking it. You should certainly ask yours.

[rp1954]

Cimetidine was used broadly as the first line drug in surgery for prophylaxis of acid aspiration, for many years. The uses discussed here are for stimulation and preservation of immune function around surgery, and a common, biomarked metastasis mechanism in aggressive gastrointestinal cancers and their metastases.

Now, some CRC patients ask their surgeons to replace the current proton pump inhibitors du jour with cimetidine during surgery itself, since only cimetidine works well against the biomarked CRC metastasis.