The Colon Club

teacher2017 wrote:I wish you all good positive thoughts and all the luck in the world. Yes, cancer doesnt play by the rules. But I also think that with close monitoring we have a fighting chance to beat it out or at least back. I hate all of this and I miss my carefree life. They say stress is bad for us but I still can not seem to figure out how to not worry about cancer. This new normal is not something I’d wish on my worst enemy. Years ago I was asked if you could choose a different problem from a bowl of problems and return yours, would you? And I said no. Today I’d say yes. I’d trade this with something else.

Yeah. I'd trade for a different problem if I could.

One thing that has really helped me find peace is focusing on what I can control. About a month ago, my wife and I went to Charleston, SC for vacation. Someone recommended we check out the Charleston Tea Plantation tour. In their gift shop, I stumbled upon a book called "Cancer Hates Tea" by Maria Uspenski. She's a 10+ year cancer survivor herself and accredits her healing and survival in part to the many health benefits of drinking good quality tea. I've never been a tea drinker. Ever. But needless to say, I bit and bought the book. That was the first time I seriously began to consider the potential benefits of integrative therapy. I realized that diet, exercise, cancer-fighting supplements, meditation....these are things I can control. And there's plenty of evidence that suggests these adjunct approaches can be really helpful in preventing / fighting cancer or increasing the efficacy of traditional systemic treatments.

So for three weeks now, I've been drinking loads of green tea every single day. I exercise more. I've started making changes to my diet. And next week, I will be brining a list of known cancer-fighting supplements to my oncologist. Either she helps me integrate a mix of these into my daily regime or I find an integrative oncologist that will. Being proactive and opening up to new information has helped me feel less vulnerable. Especially when I consider that there are more tools in the toolbox that my oncologist never even brought up. And for what it's worth, every since I started introducing some of the changes I mentioned above...I've been feeling great. That goes a long way.

Good luck with your upcoming resection. I know it will be a success.

Ok resection done! I’m still here! I was sent home after a day. I was walking and eating on my own so they said I could recoup at home. Completely laproscopically and the surgeon said all looked clear via the internal ultrasound.
I plan on being very careful and really taking care of myself. I agree that we have to control what we can control. I will do my best.

I am currently looking up the benefits of using Tagamet after surgery to stop reoccurrence. If anyone knows anything on the subject, please chime in.

Hi teacher, I began it a week prior to surgery and continued to now, I'm mid neoadjuvent chemo
RPGUY Is more educated in this than I
I'm sure he will chime in,,,
There are many studies done on this and TBH, u have nothing to loose and all to gain

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4268104/
ADELE X

FWIW, my integrative care doctor at MSK, Dr Gary Deng, does not recommend Cimitidene. He said this: “Don’t use cimetidine. Only risks and no benefit. It is a drug known to potently change other drugs’ metabolism, either increasing side effects or decreasing effects.” I’m sure that RP and others here would disagree, and I don’t know what studies Dr Deng is basing this on.

So impressed that you went home after one day! I hope I can go home quickly after my resection next week.

teacher2017 wrote:Ok resection done! I’m still here! I was sent home after a day. I was walking and eating on my own so they said I could recoup at home. Completely laproscopically and the surgeon said all looked clear via the internal ultrasound.

Congratulations! It sounds like it was an easy surgery, have a nice recovery

Claudia

heiders33 wrote:FWIW, my integrative care doctor at MSK

So far, MSK integrative medicine has yet to impress me, mostly based on two other individuals. It was (is?) originally headed for a long time by a politicized, weak or non-STEM PhD who was once openly and notoriously anti-supplement, who simply didn't have any evident (bio)chemistry background to have much of a technical opinion. For myself, I put them in the hesitating, "weak tea" or window dressing category, vs more eclectic, marker driven, industrial strength recommendations.

“Don’t use cimetidine. Only risks and no benefit.

Totally misses the Asian literature that shows two uses: first, the all important perioperative use, and second, a potent daily immunochemo use with one of the best discriminating companion marker sets available, (tissue based CA199/CA242 + CSLEX1) - cimetidine not indicated for the other 1/3rd of advanced CRC patients that are not positive for both, per Matsumoto(2002).

I've never met a doctor that knew about the cimetidine - companion marker usage. If you don't read the instructions, I don't see how such people can expect to have the best result.

It is a drug known to potently change other drugs’ metabolism, either increasing side effects or decreasing effects.”

Actually I view interaction as a design consideration, misstated as a one sided negative. In our case, we focused on finding things with additive benefits to maximum cimetidine doses for the first several years. As far as I can tell about my wife, it improves 5FU performance, whereas we definitely had greater problems with common folic acid content. Cimetidine is fairly likely to have more problems with irinotecan and it's nausea and digestive problems; also guys often can't tolerate as high a dose as women. We found enough alternative drugs and options to do without oxi-, iri- and bevaciumab (Avastin) and their problems.

Since my wife's cancer, I've adopted an observational position about oncology that purveyors service what they sell, and often pooh-pooh other providers or treatments. If they don't sell it, there's a good chance they don't know (as) much about the subject as those who have substantial experience and can demonstrate its working(s). This allows me to avoid speculation about combinations of ignorance, illiteracy, innumeracy, laziness, integrity, intellect and institutional limitations (e.g. FDA).

teacher2017 wrote:I am currently looking up the benefits of using Tagamet after surgery to stop reoccurrence. If anyone knows anything on the subject, please chime in.

For ongoing liver tolerance and performance from drugs and supplements, we watch extended liver panels. We have no liver surgery experience.

For general safety, with or following liver surgery, some qualified doctors to ask (or papers to read) might be those doctors who did advanced liver surgeries in the 1980s and early 90s with high dose cimetidine for the prophyllaxis of acid aspiration.

Cimetidine, vitamin C and others, inhibit some growth factors, like VEGF, that become increasingly important with wound healing and liver regeneration. So I would look for informed opinions vs timing and monitoring. However, vitamin C has been used for surgical wound healing because of its cartilege forming property, like we did with IV and oral vitamin C also helps reduce post surgical immune suppression.

I would love to take Cimitedine starting today, and take it for two days after surgery. But I would have to ask for it via IV, and how would I do that?

We reminded them verbally in the run up to surgery, but had agreed earlier lining the surgery up.

IV cimetidine was not available anymore, so the surgeon okayed a big dose of oral cimetidine some hours before surgery, even though she was NPO. We happened to have our box of 400 mg cimetidine tablets, handy since the pharmacy was closed at 2-3 am in the morning. Her surgery was for para-aoritic lymph nodes and was remarkably quick. The first time we arranged a surgery a year earlier, the surgeon failed us and did not deliver on the cimetidine, but we did apply it the weeks before, and for long after (after was largely based on CA199 blood level), with great results in concert with the other stuff.

I would be a little cautious about liver surgery, less experience here at CT, make them do their homework. There was a big loose leaf compendium of surgical tables that still contained cimetidine dosing for surgery guidance, that the resident had to dig out while everybody else was asleep.

Ok, maybe I will hold off for now. I found out today that I am KRAS mutant so I’m not sure if that affects anything. I don’t know what my CA199 levels were at diagnosis although if I called my oncologist he could probably tell me.

teacher2017 wrote:Ok resection done! I’m still here! I was sent home after a day. I was walking and eating on my own so they said I could recoup at home. Completely laproscopically and the surgeon said all looked clear via the internal ultrasound.
I plan on being very careful and really taking care of myself. I agree that we have to control what we can control. I will do my best.

I am currently looking up the benefits of using Tagamet after surgery to stop reoccurrence. If anyone knows anything on the subject, please chime in.

So glad to hear surgery went well and you’re back home. RP1954, I am learning, is a tremendously knowledgeable resource in this community. I learned about Life Extensions and the Moss Reports from him. These are resources I’m currently looking into. I too have been researching Cimetidine, Curcumin, Selenium and a host of other supplements. But then I ask myself, what’s the right dose for me? Which of the many dozens of recommended substances should I take?

Coincidently, I started reading a book by Dr. Nasha Winters titled “The Metabolic Approach to Cancer.” It focuses mostly on the power of nutrition — specifically the Ketogenic diet — to fight / prevent cancer. Now, diet and cancer has been debated and discussed widely. But what I’m learning the most from this book is that I need to get intimate with my cancer. I need to know everything I can about it. In fact, a colleague of mine that works at Roswell Park Cancer Institute recommended I get the Foundation One test done. He advocates that I need to know the genomics of my disease. That’s the best way to personalize an integrative treatment plan — not just to fight the good fight, but also to slow progression and future recurrence.

Serum CA199 is pretty strongly associated with KRAS/BRAF mutants and is not the pancreatic cutoff (a value usually between 34 and 40 units, depending on vendor and location). I would try to get the CA199 value for future reference, and make a real decision with the surgeon about his informed safety views.

Ok will do. When you say get the CA199 value, you mean what it was at diagnosis, right?

Well, whatever you have, at dx, pre-surgery, a pre-treatment peak is one kind of information; a post surgery and a low are other information. One value, whenever, answers the "less than 2 units?", Yes/No question. The more you post, the more there can be answers later.

Other timings build up potentially useful information.
e.g. We needed to know how much 5FU - LV was needed to drive the immunochemo treatment. CEA in large lymph nodes wasn't budging downward before surgery, but CA199 gave a pretty clear response, and that baseline point has worked well enough for the chemo portion ever since, controlling later sources of CEA, too, over time with misc. extras.

Thank you for mentioning Dr. Nasha Winters' book. I looked her up and found a very informative video of her explaining "the metabolic approach to cancer." https://www.youtube.com/watch?v=KvnzkoCfLno My husband is diabetic again and this is all very worrying for me. But he knows what is healthy for him and what isn't. His choice.