found cancer in colon yesterday

[rp1954]

Should I just buy it over the counter and start taking it or do I need to ask my doctor first?
One can get cimetidine in a hurry without prescription but we did get agreeable medical support asap. That Matsumoto (2002) paper used 800 mg per day for stage II and III CRC. Life Extension recommended 1000-1600 mg per day for advanced CRC, stage III-IV, where tolerable. Men are less likely to tolerate the heaviest cimetidine doses long term. Our doctor checked the prolactin blood test several months after the start.

What if my doctor says no?
If that doctor cannot cite low CEA or CA19-9 as reasons in the long term case, he may not be very informed about cimetidine. I never met a cimetidine saavy doctor at the start but we do require supportive doctors. Doctors used to use cimetidne in tremendous doses during surgery, before modern proton pump inhibitors which are ineffective for killing/stopping CRC spread. Some previous discussions Feb'14; Oct'13; Sept'12

Our initial presurgical, baseline blood data include CEA, CA19-9, CA72-4, CA125, hsCRP, ESR, PT/INR, PTT, 25-hydroxyvitamin D, fibrinogen, d-dimer, LDH, GGTP on top of the normal CBC and chem-14 or 20. This list is longer than "standard" but there are technical uses where data usually can't be recovered from past samples.

[klee81]

Very scary....I'm with you. I'm 33 my youngest is 8 months old was diagnosed a month ago and haven't started treatment yet. Stage 1 rectal cancer. My polyp was 1.5cm if that makes you feel any better. I also asked my doc for something for the extreme anxiety, she gave me an Rx for Ativan which helps a lot and works really fast especially for panic attacks...it has also helped me sleep. I heard Xanax will knock you on your butt, but hey if that's what you need by all means do it. Hope to hear good news from you in your journey...we are all with you:)

[arizona mom]

Thank you all for your continued support!!!

I would LOVE to hear any comments about the Ct scan results....

I just got off the phone with the GI doctor. There is just the one mass (although pretty big) in the colon. There were also three spots on my liver. One of them seems pretty big...2in?!!! Doctor didn't seemed that concerned about the size, but of course the fact that they were there at all was not good at all. Doctor thinks it is 90% likely that the spots are related to the cancer. The lymph nodes all LOOKED clear, but with the spots on the liver, they must be affected, right? Do the liver spots automatically take me to stage 4?

I have an appt with the surgeon on Monday morning and doc is trying to move up the oncology appt to the same day. I'm going to start the cimetidine tonight. GI doctor didn't know much about it. Hopefully I will have surgery next week.

Even though the news is not good, I'm feeling much better (but maybe its the ativan). With the the pelvic pressure I've been feeling and all the other symptoms, I had myself convinced my whole pelvic region was overcome with cancer, and it was inoperable and incurable. That's where my head has been going the last couple days!!

Thank you for any insight you have to offer.

Lara

[ASTEPHENS33]

Stage 4 means the cancer has spread from the original site to another organ. Here is a link from the national cancer institute - http://www.cancer.gov/cancertopics/pdq/ ... ient/page2.

To me, waiting for the test results when things were unknown, was the worst, because my mind went to so many options. As you can tell from the people on this Board, colon cancer treatment is a journey and not a known outcome. Its difficult to take it day by day sometime. You've got friends here.

[rp1954]

Because of the need to understand the molecular type of cancer for long term cimetidine use, a CEA-CA19-9 blood biomarker pair before surgery is very important to get near the highest value. If vitamin D is extremely low, the test upfront may also be important before surgery to start repletion, according to some papers on better post surgical outcomes and vitamin D3.

[arizona mom]

rp,

Thank you for your suggestions!! I didn't find the cimetidine at the grocery store pharmacy, but will pick some up at walgreens tomorrow. Are you saying there are types of cancer that the cimetidine is not useful at all? or just long term after surgery? It wouldn't hurt right? I'll try to find out details about the tumor and let you know. I want to start on cimetidine right away because I'm thinking surgery will be in the next week.

Doctor said the the cea blood test before surgery was definitely in the plan.

Should I also just take vitamin D suppliments ASAP?

Anything else?

I really appreciate that you are sharing your insight and knowledge with me.

Lara

[rp1954]

"Standard" misses two useful blood tests at the start, CA19-9 and vitamin D.

Most advanced colon cancer patients are, or will be, vitamin D deficient. Many members on these boards have been grossly deficient. In retrospect, we should have gone to a lab immediately, pulled the 25 hydroxy vitamin D test, immediately started a very high but reasonably safe dose of vitamin D for a week or so, and then re-assessed with the lab results in hand and (mega)vitamin skilled medical help. 10,000 iu of vitamin D3 per day was still insufficient.
-----
According to a number of papers, the likelihood of survival benefit from cimetidine around surgery for 1 week to 1 month's use is high, due mostly to improved immunological responses.

Separately, long term cimetidine use, like a year or more, won't help if peak CEA or CA19-9 is too low. Low peak CEA or CA19-9 indicates one metastasis mechanism common to advanced CRC cases, is (still) missing. Because serum CEA and CA19-9 elevations can occur for other causes, causes that might be ruled out by examination or more tests. Tumor tissue on slides, stained with CA19-9 and CSLEX1, is the most definitive method with randomized trial data for long term, targeted cimetidine treatment. Such stained slides should be relatively cheap but are virtually unknown in North America, praise be to politicized medicine. CEA and CA19-9 tests near diagnosis and on the day/night before surgery would be a far better sample pattern than "standard".

[vilca11]

Very valuable info, Rp1954 - thank you! I have a question. I was on Cimitedine 800mg at night for a year, up to Dec 2013, but after surgery and chemo, when I was trying alternative ALA + Naltrexon + vit C IV at Dr. Burt Berkson clinic in NM. Anyway, I am on Xeliri + Avastin right now in preparation to IRE/Nano Knife for liver unresectable mets previously treated with RFA and SBRT at different times. The IRE is scheduled for May 22. I am taking a big dose (15k) vit D, to replenish what I lost (I brought it up to 78 with 25k dose a year ago, and thought I do not need to supplement more, so it went down to 37 again by now), but do you think taking Cimitedine right now before IRE would make a difference? And for how long to continue taking? I will be going into ADAPT after the end of this induction chemo and Nano.

Thanks in advance, Vilca

[rp1954]

....but after surgery and chemo, when I was trying alternative ALA + Naltrexon + vit C IV at Dr. Burt Berkson clinic in NM.
Not absolutely clear whether/when you stopped or continued with cimetidine after ALA+naltrxon+C IV treatments.

We have no experience with IRE, liver procedures, or avastin. 1200+ mg cimetidine was used straight through surgeries and scans, pared back on anticoagulants. In the literature, 800 mg tested well on stage II and III patients with maintenance level chemo, but stage IV has less data and dosage information.

LEF suggests cimetidine, PSK and celecoxib indefinitely but are mostly silent about chemo. There are successful recurrent cancer case histories that used cimetidine indefinitely for years. Cimetidine and avastin have some overlap that clinical trials exclude, so that interaction has to be considered as well as xeliri. I would think close scheduling the xeliri-avastin components off time would be the big concern. When things are unknown, if one proceeds, all that can be done is record signs, symptoms, take blood data more frequently, consult, and keep discussing.

[arizona mom]

vllca,

Is there a reason you are taking the Cimitedine at night or all at once? I starting taking it today, I thought I would take 400mg, 3 times a day. Is it been to get a super high dose all at once or does it matter?

Thanks! Lara

[O Stoma Mia]

I would LOVE to hear any comments about the Ct scan results....There is just the one mass (although pretty big) in the colon. There were also three spots on my liver. One of them seems pretty big...2in?!!! Doctor didn't seemed that concerned about the size, but of course the fact that they were there at all was not good at all. Doctor thinks it is 90% likely that the spots are related to the cancer. The lymph nodes all LOOKED clear, but with the spots on the liver, they must be affected, right? Do the liver spots automatically take me to stage 4? Lara

Dear Lara -

I have a question about the three spots they found on your liver: These spots were found using CT-scan, but can the doctors really definitively confirm cancer with just a CT scan? And what does it mean to say that "... it is 90% likely that the spots are related to the cancer.."? It seems to me that an MRI would be a much better and non-invasive procedure for confirming cancer, and it would be less controversial than doing a biopsy, which could lead to 'seeding' of malignant cells along the pathway used by the biopsy needle.

On Monday, could you ask the doctors what they are planning to do to positively diagnose those spots on the liver? It seems to me that they cannot just proceed from here by using only the CT-scan report as the final diagnostic tool.
----------
Here are some quotes from old articles explaining the advantages of MRI over CT-scan for diagnosing liver metastases:

"...Magnetic resonance imaging, MRI has more advantages than ultrasound, computed tomography, CT, positron emission tomography, PET, or any other imaging modality in diagnosing focal hepatic masses ... Benign lesions, as cyst, hemangioma, focal nodular hyperplasia, FNH or adenoma, can be distinguished from malignant lesions.

In patients with liver tumors, it is crucial to detect and stage the tumors at an early stage (to select patients who will benefit from curative liver resection, and avoid unnecessary surgery). Therefore, an optimal preoperative evaluation of the liver is necessary, and a contrast-enhanced MRI is widely considered the state-of-the-art method..."

Reference: MRI of Focal Liver Lesions (2012)

Magnetic resonance (MR) is rapidly emerging as the imaging modality of choice for detection and characterization of liver lesions due to the high specificity resulting from optimal lesion-to-liver contrast and no radiation exposure.

MR imaging has several advantages over CT such as no risks from radiation exposure and no adverse reactions to iodinated contrast agents. Indeed, MR is rapidly evolving as the primary imaging modality for the detection and characterization of liver lesions including metastases in many centers.."

Reference: Imaging of Liver Metastases - MRI (2007)

Comparison Studies of CT and MRI in Patients With Hepatic Metastases (2000)

[arizona mom]

Thank you for that information O Stama Mia,

I think I remember doctor saying something about a pet scan. But this was my GI doc, who admitted that he is not the expert on cancer. If they don't suggest an MRI tomorrow, I will ask them about it.

Thanks!
Lara

[vilca11]

vllca,

Is there a reason you are taking the Cimitedine at night or all at once? I starting taking it today, I thought I would take 400mg, 3 times a day. Is it been to get a super high dose all at once or does it matter?

Thanks! Lara

Lara, I had Cimetidine 2 years ago per Dr. Burt Berkson prescription in the dose 800mg before bed. Dr. Berkson was basing it on the research of Dr. Matsumoto, that Rp mentioned to you. Right now, 2 years later, there is, most probably, more info about the dose for stage 4 - Rp indicated 1200mg and higher. When I started taking Cimetidine, very few doctors knew about it, now much more info is available. You need to look into PubMed articles about Cimetidine or as Rp advised, Life Extension Foundation pre-surgery protocol to see the latest on that - I did not look into Cimetidine since I stopped taking it.

Please read what I wrote to you before. You have no idea even if your lesions are resectable or what sizes they are or where are they located, but already mentally moved to NY HAI is not a walk in the park, and it is for life.... If there is no other or better options, yes, by all means, but for now you know close to nothing about your situation and cannot possibly make any plans. Take Cimetidine and Vit D3 (read about it - big dose of high quality is needed, I was taken up to 25k when wanted to bring it up - but read yourself and make your own conclusions) - again, use Life Extension Foundation as a start for your research and high quality suppl source in future.

Take a breath, it will be ok, you will do all you need and have to do, as we all do. It is just a very devastating news and it is hard to think clearly at such times. Good luck tomorrow.
Hugs, Vilca

[stars9979]

Is this climitizine something that is over the counter? is there any issues taking it before chemo etc. or should I talk to my moms oncologist about this?

[Donniesgirl]

I don't know where in AZ you are, but just let me put this out there. My husband fought this damn disease as well, so I am pretty darn well versed in everything that goes along with it and the treatment. I am in the Phoenix area, and if there's anything you ever need I am available to help. Scheduling issues with four kids can be crazy enough even without health issues muddying up the waters! I can help with transportation for you or your kids, or anything else you might need. I am only 57, but I am retired, and run my own schedule, so keep me in mind if you discover you could use an outsiders hand up, or even just an ear to bend. Sometimes, as things drag on, it's emotionally easier to get help from an outsider. We often feel concerned that we are overwhelming family and friends, and asking someone not personally related can feel like a break. Plus, sometimes you can say the "#^%* darn #%^*ing" frustration to a stranger more easily than to a loved one! :-) My personal e-mail is artgma@yahoo.com. Message me anytime, and I really mean anytime, throughout this process that you find yourself in a bind. You probably aren't interested right now, but keep my info handy, and reach out anytime you need! This is how we give back:-) Name's Karen