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Please comment on my options

Dxed
Posts: 79
Joined: Dec 2012

 

Please comment on my options

 

Today, Saturday (01.05.13) I have my clinic visit after surgery. My surgeon was happy with the healing process. He unpinned the incision and sent me to the oncologist. With all the tests, histopathology, and reports, he said my staging is certainly stage IIA (T3N0M0).LVI indeterminate. He tried to explain this LVI to me in layman English. He said they examined up to 18 lymph nodes beyond the infected area and found them all clean. It seems this LVI has to do with layers of the removed piece. In terms of treatment, the onc told me I have two options:

1. To remain under biweekly observation and do blood work every once in a reasonable while.

2. To be on a mild chemo (tablets by mouth); he mentioned (Zelda? Xolda? sp) and periodic blood work.

 

I asked how soon I should start treatment; he said they can schedule me to start in two weeks (if I opt for the second option).

 

No one talked about diet; supplements, or anything of the sort. Some people on this board mentioned something about Citemidine(?) and I have no idea what that is.

 

I need your comments on any aspect of my situation.

 

Thank you

 

Sander

John23
Posts: 1832
Joined: Jan 2007

All chemotherapy chemicals are known to be carcinogenic.

No present chemotherapy chemical is known to target and kill individual
cancer cells specifically; chemo was designed to address tumors.

The oncologist is giving you an option to "wait and see", so why
not take that option?

I would look into the many "alternatives", including "juicing", since
building ones' immune system may do more for better health and
chances for survival, than any chemical around.

Your oncologist was honest enough to give you an option to
expensive and often useless therapy........ I would take that seriously!

Best wishes,

John

 

Dxed
Posts: 79
Joined: Dec 2012

 

Thank you for your input. I understand your position on Chemo (having read your posts and blog). I fully agree with you. I did tell my onc that I'd rather hold out for at least 4 weeks (before my next visit). I will have blood tests 2 days before the visit and the results will be available on the day of my visit. During this period I will be seeking a professional second opinion and exploring other alternative options. Hopefully, things will be ok. Thanks again

 

Sander

thxmiker's picture
thxmiker
Posts: 1216
Joined: Oct 2010

Welcome to the Boartd!  Sending Good thoughts and Prayers for a good solution. 

 

I would find out the type of tumor you had, and then you can weigh the Chemo Risks or not to Chemo. There are good diet and lifestyle choices for low risk of occurrence. 

 

I chose Chemo, because I have a high risk cancer. I also added juicing, more exercise, Vitamin D, B, Fish Oil, Probiotics, and Milk Thistle, and the Zone Diet to my life style. My wife and I ended up losing weight and getting physically fit. We have more energy.  We took a few mile walk last night and saw 2 elk during our walk. One has to love that.

 

I would get more information, so you can make a good decision for you. It is your decision, and not your Oncologists. He is there to guide you to make a good choice. There are many junk "Cancer Vitamins" also, they are there to take your money.  

 

Best Always,  mike

 

PS  The vitamins I am taking is what Dr. Lenz at USC recomended. I was doing them already and added Milk Thistle per Lenz's recomendations. 

Dxed
Posts: 79
Joined: Dec 2012

I've been following your posts on your visit with Dr. Lenz and his suggestions. I am glad he gave that boosting reception. Your diet and exercise plans make a lot of sense.

 

I wish you would elaborate a bit on Milk Thistle. I know it is a plant. But when I read about it, it looks like now it is regularized as a tablet. I could very well be wrong. the wiki has a good article about it (citing references as recent as December 2012). Would you please say something as to where one gets it and whether or not it is a tablet. The wiki article also talks about proper dose. If you anything on that please add it in your response. Excuse and forgive my ignorance.

 

Thank you

 

Sander

Lovekitties's picture
Lovekitties
Posts: 2934
Joined: Jan 2010

A quick look at the internet was of little help for your question.  It seems that there is a divided opinion regarding chemo or not for stage 2.

Did you ask your oncologist why do chemo if there is no sign of disease in lymph nodes or any other organ?  Is the chemo to be considered an "insurance policy" just in case there are still cells there but to small to detect?

You mention bi-weekly observation with blood work once in a while.  I am not sure what the "observation" part would be since any issues would be internal and not visable to external observation.  If chosing this option, I would want to include a CT or PET scan about 6 months out to "see" if there are any areas of concern.

I personally feel that the chemo option is best put aside until needed. 

As always, it is the patient who must feel comfortable with the choice based on the best information available.  Perhaps a second opinion would help you make that decision.

Wishing you the best outcome,

Marie who loves kitties

Annabelle41415's picture
Annabelle41415
Posts: 4244
Joined: Feb 2009

My radiologist told me that the panel of 12 had all but one decided against follow up treatment for me, but one doctor held out and talked to my radiologist and said there was one patient that didn't take the "mop up chemo" and got it back fast and furious and my radiologist talked to my oncologist and surgeon and they all decided that mop up chemo was the best option.  That is something that wasn't what was in my plans, but did it. I'm glad that it's behind me, but it wasn't easy.  They all gave me the option to do it or not, but when my radiologist told me what the one doctor said, it made me feel like he was looking out for me.  Every doctor is different and the option to do it is every patient's alone.  Some have never done extra treatment and are doing fine.  It's just one's decision on a personal level.

Kim

Dxed
Posts: 79
Joined: Dec 2012

 

Thank you for sharing your case and choice; it must have been an agonizing time for your decision. I'm happy for you that you did it. I also admire your uncompromising resolution in taking decisions. i will be looking for a second opinion soon, and weigh all alternatives. As of this moment, I am still for the wait. having said that, to be honest, I always have that "what if" in the back of my mind.

 

Thank you Kim

Sander

Dxed
Posts: 79
Joined: Dec 2012

 

I appreciate your suggestions (the insistence on CT or/and PET must be part of my follow up anyway). The chemo suggestion was something of an "insurance policy," as you put it.  He said there is no indication now for doing Chemo, but said certain experts suggest it in case there are loose undetected cells running around. However, he was all optimistic about my situation. I sensed he was a bit reluctant on the Chemo, but was careful not to sway my decision any which way.

 

A second opinion is most certain, and will be doing that soon before my next meeting with my onc. He in fact encouraged me to consult whoever I wish to consult.

 

Thank you Marie for your concern

 

Sander

Chelsea71
Posts: 1170
Joined: Sep 2012

I would recommend to hold off on the chemo. Insist on frequent blood tests and scans. Look into diet/lifestyle options. Research TCM, cimetidine, modified citrus pectin etc... Big decision though. Do your homework. It's easy for me to give advise, but if it were me I honestly don't know what I would do.

Good luck!

Chelsea

Dxed
Posts: 79
Joined: Dec 2012

 

I doubt it is easy to give an advice. You've taken the time to think it through, and you've been concerned as to what to say. All of that is not that easy. It is certainly laced with care and honest intention to help. That to me is more than enough. And thank you for all that advice to hold off on chemo. Most people try not to take a stand because they would not want to feel they are swaying one's decision, and that is understandable. Be sure, the final decision will be my own after weighing all variables. Thank you again

 

Sander

steved
Posts: 836
Joined: Apr 2004

The role of chemo in stage two is a grey area and the benefits if present are small. However, the cost is fairly small too with xeloda being a generally well tolerated rug that is convenient to take. One factor to consider is how you as anindividual would respond of the cancer came back and yoahead turned down the chemo. It is about thinking 'I did everything reasonable I could to fight this disease'. Thepsychological impact ofthese decisions is important to consider.

 

Justanother dimension to add to your dilemma sorry. Ultimately the decision is yours but I can tell it will be a well informed decision and you are doing the right thing tdevelop lop your knowledge at this stage,

 

Steve

Dxed
Posts: 79
Joined: Dec 2012

 

Thank you Steve for your in put. It is a dilemma. and I have to put down the ground to accept whatever results I have to face in the future. I am most certain (that is how I now think) that cancer will return. It first grew and I cannot see any reason why it should not regrow back sometime in the future. I have no knowledge how it forms at first, but there must be some defect that contributed to its inception. That defect seems to be untreatable. At least I have 4 weeks to make up my mind. Two of the four were decided by the oncologist himself (he said we cannot start xeloda before two weeks) and the other two I asked for if possible and he said that is fine since that will be within the time window he is looking for to have blood tests. During this time I am putting together a diet plan and excersises and taking my case to other professionals for a second and perhas third opinions.

 

As for xeloda, the onclogist said as things stand now per my case he would be advising nothing other than this kind of medication.

 

Thanks again

 

Sander

Chelsea71
Posts: 1170
Joined: Sep 2012

A man I know who is in his seventies has finished taking oral Xeloda for cc. He has not noticed any side effects. I think like Steve said, it's quite tolerable.

Chelsea

Dxed
Posts: 79
Joined: Dec 2012

 

Thank you for bringing up this actual experience. In fact my oncologist said something similar to what Steve and you have confirmed. He said it is highly tolerable and has few side effects (depending on one's general health). He was a bit concerned, however, about the time of the surgery to start it (If I were to opt for Xeloda). He suggested we wait for two more weeks before putting on this medication. And did not see a problem with 4 weeks (a period I asked for) before I make up my mind.

 

Thank you once more

 

Sander

PhillieG's picture
PhillieG
Posts: 4667
Joined: May 2005

For starters:

  • Not all chemo is carcinogenic.
  • Current targeted therapies ARE effective in many cases (obviously not all cases as there is nothing that is 100% effective 100% of the time)
  • Waiting to see is fine if you want to deal with cancer that's been given the chance to take hold. Being pro-active is an option too.
  • Diet is important, it's well worth looking into.
  • Don't believe everything people post on here (including me). It seems that 90% are people's opinions. It's very easy to get into pissing contests on here, don't waste your time. If something sounds absurd, look into it yourself.
  • Remember that what "cures" one of us might not cure others. This holds true for chemo, diet, TCM, rubbing guava juice on your scalp, etc...

The choice is yours. I know people tend to want to make the Right Choice but there isn't one. It's what's Right for YOU. The best I believe that you can do is to gather information from here and other sources, and weigh it and see what you're comfortable with. 

-phil

thxmiker's picture
thxmiker
Posts: 1216
Joined: Oct 2010

I also agree with Phil.  (Don't even get me started on Guava juice on the scalp....  lol)  

 

There are many types of cancer and many types of Chemo. Chemo Drugs are effective on many cancers, but not all.  Everyone reacts a little differently to each regimine, be it exercise, diet, suplements, or chemo. My attitude is to make my body as strong as posible to fight cancer. Mental strength is needed also. 

 

Back to the reason I posted:  Look up Milk Thistle Tabs and resources are readily available.   (Walgreens, CVS, Walmart and Target all have Milk Thistle Tabs.  If your local store does not have it, one can order online and have it delivered to the store for no cost shipping at all mentioned stores.)

 

Best Always, mike

Dxed
Posts: 79
Joined: Dec 2012

 

Thanks for your response. I visited a natural/herbal store and found it there. Still not sure whether or not I should use it. I have to read a bit first and ask a nutritionist.

 

Thank you again

 

Sander

thxmiker's picture
thxmiker
Posts: 1216
Joined: Oct 2010

Milk Thistle is to help the Liver function.  There are Studies that show it actually stimulates the liver function, to help process out the toxins.

 

Best Always, mike

Dxed
Posts: 79
Joined: Dec 2012

 

Very sound advice; thank you. Novice to this field (like most if not all newbies), I appreciate all the inputs I have received so far. Many posters have made it abundantly clear that each and everyone of us is unique, and ultimately any decision I would take will essentially be my own. I gathered that much since I first joined this wonderful board. Your take has put things in perspective, and message came through loud and clear. I appreciate how you summed up the whole issue. In fact I am gathering as much infos as I can, and been researching every idea thrown in. The past 10 hours or so I spent reading and listening to videos on Vitamin C IV (which I find to be too good to be true. I know it would help. Not sure though if it ever is as good as advocates make it look).

 

Thanks again

 

Sander

PhillieG's picture
PhillieG
Posts: 4667
Joined: May 2005

Remember, you're unique...just like everyone else :-)

It can be overwhelming to say the least and I think we all look for some guidance based on people who have been there or are still there. This site has been helpful to me and many others.

Dxed
Posts: 79
Joined: Dec 2012

 

 Just how oxymoronic a statement can be: "you're unique...just like everyone else :-)"! With this statement you outdid your earlier quote "other than cancer your life is perfect"! I sneeked into your INSPIRING page to understand where all this have come from!

 

yes; it is overwhelming; and yes we look for some guidance. And YES this site is wonderful. I would not know what to have done if it were not for this board. My god, your experience is a valuable lesson to anyone.

 

Thank you and best if luck

 

Sander

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

 

Amen Phil.

after 12 months of this fight, and time on this CSN site... your words are spot on.

 

Trubrit's picture
Trubrit
Posts: 1430
Joined: Jan 2013

Can I like this post?  Great advice, PhillieG!

annalexandria's picture
annalexandria
Posts: 2213
Joined: Oct 2011

is an OTC acid reflux medication (Tagamet is the brand name).  Some studies have suggested that taking it for a period of time before and after surgery can reduce the chance of the cancer spreading.  Personally, I took it for a week before and a week after my 5th surgery (in 2 1/2 years) and that happened to be the last one I've had to go through (it's been a year now, knock on wood).  Don't know if that's what did the trick or not, but it falls into the "can't hurt, might help" category.  With a little luck, you won't have to have any more surgery and this will be a non-issue for you!  Ann Alexandria

Dxed
Posts: 79
Joined: Dec 2012

 

Thank you for clarifying the uses and nature of "Cimetidine." I read positive posts on the use of Cimetidine pre and post surgery. I did "knock on wood," and hope you continue to have better health

 

Sander

khl8
Posts: 809
Joined: Nov 2009

Deciding to take Xeloda or not is an option only you can choose.  i took this medication in conjuction with radiation before surgery and had no issues with it at all.  Personally, I would choose the medication to kick nay cells that may be there hiding.  It is a decision that I would not want to regret not making at a later date.

Good Luck!

Dxed
Posts: 79
Joined: Dec 2012

Since a sales person has invested in my post and resurrected it, I want to take this opportunity to thank all who offered me their best advice (khI8 thank you). In case you have not seen my third update, I did visit Mayo clinic for a professional second opinion. The recommendation was for the Xeloda and the decision was up to me. Now, I am starting my fourth (out of six) cycle next monday. The side effects were little palm skin peeling during the first three days then disappeared. Now I experience only a mild metallic taste once in a while.

 

I want to express my gratitude to each and everyone of you for your valuable input

 

Thank you

 

Sander

tanstaafl's picture
tanstaafl
Posts: 962
Joined: Oct 2010

I would look at vitamin D3 (low is common and bad) and hsCRP (high is bad) for blood levels. I might consider the Life Extension recommendations (don't need to buy anything there) and the immune building things like PSK.     

Whether you do chemo or not, if your CEA was somewhat elevated before surgery (more likely to show CEA change if there's a met), getting CEA done a little more frequently, like 6-8 weeks for the first 6-9 months without chemo, can be big, big insurance  policy if something went wrong.   Ditto an earlier follow up scan to avoid later surprises.

Cimeditine benefit is driven by timing (best around surgeries) and the biology of the cancer cells.  If your cancer cells stain positive with CSLEX1 and CA19-9 (the most common form of bad), the Japanese papers show dramatic improvements in life, even if stage II with chemo.   Thing is that this pathology staining is not standard in the US, and is hard to get.  For stage III and IV, statistics favor cimetidine treatment for CA19-9 blood tests over 2 or if no CA19-9 test at all for basic oral chemo. Cimetidine for Stage II might be best if risk is proportioned from CA19-9 blood test results between 2 and 25.

Dxed
Posts: 79
Joined: Dec 2012

 

 

I have to study carefully your most welcome post. D3 was serriously deficient (7.50 that low; acceptable 70 out of 125 optimum). Docs have not mentioned it until I myslef asked to be tested. now I am on 45000 UI weekly. CEA after sugery was 1.9; since then I am tested monthly (only once did it get to 3.6, the next was 2.3. I am a smoker, and the normal range for smokers is 0-6); ca19-9 I did it once last month (12), the range is 0-30ish. When in Rochester MN, I asked my Mayo's nurse about CEA, and she said they don't rely much on it (I was not tested for it).

 

I do not know what is hsCRP, PSK nor CSLEX; would ask my onc next monday, and would surely appreciate your input.

 

would you please elaborate on your last sentence (Cimetidine for Stage II might be best if risk is proportioned from CA19-9 blood test results between 2 and 25). As I understand it, you are suggesting that I take Cimetidine since my ca19-9 is within the range of 2-25. Do you care to suggest a dose? frequency? and anything that I might research or ask my onc.?

 

Thank you very much for your suggestions

 

Sander

 

tanstaafl's picture
tanstaafl
Posts: 962
Joined: Oct 2010

The US oncologists typically hadn't read much (or anything) about cimetidine 3 years ago, when we started. So don't be surprised at their first answer.  But it's changing, and your interest may help it change.  

Our CEA readings (every 2-5 weeks) seem to be more consistent than most people report here.  When my wife got sick three years ago I found a lab with that had just changed to new equipment several months earlier.  Also she gets her blood tested 16-30 hours after her latest IV vitamin C infusion, which is a huge anti-inflammatory, and may reduce inflammatory interferences with CEA.

 

Blood vitamin D is frequently reported as ng/mL or nmol/L, so without the specific units, it is ambiguous and confusing.

hsCRP - high sensitivity C reactive protien for inflammation. Levels over 2 or 3 may suggest anti-inflammatories, natural and not, a la the LEF recommendations for CRC.  

PSK - Polysaccharide K, a Corioulus versicolor extract developed in Japan for  improved bone marrow and immune function for colorectal cancer with or without oral chemo. Something else US oncologists probably won't be familiar with, but alternative MD or ND probably will. 

CSLEX or CSLEX1 - A histological stain commonly used in Japanese blood tests that tests for sialyl Lewis X antigen.  Used with CA19-9 stain on fixed tumor tissue samples for pathology, Japanese research indicated a common double positive was quantitatively (100%) pretty grim without proper treatment.  Twenty years ago, stage II for these markers = stage IV with just 5FU.   A whole series of Japanese MD-PhDs appear to think cimetidine is part of that proper treatment.  

Two years ago, my wife was being sized for bad last year or so, by surgeons (inoperable) and oncologists alike. She is also CA19-9 - CSLEX1 double positive (confirmed after 15+ months post dx) but had been taking 1200-1600 mg of cimetidine daily since the first days of her diagnosis.   Finally, we found a surgeon, trained in Japan rather than the US, that would listen to our story about stopping metastasis.  He was so interested and blown away by all the supporting blood data, he accepted my wife's case.  

Cimetidine was dosed at 800 mg per day for one year with light oral 5FU chemo for stage II and III patients in the trial analyzed by Matsumoto et al (2002).  LEF recommends 1000-1600 mg CIM per da .  My initial decision for stage III or IV (nasty surprises) was for her to use 1200-1600 mg cimetidine (800 at night) until blood CA19-9 was confirmed or not by CA19-9/CSLEX tissue histology.  Long term cimetidine after surgery appears to be contraindicated for CA19-9 blood values less than 2, about 10% of advanced CRC patients. You will need to choose your own path(ologist) and get professional advice, which can vary greatly.  I have not seen anyone advocate smoking.

I suggest that you read and search as much as possible.   With mild chemo and all those supplements, my wife is never sick from her chemo, the cancer residues are stable or shrinking, and she is not planning on leaving anytime soon.  

 

 

 

Dxed
Posts: 79
Joined: Dec 2012

 

 

I cannot thank you enough for taking the time to respond. I appreciate it very much. I am impressed by the good results you and your wife have achieved. Wish you both all the success.

 

I will be doing my homework till next monday when I start my fourth cycle and meet my oncologist. I will be carrying with me all I can get my hands on, and have as many questions as I can put together. I sure will talk about Cimetidine, and ask for testing those markers if they are not included. I do not know too many blood tests on the test sheet. It is perhaps time to familiarize myself all these factors.

 

Your help is much appreciated and valued. Thank you

 

Sander

tanstaafl's picture
tanstaafl
Posts: 962
Joined: Oct 2010

If you are on oxaliplatin, I am sure that there needs to be separation in time of administration with high dose cimetidine.   Whether that's hours, days or weeks, I don't know and would be interested to see literature or basic test results, rather than just ex cathedra opinion.   

Dxed
Posts: 79
Joined: Dec 2012

 

 

 

Yes I am on oxaliplatin (infusion every 21 days), 14 days of Xeloda (1500 morning 1500 evening), one week break. I will be asking about the speration optimum period. I am not hopeful, though. Probably they would not know or have no idea. If they did they would have said something. I remember asking about cimetidine around the time of the surgery (Dec. 23) and cannot remember what the answer was. but it never came up in the following meetings. At that time I was cancer-rocky (things did not mean what they do now, having the minimum education, that is). But I will bug them with alot of questions.

 

Thanks for bringing the Oxaliplatin issue.

Dxed
Posts: 79
Joined: Dec 2012

 

 

If you have come across Ranitidine (Zantac) as supposedly a better newer generation superceding Tagamet, i hope you would say a word or two. After our last exchange, I promised to ask my Onc about Tagamet. I did, and he said we do not recommend it for almost the past 15 yrs, we use intead Ranitidine for normal doses (for acidity). He has nothing to say on its relation to cancer and no knowledge on high doses; he simply has no idea other than what he has heard (not sudies or readings). Told him about Japanese studies and recommendation, and he promised to look into those.Ranitidine seems to have improvements over Tagamet's side effects, but I am not sure whether or not those imporvement are/were the recipes for the secret magic it seems to hold and for promise most people attribute to its use.

 

If you your research has some light on the topic, please share

 

Thanks

 

Sander

tanstaafl's picture
tanstaafl
Posts: 962
Joined: Oct 2010

Only cimetidine.  Nothing else has cimetidine's cancer inhibiting results. Also cimetidine loses effectiveness when mixed with the proton pump inhibitors.  We're educating the drs.

Dxed
Posts: 79
Joined: Dec 2012

 

Tanstaafl

 

much obliged; a "thank you" is not enough

 

Sander

 

 

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