newly diagnosed newbie

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weisssoccermom
Posts: 5865
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: newly diagnosed newbie

Postby weisssoccermom » Fri Apr 21, 2017 2:43 pm

I"m not trying to bully you into anything that you don't want to do. If you knew me, as many people on this board do, I am NOT one who blindly follows the route that the doctors always lay out. If I did, I would have LONG ago followed their recommendations and had an LAR or perhaps as some surgeons had suggested, had a permanent colostomy (APR). I didn't choose that route and instead did my own research but research based on medical data....contacted doctors who were in trials against the 'standard of care' treatments and I succeeded. I did things in a different order and I searched until I found an oncologist who was willing to think 'out of the box'. However, let me state that my change from the 'standard of care' didn't mean that I chose to forgo all medical intervention and go 'natural' (for lack of a better word). I am also a HUGE advocate for being a part of your medical team and making sure that each and every decision goes by the patient.....IF that is what the patient wants....which is what I wanted.

You may not have an obstruction now, but almost certainly, the tumor in your colon will continue to grow and eventually it will again, almost certainly, obstruct your intestine.

You have every right to choose whatever treatment(s) you want and you certainly have every right to come to this forum to ask questions,'talk' with other patients, caregivers, survivors, etc. but I've been on this board now for 10 years and almost exclusively, every member has opted for some form of standard medical care. Now, we have had many many members who complement their standard medical care with naturopathic treatments and that's fantastic if that's what they want to do.

I wish you well if no surgery/chemo is the option you want to pursue. It is your choice to make and no one else's. No one, myself included, will bully you into changing your mind if that's what you want. We may state our opinions, but you have to make the choice about your life that you are comfortable with.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

mpbser
Posts: 430
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Fri Apr 21, 2017 3:29 pm

"You may not have an obstruction now, but almost certainly, the tumor in your colon will continue to grow and eventually it will again, almost certainly, obstruct your intestine."

No, not if I am one of the number of people I have written about who have successfully reversed their cancers naturally. You say this as if it's a guaranteed absolute, without sufficient evidence, so I consider it fear mongering. Fear mongering to me, considering the vulnerable position I am currently in, surely feels like bullying to me. I can tell that being on this board will not be productive, with comments like yours, therefore I will bid this place adieu.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

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LeonW
Posts: 345
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: newly diagnosed newbie

Postby LeonW » Fri Apr 21, 2017 6:06 pm

Hi mpbser,
mpbser wrote:regarding, "Doctors wouldn't recommend those treatments if they weren't the right way to go": oh yes, yes they would. Sure, most doctors do want to help their patients, but there is so much money wrapped up in this industry (~126 billion) that good intentions get corrupted among many in the field.

I feel sorry to see you battle / distrust the medical community. I agree that $$$ are important in all of society these days and we've all seen the examples where prices of (effective!) chemo were raised to crazy levels by new owners of taken-over pharmaceutical companies to make fast bucks. But this is no reason to distrust mainstream treatment itself.

I praise myself lucky to live in a different, somewhat less $$-driven society where I've found brilliant doctors beating my cancer, who do not have the urge to get filthy rich. My liver surgeon, for example, is a honors graduate from med school with majors in liver/pancreas cancer, who went to Harvard/Boston on a grant from a public cancer fund and is now running his own research dept at a major medical university at age 40. This brilliant chap is *employed* by the university at a salary. And costs of treatments are agreed between individual hospitals and each of the insurers, at treatment level - no extras when extras are needed. For example: I got my 7 rounds of Avastin without discussion or co-pay, to see if it would shrink the mets. And my 28 hospital days caused by too little remaining liver led to no extra income for the hospital: the reimbursed amount (100% paid by insurance) stayed the same. Mishaps and complications are for hospital account to eliminate any interest to beef up the billing part of the process. I've seen reports that found this to contribute why costs of treatment here are some 6 times lower than in your part of the world. All of this following the same / very similar, proven mainstream standards. And new / alternative treatments *are* introduced if more effective than the existing. No place for fear or emotion driven treatment. You may if you wish, but for own account. If any diet would be as effective as claimed, or add to the mainstream results, it would go mainstream immediately.
Thus even when there are big $$$ incentives, this doesn't make mainstream less powerful. Though I acknowledge the risk for over treatment.

You also asked 'what percentage of them were stage IV, what protocols did they do, how comprehensive and strict were they, for example.' and 'how many go the mainstream route and also do not succeed'

I cannot answer the first part of your questions, but as a stage IV (liver) patient, I found some insight in the success rate of mainstream treatment of CC with initially unresectable liver mets. Patient with Complete Clinical response (CCR) have 5-year survival rate of 45%; however, survival goes up to 76% if there is Complete Pathological Result (CPR). Predictive factors for CPR: less than 60 yrs of age; liver mets less than 3 cm; CEA less than 30 at Dx and objective response to chemo. Thus mainstream treatment (chemo) makes a heck of a difference.

Of course, it's your life, your choice. And no need to make this a big debate. But don't discount the mainstream medicine that may well make me a survivor.
(Will let you know how my May check up goes :roll: )

Best wishes, L
Last edited by LeonW on Sat Apr 22, 2017 5:09 am, edited 3 times in total.
Dec 2012 - 7 cm mass MM @65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen, 2/26 nodes, IVa T3N1bM1a, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (delirium, liver failure, emboli, encephalopathy) pCR - cancer gone
2014/15 - recovery/benign polyp
2016 - new town, new life
clean CTs and (1.3-1.4) CEAs: 4x2014, 6x2015-17, 1x2018
June 2018 - 2 polyps, 5yr survivor

User avatar
CRguy
Posts: 9567
Joined: Sun Feb 10, 2008 6:00 pm

Re: newly diagnosed newbie

Postby CRguy » Fri Apr 21, 2017 7:41 pm

mpbser wrote: I can tell that being on this board will not be productive, with comments like yours, therefore I will bid this place adieu.

Every Journey of One Thousand Miles begins with a single step .....
IF yours takes you away from here ... be well ... Namasté

best of luck and please share your experience with others to pay it forward into the future.

That my friend IS what we are all about here

Harmony on the Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Lee
Posts: 5621
Joined: Sun Apr 16, 2006 4:09 pm

Re: newly diagnosed newbie

Postby Lee » Fri Apr 21, 2017 9:08 pm

mpbser wrote:Fourth, as I mentioned before, I know people who have completely reversed their Stage IV cancers going the natural route. Sure, you may know some people who said they tried a natural treatment protocol, but I know from my wife's experience that it has to be diligent and extreme in order to be effective. It's not about just modifying a little here, a little there. We are talking about 1 hr cardio 5x/week, mega doses of the appropriate supplements, extreme veganism with juicing and intermittent fasting, and no deviations. The people I have known to go this route, including my wife, are met with disbelief by their doctors, who act completely stunned. This is because the industry is so dominated by the Pharma interests that alternatives are unfathomable. But, I have seen it with my own eyes and have heard of it by a number of people who were skeptical and dug into the data.
.


While I know of no person who succeeded going down your path, I wish you much success with it. HOW EVER, I do know of 2 people who tried your natural supplements, vagan route (or something similar to it). Wish I could pick there brains on what they actually did, butt sad fact is they are both very much dead today. One was a stage I, the other a stage II. Both were relatives of friends of mine. These friends were concerned about there approach and wanted me to talk to them. Me being a cancer survivor. These friends wanted their relatives to know, chemo, surgery, etc can be successful.

Stage I was found during a routine colonoscopy, she felt fine, healthy, etc at time of diagnoses. Rather than surgery and chemo (success rate for stage I is very high, something like 90 to 95%+ with surgery and maybe some chemo), she chose supplements and diet. For several years she TRULY believed she was killing off her tumor simply because of what was coming out in her stools. She thought she was passing bits and pieces of the tumor mass, UNTIL the growing blockage started to kick in. Very painful. At that point, she realized what she had been doing was NOT working and her tumor was not only growing in size, butt she was now a stage IV. They did an emergency colostomy on her to by pass the painful blockage/tumor and she started chemo treatments. Butt as my friend pointed out, she was skin & bones at this point, why start chemo now. This women passed away a few months following her emergency colostomy surgery.

The stage II person chose surgery, butt no chemo. Such a grey area, anyway she lived a few years and died. I don't know much about her other than she chose a natural route vs chemo. Guess it did not work out for her.

For the record, when I was diagnosed, some Dr.(s) ONLY gave me a 30% chance of being alive in 5 yrs. Believe me, A LOT has changed in the past 13+ years since I was diagnosed. When I was diagnosed. FOLFOX was experimental, standard chemo today for most people today. The testing they do on the tumors today is beyond me, at my surgery, they were looking for cancer spread and lymph node involvement. But make no mistake, I am very much alive today because of my surgeon and my Onc (not to mention my family support).

I would be interested in knowing where you are getting your info about stage IV people beating this cancer with diet and supplements.

Know that you have been given a lot of valuable info here, butt this path may not be yours. Believe me, at the end of the day, we do get/respect it. We are giving you advice based on our own personal journeys. It may not be your journey. Others before you have also gone down your path. Sorry to say, we really don't hear much from these people after a while. Maybe they belong to another web site, I don't know. Butt know you are always welcomed here. And if you should beat your cancer on your journey, PLEASE pass along your knowledge here to the next new person who is just starting this journey.

All the best to you, ALWAYS.

Lee
Last edited by Lee on Fri Apr 21, 2017 9:40 pm, edited 1 time in total.
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: newly diagnosed newbie

Postby TXLiz » Fri Apr 21, 2017 9:29 pm

You might want to look at Steve Job's cancer journey. He had a different type of cancer and I believe it was more advanced, but he also tried a natural and food based treatment.

His natural and food based treatment failed, and he sought out conventional treatments. By then, it was too late.

You could try the conventional and food and exercised based treatment? Why not both?

No matter what you choose, take care.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

rp1954
Posts: 1341
Joined: Mon Jun 13, 2011 1:13 am

Re: newly diagnosed newbie

Postby rp1954 » Sat Apr 22, 2017 3:10 am

Treating colorectal cancer without 5FU or some chemo so far has not been as successful as with some other cancers. Some people do have curative surgeries without chemo. That said, select heavy duty supplements and mild, off label drugs can make chemo work better, longer, with less side effects. Which chemo is crucial. We elected a milder, non standard 5FU chemo with lots and lots of CAM items.

The most successful complementary-alternative methods on CRC forums so far have combined at least some chemo, and surgery. I dare say we saw a fantastic initial immune response with supplements and mild drugs (e.g. cimetidine) before surgery but still didn't get all the cancer. Only by the careful use of everything - CAM, blood tests, (continuous/metronomic oral 5FU) chemo, and surgeries are we still in the game. Daily treatment with oral chemo, mild generic drugs, some heavy duty supplements, IV vitamin C etc. All in great style; my wife still plays the piano and has a pretty unlimited lifestyle without most of the side effects (she does have mild chemo brain, stresses easier). She does long car drives with long meetings fine. She can do chemo in a traffic jam. She even drinks some wine and beer despite the liver load. My wife is all of our doctors' most successful mCRC patient despite bad fundamentals in real estate (peritoneum and para-aortic LN; chemoreactive lung, liver things) and markers.

For successful long term examples at adding CAM, I would look for the Life Extension articles linked previously, my comments on CAM and blood testing, and at Gfpiv's experience. When even a little chemo or some part of the CAM fall short, markers for us start to rise fast - this means more CAM added to a fixed chemo. Continuous CAM-chemo treatments soonest have been bestest.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

mpbser
Posts: 430
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Sun Apr 23, 2017 9:02 am

Thanks, LeonW, CRguy, Lee, TXliz, rp1954 for your comments and suggestions (not unsubstantiated prognostications). I do appreciate the input.

I am familiar with the Steve Jobs story, Liz. I happen to agree with https://sciencebasedmedicine.org/one-more-thing/

LeonW, re" $$$ as no reason to distrust mainstream treatment itself." It's not the only reason I listed. As I already mentioned, my wife reversed her cardiovascular disease completely naturally when her doctor was telling her that she needed to be on statins, "otherwise your disease will only get worse and you will die." I trust her intelligence, knowledge, and critical thinking skills which are bar none. If people only knew what she does about the FDA, they would be equally skeptical of the pharmaceutical industry. As I wrote previously, she worked in Regulatory Affairs of a bio-engineering company. Her job was to process "NDAs" (new drug applications) for the company's submission to the FDA. In a nutshell, money rules what drugs are approved. But don't rely on my account of this, read for yourself:
Pharmocracy: How Corrupt Deals and Misguided Medical Regulations Are Bankrupting America--and What to Do About It by Willian Faloon
Health at Gunpoint: The FDA's Silent War Against Health Freedom by James Gormley
Inside the FDA: The Business and Politics Behind the Drugs We Take and the Food We Eat by Fran Hawthorne
The Truth About the Drug Companies: How They Deceive Us and What to Do About It by Marcia Agnell
Our Daily Meds: How the Pharmaceutical Companies Transformed Themselves into Slick Marketing Machines and Hooked the Nation on Prescription Drugs by Melody Petersen
Side Effects: A Prosecutor, a Whistleblower, and a Bestselling Antidepressant on Trial by Alison Bass
Also, see http://www.pharmamyths.net/institutional_corruption_and_the_myth_of_safe__effective_drugs_122645.htm
Thanks for the data regarding Predictive factors for CPR. (That's the kind of useful information I don't find fear mongering.) Do you have a source for that?

Lee, Those are two very sad anecdotes that do give me pause. I just wish there was more information, details about their conditions, genetics, and protocols they chose, etc. I understand that you don't have them. I don't have much detail about my anecdotes, as well. All I know is that Utrice Leid, a radio host, was diagnosed with Stage IV lung cancer after many years of smoking and obesity. She was given a prognosis of "3 months to live" by her doctors in 2013 upon her diagnosis. A year or so after this, she spoke on the radio with Dr. Gary Null about her experience and how she has chosen a natural treatment of diet, exercise, and supplementation. She power walks at least 5 to 10 miles every day, follows a strict vegan diet, and uses the supplements that Null has been discussing on his radio program for decades. My wife, who used to live in NYC (where he used to broadcast on WBAI) has been listening to him for many decades. She has told me of a number of callers to his show who describe their journeys with cancer that are similar to Leid's. To this day, she is alive and kicking. Doctors consider her an anomaly, to be discounted, just as pharmaceutical researchers do when they corrupt their data for NDA submission.

"We are giving you advice based on our own personal journeys. It may not be your journey. Others before you have also gone down your path. Sorry to say, we really don't hear much from these people after a while. Maybe they belong to another web site, I don't know. Butt know you are always welcomed here." Of course I have no objection to hearing about everyone's own personal journeys. I just take massive offense to prognoses about my cancer without any evidence or data to support such conclusions which are not presented as statements of opinion but of fact. Yes, as I wrote previously re: "skew", the participation of people here who chose to forgo chemo and/or surgery provides no indication of their recurrence/disease free survival. I appreciate the words of welcome. I might just stick around because I am not looking to be in an echo chamber and believe that one cannot learn without having discourse.

rp1954, thanks for the tips. I will definitely look at the resources you mention. They sound like they will be very useful!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

User avatar
peanut_8
Posts: 2236
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: newly diagnosed newbie

Postby peanut_8 » Sun Apr 23, 2017 1:13 pm

Hi mbpser,
Sorry to hear about your diagnosis.

A little background on myself. My sister is a VP in a major US pharmaceutical company, and my BIL has a PHD and is a professor of biochemistry. I would say unequivocally that they don't share your wife's skeptical opinion of the current state of the medical system. They were both a great help when I was diagnosed. At no
time did they suggest that diet and exercise would cure me of rectal cancer. I sincerely doubt that you can find any well documented research that bears that out. Of course there is always anecdotal evidence of things like this, but in a life or death situation, I would prefer to go with established medicine. You are free to make your own choice.

As far as your wife curing herself of cardiovascular issues, as far as I know, the first advice doctors tell someone in her condition is to modify diet and exercise. Generally they don't suggest statins right off the bat. However, in a cancer diagnosis, I have never heard of a reputable doctor suggesting that you can cure yourself of a colorectal cancer diagnosis by diet and exercise. If you have access to peer reviewed medical studies that suggest that is possible, I would certainly like to read the documents.

I appreciate that you have an open mind on the situation, and hope you can appreciate the distinction between anecdotal situations, and science based medical fact.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

mpbser
Posts: 430
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Sun Apr 23, 2017 2:01 pm

Hi Peanut,

I'm sure there are many people in the pharma industry who don't see any problem with how the FDA rubber stamps NDAs. In fact, why would they even welcome any regulation at all? I wouldn't even credit my wife's anecdotes without also being familiar with those books and article I cited. Here's another: Politics in Healing: The Suppression and Manipulation of American Medicine by Daniel Haley. But, hey, if your two family members are enough to convince you...

Regarding my wife's diagnosis of CVD and her doctor's recommendation to go on statins. When she was around age 38, after going from primary care doctor to primary care doctor, she finally found one she trusted because at her very first appointment with him, after talking about her family history (mother died of massive stroke age 47, grandmother blood clots and amputations [not diabetic] early death at age 56, and other similar history), he ordered genetic testing for hereditary hypercoagulability, a C-IMT sonogram, and advanced lipid analysis. She has heterozygous C667T MTHFR SNP mutation and the C-IMT showed carotid stenosis, advanced for her young age. Hence, the recommendation for statins.

Regarding peer reviewed articles, sure, I will share... I already cited one or two in the first post or two in this thread regarding efficacy of chemo, but as I come across more, I will post them in this thread.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 430
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Sun Apr 23, 2017 3:39 pm

P.S. I also linked to http://www.pharmamyths.net/institutiona ... 122645.htm which links to a downloadable article from the Journal of Law, Medicine, and Ethics a leading peer-reviewed journal for research at the intersection of law, health policy, ethics, and medicine. The authors are:

Donald W. Light, Ph.D., is a fellow for 2012-2013 at the
Edmond J. Safra Center for Ethics at Harvard University
in Cambridge, MA. He received his Ph.D. in sociology from
Brandeis University and is a professor of comparative health
policy at Rowan University, School of Osteopathic Medicine.
Joel Lexchin, M.Sc., M.D., has been teaching health policy
for 12 years at York University in Toronto, ON. He received his
M.D. from the University of Toronto in 1977 and since 1988
has been an emergency physician at the University Health
Network in Toronto. Jonathan J. Darrow, J.D., M.B.A.,
LL.M., S.J.D., is a research fellow at Harvard Medical School
and a lecturer on law at Bentley University in Waltham, MA.
He received his S.J.D. from Harvard in 2013.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

User avatar
CRguy
Posts: 9567
Joined: Sun Feb 10, 2008 6:00 pm

Re: newly diagnosed newbie

Postby CRguy » Mon Apr 24, 2017 12:02 am

peanut_8 wrote:I appreciate that you have an open mind on the situation, and hope you can appreciate the distinction between anecdotal situations, and science based medical fact.

YO' sista' nutt !!!!!
the open mind thing ......
" I always keep an open mind ..... JUST
not SO open my brain falls out !!!! "
ever heard me say this B4 ? :mrgreen: :mrgreen: :mrgreen:

I believe everyone on THIS Journey NEEDS to make it their own.

BUTT ... yeah you just knew there had to be one .... :shock:
sometimes the voices of experience should have their day
... AND the voices of newbies and seekers of a new paradigm .... should have their day

JMO ... IMO .... IME .... YMMV ....

been a western medicine trained vet for 36+ years
been a caregiver twice
been a Stage IVa CRC survivor pushing TEN years
have done ALL the surgeries and tests we talk about here ... as doc and patient !
I AM licensed in acupuncture and TCM herbal medicine
certified in surgical and therapeutic LASERS (= way cool ! BTW )
have access to all the top practitioners in alternative medicines
have moderated this forum (and others) for many years
have participated behind the scenes with AltMed trials and protocols with members here and elsewhere
research and learn, evaluate, assess and reassess EVERYTHING I encounter

BUTT ..... still chose proven "western" medical modalities for MY OWN TREATMENTS !

and I still mourn those who also chose traditional treatments : no longer here
AND
also those who chose alternative methods, which ultimately caused them to avoid that which has saved my skanky ass ... so far,
and they are also NO LONGER HERE.

MY POINT =
I could have chosen any one of a number of "latest and greatest holistic anti-vaxxers"
I worked with them IN THEIR OWN CLINICS for years

I CHOOSE WISDOM over wishes
I choose experience over expectation
I choose results over rants

like I said ...... JUST IMO
..... and I am still here 10 years later to rant about this.

Sadly I have no AltMed friends here to celebrate with us all

WORD !

CRguy
in Harmony with ALL on the Journey
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

mpbser
Posts: 430
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Mon Apr 24, 2017 6:19 am

Thanks for your input, CRguy. Right now, my problem is being able to research enough in time to make the big decisions that I need to make. I have decided to have the surgery which does seem to be a no brainer. However, I am very, very wary about the chemo if I am Stage II and maybe also Stage IIIB. I have ordered graviola powder (https://www.ncbi.nlm.nih.gov/pubmed/23889049) which should arrive in a couple of days. That's about all I have to add for now.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

Hellsbells2310
Posts: 1
Joined: Mon Apr 24, 2017 6:46 am
Facebook Username: Helen.collins

Re: newly diagnosed newbie

Postby Hellsbells2310 » Mon Apr 24, 2017 7:03 am

I was diagnosed with colon cancer on 4th February (world cancer day-nice touch!!) via a colonoscopy. I had surgery on 20th march, laparoscopic anterior resection. I'm due to be starting chemo, xelox, in the next few weeks. I don't know all the technical stuff and abbreviations but this is what I do know

You have to eat the opposite of what feels right. The worst thing that can happen presurgery is that you get a bowel obstruction. You must eat low fibre, high calorie food to keep your stools loose and your weight up. I was actually told McDonald's was recommended!! I know that this is not what you would ever recommend anyone to eat but cancer makes you lose weight and you need energy to fight this (I'm assuming your average weight, if not speak to a dietitian I guess). Once your treatment is done go vegan, clean whatever the next couple of weeks are not gong to make any difference to your recovery.

I am in the U.K. The genetic testing could only be done on the tumor removed as they need a significant amount of tissue. This is probably why it hasn't been done yet.

After surgery get up the next day, I did it's encouraged here. Take peppermint sweets or tea for trapped wind (that's the most painful bit!!) and chew gum to stimulate the bowel to work again. Try to eat.

Try not to read too much on line. There's too much out there. Don't know what you guys have on the us but cancer research uk and macmillan websites are good. The surgeon and oncologists should tell you everything you need to know. Scaring yourself before you have the surgery and know the full extent of the cancer was not something I wanted to do but then I scare easy!!

Good luck, your situation sucks (as does all of ours) but the recovery rate is good.

Good luck

JJH
Posts: 167
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: newly diagnosed newbie

Postby JJH » Mon Apr 24, 2017 8:02 am

mpbser wrote:...
I am wondering what O Stoma Mia was referring to. Curious minds want to know...

O Stoma Mia was referring to the specimen requirements for the Oncotype DX test -- a genetic test that is mainly relevant for patients diagnosed as T3N0M0.

The test is useful for determining whether such a patient would benefit from chemo or not. The test needs to be done before the decision is made about starting any first line chemo. This test has very specific specimen requirements:

http://colon-cancer.oncotypedx.com/en-US/Professional/Ordering/SubmittingASample
,
http://colon-cancer.oncotypedx.com/en-US/Professional/Ordering/PathologyGuidelines


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