newly diagnosed newbie

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peanut_8
Posts: 2231
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: newly diagnosed newbie

Postby peanut_8 » Mon Apr 24, 2017 9:12 am

mpbser wrote: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.


The FDA may or may not be corrupt. Why would they be any different than any other government division.
As far as I'm concerned that's a red herring.

There's lots of evidence that chemotherapy is effective in treating colorectal cancer.

http://www.cancernetwork.com/review-art ... tal-cancer

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3126034/

Just going to sit back now and wait for evidence that broccoli is equally effective.

All the best,
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

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LeonW
Posts: 343
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: newly diagnosed newbie

Postby LeonW » Mon Apr 24, 2017 9:59 am

mpbser wrote: . . . 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?

Hi mpbser.

Good to see you back. I appreciate your still hanging around here. Gives me (us?) a chance to prove that we're not trying to bully you into anything, but merely sharing what we learned ourselves once over the initial devastating shock of diagnosis.

The article that I referred to is from the American Society of Clinical Oncology (April 2008 here) and focusses on Colorectal Liver Metastases. It is based on an analysis of 767 patients. In Abstract/Results (page 1) it concludes:
After a median follow-up of 52.2 months (range, 1.1 to 193.0 months), overall 5-year survival was 76% for patients with CPR compared with 45% for patients without CPR (P = .004)

Yes, you're right; the study does not address those who decided to refrain, or were not offered chemo.
But it does identify chemo as the only controllable one of four meaningful predictive factors. The report says:
Independent predictive factors for CPR were: age ≤ 60 years, size of metastases ≤ 3 cm at diagnosis, carcinoembryonic antigen (CEA) level at diagnosis ≤ 30 ng/mL, and objective response following chemotherapy. The probability of CPR ranged from 0.2% when all factors were absent to 30.9% when all were present.

Sincere wishes, L

NB1: Title of the article is:
Complete Pathologic Response After Preoperative Chemotherapy for Colorectal Liver Metastases: Myth or Reality?
It puts Clinical Response (=the usual NED?) for 'stage-IV patients with liver-mets', in perspective. An interesting, though not encouraging read, for CC/liver patients.

highlights are mine
Dec 2012 - Colon Cancer 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 (liver failure, delirium, emboli, encephalopathy) pCR- cancer gone
2014/15 - recovery/benign polyp
Apr 2016 - new town, new life
clean CTs and (1.3-1.4) CEAs: 4x2014, 7x2015-2018; 2 benign polyps June 2018
June 12, 2018: 5-yr survivor

mpbser
Posts: 414
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Mon Apr 24, 2017 10:31 am

Thanks hellsbells, jjh, and Leon. Appreciate the input.

Peanut, no need to make snarky comments about broccoli [alone] as an effective treatment.

Got a call from my cardiologist this morning. He won't clear me for the surgery until I pass the nuclear stress test that had been scheduled (pre-diagnosis) for May 8th. It's been rescheduled for May 2nd, with follow up on May 3rd. My surgery is [now tentatively] scheduled for May 5th.

I wish I had some idea what will happen if my cardiologist doesn't clear me for the surgery. Too many unknowns.... making me very uneasy.
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

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peanut_8
Posts: 2231
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: newly diagnosed newbie

Postby peanut_8 » Mon Apr 24, 2017 12:22 pm

mpbser wrote:Peanut, no need to make snarky comments about broccoli [alone] as an effective treatment.



Kind of ironic that you got your feeling hurt by my snarkiness, after you called Jaynee a bully without any evidence.
Just another day on the internet I guess. :roll:

Having said that, Colon Talk is one of the best internet sources for accurate information regarding colo-rectal cancer.
I'd hate for someone to read this thread and come away with the sense that they can cure CRC with diet and exercise, when there is no evidence of that.

Best Wishes with your decision,
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

rp1954
Posts: 1327
Joined: Mon Jun 13, 2011 1:13 am

Re: newly diagnosed newbie

Postby rp1954 » Mon Apr 24, 2017 3:34 pm

mpbser wrote:...However, I am very, very wary about the chemo if I am Stage II and maybe also Stage IIIB.

There are unknowns, limited information and potentially a lot of confusion (including drs) the first few months. At this point, we had been told "at least stage II" and I was preparing mostly for a stage 2 or 3 wife but still loading for bear - pumping many natural chemistries, a lot of cimetidine and a little aspirin. Lucky us, things turned out a lot different. A number of basic information issues didn't even resolve accurately during the first year.

Truth is, no one at this moment has a solid picture what's going on inside of you. We've had to gather extra scraps of information to avoid being derailed. The best quick data I've seen included CEA, CA19-9, LDH, 25 hydroxy vitamin D, ESR and hsCRP before treatment or surgery (and 5-10 days after). Usually 3-4 of those blood panels are missing, IMO a great disservice to the patient even several years later.

I have ordered graviola powder (https://www.ncbi.nlm.nih.gov/pubmed/23889049) which should arrive in a couple of days

This paper is merely a lab top experiment about a few cell lines (from prostate, ovarian cancer samples) that are not CRC, much less your particular CRC. Every well formulated, natural chemistry package that I've seen has had many more components and required a lot of pills etc. I later had special lab testing done on a fresh, living surgical sample. Basically it took both 5FU and specific, heavy duty natural stuff to kill most of the cells that were oxi- and iri- resistant. This multiple chemistry requirement has also been repeatedly demonstrated by frequent monitoring with (extra) blood tests.

Many of the problems of chemo can be overcome with metronomic dosing and potent alternative chemistries, matched to blood data and responses. Some kinds of cardiac problems too.

Too many unknowns.... making me very uneasy.

Prompt, positive steps with broad coverage of the possibilities have been our best answer. Previous comment and links
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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CRguy
Posts: 9538
Joined: Sun Feb 10, 2008 6:00 pm

Re: newly diagnosed newbie

Postby CRguy » Mon Apr 24, 2017 9:59 pm

rp1954 wrote:
I have ordered graviola powder (https://www.ncbi.nlm.nih.gov/pubmed/23889049) which should arrive in a couple of days

This paper is merely a lab top experiment about a few cell lines (from prostate, ovarian cancer samples) that are not CRC, much less your particular CRC.

I would also point out that it is from 2013 ... which in our little world here is very much yesterdays news...
and it is from Department of Plant Biotechnology, Tamil Nadu Agricultural University, Coimbatore-03
which in my sphere of inquiry has no relevance in clinical cancer diagnostics, research or patient care.

SO much has transpired since 2013, in so many areas, that I would definitely look to any and all follow up from that reference,
to see what has evolved since then. What other relevant testing and results are there for review ?

JMO .... YMMV

Best wishes
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

Ron50
Posts: 657
Joined: Fri Feb 10, 2006 7:04 pm

Re: newly diagnosed newbie

Postby Ron50 » Mon Apr 24, 2017 11:40 pm

Hi Mpbser, I was dxed in 1998 with a stage 3c tumour of the transverse and descending colon into 6 nodes. It was removed my surgeon who described it as frightfully aggressive. He was unable to use radiation as it is difficult to target the colon. He referred me to an oncologist. I had 48 sessions of chemo. I am currently halfway thru year 20 of survival still cancer free. I was 48 at dx and now 67. I live alone and still work 4 days a week. All the best for whatever you choose to do. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

weisssoccermom
Posts: 5855
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: newly diagnosed newbie

Postby weisssoccermom » Tue Apr 25, 2017 12:21 am

I realize that you think that I am a 'bully' but I'm not. Like others, I am only giving you my opinion which apparently (and it is certainly your right) you do not like nor agree with. As a member who has been on this board for 10 years, a cancer survivor for 10+ years (almost 11 years from my diagnosis), I can simply tell you that, almost exclusively, the members of this board will tell you that the combination of surgery/chemotherapy is your best shot at living a long and healthy life. From reading your recent posts, it seems as though you have agreed to surgery which, I commend you for. Sure, it is scary, but dealing with the pain and unknown of cancer is honestly much more scary. I hope that your cardiologist clears you for your surgery. As for your holistic/natural approach....hey, if that's what you want...then go for it. It's your life and you are the only one who has to live with whatever decision you make. However, I might say that when you come to this board and ask the opinions of others, if you don't like their opinion, you need to be prepared for that and you don't need to accuse others of being 'snarky' or a 'bully'. You'll likely find that most of us see no problem with (this is our opinions which you asked for) someone who chooses to go the route that you are advocating for to complement chemotherapy....great....it's your choice, but we wouldn't put ourselves in the position where we relied ONLY on the approach you are proposing. As Lee told you, the only two people that she knew who chose the natural route are no longer here to tell their story. I will tell you that my best friend, a non-smoker diagnosed with lung cancer in September 2015 who opted out of chemo (because she was nervous/afraid of it/side effects, etc.) died on July 20, 2016....a mere 10 months after her stage IV diagnosis (which I understand you don't appear to be). "V" attempted the supplementation, juicing, etc. but the cancer never abated. Sometime in July, 'V" wanted to try chemo but her body was too ravaged by the cancer and she wasn't strong enough. She died never having the chance to fight for her life. While I tried to support "V" in her decision, I find myself, at times angry at her for not at least attempting to save her life...even if the prognosis was not that good.

I would like to ask you a few questions. Regardless of your stage, how will you feel if you pathology report shows that you have one or more negative prognostic factors? Will that change your opinion/approach towards chemo?
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

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

Re: newly diagnosed newbie

Postby JJH » Tue Apr 25, 2017 3:23 am

As others have said, it would be good if you had Board-Certified doctors on your team.

You can check on the certification status of your doctors by using the CERTIFICATIONMATTERS website, and you can check on the ratings of your doctors by using the HEALTHGRADES website,

The instructions for doing this are given in the link below.
.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280
..
You would use the term "Colon & Rectal Surgery" when checking on your surgeon, and you would use the term "Medical oncology" when checking on your oncologist.

If your doctors are not Board-Certified, this might pose a problem. They might not be up-to-date on the most current standards and treatments.

Beckster
Posts: 258
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: newly diagnosed newbie

Postby Beckster » Tue Apr 25, 2017 5:43 am

When I was diagnosed, my oncologist gave me the choice to do chemo or not. Being that I was stage 2A CC, my two high risk factors were subjective. My husband did not want me to take the chemo, but I made the decision to take the chemo because I did not want to kick myself in the ass if I had a recurrence. If I did not take the chemo and I had a recurrence, I would always wonder if it would have made a difference.
With that said, I was at my friends house who was just diagnosed with breast cancer recurrence. She does not want the chemo and is looking at natural therapy. Her cousin cured her breast cancer with natural therapy. I also know another person who had uterine cancer and did high dosages of IV Vitamin C with Chelation before and after surgery. She said that the tumor shrunk and went down to a Stage 1. While all this sounds great, I felt it was not for me. It is your decision to do what you think is best for you. For me, chemo was my decision.....I am waiting for more evidence.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
lymph nodes: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/17 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/17-3.1, 6/17-3.0
Clear Colonoscopy 10/17 :D

mpbser
Posts: 414
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Tue Apr 25, 2017 7:00 am

I have noticed that some of you have received FOLFOX and others Xeloda. It would be great to know what made FOLFOX the cehmo of choice for those who use that and likewise for Xeloda.

I really appreciate this discussion, except for what seems to be ganging up and perpetuation of the "bullying" theme.

I have more questions about the productive informative comments but I need to return to this later.
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

mpbser
Posts: 414
Joined: Wed Apr 19, 2017 11:52 am

Re: newly diagnosed newbie

Postby mpbser » Tue Apr 25, 2017 7:46 am

Thanks again for the comments.

Rp1954, thank you. The list of tests is most helpful. I will be using it when I go see my surgeon’s nurse tomorrow.

My father died of pancreatic cancer in his early 60s. I am wondering how you were able to get an oncologist to test your CA19-9. I am going to try to get all those labs done ASAP.
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

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

Re: newly diagnosed newbie

Postby JJH » Tue Apr 25, 2017 10:13 am

mpbser wrote:...My surgery is [now tentatively] scheduled for May 5th...

With your surgery scheduled about a week and a half from now, there are some things that you might want to clarify with the surgeon. For example, what are the plans for having an Ileostomy after surgery? What are the plans for the types of additional tests to be done on the removed tumor? What are the plans for getting a good, comprehensive blood panel done as a pre-surgery baseline? What are the contingency plans for converting to open surgery if laparoscopic surgery turns out to develop difficulties? etc.

Will you have a chance to ask more questions before the surgery date?

Beckster
Posts: 258
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: newly diagnosed newbie

Postby Beckster » Tue Apr 25, 2017 11:14 am

mpbser wrote:I have noticed that some of you have received FOLFOX and others Xeloda. It would be great to know what made FOLFOX the cehmo of choice for those who use that and likewise for Xeloda.

I really appreciate this discussion, except for what seems to be ganging up and perpetuation of the "bullying" theme.

I have more questions about the productive informative comments but I need to return to this later.




I was given the choice between Folfox ( IV Oxi with 5/FU) or Capox (IV Oxi with oral 5/FU which is Xeloda). Xeloda is the oral form of the IV 5/FU. I chose Capox and I am glad I did. I did not need a port and because I had an allergic reaction on my first Oxi infusion, they discontinued it. My oncologist just has me on Xeloda, which he said is fine for Stage II. I am finishing my 6th cycle out of 8 with doable side effects. However, if I had stage III, they would have given me something other than Oxi. I hope this helps.

Beckster
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
lymph nodes: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/17 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/17-3.1, 6/17-3.0
Clear Colonoscopy 10/17 :D

rp1954
Posts: 1327
Joined: Mon Jun 13, 2011 1:13 am

Re: newly diagnosed newbie

Postby rp1954 » Tue Apr 25, 2017 11:26 am

The first CA19-9 we got drawn by the first surgeon on the night before, when it is typically near its local maximum value (I had already been through finger bending exercises on something else). I would have preferred both 1st day and presurgery values. If you have a low CEA and high CA199, insurance is more likely to approve it. In some cases, paying for the first test, tissue stain or blood test, gets the ball rolling.

Basically most US doctors are unfamiliar with CA19-9 for CRC. standard chemo messes CA19-9 up, from 2nd-3rd treatment to some months after chemo stops. CA19-9 is not as good as CEA for initially detecting lower stage CRC. However, once CRC is detected, the first CA19-9 can have extremely important and timely information about the individual's individual hazard levels and biochemical treatment. For us, CA19-9 works well enough with metronomic chemo and supplements for sustained monitoring. Also, early on we had a situation where the CA19-9 showed chemo responsiveness and CEA didn't. Then we got the CEA high LNs chopped out...

Now we simply self order blood tests if we're paying the bill. Either from a local drawing outfit (that will typically have dr connection), or order on a national order line like Life Extension's 800 number.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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