Stage IV MCRC and Alternative therapies

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woodwards2013
Posts: 24
Joined: Sun Mar 17, 2013 1:23 am

Stage IV MCRC and Alternative therapies

Postby woodwards2013 » Sat May 25, 2013 3:45 pm

Hello, I was wondering if any other people on here are stage IV and using any alternative therapies? My wife Jennifer was diagnosed with Stage IV MCRC almost 2 years ago now, she was 29 at that time. She has since gone through 4 rounds (6 doses/round in 12 weeks) of FOLFOX w/Avastin, had surgery to remove the primary tumor, complete hysterectomy, colostomy. She also has been on Stivarga, didn't work out well, bad reaction and hospitalization. She did well and after the surgery they did one more round of Folfox and then put her on a "chemo holiday" to allow her immune system to get strong enough to do a liver resection. After the chemo holiday she had a pet scan which unfortunately showed a progression and new mets to her lungs. Now we are on FOLFIRI w/Zaltrap. In December her CEA was 11.2, the doctors gave her 3-6 months to live. After that devastating blow, we decided we weren't ready to just pack it up and wait to die, we did alot of research on any and all alternative treatments we could find. After evaluating which treatments sounded like they might be able to provide some kind of benefit we went back to the medical oncologist and asked his opinion, with his blessing we started the FOLFIRI with Zaltrap and then went to the Wycoff Wellness Center in East Lansing. There we met with Dr. Wycoff and started a plan of attack. She is currently doing a high dose i.v. vitamin C protocol (2X/week on non-chemo weeks, and 1X/week on weeks she does have chemotherapy) She is currently at 100 gram infusion over 2 hrs. She is also doing UBI (ultraviolet Blood Irradiation) at every visit at the center, lastly she is also on a high pH protocol utilizing Cessium to bring her pH to 7.0-8.0. So now we just had another CEA test done and her levels are down to 4.4, great news! We are unsure which of these treatments are responsible, or whether it is all of them combined. The medical oncologist is excited and is wanting another CT scan as soon as she is done with the last 3 Folfiri treatments (another 6 weeks). But her breathing is improving!! It is so nice to finally get some kind of good news in regards to her condition! I was wondering if anyone else out there was doing any alternative treatments and what the results were??
Jennifer and Robert Woodward
Jennifer (patient)
8/16/82
Robert (caregiver-spouse)

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Stage IV MCRC and Alternative therapies

Postby skypup » Sat May 25, 2013 4:13 pm

Hi Robert,
I think there are quite a few of us who do a little extra, and I'm sure others will chime in. I opted out of chemo and am doing an immunotherapy trial with what seems like some benefit and I also take a raft of supplements including cimetidine, metformin, MCP, mushroom extracts and am about to start Celebrex. Like with your wife, I don't know what is helping and what isn't, but I've been relatively stable with some regression of LN mets, decline in CEA, and just recently possible small new liver thingies (boo) for a year and a half. I figure we need to everything we can to play our hand out well. How is your wife feeling these days?

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Stage IV MCRC and Alternative therapies

Postby Cb75 » Sat May 25, 2013 7:40 pm

I'm using a bunch of supplements, have switched to an organic diet, limited sugars and processed foods, etc. the only thing I am doing that may be a little different is mistletoe Ipinjections. There has been some positive studies, especially for colon cancer. However, I am not sure if you can get it in the united states. I am located in Canada.

Carm
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

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abuttigi
Posts: 669
Joined: Tue Feb 08, 2011 9:39 am
Location: SE Michigan

Re: Stage IV MCRC and Alternative therapies

Postby abuttigi » Sat May 25, 2013 8:22 pm

Hey Robert,

I have nothing to add except that I'm a student at Michigan State, so if I can do anything to help let me know! I'm moving to Flint at the end of June, but I'll be around until then!

Angie
Daughter to George (64)
Dx'ed Jan '11 Stage IV CC liver and peritoneum, KRAS mutant
Folfox
Folfori, Avastin
SIRT
Aug '12- progression in liver, mets to lungs
Oct '12- mets to bone, Regorafenib
Nov '12- Hospice
12/10/12- Became my beautiful angel in heaven

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abuttigi
Posts: 669
Joined: Tue Feb 08, 2011 9:39 am
Location: SE Michigan

Re: Stage IV MCRC and Alternative therapies

Postby abuttigi » Sat May 25, 2013 8:24 pm

Cb75 wrote:I'm using a bunch of supplements, have switched to an organic diet, limited sugars and processed foods, etc. the only thing I am doing that may be a little different is mistletoe Ipinjections. There has been some positive studies, especially for colon cancer. However, I am not sure if you can get it in the united states. I am located in Canada.

Carm


O, and yes, you can get mistletoe injections. I knew a woman with metastatic breast cancer who was getting them at the University of Michigan's alternative medicine clinic.

Sorry to post twice!

Angie
Daughter to George (64)
Dx'ed Jan '11 Stage IV CC liver and peritoneum, KRAS mutant
Folfox
Folfori, Avastin
SIRT
Aug '12- progression in liver, mets to lungs
Oct '12- mets to bone, Regorafenib
Nov '12- Hospice
12/10/12- Became my beautiful angel in heaven

rp1954
Posts: 1538
Joined: Mon Jun 13, 2011 1:13 am

Re: Stage IV MCRC and Alternative therapies

Postby rp1954 » Mon May 27, 2013 4:23 am

Mixing alternatives, complementary uses really, and light chemo have worked well at my house. Things like natural COX2 inhibitors, cimetidine, aspirin, PSK, large vit D, vit K2/K3, and of course, iv vit C. Presumably multiple cumulative stresses on the cancer cells with things that are beneficial or compatible with regular cells. Some have used low dose xeloda plus low toxcity alternatives such as those recommended by Life Extension and Quillian's book with good results.

It would be interesting to hear how long and the daily dose of cesium chloride your wife has taken. Both sodium ascorbate and cesium wash out potassium. We buy make up potassium chloride/citrate as well as get potassium levels with the CBC tests.

One has to bear in mind that most measures are percentage improvements and many steps have been necessary. Best wishes.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: Stage IV MCRC and Alternative therapies

Postby jdepp » Mon May 27, 2013 7:57 pm

In the spirit of Maia's review of immunuotherapies, I thought I'd pass along a recent review of the potential clinical value of phytochemicals. It's a fairly exhaustive review with lots of links to individual studies -- thought it might be useful since many colon clubbers are interested in curcumin, egcg, resveratrol etc.


Phytochemicals As Chemosensitizers: From Molecular Mechanism to Clinical Significance

http://online.liebertpub.com/doi/abs/10 ... alCode=ars

This review provides an overview of the clinical relevance of chemosensitization, giving special reference to the phenolic phytochemicals, curcumin, genistein, epigallocatechin gallate, quercetin, emodin, and resveratrol, which are potential candidates due to their ability to regulate multiple survival pathways without inducing toxicity. We also give a brief summary of all the clinical trials related to the important phytochemicals that emerge as chemosensitizers. The mode of action of these phytochemicals in regulating the key players of the death receptor pathway and multidrug resistance proteins is also abridged. Rigorous efforts in identifying novel chemosensitizers and unraveling their molecular mechanism have resulted in some of the promising candidates such as curcumin, genistein, and polyphenon E, which have gone into clinical trials. Even though considerable research has been conducted in identifying the salient molecular players either contributing to drug efflux or inhibiting DNA repair and apoptosis, both of which ultimately lead to the development of chemoresistance, the interdependence of the molecular pathways leading to chemoresistance is still the impeding factor in the success of chemotherapy. Even though clinical trials are going on to evaluate the chemosensitizing efficacy of phytochemicals such as curcumin, genistein, and polyphenon E, recent results indicate that more intense study is required to confirm their clinical efficacy. Current reports also warrant intense investigation about the use of more phytochemicals such as quercetin, emodin, and resveratrol as chemosensitizers, as all of them have been shown to modulate one or more of the key regulators of chemoresistance. Antioxid. Redox Signal. 18, 1307–1348.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Stage IV MCRC and Alternative therapies

Postby Maia » Tue May 28, 2013 12:21 pm

That is so interesting, thank you for posting it, jdepp!

I agree with rp1954, about maybe better calling these 'complementary' therapies, since most people use them as an addition to the conventional treatments (surgery-chemotherapy-radiation), not as an alternative.
I'll try to put some files together, about this, to share.
I think many, many of these complementary approaches (most of them, immunomodulatories strategies) have enormous value, but a careful planning and understanding of how these agents work and interact is needed for both, success and to avoid jeopardizing other treatments.

concernedrelative
Posts: 322
Joined: Tue May 17, 2011 1:33 pm

Re: Stage IV MCRC and Alternative therapies

Postby concernedrelative » Tue May 28, 2013 5:27 pm

FWIW: Just had a visit with our integrative health Doc to make sure there were no contra-indications with my wife's list of supplements vs. the clinical trial protocols. In the interim, we were given a link to a research paper I haven't seen mentioned here before. HTH, Concerned Relative

http://ict.sagepub.com/content/early/20 ... 3642.short

Integrating Dietary Supplements Into Cancer Care


Abstract

Many studies confirm that a majority of patients undergoing cancer therapy use self-selected forms of complementary therapies, mainly dietary supplements. Unfortunately, patients often do not report their use of supplements to their providers. The failure of physicians to communicate effectively with patients on this use may result in a loss of trust within the therapeutic relationship and in the selection by patients of harmful, useless, or ineffective and costly nonconventional therapies when effective integrative interventions may exist. Poor communication may also lead to diminishment of patient autonomy and self-efficacy and thereby interfere with the healing response. To be open to the patient’s perspective, and sensitive to his or her need for autonomy and empowerment, physicians may need a shift in their own perspectives. Perhaps the optimal approach is to discuss both the facts and the uncertainty with the patient, in order to reach a mutually informed decision. Today’s informed patients truly value physicians who appreciate them as equal participants in making their own health care choices. To reach a mutually informed decision about the use of these supplements, the Clinical Practice Committee of The Society of Integrative Oncology undertook the challenge of providing basic information to physicians who wish to discuss these issues with their patients. A list of leading supplements that have the best suggestions of benefit was constructed by leading researchers and clinicians who have experience in using these supplements. This list includes curcumin, glutamine, vitamin D, Maitake mushrooms, fish oil, green tea, milk thistle, Astragalus, melatonin, and probiotics. The list includes basic information on each supplement, such as evidence on effectiveness and clinical trials, adverse effects, and interactions with medications. The information was constructed to provide an up-to-date base of knowledge, so that physicians and other health care providers would be aware of the supplements and be able to discuss realistic expectations and potential benefits and risks.
Crgvr to 37 y.o. DW
3/11 Dx IV w mets lungs, xeloxi/avastin
8/12 switch irino/avastin
4/13 2nd line failed
6/13 imprime pgg trial failed
7/13 stivarga started/failed
9/13 folfiri+erb
Lost her valiant and noble fight 022114

pukalania
Posts: 454
Joined: Mon Aug 06, 2012 2:54 am
Location: Honolulu, Seattle

Re: Stage IV MCRC and Alternative therapies

Postby pukalania » Tue May 28, 2013 8:58 pm

Thank you for starting this thread...it's so hard to naviguate correctlly with all the information out there..here is a bit of what we are doing...we asked our onc about vitamin d and c suplements and he mentioned it may be counteractive to the current chemo regime of xeloda-celebrex hubby is on, also asked about creating alkaine body environment and the response was that our body has enormous buffer and cancer cells PH is mostly in microonment and is due to its own metaboslc condition which can not be altered by simple diet. I haven't asked about some of the other ..."compliments" to chemo but for now we are trying to do all organic, no processed food, everything fresh...and of course there are days if eating a favorite pizza is in order it does happen :) ...the other interesting piece of info that surprised me is that when i asked onc and surgeons if hubby should cut red meat out of diet and they all said all in moderation is ok, since the cancer is already here, not eating red meat won't prevent it, eating red meat won't cause it to grow more...it sounds so contradictory to the literature out there about diets and healthy eating...sometimes i don't know what to follow..or should i say most times..
:shock:
wife 34 dx DH stage IV
Feb10 col res
May10 12 x FOLFOX
Aug12 tumor in sig colon,mets in liver
Aug12 Xeliri Ava
Oct12 xel celebrx rad
Feb13 liver/colon res
Sep13 ill reversal, fistula,
Folfiri SBRT,ADAPT ava
Apr 15 continued growth liver and lungs

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Stage IV MCRC and Alternative therapies

Postby Maia » Wed May 29, 2013 2:18 pm

Posting this here, copying-pasting it from other thread:

3 Biotech (2012) 2:1–15
Recent developments in mushrooms as anti-cancer therapeutics: a review.

Seema Patel • Arun Goyal

woodwards2013
Posts: 24
Joined: Sun Mar 17, 2013 1:23 am

Re: Stage IV MCRC and Alternative therapies

Postby woodwards2013 » Wed May 29, 2013 10:56 pm

As far as the Cessium goes, she takes 1.5 tsp in the morning and the same at night before bed time. She also takes a Potassium supplement due to the leaching from the cessium. Thank you all for the great responses! Lots of new information to sift through! Keep it coming and lets all agree to keep this thread free from the bashing I've seen on other threads! Again Thank you all! :D
Jennifer and Robert Woodward
Jennifer (patient)
8/16/82
Robert (caregiver-spouse)

woodwards2013
Posts: 24
Joined: Sun Mar 17, 2013 1:23 am

Re: Stage IV MCRC and Alternative therapies

Postby woodwards2013 » Mon Sep 09, 2013 2:12 am

Jennifer lost the battle to MCRC on August 26th, 2013 - 2:20 pm, at University of Michigan hospital in Ann Arbor Michigan.
10 days after her 31st birthday. She is survived by her husband and 2 children 12 and 10 years old.
Jennifer and Robert Woodward
Jennifer (patient)
8/16/82
Robert (caregiver-spouse)

Lisahopes
Posts: 328
Joined: Wed Oct 17, 2012 2:09 pm

Re: Stage IV MCRC and Alternative therapies

Postby Lisahopes » Mon Sep 09, 2013 3:06 am

I am so very sorry Robert. You tried so hard for your lovely wife. May she now be painfree and at peace. I wish you and your kids healing at this devastating time.
Daughter to Mom, 65, Stage IV with mets to liver, lungs and peri.
Dx 2006, Stage II.
Regular check October 2011, Stage IV established.
She has had Oxi, Folfox and Xeloda, now Avastin.
Progression.
Mom died on April 5th 2013.

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very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: Stage IV MCRC and Alternative therapies

Postby very worried husband » Mon Sep 09, 2013 7:15 am

I am so sorry for your loss. sincere condolences to you and your children....
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)


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