Long term survivor

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JDinNC
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Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Long term survivor

Postby JDinNC » Sun May 04, 2014 11:05 pm

Alternative supplements don't seem to be mentioned much. I would like to know if any of our long term survivors used something after treatment that they felt helped with their NED. After doing my chemo treatment, I was lost as to what to do to keep my body clear of cancer.
I read to stay away from white sugar since cancer loves glucose. And try to get my PH up to about 7.0 or 7.5 because cancer can't live in an alkaline environment. I'm eating healthy, organic as best possible.
I had to come up with my own protocol of supplements and herbs, since there no herbalist within hours from where I live.
I read, researched and noted what everything did to help stop cancer. I came up with: IP6, vitamins, grape seed extract, resveratrol, querecetin, metformin, calcium, astragalus, krill oil, probiotic, AHCC, turmeric, D3 and mushrooms. Does this all sound about right, should there be anything more or less. I'm doing all of this out of hope and faith, though I know they might not even help.

Thank you for any of your thoughts

Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

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singingholly
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Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Long term survivor

Postby singingholly » Sun May 04, 2014 11:39 pm

This is an interesting question, really, hope to read interesting answers soon! Meanwhile I have a couple of doubts... First one: did you ask some docs about taking metformine?! This is a drug used for diabete, not a joke... Second one: I wonder why avoiding sugar sould help if you have a normal metabolism... If the level of glucose in blood is stable and normal whatever you eat what is the advantage? For example: my glucose level is always around 70 or 80, whatever I do: eating sweets, vegetables, meat, pasta... or even not eating at all, so what's the difference?
Thanks
Holly
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

robinkaye
Posts: 374
Joined: Fri Nov 11, 2011 10:03 am

Re: Long term survivor

Postby robinkaye » Sun May 04, 2014 11:56 pm

Holly, I think avoiding sugar and other starchy or processed carbs helps to stop inflammation which is considered the cause of some cancers any many other ills. Some foods are anti-inflammatory while others cause inflammation. Just so happens that all the 'good' stuff is really bad. I know that during the carb laden holidays I can hardly walk up a flight of stairs, my knees hurt so bad. A couple days of salads and protein and I'm fine. I know its anecdotal but my body screams at me when eating the wrong foods.
People talk about sugar feeding cancer on one hand and inflammation on the other when I believe we should look at one being a cause of the other.

Robin
Husband has RC Stage IIIC
Chemorad 9/28-11/07
2 rounds FOLFOX to get rid of iliac LN
LAR Surgery 1/17 ileostomy
presacral abscess 2/1 - 3/27
FOLFOX began 4/5 - 6/15
another presacral abscess 6/30-8/10
Reversal 9/11
10/15 fistula with drain

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Long term survivor

Postby singingholly » Mon May 05, 2014 12:39 am

Oh, yes... This fact of food-induced inflammation I can understand... And I agree, since I got ill I feel my body needs much stronger than before, even about feeding.
Thank you Robin.
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Long term survivor

Postby Ron50 » Mon May 05, 2014 2:14 am

I tend to go the other way. I had a cancer that my doctors said would kill me . As it turned out it didn't but I have had some pretty ordinary health thanks to the chemo I had. I figure in moderation everything is fine . When I enter the supermarket I revert to being a hunter gatherer , except I tend to buy stuff that is in season because it is cheaper . I take metformin but only because I have type two diabetes and that was due to high dose prednisone for 18 months. I have not seen my cancer return in over fifteen years. I don't over eat sugar but that is thanks to diabetes not cancer. I don't drink or smoke . I'm on drugs that are just about suicidal for a cancer survivor. I was on methotrexate for years and now I am on cyclosporine ,immuno - suppressants don't come much stronger. I have my scopes at regular intervals as suggested by my GI and once a year off to the sun ca clinic for a check. I guess some of us just fall thru the cracks. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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dianetavegia
Posts: 2722
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Long term survivor

Postby dianetavegia » Mon May 05, 2014 7:28 am

Have you read up on Modified Citrus Pectin? http://www.dreliaz.org/?s=MCP&x=0&y=0

Vit. D3
2 full strength aspirin daily
Centrum Silver Ultra for women
Calcium
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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sun-sparkled waves
Posts: 83
Joined: Wed Jan 10, 2007 4:27 am
Location: Canada

Re: Long term survivor

Postby sun-sparkled waves » Wed May 28, 2014 12:01 am

Hi there, I'm coming up to my 20 year cancerversary. I remember taking essiac tea, and lots of vitamins, no alcohol or red meat for a couple years post diagnosis. Colonoscopies every year. Turns out I have Lynch syndrome, so always watching and waiting.
Ron 50 ...I also have had to take Methotrexate recently, for autoimmune skin disease. I wonder if the autoimmune disease may be a long term effect of 5-FU and Levamasole that was used in 1994-95 for my colon ca. I'm off the MTX now, and so far no skin relapse. Yes, it's scary taking an immuno-suppressant, but it saved my skin.
Stage 2b in ascending colon age 34
Right Hemicolectomy 1994
5 FU and Levamisole for 6 months
Lynch Syndrome mutation MLH1
Bilateral Salpingectomy 2010

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Long term survivor

Postby Ron50 » Wed May 28, 2014 1:43 am

Hi Sun -sparkled waters,
I too was one of the 5Fu // levamisole brigade. I had nine tablets every second week for three days after chemo. I have a feeling it either killed you or cured you. You are only one of two others I know who had levamisole. You are at twenty ,Virginnia in New-Zealand is at twenty and I amd out to 15 +. virginnia has a lot of problems including auto-immune diseases and I have psoriatic arthritis .type two diabetes and nephrotic syndrome of the kidneys. I have had three kidney biopsies and all show problems but nothing that relates to any common kidney diseases. Levamisole was banned in the US for human use around 2000 but I see it used at times in children with kidney disease. I am officially at the mercy of an auto-immne disease of an unknown nature and cause. I mention levamisole and I get blank looks when talking to doctors. All my nephrologist will say about is that it is an interesting drug. The cyclosporine is currently holding my protein loss at two grams a day. I have lots of problems with neuropathy and the base of my spine which kind of crumbled then fused. I have just tried 15 days on fentanyl patches, I left the last patch on to help wean me off it. Another nasty drug. All the best and congrats on the 20 yrs. Ps I hated mtx it used to make me feel just like 5fu did. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

kiwiinoz
Posts: 1146
Joined: Thu Jan 03, 2013 11:44 pm

Re: Long term survivor

Postby kiwiinoz » Wed May 28, 2014 3:07 am

sun-sparkled waves wrote:Hi there, I'm coming up to my 20 year cancerversary. I remember taking essiac tea, and lots of vitamins, no alcohol or red meat for a couple years post diagnosis. Colonoscopies every year. Turns out I have Lynch syndrome, so always watching and waiting.
Ron 50 ...I also have had to take Methotrexate recently, for autoimmune skin disease. I wonder if the autoimmune disease may be a long term effect of 5-FU and Levamasole that was used in 1994-95 for my colon ca. I'm off the MTX now, and so far no skin relapse. Yes, it's scary taking an immuno-suppressant, but it saved my skin.



What is the auto immune skin disease? Not Psoriasis is it? I was on MTX and Stelara for Psoriasis and I believe that it was responsible for the metastasis, and my Psoriasis has come back since I stopped Chemo but I am very against the idea of further immune suppressing medicines.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Long term survivor

Postby Bev G » Wed May 28, 2014 4:09 am

I have a completely unsubstantiated theory that autoimmune disease may help suppress cancer/or metastasis of cancer. I base this upon a couple of things. Autoimmune diseases occur when the body recognizes "self" as "other". In 1966 my body recognized the islet cells (insulin producing cells) in my pancreas as "other" and destroyed them, and thus I have had type 1 diabetes since then. In 1990, my body recognized my thyroid as "other" and I went into complete thyroid failure (Hashimoto's thyroiditis, another autoimmune disease). In the early 2000s I developed Reynaud's syndrome, an autoimmune vascular phenomenon.

Then, in 2009, I was diagnosed with stage IV colon cancer. Two of 22 nodes were positive, but already burned out and necrotic, before I received any treatment. I had one isolated metastatic lesion in the caudate lobe of my liver which was removed in 4/9, all surrounding nodes were negative and I've never had any new cancer since then. I've often wondered if my body just over-reacts to anything weird that happens to be around and tries to kill it (including "self") Of course this theory doesn't explain how I got cancer in the first place, but just may explain how I am a relatively "long term" survivor at this point.

The incidence of type 1 diabetes in the general population is 1% (type 2 incidence is much higher than this, but type 2 diabetes is NOT an autoimmune disease). Since I have been on this board (>4 years) as far as I know only one other member has type 1 diabetes. That is far, far fewer than 1% of our members, and something I really wonder about. I'd be very interested if JSCHO happens to see this and has any comments, as he is a true scientist.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: Long term survivor

Postby dianne052506 » Wed May 28, 2014 6:35 am

Ron50 wrote: I have just tried 15 days on fentanyl patches, I left the last patch on to help wean me off it. Another nasty drug.

Ron,
Why do you say fentanyl is nasty? I've just started using fentanyl patches. Today is the 12th day in a row with them. They worked fine for the first few, then I did something that aggravated the sacroiliitus (side effect from radiation), and Friday-Sunday needed 10/325 hydrocodone on top of the patches. I kind of like not constantly having to keep up with pills throughout the day, plus not having to manage the GI slowdown I know I'll get with oxycontin or hydrocodone.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Long term survivor

Postby Ron50 » Wed May 28, 2014 8:26 am

Hi Di Opiates and I do not get along at the best of times , I could not take morphine when I had my cancer op. I tried really hard with the patches. I have now tried norspan and fentanyl. I believe norspan is a morphine based patch and fentanyl is a synthetic opiate. It is extremely powerful. There have been several deaths reported in Australia last year from drug users soaking the patches in boiling water and injecting. I had problems with the application . You aren't supposed to shave where you put it as it can cause overdose, you can't wash in soapy water and apply ,you can't use spirits to clean up the site. I had one crinkle up and let water in ,that increases the dose ,one just fell off. The last two I reckon I got the whole dose the first day and finished up having the worst nightmares I have ever experienced the ones that refuse to stop even when you wake up. Obviously I am not a candidate for opiates , that is not to say they are not for you.Ron
Bev I got my type two diabetes sort of second hand as a result of auto-immune disease. My first nephrologist took a kidney biopsy but he did not get enough. He was convinced I had amyloidosis. I don't think he appreciated how rare that is, so most of the biopsy was wasted. He then assumed it must be minimal change disease and put me on 75mg daily of prednisone for 18 mos. It was after that I was put on 1000mg daily of metformin for type 2 diabetes. Last year my protein loss jumped from just under three grams a day to over seven. My nephrologist had no option but to put me on ciclosporin. It has me at around two to three grams a day. The cyclosporine does not control the pain from the psoriatic arthritis and seems to increase the neuropathy pain. I have had a neurologist do nerve conductivity tests that resulted in a dx of moderate to severe motor-sensori peripheral neuropathy. No cause proven no treatment offered . With the state my kidneys are in I can take very little in the way of pain relief, nsaids are a no go as are asprin based drugs. I have been trialed on lyrica, Neurontin ,endep , sulfasalazine and arava. None proved suitable due to liver problems. I noticed you mentioned earlier you had problems after gall bladder removal. I was dxed with bile salt mal absorbtion after mine went. One 4grm sachet of questran lite each morning with fruit juice solved my bathroom issues. It binds the bile salts and cholesterol and takes them through your system without causing any problems- Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Long term survivor

Postby JDinNC » Wed May 28, 2014 10:26 am

There's a debate on another tropic regarding "miracle cures", this had me thinking and researching. I came across an article called " The American Cancer Society admitted that untreated cancers often go away naturally". Now before you all start jumping down my throat, i only want to discuss a portion of the article. It was stated that after chemo treatment it was found that the cancer would come back sooner and strong. The ironic part about this, as i'm reading this article, my husband come out to say that our neighbor and him are going to respray the road weeds since they are coming back with vengent after spraying them a month away.. This got me thinking...have any of you ever thought why did I do chemo because now my health has gone down from there? I was very healthy at the time of my diagnose other then consitpation and blood in my stool. I had a colon and a single met. lung resection where both surgeons said i was cancer free. At the start of my Chemo treatment I had a PET scan.. no cancer, near the end of my treatment PET scan no cancer and the end of my treatment PET scan..no cancer. So did I really need to have chemo...and what are my health risk now that I did. I notice alot of you were NED after your chemo..but by 3 or 6 months the cancer showed up at new spots. Did you contribute this to the chemo....did yours come back with vengent. Was it good enough just to have had the tumors and clear margins remove and just wait to see what developes in the future. What are your thoughts?

By the way..the article was interesting..did you know that during trial testing , if a person dies during treatment he is not counted in the survival stats..it's called "cooking the books" it helps with getting FDA approval.

Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

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sun-sparkled waves
Posts: 83
Joined: Wed Jan 10, 2007 4:27 am
Location: Canada

Re: Long term survivor

Postby sun-sparkled waves » Wed May 28, 2014 4:28 pm

Hi Kiwiinoz.... My dermatologist could not give me a diagnosis other than dermatitis. I thought it was psoriasis, and it certainly responded to MTX.
Bev... I have the same feeling about autoimmune disease attacking cancer cells. Could also be a virus mimicking a cell, and causing the immune system to get confused. I like your theory.
Ron50... Yes, it is difficult to find info on Levamasole. It was in the news, a few years ago, causing immune system problems and skin necrosis in cocaine userers. Apparrently some cocaine was being mixed with Levamasole.
JDin Nc... I don't know if the chemo did me any good. I trusted my Oncologist to do his best with what knowledge and experience he had, at that time.
Stage 2b in ascending colon age 34
Right Hemicolectomy 1994
5 FU and Levamisole for 6 months
Lynch Syndrome mutation MLH1
Bilateral Salpingectomy 2010


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