A cautionary tale

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risto
Posts: 54
Joined: Wed Jan 06, 2016 2:28 am
Location: USA

A cautionary tale

Postby risto » Sun Jun 17, 2018 3:37 pm

A stage IV colorectal cancer patient died earlier this month. He was keeping a blog called http://mikeyversuscancer.com. I don't know whether he was a member of this forum or not. His blog documents his decision at one point in his journey, to forgo evidence based medicine and instead go with naturopathic treatment. While it is anyone's right to make their own decisions about treatment, and there is no certainty that he would have lived any longer or with better quality of life by using evidence based medicine, he probably would have.

What makes his case so tragic is that he leaves behind a wife and two children who are now hurting financially, based on his treatment decision. The quack treatments were not covered by insurance because they are not proven effective. Now his widow is encouraging people to donate to a gofundme site to help fund the daughters' college education, which perhaps they would not have needed to do if the money hadn't been wasted. I realize that even treatment for evidence based medicine can take its financial toll, but they apparently had good insurance so this would have been manageable.

You can see her posts on facebook.

The cautionary tale here, is that when patients pursue unproven or quack medicine that require payment out of pocket, they may not only be hurting themselves, but also their families. There are many naturopaths and other quacks out there that are trying to separate patients from their family's money with little to nothing in return and preying on the vulnerability of cancer patients. You can even see some of them linked to Mike's blog. These sites only show the survivors. Here is one that didn't make it, and anyone considering this should know.
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury

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LPL
Posts: 411
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: A cautionary tale

Postby LPL » Sun Jun 17, 2018 4:37 pm

risto,
Thank you for your post.
Very Sad to hear what happened to him & his family!
...forgo evidence based medicine and instead go with naturopathic treatment.

I do wish though that more hospitals could have a naturopath included in the team. It does feel like oncologist say No to all ‘things’ because they lack sufficient knowledge about ‘other things’ outside their profession. This might make patients not tell.. experiment on their own... and that is also wrong. Not everone has the knowledge like for example member rp1954.
To be able to compliment conventional medicine with naturopathic medicine is what I feel would be good and I personally would love it if they had a naturopath (that we could talk to) at the cancer center where my husband is treated. They don’t :-(
But risto you say: “naturopaths and other quacks” so does that mean you are against anything added to conventional treatments?
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

SteveNZ
Posts: 142
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: A cautionary tale

Postby SteveNZ » Sun Jun 17, 2018 5:51 pm

risto wrote:..... lived any longer or with better quality of life by using evidence based medicine, he probably would have.

What makes his case so tragic is that he leaves behind a wife and two children who are now hurting financially, based on his treatment decision. .......

I am sorry to hear that.
I think that you hit on the key. Evidence based medicine means the good results, the poor results and everything in between are monitored over time and wisely (and if I may add truthfully) shared within a medical community that also has the wisdom of critical interaction. I do not know enough of these alternatives and I have the impressive input from my lovely wife who prefers natural remedies to health issues, where possible researching things well.

INTERESTING- Is there a place for medication that also offers a 'placebo effect' to cancer patients? A healthy mind I am sure is also a key issue in fighting cancer. There are many ways to generate a healthy mind.
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

Rikimaroo
Posts: 151
Joined: Tue Dec 20, 2016 8:48 pm

Re: A cautionary tale

Postby Rikimaroo » Sun Jun 17, 2018 6:58 pm

I am very frustrated at seeing the holistic doctors conning people into thinking that they can cure your cancer. It leads so many astray and it makes decision making so difficult when it comes to us folks who are battling cancer.

They have no proven history of success, like the medical profession. If they really want to help everything they do should be free, since none of it is proven.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

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Maggie Nell
Posts: 843
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: A cautionary tale

Postby Maggie Nell » Sun Jun 17, 2018 7:55 pm

What could be taken into account, is that before this man received a diagnosis of
cancer, he had a history of making poor decisions and wasn't so good at the bigger
picture/future scenario. There are many people like that.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

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muskokamike
Posts: 209
Joined: Tue Feb 25, 2014 4:38 pm

Re: A cautionary tale

Postby muskokamike » Sun Jun 17, 2018 8:50 pm

I have told this story on here before

When I was dx four years ago a work colleague that I had dealings with was also dx with the exact same cancer. We saw each other weekly during the summers since he was in the marine business. I had my surgeries and was doing well but he refused surgery due to the fact his doctor told him he most likely would need a permanent colostomy. I was dumbfounded as to why he was so against the bag after all he was in his late fifties and how much crawling under and fixing boats did he really want to do going forward. "You could hire someone to do the work" I told him over and over. Finally I just told him flat out "It is either the bag or a box if you don't have surgery" He was a smart man but made stupid decisions and he still refused surgery. After a while a spot appeared on his lung and he was confident that doctors would just zap it away also the fact he had given up his 4 cans a day Pepsi habit would also chase the cancer away since he believed that cancer thrived on the sugar from his sodas. He was also buying overpriced natural potions that were going to stabilize then destroy his cancer cells. Unbelievable what lies are on the internet. Anyways the marina was all boarded up last summer, I just thought maybe he retired and I kind of forgot about him till the other day when I found his son on facebook to inquire about how he was doing. He had been housebound all summer and passed away last Halloween after a couple weeks with extreme pain in the hospital. For him his refusal to listen to doctors cost him dearly. I was dx on Halloween and I took the bag he took the box and passed on Halloween. Moral of the story...Listen to your doctors and do what they say. You can live with a bag and have a normal life. Most important stay away from internet quacks that will sell you overpriced potions to cure cancer.
53M Dx rc10/31/13
and a huge WTF?....then
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR - pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5
2.6 Sept 18
0-4 normal

hawkowl
Posts: 116
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: A cautionary tale

Postby hawkowl » Mon Jun 18, 2018 12:03 am

Such a sad story. I was a physician before my diagnosis and unfortunately saw this over and over again...although the stakes are a lot higher when you are dealing with cancer
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: A cautionary tale

Postby Atoq » Mon Jun 18, 2018 1:00 am

I had several people telling me that they would never let the surgeon cut them or they would never take chemo , but rather go for the natural approach. What they don’t see is that anything at the end is chemical, there is no dichotomy between «natural» and «chemical».

Some natural remedies are used in official medicine in other countries like for example Ganoderma lucidum and a lot of natural extracts are being studied because they can kill cancer cells in vitro, such as resveratrol or curcumin. But I would only trust a certified doctor to prescribe them as support to chemo or after chemo is finished.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

radnyc
Posts: 306
Joined: Tue Apr 06, 2010 6:32 pm

Re: A cautionary tale

Postby radnyc » Mon Jun 18, 2018 7:45 am

I believe that suppplements, meditation and other non “science based” alternatives are very useful and have helped enhance, ameliorate and yes helped people stay healthy and most probably cured some. Some of these are things that have been used for millennia. Yes, they need to be used as complimentary tactics to the standard method of care which is the most effective way to deal with the disease. Personally I’m certain that these alternatives have helped me remain cancer free and pretty healthy for a 55 year old. No I wouldn’t have made it without the surgeries and chemo, mostly the surgeries though. However had I been diagnosed stage 4 with little chance of survival with “science based” medicine you bet I’d be full on trying alternatives, because you never know.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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betsydoglover
Posts: 934
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: A cautionary tale

Postby betsydoglover » Mon Jun 18, 2018 5:20 pm

I'm not at all saying that "natural" methods cannot help, but one should be aware of internet sites / purveyors who have highly detailed explanations of what needs to be done, and then it turns out that their special supplements will do the job - entire books even. (If it smells like snake oil...……….) I never sought the help of a naturopath - wasn't necessary for me. But as I understand it they can be a big help, often in conjunction with conventional treatment. A good naturopath is not selling their recommended supplements and they are educated - they recommend things and work with the patient. It's called complementary medicine for a reason - in my opinion good "natural" medicine works in concert with "conventional medicine" - at least some of the time.

Whether planning on conventional medical treatment or alternatives or both, when surgery is possible, that should always be the first approach. All treatments have a much better chance if a visible / primary tumor is removed.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

rp1954
Posts: 1382
Joined: Mon Jun 13, 2011 1:13 am

Re: A cautionary tale

Postby rp1954 » Tue Jun 19, 2018 2:44 pm

Gosh, from the angry verbiage and denunciations, I thought this guy was going to be a real refusenik.

Nope, he did 9 rounds of folfox-Avastin, got hammered; did Erbitux, got hammered; did Vectibix and had some success; did some rounds of surgery including Hipec, and then eventually, Stivarga. I do think he over read the negative aspect of the (now old wrt Avastin?) "2.1 month median improvement in survival" blurb; see Stephen J Gould's essay about "the median isn't the message".

One could even speculate to what degree he was a victim of oxaliplaten and over eager or inattentive oncology, that spooked him away from most chemo for a while. Certainly I wish someone could have said to him, "Well, we have a nice chemo," along with the CAM chemistry. Certainly not in the USA with the FDA. Because of our pharmas' total market domination in education and medicine as well oncologists' long standing hostility to oral chemo from the 80's, there is very little familiarity with UFT and its intelligent use. Ditto celecoxib, and I didn't see his mention of aspirin either.

You can see her posts on facebook.

Nope, not anymore. Wouldn't be surprised if someone informed her about this very thread and she took it down lest some unbalanced person bother her. PS. If anyone has notes or a copy, I'd be interested to know more.

The cautionary tale here...

...is to please be respectful to those who have shared their story and perhaps avoid injecting derogatory side issues like the CAM side links in the same thread. We need all the insights we can get, even if some that know so much better, don't.

CTCA did try to guide him back to some chemo, even pressured him, along with the naturopathic treatments. I for one think he did get benefits from his CAM treatments but didn't have enough information and (legal) options to optimize back to a better result, perhaps including oral immunochemo options. Again, "many thanks" to the FDA on UFT type of generics /sarc.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

stu
Posts: 877
Joined: Sat Aug 17, 2013 5:46 pm

Re: A cautionary tale

Postby stu » Tue Jun 19, 2018 3:51 pm

Hi rp1954,
I have to say your own input is quite incredible with your wife and I frequently find myself in quite admiration . I am not sure what your own background was or was it a massive learning curve when you entered a “ needs must situation” . However at the same time I would never be able or confident enough to do any of that .
I was even thrown when my mum’s oncologist cautioned the amount of folic acid from green veg during chemo due to interactions . You have or acquired a lot of knowledge and I genuinely do believe it has helped your wife . It’s very impressive .
For me once a product is advertised and marketed it has a responsibility to do what it claims.
It would be great to see if there is room for more complimentary medicine but in a responsible fashion .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

boxhill
Posts: 122
Joined: Fri Apr 06, 2018 11:40 am

Re: A cautionary tale

Postby boxhill » Tue Jun 19, 2018 4:13 pm

I'm sorry, what is UFT? Can't find it in the terminology thread.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

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mobrouser
Posts: 96
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: A cautionary tale

Postby mobrouser » Tue Jun 19, 2018 7:57 pm

rp1954 wrote:Gosh, from the angry verbiage and denunciations, I thought this guy was going to be a real refusenik.

Nope, he did 9 rounds of folfox-Avastin, got hammered; did Erbitux, got hammered; did Vectibix and had some success; did some rounds of surgery including Hipec, and then eventually, Stivarga. I do think he over read the negative aspect of the (now old wrt Avastin?) "2.1 month median improvement in survival" blurb; see Stephen J Gould's essay about "the median isn't the message".

One could even speculate to what degree he was a victim of oxaliplaten and over eager or inattentive oncology, that spooked him away from most chemo for a while. Certainly I wish someone could have said to him, "Well, we have a nice chemo," along with the CAM chemistry. Certainly not in the USA with the FDA. Because of our pharmas' total market domination in education and medicine as well oncologists' long standing hostility to oral chemo from the 80's, there is very little familiarity with UFT and its intelligent use. Ditto celecoxib, and I didn't see his mention of aspirin either.

You can see her posts on facebook.

Nope, not anymore. Wouldn't be surprised if someone informed her about this very thread and she took it down lest some unbalanced person bother her. PS. If anyone has notes or a copy, I'd be interested to know more.

The cautionary tale here...

...is to please be respectful to those who have shared their story and perhaps avoid injecting derogatory side issues like the CAM side links in the same thread. We need all the insights we can get, even if some that know so much better, don't.

CTCA did try to guide him back to some chemo, even pressured him, along with the naturopathic treatments. I for one think he did get benefits from his CAM treatments but didn't have enough information and (legal) options to optimize back to a better result, perhaps including oral immunochemo options. Again, "many thanks" to the FDA on UFT type of generics /sarc.


Thank you rp1954 for saying what I wanted to say. I debated posting my thoughts last night, which were similar to yours, but thought that maybe as a newbie here they might be taken as argumentative.
I read Mike's blog yesterday from start to finish. It was obvious he had done a fair amount of research into alternative therapies.
One other point that may not have been mentioned, from what I understood from the blog some of those therapies would have been covered by insurance if he had taken them in conjunction with standard chemo treatment.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

rp1954
Posts: 1382
Joined: Mon Jun 13, 2011 1:13 am

Re: A cautionary tale

Postby rp1954 » Thu Jul 26, 2018 9:51 pm

boxhill wrote:I'm sorry, what is UFT? Can't find it in the terminology thread.

I missed this earlier. Maybe O Stoma Mia can add UFT and UFUR, branded names for the 5FU prodrug, tegafur-uracil, to her updated abbreviations and acronyms list. UFT was the original branded drug from Japan, fashioned from the pharma abbreviations for tegafur, FT, and U for uracil.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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