Opinions on alternative treatments?

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TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Opinions on alternative treatments?

Postby TinaFish » Fri Jul 26, 2019 11:47 pm

So since being diagnosed with stage IV rectal cancer almost two months ago, I have been doing a crazy amount of research. I want to give myself the absolute best chance of beating this monster.

I'm taking artemisinin, cimetidine, 20mg of melatonin at night (melatonin is an antioxidant at low doses, but it's a pro-oxidant at high doses), Beta1 3D Glucan, omeprazole during the 4 days leading up to chemo, and I also signed up with Care Oncology. They're prescribing me metformin, doxycycline, mebendazole, and atorvastatin. I showed my list of meds to my radiology doctor, and he didn't have any concerns.

Does anyone have any opinion on these meds/supplements? Has anyone had a good or bad experience with them?
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

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CRguy
Posts: 10020
Joined: Sun Feb 10, 2008 6:00 pm

Re: Opinions on alternative treatments?

Postby CRguy » Sat Jul 27, 2019 12:04 am

TinaFish wrote:Does anyone have any opinion on these meds/supplements? Yes
Has anyone had a good or bad experience with them?
Yes and No

They're prescribing me metformin, doxycycline, mebendazole, and atorvastatin.

Based on what evidence ?

Just in my own opinion ... I would follow a legitimate scientific protocol with treatments from medical oncologists.
I have 35+ years medical experience as a vet and training in multiple "alternative" modalities.

I chose proven western scientific medicine as my choice.
Please read my bio, I am a 12 year Stage IV survivor.

I understand if you are scared and confused, BUTT please do not get taken in by all the pseudo-science which abounds.

Cimetidine, metformin, atorvastatin and mebendazole all have recognized potentially serious or close monitoring contraindications when used together.
You need to show this list to your Medical Oncologist, not radiation oncologist, and possibly get a an educated opinion from an oncology pharmacologist.

Respectfully, I would not personally deal with the "alternative" group you have mentioned.
JMO

Wishing all the best for you
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Opinions on alternative treatments?

Postby TinaFish » Sat Jul 27, 2019 12:48 am

CRguy wrote:
TinaFish wrote:Does anyone have any opinion on these meds/supplements? Yes
Has anyone had a good or bad experience with them?
Yes and No

They're prescribing me metformin, doxycycline, mebendazole, and atorvastatin.

Based on what evidence ?

Just in my own opinion ... I would follow a legitimate scientific protocol with treatments from medical oncologists.
I have 35+ years medical experience as a vet and training in multiple "alternative" modalities.

I chose proven western scientific medicine as my choice.
Please read my bio, I am a 12 year Stage IV survivor.

I understand if you are scared and confused, BUTT please do not get taken in by all the pseudo-science which abounds.

Cimetidine, metformin, atorvastatin and mebendazole all have recognized potentially serious or close monitoring contraindications when used together.
You need to show this list to your Medical Oncologist, not radiation oncologist, and possibly get a an educated opinion from an oncology pharmacologist.

Respectfully, I would not personally deal with the "alternative" group you have mentioned.
JMO

Wishing all the best for you
CRguy


Thank you so much for that feedback! I'm seeing my oncologist on Monday; I'll definitely be giving her the list of meds.

I read that book, "How to Starve Cancer, Without Starving Yourself," and the author discusses combating cancer metabolically. She says that there are different pathways by which the cancer feeds, and you can starve the cancer by blocking these pathways. Of course, the meds used to block the pathways are often difficult/impossible to obtain without a prescription, so she suggests the help of Care Oncology.

Can you please refer me to some literature that discusses the contraindications of those meds?

You have training in "multiple 'alternative' modalities?" Did you implement any of them? You've got such a success story, I'd love to know if there's anything that you did to increase your chances of overcoming this disease.

I will read your bio right now
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

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betsydoglover
Posts: 973
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Opinions on alternative treatments?

Postby betsydoglover » Sat Jul 27, 2019 7:04 am

Hi Tina -

Based on my personal experience as a 14+ year Stage 4 survivor, I would be very suspicious of the value of this 4-drug addition to your conventional treatment. I looked at their website, and I am always skeptical when I see a treatment that can apply to all cancers.

Metformin, for example, is a type 2 diabetes drug, so it certainly can cause your blood sugar to drop. I know that it is also a drug that interacts with many other drugs - don't know which ones. In addition, if you have a CT scan or MRI with any kind of IV contrast, you have to stop metformin for some period of time before the scan - this is good to know if you decide to keep taking this.

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

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betsydoglover
Posts: 973
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Opinions on alternative treatments?

Postby betsydoglover » Sat Jul 27, 2019 7:13 am

I meant to also add that doxycycline is one of the few drugs that actually becomes toxic rather than just ineffective past it's expiration date - can damage kidneys, so that's also a good thing to know if you take it.
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

Rock_Robster
Posts: 375
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Opinions on alternative treatments?

Postby Rock_Robster » Sat Jul 27, 2019 7:17 am

Hi TinaFish,

For me there’s a bit of a difference between supplements and repurposed (ie off-label) drugs. I have been taking some supplements (except when on chemo or radiation) with the guidance of an oncology naturopath, and with my oncologist’s OK. His view is that these may or may not do any good, but they are unlikely to hurt.

For repurposed drugs I’m more in the camp of the others that have responded so far. My onc is very against me using them for fear that their unknown reactions or side effects may compromise my proven conventional treatment, which so far has worked well (touch wood).

I guess if you were in a position with fewer treatment options the then the risk equation might change. I know there’s certainly some folk on this forum who will disagree with the above, so hopefully you get a range of perspectives.

Cheers
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Pyro70
Posts: 155
Joined: Mon Jan 21, 2019 4:25 pm

Re: Opinions on alternative treatments?

Postby Pyro70 » Sat Jul 27, 2019 2:03 pm

You’re asking for opinions. So I’ll say stay away from pseudoscience. Save your money, and frankly time, for real medicine. Remember alternative medicine that works is just called “medicine”. If you want to go out on a limb, consider clinical trials - at least you’ll be helping to advance the state of science.

But I will admit there is some evidence for metformin, but it’s quite shakey.

Also make sure you’re exhausting all SOC modalities. Do you know your mutations? Do you have any actionable targets (MSI/POLE, Her2, ntrk/alk fusions, TMB)? That’s where I would focus my efforts. Then there are also off label therapies that have shown some initial success (eg regorafenib + nivolumab).

Good luck.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

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CRguy
Posts: 10020
Joined: Sun Feb 10, 2008 6:00 pm

Re: Opinions on alternative treatments?

Postby CRguy » Sat Jul 27, 2019 3:17 pm

TinaFish wrote:Can you please refer me to some literature that discusses the contraindications of those meds?

try WebMD.com or Drugs.com, interaction checkers for a quick overview


You have training in "multiple 'alternative' modalities?" Did you implement any of them?

No, I went with strictly western medical specialists for actual cancer treatments and surgeries
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Opinions on alternative treatments?

Postby TinaFish » Sat Jul 27, 2019 5:28 pm

Wow, you guys know so much more than I do. I'm so lucky to be corresponding with such knowledgeable people. Thank you
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Opinions on alternative treatments?

Postby TinaFish » Sat Jul 27, 2019 5:29 pm

Pyro70 wrote:You’re asking for opinions. So I’ll say stay away from pseudoscience. Save your money, and frankly time, for real medicine. Remember alternative medicine that works is just called “medicine”. If you want to go out on a limb, consider clinical trials - at least you’ll be helping to advance the state of science.

But I will admit there is some evidence for metformin, but it’s quite shakey.

Also make sure you’re exhausting all SOC modalities. Do you know your mutations? Do you have any actionable targets (MSI/POLE, Her2, ntrk/alk fusions, TMB)? That’s where I would focus my efforts. Then there are also off label therapies that have shown some initial success (eg regorafenib + nivolumab).

Good luck.


What are SOC modalities? I'm sorry, there's a lot of jargon that I'm not familiar with. I'm new to all of this
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Opinions on alternative treatments?

Postby TinaFish » Sat Jul 27, 2019 5:32 pm

I'm actually very surprised that no one on this forum has had anything to say about artemisinin. There are so many articles on the internet that exalt it. For example:

https://jeffreydachmd.com/2016/02/artem ... rom-china/
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

radnyc
Posts: 404
Joined: Tue Apr 06, 2010 6:32 pm

Re: Opinions on alternative treatments?

Postby radnyc » Sat Jul 27, 2019 6:32 pm

I find the outright dismissals of non-standard cancer interventions disappointing. She’s obviously under the care of a properly trained and licensed professional and it’s just asking for some advice on some alternatives.

And what is this nonsense about “western medicine”??

Ancient Chinese and indigenous people’s medicines have been curing humans of all kinds of ailments for millennia. And the fact is that many if not most drugs are derived from plants still. Tina, do your research, there are others on here who have extensive experience with alternative methods whom I hope will chime in and help you sort out the scammers out there.

Peace
Al
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

Pyro70
Posts: 155
Joined: Mon Jan 21, 2019 4:25 pm

Re: Opinions on alternative treatments?

Postby Pyro70 » Sat Jul 27, 2019 6:54 pm

TinaFish wrote:
Pyro70 wrote:You’re asking for opinions. So I’ll say stay away from pseudoscience. Save your money, and frankly time, for real medicine. Remember alternative medicine that works is just called “medicine”. If you want to go out on a limb, consider clinical trials - at least you’ll be helping to advance the state of science.

But I will admit there is some evidence for metformin, but it’s quite shakey.

Also make sure you’re exhausting all SOC modalities. Do you know your mutations? Do you have any actionable targets (MSI/POLE, Her2, ntrk/alk fusions, TMB)? That’s where I would focus my efforts. Then there are also off label therapies that have shown some initial success (eg regorafenib + nivolumab).

Good luck.


What are SOC modalities? I'm sorry, there's a lot of jargon that I'm not familiar with. I'm new to all of this


SOC = Standard of care.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Opinions on alternative treatments?

Postby TinaFish » Sat Jul 27, 2019 8:50 pm

radnyc wrote:I find the outright dismissals of non-standard cancer interventions disappointing. She’s obviously under the care of a properly trained and licensed professional and it’s just asking for some advice on some alternatives.

And what is this nonsense about “western medicine”??

Ancient Chinese and indigenous people’s medicines have been curing humans of all kinds of ailments for millennia. And the fact is that many if not most drugs are derived from plants still. Tina, do your research, there are others on here who have extensive experience with alternative methods whom I hope will chime in and help you sort out the scammers out there.

Peace
Al


Cool that we have a contrasting opinion! For all of us who have not overcome this disease, I think that discussion of different opinions and experiences can (hopefully) help all of us to fight harder. Together, and with the help of our doctors and our experiences, we can weed out the bunk/dangerous stuff and determine which, if any, alternative treatments can be helpful to us. It's all about discussion and educating ourselves and each other, right?
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

User avatar
Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Opinions on alternative treatments?

Postby Maggie Nell » Sat Jul 27, 2019 9:37 pm

TinaFish wrote:
Thank you so much for that feedback! I'm seeing my oncologist on Monday; I'll definitely be giving her the list of meds.

I read that book, "How to Starve Cancer, Without Starving Yourself," and the author discusses combating cancer metabolically. She says that there are different pathways by which the cancer feeds, and you can starve the cancer by blocking these pathways. Of course, the meds used to block the pathways are often difficult/impossible to obtain without a prescription, so she suggests the help of Care Oncology.



That's a book I'd not come across before now. Jane McClelland a chartered physiotherapist.....hmmm, I've heard of chartered accountants
of the Crimson Permanent Assurance sailing the wide accountan-sea but chartered physiotherapists?

Jane trained as a Chartered Physiotherapist, gaining a distinction in her exams and winning the Sarah Leeson Memorial Award for the most promising student. After qualifying she worked in the NHS and private practice for 12 years specialising in Neurology and then Orthopaedics when she left the profession to pursue more entrepreneurial endeavours. :shock:

Ms McClelland doesn't seem to have experience with colorectal cancers...

Throughout this time (from 1994 until 2004), Jane battled two aggressive cancers with metastatic spread, both were classed as ‘terminal’
https://www.howtostarvecancer.com/about-jane/

Being an aussie who trained at aussie's longest established private natural health college I support the wise exploration into streams
of treatment that are effective adjuvants to Western science-based approaches. One of my teachers, back in the days, was Ian Gawler
who burst onto the scene with his book, You Can Conquer Cancer in the mid-80s.

These are links to the profiles of two members of this forum who went the alternative route :

vilca11
memberlist.php?mode=viewprofile&u=91246

Roscoe Douglas
memberlist.php?mode=viewprofile&u=99854

Roscoe only made 8 posts in here singing the praises of Loma Linda. He wrote more on his Facebook.


Medical Oncologists - best practices
viewtopic.php?f=1&t=4676&p=34707&hilit=alternative+treatments#p34707

The sticky top of forum CANCER NEWS THREADS is worth foraging through for links.


End of the day, it's your body and you have the inalienable right to make your own decisions. One thing you will learn
from particular people in this forum, past and current, who have solid backgrounds in science and hunt out the research,
is how to apply critical thinking so you make an informed choice that is best for you and in keeping with your values.

Also just remembred lohidoc who was trying out some old cancer medicine that he wrote about on his blog.
https://marcdu4.wordpress.com/


From "LA Story":
Sarah Jessic Parker: "You wanna go and get a high colonic?"
Steve Martin: "An enema?"
SJP: "Yeah, it really clears out your mind."
SM: "I think they're doing it wrong".
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
July 2019 : pending liver U/S, colonoscopy
rut roh


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