Need thoughts

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Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Need thoughts

Postby Green Tea » Sun Jun 09, 2019 7:03 am

Jen43 -
When will you be seeing your oncologist? Earlier you said that it would be "soon".
Afterwards, when you have some time, would you then be able to let us know how the meeting went?

Thank you
Last edited by Green Tea on Sun Jun 09, 2019 11:47 pm, edited 2 times in total.

rp1954
Posts: 1520
Joined: Mon Jun 13, 2011 1:13 am

Re: Need thoughts

Postby rp1954 » Sun Jun 09, 2019 5:27 pm

Pyro70 wrote:... and you won’t find it in any national guidelines (in the US or elsewhere)…. but never seems to provide advice on actual new developments in cancer care that are really revolutionizing how we treat patients (immunotherapy, targeted therapies, etc).

In addition to MSI testing I would insist on getting NGS molecular profiling of your cancer (this will likely include MSI). Getting NGS at diagnosis is really SOC now. In your case i might also consider getting a circulation tumor DNA blood test. The science on ctDNA isn’t settled. But if it comes back negative, it’s unclear what it means. But if you get a positive, I would definitely do chemo. Now if you’re going to do chemo anyways, probably no need for a test.

Sorry Jen43, I'm being repeatedly trolled by P70 worse than any pharma rep, or the most rabid onc I've met. He's wrong on a number of details, although we obviously have "less standard" tests, treatment, and advantages. CA199 is used in a number of countries, as well as some of the other therapeutics and tests. I am mildly supportive with comments of some advanced therapies here that we simply never needed, we did better at home. I believe most or all of the recent immunotherapies and targeted therapies that P70 refers to are for mCRC and stage 4 patients, and very expensive off trial.

In fact, there are a lot of stage 2s that suffered considerably more side effects after 4-6 months SOC treatment than my wife after 4 - 6 - 8 years every day. This where my wife initially almost flunked 5FU without the heavy stuff with inadequate standard advice about folic acid and folates, not to mention actual survival at 8 years in good shape, better condition liver, hands and feet than many 2s and 3s.

I've supported initial genetic profiling before, for those who can arrange payment or insurance. I will point out some of the other countries' additional initial blood tests (e.g. CA199, AFP, LDH; ESR or hsCRP) cost us under $100 and aided us in comparing trials, papers and other patients results over the years, and turned to be more useful for us, so far.

The board here doesn't know for absolute sure yet that you are appropriate for any 5FU based therapies, but 5FU based tx is usually the case.
My wife's 5FU treatment version probably has the lowest 5FU footprint on liver and general side effects but is typically reserved for fragile cases overseas. We just used it much more aggressively with mild and supportive adjuncts measured for her personally.

I'm going to suggest that P70 take his differences, grievances and prejudices back to our previous general discussion at Immunotherapy in Switzerland, without further burdens to Jen43.
Last edited by rp1954 on Mon Jun 10, 2019 7:03 am, edited 2 times in total.
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

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

Re: Need thoughts

Postby Maggie Nell » Sun Jun 09, 2019 6:12 pm

Looks like the Medical Medium Liver Rescue has *borrowed* from the much earlier
publication of an Australian doctor who travels under the name of Dr Sandra Cabot,
The Liver Cleansing Diet and other books in the mid-90s.

Quack Miranda Warning

Anthony William has no medical expertise, but he communicates with spirits and gives medical advice.
Since age four, he shocked his family by announcing that his symptom-free grandmother had lung cancer
(which medical testing soon confirmed).

:lol: :lol: Little Tony gave his granny the 'evil eye' - what a strega!!


I crack myself up.........
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

Rock_Robster
Posts: 280
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Need thoughts

Postby Rock_Robster » Mon Jun 10, 2019 5:02 am

Maggie Nell wrote:Quack Miranda Warning

Anthony William has no medical expertise, but he communicates with spirits and gives medical advice.
Since age four, he shocked his family by announcing that his symptom-free grandmother had lung cancer
(which medical testing soon confirmed).

Yeah I consider myself to be pretty heavily on the evidence-based side, and I found this book pretty tough to get through.

In defence of my countrywoman, at least Dr Cabot is an MD, though this doesn’t automatically make any of her claims credible either of course.
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
pT3pN1apM1a; 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
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

jens22
Posts: 1007
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: Need thoughts

Postby jens22 » Mon Jun 10, 2019 8:10 am

I was stage 3 and I remember my surgeon saying he was glad because if I was stage 2 he would have to fight for me to have chemo. With the higher risk factors Chemo is probably in your future more than not. Once you have the resection and all cancer is removed the chemo is " Mop up " for any cells that may have escaped. I bless my chemo every day. Cancer free gong on 9 years
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 7 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 54 Mom of 3 boys.

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

Re: Need thoughts

Postby Maggie Nell » Mon Jun 10, 2019 3:38 pm

Rock_Robster wrote:
Maggie Nell wrote:Quack Miranda Warning

Anthony William has no medical expertise, but he communicates with spirits and gives medical advice.
Since age four, he shocked his family by announcing that his symptom-free grandmother had lung cancer
(which medical testing soon confirmed).

Yeah I consider myself to be pretty heavily on the evidence-based side, and I found this book pretty tough to get through.

In defence of my countrywoman, at least Dr Cabot is an MD, though this doesn’t automatically make any of her claims credible either of course.


Back in the mid-80s, I was part of a health & wellbeing group that was conducting nutritional research and Dr Cabot was also part
of that group, as were scores of qualified experienced health professionals. One of the products that came onto the market was the
line of Musashi amino acids.

The following year, I began studying a BA in Applied Science, naturopathy major, and did two years of Clinical Nutrition and had
a bit of contact with the orthomolecular nutrition crowd, established by Dr Ian Brighthope. I get a bit peeved with folk like Anthony Williams,
going to have to give him an astral smack upside the head. :evil: :lol:
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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