Surgery or not? And Doctors in MD Anderson

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dandan
Posts: 8
Joined: Tue Mar 19, 2019 9:01 pm

Surgery or not? And Doctors in MD Anderson

Postby dandan » Tue Mar 19, 2019 9:32 pm

My wife was diagnosed with Stage IV colon cancer on the right side right after our 2nd child was born in May 2018. The cancer has spreaded to the liver, lymph nodes and some other places in her belly. The oncologist said there's no point of having surgery. She can't have radiotherapy either.

She had been on Chemo, first 5FU + oxaliplatin, which had great results. Tumor on liver is not visible on CT, lymph nodes and main tumor shrunk until she became allergic about 9 rounds later. Then 5FU + Avastin. Liver and lymph nodes seem to be ok. But the main tumor started growing from 4.5x2.7cm to 4.9x3.0cm after about 3 months, which is "kissing" the ovary. CEA rises from 4.3 to 5.9 too.

Her oncologist still didn't recommend surgery. But the surgeon said surgery is an option now, and suggested to do it ASAP. According to the surgeon, he will not touch the liver and will remove the ovary and sweep lymph node if needed.

We'd like to seek a 2nd opinion about the surgery in MD Anderson, but kind of being pressed by time. Would someone kindly recommend some names, ie oncologist, surgeon, radiotherapy doctors? Thank you.

Pyro
Posts: 289
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Surgery or not? And Doctors in MD Anderson

Postby Pyro » Wed Mar 20, 2019 11:47 am

So, MD Anderson. It’s a great place but that’s not how my MDA experience worked, I.e. requesting doctors. You apply through your local oncology office, there is no guarantee they will see you. If they agree, you’ll be assigned doctors, not pick them. I would say they have some of the best surgeons that exist. Dr Shariqi (sp?) was my Onc, Dr Vauthey was my liver surgeon and Dr Bednarski was my colon surgeon. I had a plastic surgeon and other doctors but I don’t remember their names.

Surgery is the only way to get rid of it, however, there is no chemo before or after surgery for a few months. Definitely a concern of an oncologist, not so much a surgeon.
Last edited by Pyro on Wed Mar 20, 2019 12:51 pm, edited 1 time in total.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

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

Re: Surgery or not? And Doctors in MD Anderson

Postby rp1954 » Wed Mar 20, 2019 12:01 pm

My view in this type of situation was to try to find a multimodal path, e.g. locally curative surgery(s) with more chemical coverage and less chemical damage. More options were available when we found, assessed and assembled diverse options ourselves.

More chemical coverage? Fewer untreated gaps (e.g 5FU chemo still working 12 hours before surgery, immunochemo 24 hours after surgery, other chemistry still on during surgery), with more treatment chemistry or cancer pathways addressed - specifically targeted or specifically tested. Chemo even a few days before/after surgery would be a big advance for most hospitals. The principal goal here is to stop the spread of cancer, fast shrinkage or elimination is nice but not an absolute requirement if surgery can get it, or if immunochemo will slowly erode it away. We were able to hotrod oral 5FU with mild, targetable drugs (cimetidine, Celebrex, aspirin) and potent nutraceuticals to antitumor activity levels that regress cancer, even the resistant survivors and mutations. With carefully selected nutraceuticals to amplify chemo and to address other health problems, side benefits rather than side effects can be the norm.

Locally curative surgeries allow important piecemeal steps forward, but you have to prevent further spread. To me, daily immunochemo made a lot more sense for stage 4, and some papers' numbers backed that up. For a denied resection or spreading cancer, doubly so in my eyes.
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

dandan
Posts: 8
Joined: Tue Mar 19, 2019 9:01 pm

Re: Surgery or not? And Doctors in MD Anderson

Postby dandan » Thu Mar 21, 2019 12:53 pm

Thank you so much for sharing your experience. Her oncologist was on the fence and now I understand why. She said the reason she didn't recommend surgery was because the location of the main tumor, not its size.

I fell the oncologist still doesn't want to go down to the surgery path now. The fact the tumor starts getting bigger makes her give a second thought about the surgery option again.

Pyro wrote:So, MD Anderson. It’s a great place but that’s not how my MDA experience worked, I.e. requesting doctors. You apply through your local oncology office, there is no guarantee they will see you. If they agree, you’ll be assigned doctors, not pick them. I would say they have some of the best surgeons that exist. Dr Shariqi (sp?) was my Onc, Dr Vauthey was my liver surgeon and Dr Bednarski was my colon surgeon. I had a plastic surgeon and other doctors but I don’t remember their names.

Surgery is the only way to get rid of it, however, there is no chemo before or after surgery for a few months. Definitely a concern of an oncologist, not so much a surgeon.

dandan
Posts: 8
Joined: Tue Mar 19, 2019 9:01 pm

Re: Surgery or not? And Doctors in MD Anderson

Postby dandan » Thu Mar 21, 2019 12:57 pm

Thank you very much for your comments. I'll ask the surgeon about if it's locally curative. Immunotherapy isn't applicable for my wife's case. I'm not sure if immunochemo can be used just because she will get a surgery?

Also I heard some surgeons/hospitals use HIPEC to clean up any possible residues caused by the surgery after it's done. Something I need to confirm with the surgeon too.

Thanks again.

rp1954 wrote:My view in this type of situation was to try to find a multimodal path, e.g. locally curative surgery(s) with more chemical coverage and less chemical damage. More options were available when we found, assessed and assembled diverse options ourselves.

More chemical coverage? Fewer untreated gaps (e.g 5FU chemo still working 12 hours before surgery, immunochemo 24 hours after surgery, other chemistry still on during surgery), with more treatment chemistry or cancer pathways addressed - specifically targeted or specifically tested. Chemo even a few days before/after surgery would be a big advance for most hospitals. The principal goal here is to stop the spread of cancer, fast shrinkage or elimination is nice but not an absolute requirement if surgery can get it, or if immunochemo will slowly erode it away. We were able to hotrod oral 5FU with mild, targetable drugs (cimetidine, Celebrex, aspirin) and potent nutraceuticals to antitumor activity levels that regress cancer, even the resistant survivors and mutations. With carefully selected nutraceuticals to amplify chemo and to address other health problems, side benefits rather than side effects can be the norm.

Locally curative surgeries allow important piecemeal steps forward, but you have to prevent further spread. To me, daily immunochemo made a lot more sense for stage 4, and some papers' numbers backed that up. For a denied resection or spreading cancer, doubly so in my eyes.

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

Re: Surgery or not? And Doctors in MD Anderson

Postby rp1954 » Thu Mar 21, 2019 8:34 pm

dandan wrote:Thank you very much for your comments. I'll ask the surgeon about if it's locally curative.

You need to gently tell the surgeons (candidate drs) that you accept (or respectfully demand) a locally curative surgery, as part of a larger multimodal plan, hopefully with advanced techniques sequenced from around the globe. Normally the surgeons decline surgery (write you off) if they can't get it all in one go, a curative surgery. So you have to practice coherent narratives (on other doctors), engage and entice the keepers to do anything at all (they may quit on you if not encouraged) and do as much cleanup as possible each time.

That buzz word, multimodal, is part of a quick check how saavy or interested they are. Multimodal treatment is the phrase used in a number of papers from different countries' elite doctors.

My wife's multimodal treatment steps were, broadly:
neoadjuvant immune treatments (4 wks) + surgery 1 + an enhanced immune tx (1mo) + metronomic (daily) immunochemo (11+ months) + surgery 2 + immunochemos (8 yrs)

No local oncologist suggested or approved the immune treatments, extra blood tests, or immunochemo. I used cumulative research from many PhDs, MDs and MD-PhDs from around the globe, alternative experimenters and MDs, and an ND. Mostly I consulted oncologists during the first months after surgery 1, for an hour or 3, learned some things but was mostly frustrated. My wife went for 2 hrs once, and quit. One lesson here was not over relying on any single source, or deferring to specialized experts as Omniscient, especially when they fail your situation, or are outside their specific expertise and experience.

We. have. to. be. our. own. advocates.

...Immunotherapy isn't applicable for my wife's case. I'm not sure if immunochemo can be used just because she will get a surgery?

Immune therapies have come in many flavors over the last century or so, and cover huge real estate. Solo PD-1 inhibitors are just one recent method, often a magic bullet for MSI cancer cells. We found it useful to shift generic immune treatment components with the markers.

One of the missing links in Big Medicine and standard medicine in the US is the long languishing reality of targetable immunochemo components that allow mets to slowed, stopped and/or dissolved with cheap generic items, when done adequately. This is what really allows multiple treatments to be chained together without (or less) spread and growth.

I usually float it out there calmly like it is accepted somewhere else, or have some papers in my hand. (What? You didn't read that basic homework lesson from Japan, or the XYZ paper?)
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

dandan
Posts: 8
Joined: Tue Mar 19, 2019 9:01 pm

Re: Surgery or not? And Doctors in MD Anderson

Postby dandan » Fri Mar 22, 2019 10:22 am

Thank you so much for sharing your research and experience. I wish we had seen this earlier. Would you mind being a bit more specific about the homework and paper you mentioned? I googled and also searched the forum. Found some research about Asian diets and colon cancer, e.g. in Japan. Not sure if the findings are relevant.

BTW, based on our limited experience, I found out many doctors at least in this country are a bit on the conservative side. Another thing is every oncologists/surgeons seem to be overloaded and really pushed to the edge (that may be true anywhere else). I'm not sure how much time they can spend on each patient (sadly). I feel It's really up to the patients themselves and their family to dive deep and stay ahead.

One person I've got to know after my wife is diagnosed treated his mom only with herbal medicine and she has been doing excellent after 4 years. I'm not saying everyone should go down that path. But there are other options out there I believe.

Thanks again

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

Re: Surgery or not? And Doctors in MD Anderson

Postby rp1954 » Fri Mar 22, 2019 1:13 pm

Chemistry depends on the biology. Could you share your wife's MSI/MSS/MMR status, genetics or KRAS/BRAF status, and some blood work like Hopie formatted and did here? (you can see it properly from the quote - edit mode button, ["]) The most crucial initial lab data people are usually missing in their previous bloodwork are CA199, LDH, hsCRP and 25 hydroxy vitamin D. The first CA199 done helps with the cimetidine question, best done before surgery or any treatment, but even now helps.

... the homework and paper you mentioned? ...

I've mentioned Life Extension Foundation articles before here for preliminary reading. More specifc "homework and papers" are best done referenced to any tissue or bloodwork. Initial Recommended Blood Tests

BTW, based on our limited experience, I found out many doctors at least in this country are a bit on the conservative side.

Yes, that is the usual situation. We had to climb the medical pyramid to get more surgical options. We pretty much had to fire the oncologists to get immunochemo done but we could get chemo ourselves and use other doctors, including doctors oriented toward alternatives. In the US, I think capecitabine (Xeloda) has to come through oncologists and it isn't quite as nice as UFT (our chemo). I've seen generic UFT (tegafur-uracil) listed in Mexico's formulary, but I'm not sure how easily available it is. It is actually a cheap, unadvertised drug from Korea, Taiwan, and India, originally from Japan.

...oncologists/surgeons seem to be overloaded... I'm not sure how much time they can spend on each patient (sadly).
Someone needs to answer questions. I got my questions answered on a cumulative basis, one doctor or oncologist, then the next. The remainder picked up from reading papers and on the boards. There are also telephone help lines, some free, some paid.

I feel It's really up to the patients themselves and their family to dive deep and stay ahead.

Yes, that is how it worked for us.

One person I've got to know after my wife is diagnosed treated his mom only with herbal medicine and she has been doing excellent after 4 years. I'm not saying everyone should go down that path. But there are other options out there I believe.

I think that may work best for lesser cancer biologies, lucky hits on pathways, and early stages. At stage 4, we used a lot of high potency nutraceuticals with an off label drug, and did a lot of good - killed some mets in hard to get places. However, after several early tries and some chemo, it became clear we could not kill the remainder without chemo added (and more surgery).

A lot of people make a mistake thinking they can stop an angry, charging brown bear with alternatives that are the equivalent of a .22 or BB gun, shooting from the hip or lip. I insisted on careful aim, a bigger gun with better ammo, with more followup shots...
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

dandan
Posts: 8
Joined: Tue Mar 19, 2019 9:01 pm

Re: Surgery or not? And Doctors in MD Anderson

Postby dandan » Mon Mar 25, 2019 11:45 pm

Sorry for the late reply. Has been in hospital twice for the past three days.

Could you share your wife's MSI/MSS/MMR status, genetics or KRAS/BRAF status,


Of course, Hers is MSS(MSI sensor score 1.03), KRAS(Wild), BRAF(Should also be wild since it's not on the alternations list). Complete report is as below:
Positive for the following somatic alternations in the clinically validated panel
1. TP53(NM_000546) exon7 p.R248Q(c.743G>A)

Positive For the following somatic alterations in the investigational panel:
2. SDHA (NM_004168-5p15.33) Gain(Fold Change: 1.9)(Note 1)
3. BCL2L1(NM_138578-20q11.21) Gain(Fold Change: 1.8 ) (Note 1)
4. ASXL1(NM_015338-20q11.21) Gain(Fold Change: 1.8 ) (Note 1)
5. DNMT3B(NM_006892-20q11.21) Gain(Fold Change: 1.8 ) (Note 1)
6. SRC(NM_198291-20q11.23) Gain(Fold Change: 1.8 ) (Note 1)
7. RTEL1(NM_032957-20q13.33) Gain(Fold Change: 1.5)(Note 1)
8. DNAJB1(NM_006145-19p13.12) Deletion(Fold Change: -2.9)
9. SMAD4(NM_005359-18q21.2) Deletion(Fold Change: -2.9)
10.RNF43(NM_017763-17q22) Intragenic deletion(Note 2)

11. ARID1B(NM_020732) exon20 p.E1685del(c.5052_5055delinsT)
12. IRS1(NM_005544) exon1 p.E940K(c.2818G>A)
13. NF1(NM_001042492) exon18 pI719Vfs*34(c.2141_2154dupGTGAGGAAGCAGAT)
14.TCF3(NM_001136139) exon9 splicing variant p.X244_splice(c.732_822+35del)

15. HIST3H3(NM_003493) rearrangement: c.161:HIST3H3_chr1:g.145082149dup(note 3)

Notes:
1. The SDHA, BCL2L1, ASXL1, DNMT3B, SRC, and RTEL1 copy number gains fall slightly below the cut off criteria for amplification. Confirmatory testing by an alternate method is suggested, if clinically indicated.
2. The RNF43 intragenic deletion involves the loss of exon 2
3. The HIST3H3 rearrangement results in the duplication of exon 1. One of the breakpoints is within exon 1. The functional significance is undermined.
4. Copy number profile is suggestive of broad copy number gain on Chromosome arms 8p11 and 13q12
5. This sample has been nominated for further analysis using the Archer targeted RNA seq as an apparent deriver-negative cancer. Assay will be performed if additional material is available and results will be reported under a separate accession number.

and some blood work like Hopie formatted and did here? (you can see it properly from the quote - edit mode button, ["]) The most crucial initial lab data people are usually missing in their previous bloodwork are CA199, LDH, hsCRP and 25 hydroxy vitamin D. The first CA199 done helps with the cimetidine question, best done before surgery or any treatment, but even now helps.


(pre chemo) (after 21 rounds) (range)
AFP 2.1, NA, 0.0-5.0
CA125 76, NA, 0-35
CA19-9 298, NA, 0-40
CEA 64.5, 5.9, 0.0-5.0

Vitamin D 25 Hydroxy, NA, 19, 20-50(optimal)

WBC 14.1, 5.8, 4.0-11.0
RBC 3.27, 4.35, 3.8-5.0
HGB 7.9, 13.7, 11.2-15.4
HCT 26.5%, 41.7%, 34.3-46.0%
MCV 81, 96, 80-98
MCH 24.2, 31.5, 27.0-33.0
MCHC 29.8, 32.9, 31.0-36.5
RDW. 15.6%,13.3%,12.2-15.1%
PLT 752, 172,160-400
Neutrophil. 86.4%, 66.3%,32.5-74.8%
Immature Granulocyte 0.6%,0.3%,0.0-0.6%
Lymph 7.2%, 22.2%, 12.2-47.4%
Mono 5.1%, 7.6%,0-12.3%
Eos 0.6%, 3.3%, 0-4.9%
Baso. 01.%,0.3%, 0.0-1.5%
Abs Neut 12.2, 3.8, 1.5-7.5
Abs Lymph 1.0, 1.3, 0.9-3.2
Abs Mono 0.7, 0.4, 0-1.3
Abs Eosinophil 0.1, 0.2, 0-0.7
Abs Basophil 0.0, 0.0, 0.0-0.2
Nucleated RBC 0.0%, 0.0%

Creatinine 0.7, 0.8, 0.6-1.1
Na 136, 139, 133-143
K, 4.6, 4.6, 3.3-4.9
Chloride, 101,109,98-109
CO2 25, 23, 18-29
Calcium 9.2, 9.8, 8.5-10.5
Glucose 131, 96, 70-99
Protein 7.6, 8.1,6.3-8.5
Albumin 3.7,4.7, 3.8-5.0
Anion Gap 10, 7, 8-16
Bilirubin 0.3, 0.8, <=1.2
BUN 10, 18, 6-20
ALK 212,105, <=130
AST 15, 36,<=37
ALT 30, 35, <=55

Fewer untreated gaps (e.g 5FU chemo still working 12 hours before surgery, immunochemo 24 hours after surgery, other chemistry still on during surgery),

We have spoken with our surgeon, and mentioned about the locally curative, multimodal method. Our surgeon said this operation would be palliative to reduce the tumor load by removing the growing and asked us to think about it. The take home message It's not absolutely necessary, but it's an opportunity.

I also asked if taking 5FU 12 hours before the surgery and resuming chemo shortly after would be possible. The answer is no. It has to be 8-10 weeks of window, 4-6 weeks before and 4 weeks after for the chemo per the surgeon.

Would you mind sharing if your wife's surgery was done in the U.S.? To me, it appears there's a protocol surgeons have to follow or they may risk their career. I heard in some countries people can buy Chemo, e.g. 5FU and immunochemo themselves and bring to the oncologist. Just curious how this works out in the U.S.

Thank you.

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

Re: Surgery or not? And Doctors in MD Anderson

Postby rp1954 » Tue Mar 26, 2019 3:57 pm

dandan wrote:Sorry for the late reply. Has been in hospital twice for the past three days.

Sorry about that, hope things are better. Were those primarily chemo, cancer or other related ?

I'm not absolutely clear about what happened with your wife's primary cancer in the right colon in terms of biopsy or surgery, and chemo.

More tissue(?) and blood comments later.
You've got a great start there. I'd be surprised if there is no CRP (C-reactive peptide, hsCRP), LDH (LD, lactate dehydrogenase), ESR (Erythrocyte Sedimentation Rate, sed, Sedimentation) data ever. There are decision points in here.

Vitamin D 25 Hydroxy, NA, 19, 20-50(optimal)

"Normal CRC case", vitamin D deficient. What kind of vitamin D supplement has she been taking?
A lot of CRC patients set their vitamin D levels goals higher for potential immune benefits, 60ng/ml, 80 ng/ml, 100ng/ml, even 150 ng/ml. A few, will temporarily raise it toward 1200 ng/ml under medical supervision (calcium supplement restrictions, added menatetrenone and magnesium apply).

Fewer untreated gaps (e.g 5FU chemo still working 12 hours before surgery, immunochemo 24 hours after surgery, other chemistry still on during surgery),

We have spoken with our surgeon, and mentioned about the locally curative, multimodal method. Our surgeon said this operation would be palliative to reduce the tumor load by removing the growing and asked us to think about it. The take home message It's not absolutely necessary, but it's an opportunity.

Basically, he's going in the right direction, to do the surgery itself. It appears with him, a multimodal plan and any enhancements are all in your court.

How far / hard is it to get to MDA or other city centers?

I also asked if taking 5FU 12 hours before the surgery and resuming chemo shortly after would be possible. The answer is no. It has to be 8-10 weeks of window, 4-6 weeks before and 4 weeks after for the chemo per the surgeon.

I would have liked to seen/heard his reflexive reaction :shock: :? :twisted: :roll: to that question, if there was one.

My wife took a 12 hour dose (two UFT pills) 24 hours before her 2nd surgery, and the residual in her blood was around 0 in 24 hours, faster than all 5FU based treatments except for lower dose, raw 5FU tablets (rare in the 21st century).

They're worried about immediate bleeds, and later, wounds not fusing strong in vitamin C-vitamin K -other substrate depleted, 5FU bearing tissues. My wife's surgical scar condition was perfect at 5 days post op with 4 days of full immunochemo. In fact, the radiologist and GI dr on colonoscopy marvel over her perfect colon fusion - no internal scar visible - from her first surgery (no chemo, just wound enhancement chemistry).

We were willing to go for chemo close in time to abdominal surgery, temporarily removing the intestines, potentially repairing the aorta. Liver surgery may have more bleed risk, but we carefully avoided a lot of the causative biochemistry issues.

Would you mind sharing if your wife's surgery was done in the U.S.? To me, it appears there's a protocol surgeons have to follow or they may risk their career.

Outside the US, but everyone is aware of various liability issues - they're more worried their risk-benefit ratio more than yours.
The typical abdominal surgery schedules off chemo are 6 weeks before/after for Avastin, 3-4 weeks before/after for heavy chemo. The Japanese often use 2 weeks after surgery, for daily UFT and its immunochemo (PSK and/or cimetidine) in their studies.

There are a number of successful perioperative 5FU papers from Japan for primary cancers on the colon/rectum, 5FU chemo before and/or after surgery, where one even did 5FU chemo during surgery, even without wound repair enhancements and chemistry.

I heard in some countries people can buy Chemo, e.g. 5FU and immunochemo themselves and bring to the oncologist. Just curious how this works out in the U.S.

We've brought UFT into the US before, and mailed it too, after careful investigation in 2014. Nominally it is strictly illegal after congress and the FDA made a more perfect drug monopoly, enabling that $750 price on 4 cent generic pills. But, there is a written FDA policy of forebearance, at discretion for Customs, for international travel with a 57 day supply, that presupposes treatment abroad. Theoretically one also has a US licensed doctor who is responsible for it in the US, but we never had to make any phone calls.

Of course, that can be 57 x 5 pills that she sometimes uses, rather 4 per day more often, with an additional box(es) in the mail in case of a fubar on the plane or at the border. We have a doctor that understands about her scrips and travel needs too.
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

dandan
Posts: 8
Joined: Tue Mar 19, 2019 9:01 pm

Re: Surgery or not? And Doctors in MD Anderson

Postby dandan » Wed Mar 27, 2019 3:05 pm

[/quote] Sorry about that, hope things are better. Were those primarily chemo, cancer or other related ? [/quote]

One visit is for my wife, cancer related. Another one is for my baby, who's having a different condition. Really not much compared with my wife. Thank you for asking.

I'd be surprised if there is no CRP (C-reactive peptide, hsCRP), LDH (LD, lactate dehydrogenase), ESR (Erythrocyte Sedimentation Rate, sed, Sedimentation) data ever. There are decision points in here.


I haven't found them in the record yet. I'll check with the hospital and see if they have done the test.

"Normal CRC case", vitamin D deficient. What kind of vitamin D supplement has she been taking?


She's taking "natures made multivitamin" (including 1000IU vitamin D). I heard someone has been taking 5000IU daily and asked her to take 5000IU vD from now on.

How far / hard is it to get to MDA or other city centers?

We are in NYC area and MDA is not very close. I'm will to go there for an 2nd opinion or even treatment. We have contacted a surgeon in MDA and hopefully hear back from him in a few days. Please kindly let me know if you have recommendations for hospitals/surgeons who's willing to narrow down the chemo treatment windows caused by surgery.

My wife took a 12 hour dose (two UFT pills) 24 hours before her 2nd surgery, and the residual in her blood was around 0 in 24 hours, faster than all 5FU based treatments except for lower dose, raw 5FU tablets (rare in the 21st century).
They're worried about immediate bleeds, and later, wounds not fusing strong in vitamin C-vitamin K -other substrate depleted, 5FU bearing tissues. My wife's surgical scar condition was perfect at 5 days post op with 4 days of full immunochemo. In fact, the radiologist and GI dr on colonoscopy marvel over her perfect colon fusion - no internal scar visible - from her first surgery (no chemo, just wound enhancement chemistry).


Thank you for sharing the details. Yes, bleeding is the concern. You wife's case is really encouraging and I'm really glad that this worked well for her.

We were willing to go for chemo close in time to abdominal surgery, temporarily removing the intestines, potentially repairing the aorta. Liver surgery may have more bleed risk, but we carefully avoided a lot of the causative biochemistry issues.

I see. The surgeon will only remove the tumor originated from the large intestine, part of the intestine, nearby lymph nodes and ovary(if needed). The surgeon doesn't want to touch the liver now. I believe your wife's paradigm could really be applicable for my wife.

There are a number of successful perioperative 5FU papers from Japan for primary cancers on the colon/rectum, 5FU chemo before and/or after surgery, where one even did 5FU chemo during surgery, even without wound repair enhancements and chemistry.

That's great news. Let me see if I can find them and forward to the surgery (although I'm not sure this would change his position).

One more thing I learnt recently is TMB (Tumor Mutation Burden) could also be an indicator for immunotherapy. In some countries, patients can request Keytruda every if they are MSS. Some of them got great results. There's a theory that high TMB MSS patients may be able to immunochemo.

https://www.mskcc.org/blog/tumor-mutati ... -different

As always, thank you for much for all the invaluable info.

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

Re: Surgery or not? And Doctors in MD Anderson

Postby rp1954 » Wed Mar 27, 2019 4:31 pm

"Normal CRC case", vitamin D deficient. What kind of vitamin D supplement has she been taking?

She's taking "natures made multivitamin" (including 1000IU vitamin D)…. 5000IU vD from now on.

Just FYI, my wife took 17,000 iu vitamin D3/day before her 1st surgery. She took 30,000 - 40,000 iu vD3/day before the 2nd surgery to help put more immuno- in her immunochemo. Her unoptimized regimen before first surgery (chemo naïve) still turned a lot of cancer mass into mush, a good chemistry hit on her biology.

Above 10,000 - 20,000 iu vD3 per day, extra magnesium and menatetrenone (MK4 form of vK2) with occasional calcium monitoring is a good idea. For many cell lines, enough MK4 helps 5FU and vC kill CRC cells. Also I would make sure her multivitamin brand doesn't contain folic acid, its variably toxic with 5FU, other folates are okay and help to reduce cumulative side effects. I've discussed this in detail before, just search rp1954 for "folate*".

We are in NYC area and MDA is not very close. I'm will to go there for an 2nd opinion or even treatment. We have contacted a surgeon in MDA and hopefully hear back from him in a few days...The surgeon will only remove the tumor originated from the large intestine, part of the intestine, nearby lymph nodes and ovary(if needed). The surgeon doesn't want to touch the liver now.

Oh. You "just" need a good oncological and/or colorectal surgeon(s) more locally (eastern US) that can be cooperative. I did feel that my Japan papers got more respect from a surgeon trained in Japan, but the guy was a hotshot too and had liberal criteria for supplements.

I believe your wife's paradigm could really be applicable for my wife.

I do too

There are a number of successful perioperative 5FU papers from Japan for primary cancers on the colon/rectum, 5FU chemo before and/or after surgery, where one even did 5FU chemo during surgery, even without wound repair enhancements and chemistry.

That's great news. Let me see if I can find them and forward to the surgery (although I'm not sure this would change his position).

I'd definitely try to get as much comment from him as possible, it's good preparation and practice for the next interview. We scheduled 2-3 interviews rapid fire with the next candidates and improved our preparations and pitch each time.

One more thing I learnt recently is TMB (Tumor Mutation Burden) could also be an indicator for immunotherapy. In some countries, patients can request Keytruda every if they are MSS. Some of them got great results. There's a theory that high TMB MSS patients may be able to immunochemo.

One does the best one can, whatever it takes; Keytruda may also need adjuncts for MSS. I try to match markers and gather specific experiences in thin data areas. I used 2 weeks segments for extra blood work, in 4 - 8 week trials, strengthening my wife for surgery, book ended with surgery for better answers.

UPDATE: More recent papers from Japan show IV 5FU use even on "day 0" post op, or the first week postop, switching to oral 5FU chemos at 2 weeks.
Post op 5FU on day 0 or 6 ; 5FU for the 10 hr before BrCa surgery ; 7 rectal cancer patients getting tegafur (not UFT) before surgery
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

dandan
Posts: 8
Joined: Tue Mar 19, 2019 9:01 pm

Re: Surgery or not? And Doctors in MD Anderson

Postby dandan » Fri Mar 29, 2019 3:58 pm

Just FYI, my wife took 17,000 iu vitamin D3/day before her 1st surgery. She took 30,000 - 40,000 iu vD3/day before the 2nd surgery to help put more immuno- in her immunochemo.


Thank you very much for the numbers. I heard 5FU works better with high dosage of vitamin D. But 17,000 iu is a news to me. Could you let me know for how long your wife took 17,000 iu vD3/day or it's just right before the surgery?


Above 10,000 - 20,000 iu vD3 per day, extra magnesium and menatetrenone (MK4 form of vK2) with occasional calcium monitoring is a good idea. For many cell lines, enough MK4 helps 5FU and vC kill CRC cells.


Got it. I'll start giving her magnesium and menatetrenone as well. Do you have suggestions about the dosage for magnesium? It seems magnesium is not in the link you provided below....Her unoptimized regimen

Spouse started 1600 mg cimetidine, 10,000-15,000 iu vit D3, 900 mg lipoic acid, 600 mcg MeSC selenium, 500 mg coQ10, fish oil, 45mg vit K2(MK4), 4000 mg vit C, 2000 mg N-acetylcysteine(NAC), vit E-succinate, pancreatin daily


Also I would make sure her multivitamin brand doesn't contain folic acid, its variably toxic with 5FU, other folates are okay and help to reduce cumulative side effects. I've discussed this in detail before, just search rp1954 for "folate*".


Thank you very much for the reminder. I read about folic acid from different books and try to avoid it in her daily food but overlooked the fact that multivitamin might contain it.

Oh. You "just" need a good oncological and/or colorectal surgeon(s) more locally (eastern US) that can be cooperative. I did feel that my Japan papers got more respect from a surgeon trained in Japan, but the guy was a hotshot too and had liberal criteria for supplements.


The earliest available surgery date with current hospital would be in about 4 weeks. MDA visit is within 2 weeks. I'd like her to have the surgery done asap, in the meantime. I really believe it should be done the way your wife did it. I'll see if I can find some Docs who received his/her training in Japan. Or maybe even taking her to Japan or other countries... Would you mind sending me a message about the Doctor's (training in Japan) name if possible?

One does the best one can, whatever it takes; Keytruda may also need adjuncts for MSS. I try to match markers and gather specific experiences in thin data areas. I used 2 weeks segments for extra blood work, in 4 - 8 week trials, strengthening my wife for surgery, book ended with surgery for better answers.


This is amazing. Often I felt we are walking in the darkness without a map. I believe there's a way out but we can't make too many wrong turns...

UPDATE: More recent papers from Japan show IV 5FU use even on "day 0" post op, or the first week postop, switching to oral 5FU chemos at 2 weeks.

Thank you for the papers. Reading them now...

All the best

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

Re: Surgery or not? And Doctors in MD Anderson

Postby rp1954 » Sun Mar 31, 2019 9:11 am

dandan wrote:
Just FYI, my wife took 17,000 iu vitamin D3/day before her 1st surgery. She took 30,000 - 40,000 iu vD3/day before the 2nd surgery to help put more immuno- in her immunochemo.


Thank you very much for the numbers. I heard 5FU works better with high dosage of vitamin D. But 17,000 iu is a news to me. Could you let me know for how long your wife took 17,000 iu vD3/day or it's just right before the surgery?

My wife took 16,000-17,000 iu vD3 per day for the 4 weeks between diagnosis and 1st surgery, a toe in the water with limited supplies of 5000 iu caps + misc. She took 30,000 - 40,000 iu per day for years on immunochemo, including the months running up to 2nd surgery. She was medically positioned for supervised use up to 50,000 - 100,000 iu per day if necessary. She has been up to 80,000 iu per day. Back then 10,000 and 20,000 iu vD3 caps were easy to get, we also do handloading.

Above 10,000 - 20,000 iu vD3 per day, extra magnesium and menatetrenone (MK4 form of vK2) with occasional calcium monitoring is a good idea. For many cell lines, enough MK4 helps 5FU and vC kill CRC cells.
It seems magnesium is not in the link you provided below....

She takes one cap a day of either a chelated form, ~133 - 225 mg Magnesium content (e.g. Mg glycinate, malate, lysinate orcitrate) , or a mixed oxide+chelate with up to 400 mg of magnesium content. Some of the chelated pills are big.

The earliest available surgery date with current hospital would be in about 4 weeks. MDA visit is within 2 weeks. I'd like her to have the surgery done asap, in the meantime. I really believe it should be done the way your wife did it. I'll see if I can find some Docs who received his/her training in Japan. Or maybe even taking her to Japan or other countries... Would you mind sending me a message

Time pressure and coordination are important aspects. There's a PM.

RP: One does the best one can, whatever it takes;...
Dan: This is amazing...

You need real options that you can get done on a timeline.

Often I felt we are walking in the darkness without a map.

Yes, that is the way it usually feels without a light ahead.

I believe there's a way out but we can't make too many wrong turns...

For us, the bloodwork, immunochemo and supernutrition approaches were key. Avoided normal big problems, identified and recovered faster from small ones.
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

dandan
Posts: 8
Joined: Tue Mar 19, 2019 9:01 pm

Re: Surgery or not? And Doctors in MD Anderson

Postby dandan » Tue Apr 02, 2019 11:52 am

My wife took 16,000-17,000 iu vD3 per day for the 4 weeks between diagnosis and 1st surgery, a toe in the water with limited supplies of 5000 iu caps + misc. She took 30,000 - 40,000 iu per day for years on immunochemo, including the months running up to 2nd surgery. She was medically positioned for supervised use up to 50,000 - 100,000 iu per day if necessary. She has been up to 80,000 iu per day. Back then 10,000 and 20,000 iu vD3 caps were easy to get, we also do handloading.


Thank you so much.


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