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.
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.
dandan wrote: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?
... the homework and paper you mentioned? ...
BTW, based on our limited experience, I found out many doctors at least in this country are a bit on the conservative side.
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....oncologists/surgeons seem to be overloaded... 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.
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.
Fewer untreated gaps (e.g 5FU chemo still working 12 hours before surgery, immunochemo 24 hours after surgery, other chemistry still on during surgery),
dandan wrote:Sorry for the late reply. Has been in hospital twice for the past three days.
Vitamin D 25 Hydroxy, NA, 19, 20-50(optimal)
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.
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.
"Normal CRC case", vitamin D deficient. What kind of vitamin D supplement has she been taking?
How far / hard is it to get to MDA or other city centers?
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.
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.
"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.
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.
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.
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.
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.
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*".
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.
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.
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?
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....
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
RP: One does the best one can, whatever it takes;...
Dan: 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...
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.
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