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5 yrs war

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

For me, it officially began just over 5 years ago.  We'll never know exactly when for my wife.  She began to obstruct and have diarrhea a month earlier, right after a first trip to Bangkok. (I've still never been to Thailand) At first the dr thought amebiasis, and tried several rounds of antibiotics without success. She lost 25% of her body mass and finally the dr's light came on to get a scope.  I got a teary call in the middle of the night from the hospital.

If you want to horribilize, my wife was obstructed ~95% with elevated CEA and tumor tissues positive for CA19-9 and CSLEX1 (biologically, highly metastatic); she had a coin sized invasion to the abodominal wall; her mesenteric fat was infiltrated with tumorous material; she had 3 lung thangs bilaterally; several liver lesions and a large cluster of conglomerated para-aortic lymph nodes. In actuality it took a long time to get her original dx straight because their statements to us were so confused by the initial tumor destruction wrought by our informal CAM neoadjuvant treatment. After surgery, her first surgeon's first words were, "I didn't get it all" (R2, some of the abdominal implant) and started a hard sell for palliative radiation before std chemo. We stayed the course on CAM and then immunochemo.

In the follow up meeting after her second surgery, our second surgeon was freaked about the multiplicity of metstatic para-aortic lymph nodes and about her restarting chemo asap, seeing the manifold met nodes as a virtual death sentence. We had already restarted her chemo the day after surgery. Her cumulative weight loss reached about 35% of original pre-dx and had an enviable swimsuit figure.  

She has no patience for oncologists. Basically she did one 2 hr chemo interview 5 yrs ago, and has never been back.  She only takes cheap foreign drugs for uses that are unapproved in the US and does lots of supplements, including massive vitamin C. We frequently go directly against standard medical advices for more experimental options based on the literature.  Her CEA doubles in about 5 weeks if anything goes wrong with chemo.  Initially it took over a year to begin to get a straight story - it seemed that every time one thing got fixed or tested, her initial diagnosis or prognosis got worse ! Often, drs hadn't been eager to confront us with how bad they really thought it was and were thrown off by our presurgical immunotherapy success. The oncologist that did directly predict, 17-18 months with full Folfox-Avastin,Folfiri-eribtux, wasn't willing to go into why with me or confront discrepancy when it would contradict a previous dr. He had pretty much discredited himself on some other points, I worried that his advice for maximally expensive tx was driven by greed. Also we don't have much insurance coverage remaining by US standards (previous misadventures); most of the experimental and alternative stuff isn't covered anyway.  Most drs/people would probably predict that we're totally screwed.  End of bad news but not our "bad habits".

Anytime I start  to review "our" case history with a new doctor, he soon says "I'm sorry,..." and I have to hurry up and quickly add, "Oh, no. She's mostly doing fine," and get on to what I want to discuss.

On the plus side, she's had immune and molecular therapies right from the start, with insights in the literature drawn from thousands of MDs and/or PhDs.  We do a lot of things based on logic and literature, rather than rote and quote reasons. A lot of her metasases necrosed (died) before first surgery due to a massive granulocytic attack (ahem).  Her tegafur-uracil chemotherapy is the world's nicest 5FU drug - it makes her feel a little better before bedtime and can also be done in the middle of traffic. We watch multiple biomakers for trouble brewing, and haven't had any new mets imaged for 4 years (hi res CT, MRI, PET/3CT).   We only visit with her respective doctors once maybe twice a year, everything else is done from home - blood labs, Skype for the dr and a nurse visits for IV vitamin C.  Her scans and labs are done on equipment that were brand new 4-5 years ago e.g. 128-256 slice CTs and labs.  We seldom worry about insurance kibitzing and suffer no such 3rd party delays or stress anymore.

The mesenteric fat infiltrates and the abdominal wall implant all died before the first surgery, I say because of the heavy duty cimetidine and special supplements.  Two surgeries successfully removed the primary and then the massive para-aortic cluster a year later. The lung thangs, one disappeared, then one calcified, and the remaining one just sits there. Her peritoneum stayed clear, cost her 2nd surgeon a bottle of wine bet another surgeon.  The liver lesions shrank 99%, disintegrated or disappeared after some formula changes during the second year.   CEA and biomarker rises associated with reduced or unavailable treatments, have been mostly driven back to normal ranges.  

So after five straight years of continuous treatment, with the time equivalent of 125 two week chemo cycles,  she looks and feels better than her friends, can do almost anything she pleases, and can still play the piano whenever she wants.

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Yours is an amazing story.  Congrats to you and your wife for such a fine result.  How did you all ever find the Japanese chemo? Do you have a personal connection to Japan, or...?  And why can't we buy the stuff in the US?

glad you post although I don't understand most of it!!!!!!!!!!!   Cool  I don't do IV vitamin C but drink a lot of Tang. I can't stand plain water anymore and I drink so much of it, so flavor it with Tang and feel better because of it. If I don't drink the Tang I feel lethargic. Maybe it's psychological, or it's the additional vitamin C. don't know.

cheers

Karin

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

How did you all ever find the Japanese chemo? 

I was vaguely aware of UFT, as general cancer knowledge of the 1980-90s, but didn't connect it until after 2 months of my own literature search.  Tegafur-uracil is available in most of asia with local brands now replacing UFT, also sold in UK, and parts of Europe and South America. UFT drugs are mostly as 100 mg tegafur caps. Maybe sometimes 50 or 60 mg pills.  Unfriendly oncologists may claim its harder on the bone marrow by massively overdosing leucovorin(LV), but PSK, low dose LV and other no/low toxicity adjuncts are better. 

And why can't we buy the stuff in the US?

There is an obscure statute that requires chemo to be built 100% out of toxic drugs. UFT is ~70% uracil, a natural molecule in our DNA, and isn't poisonous. So rather than carve a loophole or get the statute fixed, the FDA turned down Brisol-Meyers' New Drug Application for UFT, paving the way for then new Xeloda to be priced 20x-60x higher.  Theoretically, UFT etc is not allowed at all in the US, but rather the govt has a policy of "forebearance" for overseas travellers and residents that use it.   I am surprised that Health Canada hasn't tumbled onto it, especially during Xeloda's (fixed) salad days.  

Thanks for your insights and comments, Karin.  It might be possible to do a "better" version of Tang.

 

manwithnoname
Posts: 404
Joined: Jun 2012

That is amazing, first time I heard that much detail, I could have more ;-) today my Uncle died, throat cancer, but cancer didn't kill him pnemonia did after surgery #3. He hated the 'system' with a passion. 

You know how we are doing, still have a concern though, upped the Gallium dose. Wish we had markers.

Got some info on T3 you might like, will post elsewhere though.

 

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Yeah, Tang is crap! I drink it anyway.  If any product was labeled as organic Tang (or equivalent beverage) I would laugh. And not buy it.

I ran Tegafur through the clnical trails database. Not much happening in the US but quite a bit overseas. Here is a link to a completed study of elderly MCRC patients, sponsored by NCI and the eastern cooperative oncology group.  It's not recent, though.  No results are posted.  The target group was people 75 and older. Maybe, as a mild chemo, it would be better for this group?  As people live longer, 75 could be the new 60...

https://clinicaltrials.gov/ct2/show/NCT00004860?term=tegafur&cntry1=NA%3AUS&rank=2

Noname - sorry about your uncle. My condolences. How is your son?

- Karin

manwithnoname
Posts: 404
Joined: Jun 2012

He is doing good, I have considered UFT/Tegafur many, many times for him, as close to chemo as he will ever get now. Very similar pathways to CRC for his tumor in fact the 'cutting edge' clinical trial for these kids right now is 5FU.

A 60 year old drug.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Karin, as a mild chemo, it could be better for a lot of people. Stage II amd III's that don't want the extended debilities of Folfox, or perhaps even the residual risk of  celebrex in ADOPT.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Wow, what an amazing story! Good for her for doing so well! Prayers that she will continue on this path. Thank you for giving the rest of us hope.

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