Curious about "maintenance"

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WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Curious about "maintenance"

Postby WarriorSpouse » Mon Oct 30, 2017 12:13 pm

Trust the FDA's approved drugs here in the U.S.
Do not seek off label drugs from other countries, they are more likely counterfeit, have no medicinal value, and are scams.
Food Supplements are just that, food products that supplement your diet. Check with your oncologist if you add something of substance to your diet.
There are no magic pills or remedies that are outside of the knowledge of the "big hitters" like Dana Farber, Boston, MA; Sloan Kettering, New York, NY; and the MD Anderson, Houston, TX.
From the list I see on this blog, the only one drug I have read about with preventive properties was aspirin, but you MUST check with your oncologist, because you are on other medicines, such as Avastin that may have serious side effects.
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

rp1954
Posts: 1857
Joined: Mon Jun 13, 2011 1:13 am

Re: Curious about "maintenance"

Postby rp1954 » Tue Oct 31, 2017 5:55 am

Trust the FDA's approved drugs here in the U.S.

mmm. We've had some bad experiences with FDA approved drugs that were later blackboxed, withdrawn or intensively litigated, too late to do a lot of US patients any good, including me. For chemo, we've found milder options than big guns like oxaliplatin, irinotecan, and Avastin. We even got what I feel was a better 5FU option here for (micro)metastatic lymph nodes than Xeloda. While US patients were paying $6000-$9000 per month in 2011 for Xeloda and had nasty side effects, we paid $200 for about UFT-LV overseas with few side effects. e.g. Dr: "How many months have you been off chemo? (last chemo)" Wife: "this morning". The FDA has a crazed regulation that literally considers UFT "too nice" and the FDA didn't make efforts to correct their own legal problem. Tragic for cancer patients since the 1980s.

...off label drugs from other countries...

This could describe a larger fraction of generic prescriptions filled by Walmart, Sams, Costco, and insurance sponsored, mail order pharmacies. On the ground in many foreign countries, drugs usually have identifiable, reasonably reliable sources if not their entire distribution system. Of course, the offshore mail pharmacies that push Viagra are likely sketchy.

Food Supplements are just that, food products that supplement your diet.

For many people, this opinion unfortunately represents either a tautology or a myth that deprives them of comforts, improved immune function, quality of life and extra chances.

There are no magic pills or remedies that are outside of the knowledge of the "big hitters" like Dana Farber, Boston, MA; Sloan Kettering, New York, NY; and the MD Anderson, Houston, TX.

For food supplements at therapeutic potentcies, this has not been our observation of others' experience. These centers typically offer higher levels of services and quality with some unique opportunities in mainstream US medicine. However, some of the most advanced lung (Rolle's laser in Germany) and liver operations (ALPPS) were developed overseas. The "big hitters" therapeutic uses of food supplements seem to seriously lag options that we have found outside of them.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements


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