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Old 08-17-2019, 07:37 AM   #1
Nguyen
Senior Member
 
Join Date: Nov 2005
Posts: 229
3 questions for alternative/supplement user

I often thought about adding supplement/alternative medicine to my wife’s treatment. But always could not resolve satisfactorily answers to these three questions:

- Finding a trusted source to know what exactly are in the bottle and the amount. I would categorically avoid any food/drug make from China or India. Unfortunately many of our generic drugs are made from there.

- The possible interaction between supplements (herbs, etc) with the current conventional treatment regiments. After all these herbs/extract, etc are medicine, particularly in sufficient dosage.

- How to find out the dosage to use to make an impact.

Thanks for any thought.

Nguyen

Linda Treatment History:
05/10/2019 – current: Eribulin, Denosumab, Neulasta, Herceptin.
08/--/2019: additional radiation to both legs femurs
03/2019 – 04/2019: radiation to hip and neck, denosumab, no other treatment, waiting for clinical trial.
02/2019 – 03/2019: no treatment, wash out period
08/2018 – 02-2019: Xeloda and Herceptin, have to reduce Xeloda dose several times
03/2018: Tumor genetic profile by Foundation One: Her2+++, Er+++, PR-, numerous amplifications, mutations
04/2018 – 08-2018: restart T-Dm1
12/2017 – 04/2018: Pertuzumab + Herceptin
03/2017 – 12/2017: Herceptin + Fulvestrant (take a break from T-Dm1)
07/2014 – 03/2017: T-Dm1
02/2014 – 06/2014: Everolimus (5mg), Exemestane, Herceptin
08/2013 – 01/2014: Femara, Herceptin
12/2012 – 07/2013: 4mg estradiol, Herceptin
08/2012 - 12/2012: Fulvestrant 500mg, exemestane, Herceptin
05/2012 - 08/2012: Everolimus (10mg), Exemestane, Herceptin, Zometa
08/2011 - 05/2012: Herceptin, Tykerb, Femara, Zometa
08/2010 - 08/2011: Herceptin, Femara, Zometa
09-2009 - 08/2010: Herceptin and estradiol (6mg)
09/2008 - 09/2009: Herceptin, Fulvestrant, Femara
03/2008 - 09/2008: Herceptin, Exemestane, Oophorectomy
01/2005 - 03/2008: Herceptin (readded) and Femara
07/2004: It returned again via several small nodules in the lung
10/2002: NED (via CT and CA27.29)!
10/2001 - 01/2005: Femara, Fosamax
12/2000 - 10/2001: Herceptin and Navelbine
12/2000: lung metastatic was diagnosed (a few small nodules)
02/1998 - 12/2000: Daily Tamoxifen
05/1997 - 04/1998: Modified Radical Mastectomy, many cycles of chemo regiments (CAF, Taxol,
Carpoplatin, Thiotepa, Navelbine, Taxotere), high dose chemotherapy with autologous stem-cells
rescue, and radiation
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Old 08-17-2019, 11:16 AM   #2
donocco
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Join Date: Oct 2013
Posts: 417
Re: 3 questions for alternative/supplement user

Nguyen

The interactions can be a problem. St Johns Wart is a strong enzyme inducer and can lower the serum levels of quite a number of drugs. Best to avoid that one.

The big debate is 'do antioxidants and other supplements lower the effect of chemos like Adriamyin, Cytoxan Taxol etc. This ios still up for grabs. From my experience the people who take the immune stimulants ie Matake Mushroom etc do better but this is not scientific. Perhaps people who take supplements are "bucking the establishment" and the defiant fighting spirit may be as beneficial as the supplements. The "good patient" seems to do less well than the fighter.

Paul
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Old 08-19-2019, 08:06 PM   #3
Nguyen
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Join Date: Nov 2005
Posts: 229
Re: 3 questions for alternative/supplement user

Well, we had used PSK (mushroom extract) back in 1/2001. We stopped to eliminate any chance of interference when she first started Letrozole in 10/2001. I am thinking of reusing it now due to recently learn of the abscopal effect of radiotherapy (see link in article of interest) particularly in conjunction with immunotherapy. Essentially this effect is about tumor cells from "distant" sites that are not radiated also die from the patient's immune system. As far as I know, PSK has a fair amount of research compares to other supplements, particularly for its immune boosting effect. I happen to run into the article below:

https://www.huffpost.com/entry/mushr...ncer_b_1560691

“…Another factor to consider is that turkey tail mushrooms, like other varieties, can hyper-accumulate heavy metals, especially from air and soil pollution. Analyses of mushroom products from Asia, particularly Mainland China, have shown abnormally high levels of cadmium and other immuno-compromising metals -- not a good thing for people who want to bolster their immune defenses…”

So I am back (from 2001) looking for a reputable source of PSK.

Nguyen

https://www.cancer.gov/about-cancer/.../mushrooms-pdq
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Old 08-20-2019, 09:13 AM   #4
donocco
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Join Date: Oct 2013
Posts: 417
Re: 3 questions for alternative/supplement user

When you are dealing with chemo like Adriamycin or Taxol or Cytoxan the use of antioxidant supplements with the chemo is up in the air as far as interference goes. Theoretically yes but in reality ie clinically who knows?

When it comes to oral drugs like Letrozole or Tamoxifen it is a question of drug metabolism. supplement contains multiple chemicals and most are metabolized. Which enzymes metabolize the drug ie Letrozole or Tamoxifen. Do the mushroom supplements interfere with this enzyme by inhibiting it or increasing it?St johns wort increases liver enzymes and can lower the serum level of drugs. Aids drugs are very susceptible to St johns Wort.

Tamoxifen is a prodrug ie inactive. It is metabolied by the enzyme Cyp2D6 in the liver. You have to watch out for drugs that inhibit Cyp2D6. Tamoxifen is often given with antidepressants to decrease hot flashes. You have to be careful. Prozac (Fluoxetine) Paxil (Paroxetine) Cymbalta (forgot generic name ) and Wellbutrin (Bupropion) all inhibit
Cyp2D6 and will prevent the inactive Tamoxifen from being CYP2D6 metabolized to the active Endoxifen. The best one to use is probasbly Venaflaxine or (brand name ) Effexor.
For those who might be interested, The nitrogen on Tamoxifen contasins two CH3 or methyl groups. The Cyp 2D6 enzyme removes one of these methyl groups and forms the active drug.

As far as Paroxitine goes (brand mame Paxil) in one long term Canadian study it seemed to raise breast cancer rates by 700%. Anybody whom is on kit might consider looking this up and showing to their doctor. I wouldnt let my wife, or sister take Paroxetine.

This makes me cynical about the FDA. The FDA made a big deal about a vitamin intake vs cancer incidence done it Finland way back when. People who ingested bets carotene which has anticancer effects as far as prevention goes (in animals) had a 25% increase in the incidence of lung cancer. Perhaps this is important. I think tis was called the Framingham study.

But the same FDA ignored that Canadian study. 700% increase is unlikely to be a fluke. Yet this didnt stop the FDA from approving Brisdelle to treat the ot flashes of breast cancer treatmet. Brisdelle is (I believe) 15mg Paxil or Paroxetine. This seems like a contradiction.

Paul

PS. the anti-smoking aid Zyban is another name for Bupropion (Wellbutrin)
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