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SoCalLisa

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Goddess Forever
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Reply with quote  #41 
Hi Constantine..you are a busy beaver and we do appreciate all your inputs..


As it turns out my chemo/meds were too toxic for my liver so I now have bridging fibrosis/early cirrhosis...this was over five years ago...my gastro told me there was really nothing I could do other than never to drink any alcohol, and to make sure I didn't have any medications that could damage my liver..so I did that and I had a U/S every year plus bloodwork every three months, and it was compensated..then this fall , it showed hypertension in the portal vein..the only thing he offered to help was for me to lose forty pounds. I have lost fifteen so far, but feel there is just something more I can do...I can't seem to find any more info...


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edge

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Reply with quote  #42 

Lisa:

So sorry to hear of the liver involvement secondary to various therapies. Yet there are some interventions that can help:

Hepatoprotection
The strongest evidence of hepatoprotective and liver-supportive activity of any CAM (complimentary and alternative medicine) intervention is for SAMe (S-adenosylmethionine), which I briefly discussed in these forums in terms of its benefit in relieving the musculoskeletal adverse events of aromatase inhibitors (and possibly also for mild to moderate depression). The body manufactures SAMe for use in chemical-to-chemical conversion processes (called transmethylation and transsulfuration), acting in addition as a a precursor for cysteine and glutathione, the major physiologic defense mechanism against oxidative stress in the body, and some highly suggestive evidence suggests that SAMe oral supplementation may exert beneficial effect in various liver diseases or disorders (chronic viral hepatitis, cirrhosis, and drug-induced and chemical-induced hepatotoxicity (liver toxicity). It is know to be without harm as it is essentially produced naturally in the body. The dose range varies but most trials used 1200 - 1600mg daily in divided dosing of 400mg per serving. SAMe should be taken with meals to minimize a slight risk of GI upset, and to further mitigate against that, I would advise building up to a maximum of 1600mg daily in a graduated step-up program of 400mg for the firth three to four days, increasing by 400mg each third or fourth day thereafter until the threshold is reached. Only a handful of commercial products have been rigorous tested for quality control, with brands from Jarrow, Kal, and Natrol being approved.

There is also suggestive evidenced for the hepatoprotective activity of silymarin extract (from Milk Thistle), but here some animal and preclinical studies have raised a concern for the potential estrogenic activity of certain silymarin components, although no human clinical trial, or meta-analysis or systemic review of such, among many has found or confirmed evidence of this potential risk at a clinically relevant level. Despite this, the concern is disquieting until prospective human clinical trials definitely establish safety in active breast carcinoma, and given that the evidence base supporting SAMe is more compelling than that on silymarin, with no evidence of harm whatsoever, it would appear most prudent at this juncture to try SAMe. And although there are many other potentially hepatoprotective natural agents (including the otherwise stellar curcuminoids), the evidence for none of these has as yet risen to sufficient methodological level for recommendation.

Portal Hypertension Prophylaxis
As the portal hypertension, as well as liver fibrosis / cirrhosis, rigorous weight control and maintenance is indeed of course imperative as your physician observed, but I would add a caution to avoid acetaminophen (Tylenol) which perhaps not widely appreciated enough is strongly hepatotoxic and renotoxic (kidney toxic), and many people ingest it inadvertently when it is added to narcotic pain medication, and even over-the-counter cold and allergy relief products.

I would however disagree with the advice you were given that nothing further can be done for your disorder, and would strongly suggest an expert second opinion with a cardiologist and/or gastroenterologist, as there are various effective and well-evidenced interventions for primary prophylaxis of the more serious potential complications of portal hypertension, especially ascites and variceal bleeding, and treatment with beta-blockers and nitrates, and possibly also selective diuretics, can be critical in avoiding these complications. Notice that this is not primary treatment for portal hypertension itself, but rather prophylaxis against associated potential complications, but that should expansively be considered treatment nonetheless.


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

SoCalLisa

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Reply with quote  #43 
Wow Constantine that was fast!! I have to print this out so I can look at it very carefully...thanks so much...

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DoreenF

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Reply with quote  #44 
Constantine -I hope you're over the flu .. and I have to admit that I'm anxiously waiting for your input on this case study .. every time we have a sister who has entered hospice or pallative care I think back to the decisions I made about my own care and wonder if I made the right decisons ..   I'm scared  .... I based my decision to not do chemo on m oncotype score ... the case study does not reflect my exact situation ...  but I'm so interested in knowing what the final treatment decision was ...

I know that pathology accounts for much of a treatment decision ...   and there are many individual factors that also account for peoples' decisons -   the TAILORX trial should really help people at some point in the future  (5-10 year from now ?) meanwhile ...  those of us in that grey area ... intermediate risk area have very tough decisoins to make ... right about now I'm scared and questioning my decision to decline  chemo ...   I'm hoping that you can ease my mind a bit with some more info on oncotype ...    I had IDC Stage 1 (9mm)  ER/PR +++  in April of 2005 (her2/neu -) grade 2/3 (3 from core biopsy, 2 from lumpectomy) SNB with 2 negative nodes and oncotype DX score of 19 ... my treatment was lumpectomy, hysterectomy (other factors involved) , rads,  hormone therapy (arimidex)  I was 44 when I was diagnosed with Breat Cancer ,..  

I'm normally ok .. just get really anxious and scared when we see so many of our sisters being diagnosed or concerned with recurrance and mets ..

thanks so much for all that you do!!
hugs,
Doreen

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edge

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Reply with quote  #45 

Doreen:

Bronchitis actually, lingering a tad, but the worst is behind me, thanks for the good wishes.

The delay in my posting my commentary is in fact due not primarily to my bout, but to my trying to obtain some further information as to the current status of that case - a real one, from the practice of oncologist Steven Papish at Morristown Memorial Hospital (NJ): it had to my mind, in agreement with his judgment, taken a regrettable turn, as the patient was convinced by the overzealous surgeon she first saw, to insist on exactly the wrong treatment, which she did when Dr. Papish subsequently inherited her case, and would not budge, and so indeed she is on the precisely wrong therapy at this time. However, I am constrained as to how much I can learn, and so will declare a terminus if nothing is forthcoming by tomorrow, and so should be able to post my commentary and analysis by the end of this weekend.

I can understand your concern, so let me offer this at this time, pending the analysis which may shed further insight, that although your RS (recurrence score) of 19 is officially just at the start of the intermediate range (18 to 30), there is in fact, not widely appreciated, to date absolutely no compelling evidence supporting the benefit of chemotherapy in the intermediate RS group, and furthermore the large and seminal NSAPB B-20 study conducted by Soonmyung Paik and used as validation for Oncotype DX and for ultimate approval, found chemotherapy beneficial only if the Recurrence Score (RS) were greater than 30 (RS > 30), that is, only for frankly high-risk patients (assuming, still, node-negativity). Couple that with your context of a sub-centimeter tumor, favorable early staging, and highly favorable hormone-responsivity (double-positive), and HER2-negative tumor biology, there would have been no compelling imperative for chemotherapy, and there would really be minimal expert disagreement on this judgment.


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

Jeann46

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Reply with quote  #46 
So I'm wondering - if four well-respected oncologists have four different approaches to a particular case, does that mean that there are four different ways to solve (or deal) with the problem or that one, two or three (or, yikes, possibly four) are wrong and the patient will have a less positive outcome? I'm so confused about so many different approaches (now I'm talking about myself) - even doing research depends on WHOSE research one is reading or WHOSE website one is subscribing to, etc. Then one has to take into account how the research was conducted, how many participants in the study (more etc.). Basically, my question is, HOW MUCH DIFFERENCE DO THESE VARYING DECISIONS FOR TREATMENT MAKE in terms of patient survival or progression-free survival?
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DoreenF

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Reply with quote  #47 
Thank you soooo much Constantine ...   that makes me feel much better !!! 
I hope your Bronchitis will clear up soon and that you'll be feeling 100% again very very soon. 

Thanks again for all your information and opinions - it is truely helpful to all of us!! 
Thanks also for your efforts to followup on this case and give us insight and education about this disease.

I can't thank you enough!
Hugs,
Doreen


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"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto.
ShirleyHughes

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Reply with quote  #48 
Hey, Constantine!
 
This is my first post on the "Benevolent Dictator's" site.  I wanted to make my first post to you.  I HAVE MISSED YOU over on the BCO board. 
 
I was reading about curcumin about which you just posted.  It scared me!  I order many things from Vita Cost (NSI).  However, I am using Doctor's Best curcumin.  Sooo, my question is, should I join ConsumerLab?  Do they test a number of different brands?  I'm taking NSI calcium and Vitamin D and another brand for my magnesium.  I just want to make sure I'm not poisoning myself, and that I'm getting the ingredients in the amount that is on their label.
 
Thank you sooo much, Constantine.  And, Benevolent Dictator, thank you for this board.
Shirley

 
PS..I just found the "spell check!"


nosurrender

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Reply with quote  #49 
HI SHIRLEY!!!!
WELCOME!!!!!


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WE WILL PREVAIL





ShirleyHughes

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Reply with quote  #50 
Thanks, Nosurrender.  Love your site! 
Shirley
 
PS..Now if have 2 posts!
Bren

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Reply with quote  #51 
O/T

Just wanted to welcome Shirley and Joan. 

Hi Edge,

I was supposed to send you love from Joan, but she's here now, so she'll forgive me!

Bren
edge

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Reply with quote  #52 

Welcome Shirley and Joan, old and dear friends indeed!

And thanks also Gina, Bren, Doreen, Jeanne, Catherine, Naniam and others for the kind words, so timely, for as you must know by now after seeing the Academy Awards yesterday, I did not receive the prestigious award in the new category for Best New Medical Researcher in a Supporting Role (and I had such nice slides ready of a cute transgenic mouse running along an insulin growth signaling pathway), as I discussed elsewhere in these forums (click here), and it weighs heavily on me, so your good cheer is much appreciated by my diminished spirits. Indeed, not only was I overlooked, but the entire award was suspiciously dropped at the last minute, to the intense regret of I'm sure millions of viewers across the country. I guess I had to grease the right palms but lacking anything to grease them with, I was - in a word - eclipsed. As to the winners, Daniel Day Lewis may be a gifted actor, but he wouldn't recognize an mTOR inhibitor if it dropped on his head.

But I digress . . .



Shirley:

As to the quality control on CAM products, it's very uneven and cuts across all brands: so on curcumin, besides NSI not passing, neither did the otherwise high quality Solgar curcumin product, while Doctor's Best meets the strictest standard and is Sabinsa-certified, but on calcium products, Doctor's Best failed (NSI calcium wasn't tested); LEF fails on resveratrol and chromium, Solaray and Source fail on St. John's Wort, Aluna / Enzymatic Therapy fail on Valerian, Andrew Weil fails of Multivitamin/Minerals, etc., and that's just a sampler of winners and losers, no rhyme or reason. Given the sheer magnitude of brands, ConsumerLab only tests a couple of dozen or so in each category, choosing different brands across categories, but I am aware of no one brand that hasn't been problematic within at least one category, nor any one brand that consistently fails. I'll try to get a chance and post at least a selective summary of the well-known brands that passed, for the major CAM categories that might be of interest, but although anyone might be using a brand other than one of these, if that brand hasn't been tested, one can't know that it's unproblematic. But even with this limitation, ConsumerLab ratings are the best we have.


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

edge

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Reply with quote  #53 
Jeanne:

As to the issue of divergent opinions on therapeutic decisions, I'll discuss this more organically as part of the case challenge (pending tomorrow, hopefully or the next day - emergencies intervene not infrequently), but it's a serious problem and can therefore have serious adverse consequences to the patient. If all research were conducted and evaluated under the strictest evidence-based protocols and methodology, including intensive critical appraisal (a rare skill), with level-of-evidence quality ratings for seminal studies, aggregated into systematic review and well-motivated meta-analysis, there would be minimal divergence, and the balance of the evidence would speak authoritatively to the issue. But few oncologists and investigators have that sort of time and energy to invest, even if they had the rigorous skill set for undertaking such EBM review. It is easy, and seductive, to forgot that no one study is dispositive on an issue (we can always find some conflicting study or results) and simply read what one wants from isolated research, but we are after what the balance of the evidence says, not what single studies say. And beyond the limit use of EBM protocols and methodology, there is always the all too human trait of plain old misreasoning: I have to remind many professionals who say they believe upon the evidence both that fulvestrant is non-inferior to tamoxifen but no better (from certain studies), and that fulvestrant is non-inferior to AIs but no better, that both of these statements cannot be true, since AIs are systematically more effective than tamoxifen. Or the famous Steve Jones study widely cited to have established that docetaxel (Taxotere) was superior to paclitaxel (Taxol); but reading the study, one can see that a non-optimal dose schedule was used for paclitaxel, so that the only correct conclusion is that docetaxel is superior to an inferior schedule of paclitaxel. Or drawing conclusions of the adverse effects of AIs on bone from studies that mixed in both women with no prior tamoxifen and when with prior tamoxifen: this is illicit, since it is known that prior tamoxifen builds bone density, a benefit some of the women would not have had.

More later . . .


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

ShirleyHughes

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Reply with quote  #54 
Hello again, Edge.  Just ran into you on Joan's thread.
 
Thanks so much for the info about the supplements.  It's rather scary to think harmful things can be in our supplements.  Also, terrible when the amount of ingredient is not there.  I'll probably end up joining ConsumerLab.  I get their newsletter tantalizing me to join.
 
Don't work so hard!  You MUST take care of yourself.  We NEED you!
Shirley
ShirleyHughes

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Reply with quote  #55 
Hello again, Edge.  Just ran into you on Joan's thread.
 
Thanks so much for the info about the supplements.  It's rather scary to think harmful things can be in our supplements.  Also, terrible when the amount of ingredient is not there.  I'll probably end up joining ConsumerLab.  I get their newsletter tantalizing me to join.
 
Don't work so hard!  You MUST take care of yourself.  We NEED you!
Shirley
Indigoblue

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Reply with quote  #56 



Congratulations on your Acadamy Award...who is Daniel Day?

Please click on "more" next to video.  There is a beautiful Cyprian poem, anthem.  Describes you so well.

I have several questions and inquiries to ask you regarding medical research, as you know.  Should I post them here, or at Evidence Breast Cancer Watch...very complicated and I haven't found the source material as of today's medical piles of research "dig". 

Did you happen to view the little video about the Russian Hedgehog I posted earlier? 


Thank you, so much...dear sweet Constantine! 



(((little gentle higs)))

Indi

Sorry about the spelling misakes; DH and I are both ill with some kind throat/lunh and stomacn illness, now.  So fun...
Vision, the flu, and feeling nutrtioinally depleted; DH made chicken noodle soup.  It was metallic and made with canned things.  When one feels so ill with brochitas, or whatever this ilness is, it's horrible.  Now we are both ill; 
There are sooo many illnesses flying around; I am beginning to wish I could fly around, too. 

How does it feel to be a reseach lovie Star?

love

Indi

edge

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Reply with quote  #57 

Indi:

Time to talk of many things . . . of shoes and ships and hedgehogs, of cabbages and kings (apologies to the Walrus and the sealing wax). Loved the poem, . . . Cyprus of love and dreams. Thanks for all the creative material Indi!

As to posting, either way, here or to my Evidencewatch address, is fine, whichever you're more comfortable with. Look forward to hearing from you, always.

Constantine


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

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