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Old 05-18-2016, 09:32 PM   #1
VDC
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Resveratrol--interpret this article?

Howdy! I"ll admit this is a rather dense read, but I am looking for some other input regarding its reference to trans resveratrol and hormonal status of BC. If someone has the time, could they take a look and give their take on trans resveratrol in ER-, PR- BC? obviously from the study trans resveratrol would be contraindicated for hormone sensitive cancers, but what out the ER,PR negative ones? Thoughts anyone?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC28446/
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Old 05-19-2016, 07:55 AM   #2
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Re: Resveratrol--interpret this article?

VDC

Are you taking Reservatrol? Im assuming you are. Ill read the article at work in the pharmacy but you have to be carefull of what is done in a test tube ie in vitro. latin for in glass. Ill see if there are any in vivo ie living animal studies showing animals with cancer were made worse by taking Reservatrol. I would take this more seriously than in vitro studies.

Paul
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Old 05-19-2016, 12:58 PM   #3
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Re: Resveratrol--interpret this article?

I Have seen studies that show Reservatrol stimulating Breast cancer in mice.
Yet I have also seen studies showing the same Reservatrol inhibiting metastasis. Ill keep on searching. I really dont know what to say.
There is a bias in the "system" against what is called alternative medicine.
Even science isnt as objective as one might think. Right now it seems Reservatrol is good and bad at the same time.

Paul
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Old 05-20-2016, 01:04 AM   #4
VDC
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Re: Resveratrol--interpret this article?

Thanks! I appreciate the effort! Truly. ....I may have answered my own question though!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC28446/

"An estrogen receptor-negative cell line, MDA-MB-231, was used to confirm that estrogen receptor was required for resveratrol action"

And yes, I have been taking Trans Resveratrol (among other things). My last exam showed a decrease of 30% volume of cancer....and it was with "only" supplements. I have been trying to determine just which supplements might be responsible for the fantastic results.

My oncologist is less than enthusiastic with my choices. The clinical trial that I had applied to was awaiting IRB approval and it kept being delayed! I told my oncologist that I would NOT go forward with treatment until one of two things happened: either there was clear progression of disease, or MD Anderson was granted IRB approval. That was in January.

May 8th, I had additional imaging done to determine the degree of progression and discovered 30% regression. Most unexpected. Needless to say, I have been scouring the medical journals looking at all the supplements I added to my diet in early January. Trans Resveratrol is one of those.

My variety is ER-, PR-, HER2 +3 so the distinction between ER+, PR+ and ER-, PR- is important and sometimes difficult to ferret out of the research.

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Old 05-20-2016, 01:14 AM   #5
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Re: Resveratrol--interpret this article?

...and yes, I DO understand the bias of the system! I am an Organic/Biochemist, although I teach now.

We have been using Trans Reservatrol ever since I was able to lower my HoFH son's LDL cholesterol to 53 using Trans Res alongside traditional medicine. (HoFH stands for Homozygous Familial Hypercholesterolemia) Traditional medicine had lowered his LDL from 750 to 135....although it took SIX medications all taken at the same time to do it! We thought that was fantastic! But when I added Trans Resveratrol to his cocktail, the LDL dropped further to 53. His doctor was a skeptic and required that we withdraw the trans res., wait to see the LDL climb back to the 135 range, then introduce the trans res again to see if it was truly the trans res that was lowering the LDL. It was. (I think it competes for the same CYP pathway as Lomidapide)

That was when I became a believer in complimentary medicine. Not alternative, I still believe in traditional medicine. BUT I also believe there is a place for supplements as a complimentary treatment.

Now if I could just figure out which supplements I take that is shrinking this cancer of mine........... that is a little harder to determine since there isn't a marker like LDL cholesterol to check!
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Old 05-20-2016, 08:13 AM   #6
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Re: Resveratrol--interpret this article?

VDC
Its obvious you know your stuff. Another article I read showed Reservatrol decreases MMP-9 or Matrix Metalloproteinase=9/ These MMPs dissolve the intercellualar " cement"
and are important for cancer metastasis. Another article showed that Reservatrol inhibits the growth of stem cells.

Yes the Drs get skeptical and sometimes hostile. Im not going off my rocker if I were to say "if you could stop cancer progression with OTC supplements, there would be economic consequences. Im not saying you can.

I dont know if you are taking Pycnegenol but in one experiment they treated osteoarthritis with I think 100mg Pycnegenol a day. The C reactive Protein, the important marker of inflammation dropped from 3.9 (mg/Liter?) to 1.1/ Inflammation is very important in the initiation and progression of cancer. Cancer has been described as "a wound that wont heal" and this implies inflammation is an intricate part of the equasion

Paul
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Old 05-20-2016, 01:31 PM   #7
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Re: Resveratrol--interpret this article?

Quote:
"Another article I read showed Reservatrol decreases MMP-9 or Matrix Metalloproteinase=9/ These MMPs dissolve the intercellualar " cement"
and are important for cancer metastasis. Another article showed that Reservatrol inhibits the growth of stem cells."

Now that is something I did NOT know! I did a very quick search and discovered the following: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4058041/

Thanks for the info! Gives me something else to research and think about!
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Old 05-20-2016, 01:37 PM   #8
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Re: Resveratrol--interpret this article?

Quote: "I dont know if you are taking Pycnegenol but in one experiment they treated osteoarthritis with I think 100mg Pycnegenol a day. The C reactive Protein, the important marker of inflammation dropped from 3.9 (mg/Liter?) to 1.1/ Inflammation is very important in the initiation and progression of cancer. Cancer has been described as "a wound that wont heal" and this implies inflammation is an intricate part of the equasion"

I had never heard of Pycnegenol until you mentioned it! I've heard of the inflamation/cancer possible connection and personally believe it to be true. But I haven't been able to find any natural ways to reduce inflamation. This sounds intriguing to me and I will have to research it and perhaps add it to my "cocktail."

I HAVE inflammation. Chronic inflammation caused by a surgery seven years ago. I have been in and out of physical therapy, take a muscle relaxant etc all in attempts to reduce the chronic inflammation in my abdominal muscles. Even if I did not have cancer, I would be open to ways to reduce the inflammation (and corresponding pain) associated with these core muscles.

A HUGE thank you for this information. It may be very beneficial not only to my cancer, but to my chronic pain caused by chronic inflammation.

I wonder if there is a connection between chronic inflammation and the particular variety of cancer that develops? Perhaps ER-, PR-? Just wondering. I will have to do some research to see if there appears to be any connection......definitely food for thought!
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Old 05-20-2016, 02:48 PM   #9
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Re: Resveratrol--interpret this article?

VDC

Ill mention Berberine. This has antidiabetic and and anticancer action. There is a phenomenon called epithelial-to mesenchymal transition that is important in metastasis. I believe this is a change in cell shape that causes cancer cells to be more motile and able to metastasize. Berberine seems to inhibit this.

Look up Cimetidine brand name Tagamet. It is now (for years) an over the counter histamine 2 blocker antacid. Tagamet intereferes with the production of
E-Selectin, a protein that forms on the endothelial cells that line the small blood vessels. This protein attaches to c protein found on many cancer cells called I believe Lewis Sialyl antigen. When the cancer cells hook onto the E Selectin in te small blood vessels it aids metastasis. Cimetidine is only effective against those cancers that produce the sialyl antigen but if the cancer is metastatic one it is a good guess they are doing this. Cimetidine is a drug of relatively low toxicity although it can act as an enzyme inhibitor increasing the serum levels of certain drugs.

The effect of Cimetidine has been dramatic. They did one study with colon cancer patients. This was done decades ago. One half the patients were given 800mg Cimetidine daily I think starting before surgery and continued for one year. They looked at 10 year survival. It was something like 85% for the colon cancer group getting the Cimetidine daily and 49% for those just on sugery plus oral f flurouracil. The cimetidine patients also got the daily 5-FU so the survival was unlikely to be due to the Cimetidine alone. Im sure you will find this info on google or pub-med. This was colon cancer so you cant say this applies to other cancers. But the E Selectinvs Siallyl antigen thing seems to be general and not cancer specific. See what you find

Paul

PS Other Histamine 2 antagonists such as Zantac (Ranitidine) and the others dont seem to have this anti E Selectin effect. Common sense would say they would. Pharmacology isnt common sense many times.
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Old 05-20-2016, 09:43 PM   #10
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Re: Resveratrol--interpret this article?

Ah yes, Berberine! I've been taking Berberine for about 3 months.

Actually I'm on a smorgasbord of things!
IP-6, inositol hexaphosphate
Indole-3-Carbinol
Trans Resveratrol
Quercetin
Evening Primrose oil
Co Q 10
Cranberry extract
Grape Seed Extract
Curcumin
Flaxseed Lignan
Vit D
Flaxseed oil
Aspirin
Rosemary
Green tea extract
Dietary ground flaxseed (and I HATE the stuff)
Cinnamon
Berberine
Spirulina
pecans
Melatonin
Aloe Vera
Niacin



Levothyroxin
Atorvastatin
Cyclobenzaprine
Estrogen/Progesterone (yeah, I know........)


I can't begin to tell you the number of hours I have spent reading articles on these supplements in the medical journals...... but I'm used to it, I've been researching HoFH for over sixteen years!

My operating thought is: 1. is there any scientific indication that it MIGHT be beneficial? 2. Is there any scientific indication it could be harmful? 3. Are there any harmful interactions with supplements or medications that I'm already taking.

I am willing to accept that I may be spending money on useless supplements, but as long as they are not harmful, I find it acceptable. I am also willing to accept that much is not known about many of these supplements which means some of them could indeed be harmful. Which is why I often ask for complete metabolic panels to be run....just to catch any harmful side effects. (so far there have been none)

I now have reason to believe that something in my list of supplements is deleterious to cancer. After all, in the last three months the extent of my disease has shrunk by 30% with no other treatment other than these supplements. I will probably never know which supplement, or combination of supplements is in play here.

I will be very curious to see what the next few months bring!
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Old 05-20-2016, 11:01 PM   #11
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Re: Resveratrol--interpret this article?

Paul, You are obviously very knowledgeable. I"m curious, what is your background?
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Old 05-21-2016, 01:16 AM   #12
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Re: Resveratrol--interpret this article?

Here's an interesting aspect of Pycnegenol. Sounds like it might have pro-apoptotic effects for some cancers. Interesting study because it used the serum of people who took one dose of Pycnegenol to apply to cancer in a "test tube"

https://www.spandidos-publications.com/ijo/46/4/1629

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Old 05-21-2016, 01:22 AM   #13
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Re: Resveratrol--interpret this article?

VDC

Im a pharmacist. Im really (mentally) more of a pharmacologist but I got married after graduating USC Pharmacy School and started working at thriftys
My wife had a six year old boy from another marriage so I gave up getting a PHD in Pharmacology. So I started full time work as a pharmacist. I still work partime as a pharmacist.

In 1978 I started working as a pharmacist at Sloan Kettering Memorial. What I saw there was burned on my brain. I lasted a year then enlisted in the Public Health Service.

I developed a fear/fascination with cancer and kept reading up on the subject. When I saw so little progress in so many years I started to get interested in the alternative things like berberine, cimetidine, pycnegenol etc. Certainly I see the value of chemo and Herceptin. About 75% of childrens cancers are curable with chemo despite the rigors of the treatment.
Id be the first to tell a woman whose child is being treated to avoid alternative things because of the possibility of anti-oxidants (supposedly) interfering with chemo etc. With adult cancers, chemo seems far less effective and to me it is worth the risk to add on alternative methods. It really blows my mind to see so little progress in so many years with so much publicity and so much research and money involved.

Paul
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Old 05-21-2016, 11:02 PM   #14
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Smile Re: Resveratrol--interpret this article?

Ahhhh....your responses make a lot of sense now! I am glad to be a recipient of your research, or curiosity, or fear? Keep the info coming my way! I'll take any suggestions or ideas and do some reading!

I'm a bit of an amateur sleuth when it comes to lipids and lipid metabolism. In fact, I chose bile acid sequesterants as my topic for graduate school. Of course I had one VERY good reason to study them.....our seven year old son with HoFH! (he is now 23 and no heart disease! ....and an LDL of 53 thanks to the interaction between Trans Resveratrol and Juxtapid)

Sloan/Kettering has a reasonable website for herbs/botanical etc. I use it as a starting place for finding research articles. From the articles listed as references, I branch out to the articles that reference them etc. I'm sure you are already familiar with it?

https://www.mskcc.org/cancer-care/tr...medicine/herbs

I also use the WebMD website as a starting place for research articles on particular substances and then move to those articles that reference those. WebMD is more thorough.

I took your advice and after doing a little research of my own, I ordered some pycnogenol. There isn't a lot of data out there related to cancer and not much research, but what I did find was fascinating and worth a whirl. And I'm also interested in the possibility of reducing the inflammation that I deal with on a daily basis. I've tried pretty much everything else!

Thanks for the suggestions, and please DO keep the suggestions or ideas coming!


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Old 05-21-2016, 11:16 PM   #15
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Re: Resveratrol--interpret this article?

VDC Excellent. I dont want to sound like a broken record but legally I have to advise you to discuss any supplement with your oncologist.

My wife and I are going on vacation for a week (anniversary) so I wont be on the board probably.

I stated that Ive seen very little progress since I worked at Sloan Kettering in 1978.
Of course there has been some but not much. The cancer paradigm is the same. Fear of suffering, fear for young children, lossing hair etc etc. Nothing has really changed much. We called adriamycin the red devil in 1978 as we made it up under the hood. Im sure the pharmacists and patients call it the same today. We used Cytoxan in 1978. Same today. Same with Methotrexate.

If you would, do some research on Interleukin 6 and its involvement in cancer. Please put a number of relevant abstracts on the board. You might find the research interesting. I want to show you (at least in my opinion) how the cancer situation is as much or more a matter of politics than science,

Paul
PS I think pycnegenol has been shown to decrease the action of interleukin 6. It does decrease C reactive protein. When interleukin 6 acts on liver cells, C reactive Protein, the main marker of inflammation is produced.

Paul
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Old 05-22-2016, 11:55 AM   #16
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Re: Resveratrol--interpret this article?

Paul,
No worries! You are off the hook legally. I DO tell my oncologist of everything I am taking. Ultimately it is my decision and while I do take information from all sources, ultimately it is my own research and my decisions to make. So far my oncologist has worked with me, although I think I DO try her patience at times! I require medical research as proof from her. The "status quo" or especially the hated word "protocol" is not in my vocabulary which frustrates her.

Even the radiation oncologist was frustrated by my way of looking at the research and developing my own opinion. When we discussed radiation after surgery I asked for the research indicating his quoted 50% decreased risk of recurrence with radiation. When I read the articles for myself, I discovered that radiation only decreased recurrence for about 10-12% of all women and made no difference for the other 88-90%. For 75-80% of women their cancer would not recur even if they did not receive radiation. For the other 20-25% 10-12% will recur even with radiation. So, radiation only helps 10-12% of women. Yet, 30% of women receiving radiation treatment would have life long side effects from it. I then asked if my analysis was correct. He didn't want to answer and ultimately said "I would prefer you didn't look at it that way. I would prefer you recognized a 50% reduction in recurrence." Again, the way things are said matter and are manipulative at times.

All of this to say that I do my own research and come to my own decisions. I appreciate your information because it gives me a new line of thought to research. But, I take responsibility for my own decisions. Any poor decisions are mine alone!

I will look into the Interleukin 6 and see what I find. I don't know much (okay anything) about it.

Thanks! ....and have a GREAT vacation!
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Old 05-23-2016, 01:22 AM   #17
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Re: Resveratrol--interpret this article?

Paul, Okay you asked for it! Here is my first article that seems to address prognostic ability! But first let me comment that some of these articles are rather old. Since this topic is new to me, I didn't mind reading the first studies done, but more recent research should have more accurate information!

http://onlinelibrary.wiley.com/doi/1.../ijc.10833/pdf

The next study seems to show that IL-6 is higher in women with high grade cancers and are more likely to metastasize

http://www.nature.com/onc/journal/v2...c2009180a.html

And, IL-6 is higher in women who have mets and the degree of mets correlates with higher IL-6 levels. Increased IL-6 levels indicates extent of disease

http://onlinelibrary.wiley.com/doi/1...ijc.10833/full

Ah, and IL-6 serum levels correlate to poor survival in patients with hormone-refractory metastatic breast cancer

http://www.nature.com/bjc/journal/v8.../6600956a.html

IL-6 may be produced by cancer cells and breast cancer cells that are sensitive to drug treatment do not express IL-6, whereas high levels of IL-6 are produced by multidrug-resistant breast cancer cells.

http://cancerres.aacrjournals.org/co.../24/8851.short


Also, IL-6 is inversely associated with KI-67 status and tumor grade (which seems to contradict early study on tumor grade)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2362311/


AND this one is just a great overview of all IL's and what is currently known!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4307328/
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Old 05-25-2016, 10:07 AM   #18
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Re: Resveratrol--interpret this article?

Thanks for all of this great information, I've grown so weary of reading, reading and reading, mostly over my head/vocabulary/comprehension, so it requires reading plus deciphering and side learning to finish the reading. Meantime, it's 9 years of juggling supplements, trying to correlate results, and honestly, I'm so tired of all the pills. BUT, this thread has so much info, I'm gonna plow through and see what might apply to me.

VDC, what is your breast cancer history? Have you done any conventional treatment? If you don't mind sharing/creating a signature, I'm most curious to compare our lists, I'm also er/pr negative. Thanks a bunch donocco and vdc, you are inspiring me to dig in
-SoCalGal
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 05-25-2016, 09:33 PM   #19
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Re: Resveratrol--interpret this article?

So Cal Gal,
Honestly I have been very hesitant to share my story because it is so very simple and doesn't compare in any way or shape to most of the things all of you have gone through. I cannot begin to compare to your lives. Even, now when requested, I hesitate.

I was diagnosed in September 2016 with high grade (grade 3) , ER-, PR- DCIS. That was after a rather traumatic stereotactic biopsy where I developed a 3.5 inch by 1.5 inch by 1.5 inch hematoma....in about two hours. Quite painful to say the least.

Due to mishandling at my local facility I decided to travel to the Mayo clinic for a second opinion. A new biopsy revealed HER2 3+, KI-of 30%, and extent of disease about twice what my local facility had said 2.7 cm. or a little over an inch. There was a "rush" to go to surgery but I found a clinical trial that I really wanted to join. By early December I was found to be a good candidate for the study but with the holidays was told I should wait and fly there in early January. Over the Christmas vacation I started doing research of my own and decided to add supplements to my life. I added things like Melatonin and Curcumin as well as others that were currently in clinical trials to determine their efficacy. I figured if they had enough merit to be in clinical trials, then it couldn't hurt to add them to my life.

In January I was informed that the PI (principle investigator) of the study was moving his research team to Moffit and the trial would be on hold for as long as 18 months. That was simply too long for me to wait so I asked my Mayo oncologist for another evaluation to determine how much my disease had grown. Early February imaging revealed no change in extent of disease. My oncologist was stumped and just kept muttering that high grade SHOULD have progressed.

I found the experience encouraging and since there was no other explanation decided that the supplements must be helping to make this cancer unhappy. I then applied to another clinical trial that was due to start March 1st. (this was early February) ...and while I waited I did more research and branched out with supplements that were not currently in clinical trials. When the clinical trial had not gained IRB approval as of April, I asked my oncologist for more imaging. Results of the imaging on May 8th, showed 30% decrease by volume or 20-25% in each of two dimensions.

My continued decision to wait for the clinical trial caused my oncologist great consternation and frustration. She would have liked me in surgery the next day! But I decided given the regression in disease, I would wait until either the trial was given IRB approval OR my imaging showed progression of disease.

The trial was granted IRB approval this week. But,....now I'm wondering if I want to wait until July to see what new imaging shows. If this disease has shrunk, what could happen in two more months? Obviously I"m doing something right?

Now, as for the research that I do. Yes, you are correct that it takes a LOT of time and I have had to learn a new vocabulary to do it. But it can be done. In our cases we need to look at not only what the research says but also if it is in vitro (in the petri dish), in vivo (in the body), or ex vivo (blood or other fluids taken from the body after a treatment and then applied to a petri dish sample). Of course the in vivo carries more weight than the other two. The other factor that has been much harder to ferret out, has been the effect of any given supplement on ER, PR positive cancer versus ER,PR negative cancer. Sometimes it is near impossible to find any reference to it. In the in vitro and ex vivo cases you can look at what cell lines are used. Those cell lines each have their own hormone, and HER 2 status. Once you know which ones are which, it becomes easier to tell how a given supplement MIGHT affect our "brand" of cancer.

And in some cases, there are mixed research that contradicts each other. That appears to be the case with Trans Resveratrol although most of the PRO cancer aspects appear to be associated with hormone positive cancer. Very few appear to be associated with hormone receptor negative cancers, although there are some.

Since my last appointment on May 8th, I have continued to research and add to my repertoire of supplements. With each addition I do wonder if I am making the correct choice on that particular supplement. The human body is SO complex that it is impossible to predict every reaction. But I am willing to take those risks.

Anyway, sorry for the rather long winded response. If you have any questions about any particular supplement that I take, feel free to ask. Each one was researched extensively! I can probably point you in the direction of the research that caught my attention!
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Old 05-25-2016, 10:27 PM   #20
SoCalGal
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Re: Resveratrol--interpret this article?

VDC, Just wanted to jump online and say thanks for the open, honest response and for sharing so much valuable info. Really appreciate that!! I've re-read back thru some of your older threads. Couple of things to consider, historically, HER2 is an aggressive cancer, with Herceptin available, plus the surgery, odds are strongly in your favor of beating the DCIS and never having to deal with cancer again. The supplements that are helping clearly have impact. Keep in mind that vitamin c in mega dose infusions will also arrest cancer but its effect wears off in just a few weeks. Not to undermine your supplements list, just as someone who has had cancer for too many years, better to be safe than sorry and not suffer regret. Hope that you throw every available tool at this crap disease, so it is truly out of your life. I have taken a lot of supplements consistently for the last 8 years, and given up wheat and dairy in my attempt to further reduce inflammation and balance omegas. The last year I've fallen off the supplements wagon - they just go on my last nerve! You are inspiring me to begin again, at least with the very basics, vit D, the oils, ubiquinol since I'm on Herceptin, and several others, I'm too tired to look at the cabinet right now Let's keep communicating!!
-SCG
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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