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Old 01-23-2014, 02:05 PM   #1
Andrea Barnett Budin
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Coffee enemas...???!!!

[COLOR="Purple"]
Remember Joe, our fabulous hands-on Webmaster, Christine husband?! Joe oversaw our every post every hour of every day it seemed and was there for us at every turn?! I bless him and Christine all the time.

Joe and I talked on the phone for hours. I loved that man. So very sad when he passed on.

He had put me in touch with Ann Fonfa who is a tireless advocate for breast cancer patients. She is a longtime survivor who runs THE ANNIE APPLESEED PROJECT@mail.vresp.com

She holds conferences annually and reports to those on her mailing list (me, me, me!!!) and I always find informative info on breast cancer and alternative therapies. Ann operates out of West Palm Beach, Fla.

So, I had to share this with you, my Sisters, cause I am always thinking of you, even when I don't post.

This caught my eye among many others things.



Click here: New Tab

Love,
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 01-23-2014, 03:24 PM   #2
KDR
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Re: Coffee enemas...???!!!

Hi, Andi, pretty, pretty,
About the coffee enemas...haven't tried them, but some swear by them. One 17-year survivor told me she employed them daily, activates the liver, gets it going. Is that what Ann advocates?
Love, and sending gorgeous, magical icicles your way,
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 01-23-2014, 03:33 PM   #3
Jackie07
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Re: Coffee enemas...???!!!

Oncology (Williston Park). 2010 Feb;24(2):201.
Gerson regimen.
Cassileth B.
Author information
Abstract
The Gerson regimen, developed by Max Gerson in the 1930s, is promoted as an alternative cancer treatment. It involves consuming fresh, raw fruit and vegetable juices, eliminating salt from the diet, taking supplements such as potassium, vitamin B12, thyroid hormone, pancreatic enzymes, and detoxifying liver with coffee enemas to stimulate metabolism. Gerson therapy is based on the theory that cancer is caused by alteration of cell metabolism by toxic environmental substances and processed food, which changes its sodium and potassium content. It emphasizes increasing potassium intake and minimizing sodium consumption in an effort to correct the electrolyte imbalance, repair tissue, and detoxify the liver. The coffee enemas are believed to cause dilation of bile ducts and excretion of toxic breakdown products by the liver and through the colon wall. None of these theories has been substantiated by scientific research. Despite proponents' claims of recovery rates as high as 70% to 90%, case reviews by the National Cancer Institute (NCI) and the New York County Medical Society found no evidence of usefulness for the Gerson diet. An NCI-sponsored study of Gonzalez therapy, which is similar to the Gerson diet, showed that patients with inoperable pancreatic adenocarcinoma who underwent standard chemotherapy with gemcitabine (Gemzar) survived three times longer and had better quality of life than those who chose enzyme treatment, which included pancreatic enzymes, nutritional supplements, detoxification, and an organic diet.
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Old 01-23-2014, 05:44 PM   #4
Andrea Barnett Budin
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Re: Coffee enemas...???!!!

Ann writes: Currently coffee enemas, used for liver detox, are considered alternative medicine. Acupuncture and even Yoga used to be thought of that way too. Things can change but SO SLOWLY.

Coffee enema info found here -- I HOPE...: http://annieappleseedproject.org/doc...enemas2014.pdf

As our Brenda used to say, something like -- I'D RATHER BE ANECDOTALLY ALIVE THAN STATISTICALLY DEAD.

When the West seriously addresses supplements, I hope I'm still around to say, I KNEW IT! But rather than wait for evidence, I have forged ahead on that front (per my oncological integrative doc in NYC) since '98. I can only tell you, I BELIEVE. And lots of studies concur. And lots of studies differ. My Inner Voice urged me to go ahead anyway.

I am hoping the above link works, so you can see what Ann says. She is back to every other day coffee enemas (I have personally never tried this, but am familiar with the Gerson plan and so "anecdotal" evidence from ca patients).

January 2014 Conferences and CAM issues (COMPLIMENTARY ALTERNATIVE MEDICINE)


Every day we spend time reading journals, articles, newsletters and other such to find interesting information.
We post on Facebook, sometimes Twitter and then use this e-newsletter to share interesting articles we found this month.
Generally it is as though there are two different worlds (maybe 3). The mainstream articles directed toward Oncologists with just about NO mention of any story but another clinical trial of a chemotherapy regimen minutely different than previous ones with minutely different outcomes. Usually not much clinical value. Almost no mention of any natural intervention. Though that said, ASCO - American Society for Clinical Oncology does publish stuff on ginger and yoga from time to time. To some degree we feel like Advocacy is working there. Those selling 'alternative' substances or using 'alternative' protocols dislike and mostly fear the mainstream. The folks in the middle are US, the people with cancer trying to make informed and educated decisions. Annie Appleseed Project strives to HELP.

March 6-8, 2014 Conference
Still time to REGISTER for Annie Appleseed Project's 8th Evidence-based Complementary & Alternative Cancer Therapies conference in West Palm Beach, FL.
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Reducing Risk

This month there were quite a few articles discussing the COMBINED benefits of eating more fruits and vegetables along with moderate exercise. These are really two BREAKTHROUGH points we have always emphasized. (Combining healthy behaviors like eating well and being physically active without being athletic). Here's an interesting study - not surprising.

"A new multicountry study provides more evidence that certain dietary and lifestyle factors can increase the risk of developing cancer.

Results from the study, published in the January issue of Nutrients, show that smoking and diets rich in animal products have the strongest correlations with cancer incidence rates.

The strongest correlation with animal products was seen in cancers of the female... breast, corpus uteri, kidney, ovaries, pancreas, prostate, testicles, and thyroid, and in multiple myeloma."
J Nutrients. 2014;6:163-189.

--------------------------------------------------------------------------------

Complementary Therapies aka Integrative Oncology

outdoors2 Anyone who uses conventional therapies knows that there are many adverse effects (we think that great marketing term 'side' effects doesn't really call it like it is). But you know since you are reading this newsletter, that there are a great many natural ways to reduce those toxicities. Here's an excerpt from the abstract for grapeseed extract.

" Recent studies have shown that the beneficial health effects promoted by consumption of grape and grape products are attributed to the unique mix of polyphenolic compounds. As the largest group of grape polyphenols, flavonoids are the main candidates considered to have biological properties, including but not limited to antioxidant, anti-inflammatory, anti-cancer, antimicrobial, antiviral, cardioprotective, neuroprotective, and hepatoprotective activities. Here, we discuss the recent scientific advances supporting the beneficial health qualities of grape and grape-derived products, mechanisms of their biological activity, bioavailability, and their uses as nutraceuticals. The advantages of modern plant cell based biotechnology as an alternative method for production of grape nutraceuticals and improvement of their health qualities are also discussed."

Nutrients 2014, 6(1), 391-415

--------------------------------------------------------------------------------

Alternative Therapies

Last week we got a call from a woman who told us her sister had really benefited from using PolyMVA. This company has been a sometime sponsor, exhibitor at various of our conferences and an advertiser in the conference journal (only advertising we accept). So that was quite gratifying information. We do like to think we make good choices.

PolyMVA info

There are many options in the 'alternative' world, but not as many studies as we probably all would like.
More on Alternative Therapies

Bucket and 5' long tube As everyone probably knows 'alternative' refers to substances and protocols that are NOT used by conventional oncologists. Some people choose to use them if/when they are told by their doctor "there is nothing more we can do for you".

Some people choose alternative therapies because they have no faith in conventional treatments or are diagnosed late stage. Some people have other illnesses that preclude the use of conventional treatments due to the toxicities involved. BTW, never, that is NEVER just do conventional treatments. It is MUCH better for your body to combine with some complementary therapies. Acupuncture is recommended for all.


There's much more information in our Archive section on Alternative Treatments. And we'll speak with you directly if you wish. (561) 749-0084

--------------------------------------------------------------------------------

8th Evidence-based Complementary & Alternative Cancer Therapies Conference information

We're gathering a variety of speakers with topics ranging from "Integrative Approaches to Molecular Target Therapy" from Dr. Keith Block, "Controversial issues in preventing and managing cancer including Salvestrols, vit D, K2, A and Iodine" from Dr. Michael Schachter, to “Hyperbaric medicine, nutritional strategies and ketone esters for the metabolic management of neurological diseases and cancer” from Dominic D'Agostino and grad student Angela Poff, and "Optimum sleep during cancer treatment and beyond", Dr. Ashwin Mehta.

Penny Block, PhD, "The Impact of Bio-Behavioral Interventions in Cancer Treatment and Cancer Outcomes" and Madhavi Kasam "Homeopathy - the Gentle Care".

Lots more speakers including our Patient panel where real people present what we like to call Patient-centered Evidence! Aggarwal long view

Will YOU be joining us this year?

NEW: Dr. Tony Jimenez, and Dickie Walls, AP.
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 01-24-2014, 06:20 PM   #5
Laurel
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Re: Coffee enemas...???!!!

Andi,

I met Ann Fonfa a few years ago after attending one of her talks in Oyster Bay, LI. She is a knowledgeable and sincere member of cancer survivors seeking alternative methods of helping the body to heal itself. She also supports nutritional supplementation amongst other approaches. My attitude has been to embrace the approach of our western medicine educated MDs, but to also employ some nutritional approaches. I think the spirit is also not to be neglected when battling cancer.

I had followed the Annie Appleseed website only to find that a dear friend of mine is her cousin. It was she who took me to meet Ann. Personally, I plan on passing on the coffee enemas, but jamming down blueberries? Now that is another matter!
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 01-27-2014, 05:57 PM   #6
tricia keegan
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Re: Coffee enemas...???!!!

I tend to steer clear of alternative treatments and especially the coffee enamas which were big news ten years ago and proved they do nothing !
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 01-27-2014, 11:27 PM   #7
BonnieR
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Re: Coffee enemas...???!!!

There are a lot of levels of alternative treatments and many unproven and possibly harmful ones Everyone has to find their personal comfort level I steer clear of most non traditional approaches that are at all invasive or introduce substances into my system (although, of course, chemo is about as toxic as things can be and I took that! It has a track record)
But I believe in dietary/vegan/healthy eating. Meditation, acupuncture, yoga. Spiritual things, logical things
Keep the faith everyone!
__________________
Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 01-28-2014, 05:03 PM   #8
Andrea Barnett Budin
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Re: Coffee enemas...???!!!

I've been riveted to what survivors of every unimaginable adversity have to say, since I was around 7 years old. I sensed that each person had a message. Something I could learn and incorporate in my awareness.

I also listen intently to winners of various ilk as well. From childhood, one would speak on television and I would turn my attention and full concentration on their words! I began to notice a common thread that ran throughout their commentary, and I absorbed that information as thoroughly as I could. I do believe that accumulated knowledge contributed to my survival, along with surgery, chemotherapy, Herceptin, the excellent advice of numerous oncologists and nurses, meditation, my supplements (suggested by one of those cutting edge integrative oncologists), my impassioned will, my imagination, my guided images, love, compassion, kindness, open-mindedness, generosity of Spirit and humble gratitude...

We learn by sharing experiences and discussing what is new and cutting edge. Of course, it's our choice to adopt what we hear or disregard it. We have each been granted the power of choice.

However, ranting is never helpful. It incites emotions and obliterates potential lessons learned.

Sometimes, I choose to disregard others' input, as my Inner Voice, or heart, direct me to do. I have always trusted that intuitive feeling that comes over me. I know that my Spirit (which I see as guiding and protecting me, nurturing and sustaining me, not to mention imparting eons of wisdom) has always served me well. It is the very essence of who I am.

I never considered coffee enemas personally, but felt I should share what Ann, a longtime survivor, had to tell. Over the years, I've heard numerous people espouse this for various conditions and believed it might enlarge our scope of understanding.

With Love and Light, as always,
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-12-2014, 01:57 PM   #9
KDR
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Re: Coffee enemas...???!!!

Andi,
Said ever so eloquently. I, too, am on board with alternatives, and I believe that has attributed to our successes thus far. There is room for knowledge, to learn the synergistic ways our bodies HELP therapies along, and work alone.
I have never tried Gerson, but don't hammer those who do. Have never done coffee enemas, but find the concept intriguing. As my 17-year survivor friend explained to me, the action stimulates the liver into working. She did it religiously. Now that may be pooh-poohed by some doctors, but that's o.k. We know they are still in their own search for what works.
It's a fact: alcohol is banned from some breast cancer patients entirely, yet a liver specialist I saw recently advocated one alcoholic drink per day for women and two for men. Great for NAFLD, he says. He is credentialed beyond the Heavens.
What I would like to see here is tolerance. We all have our ways and means.


Yours,
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 02-12-2014, 03:23 PM   #10
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Re: Coffee enemas...???!!!

Your words are wise and wonderful, Karen.

Thank you for sharing. It is all so very true. My Inner Voice KNOWS this.

Reacting vs acting is foolish.

We must learn from one another.

So much unknown.

I did recently google coffee enemas and found some videos of lovely people who were literally "addicted" to them. They said they never felt better than when they do these, which they do daily. Okay, a bit over the top, but they looked healthy and happy.

I know someone when mental issues who tried this and also said she never felt happier or better in her life. She was peaceful and smiling as she told me vs her usual stressed out emotional self. It all registered in my head. Note to self.

Though I haven't ever tried it, or felt the need to, I wanted to share yet another possibility.

I believe it's important to remain open to all. Consider it, and then determine what is best for us. Never to condemn another for their valiant efforts.

Like living with an open heart.


“As we let our light shine, we unconsciously
give other people permission to do the same.”

—Nelson Mandela
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-12-2014, 05:08 PM   #11
BonnieR
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Re: Coffee enemas...???!!!

Yes. This is a great forum for all of us to share our opinions
Keep the faith
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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