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Old 11-26-2007, 10:19 AM   #1
Lani
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immune system can do one of three things

according to this article: destroy the cancer, make it into a chronic disease by putting it into a state of dormancy ("sleeping beauty") or find itself unable to detect/effect the cancer due to stealth techniques, protective techniques utilized by the cancer. It is hot off the press in Nature and here is a discussion about it

http://www.medscape.com/viewarticle/566450
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Old 11-26-2007, 11:26 AM   #2
Jade
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Very interesting article Lani,

it makes common sense to me. Despite our best efforts, we have all seen how sometimes the cancer just outsmarts our immune systems and
we lose the fight, no matter what we have done. Hopefully we can each find a way to keep our immune systems strong enough to Search & Destroy (the evil cancer cells), through nutrition, supplements, exercise, positive thinking/attitude, whatever it takes!
Thank you for the time and effort you have made to provide us with
plentiful, helpful and informative research so that we may have knowledge and therefore power to fight this beast.
Jade
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Dx Nov.04 - Stage 1, Grade 3, widespread high grade DCIS, Paget's disease of nipple, 8mm tumor invasive DC (ductal carcinoma), ER/PR-, HER2+++
Nov.04 - left mast., clear margins, 6 of 6 nodes clear
Feb.05 - began EC chemo, 4 rounds (every 3 weeks)
Aug.05 - began Herceptin every 3 weeks for 1 year
Aug.06 - ended treatment
NED
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Old 11-26-2007, 12:10 PM   #3
hutchibk
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Absolutely! - proper care and feeding of our immune system is crucial to this fight!! Thanks Lani.

Google this too "Psychoneuroimmunology" ... - very interesting and scientific info about how the mind body connection enhances the immune system...

(a good quick reference is this link http://www.mnwelldir.org/docs/immune/psychon.htm)
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 11-26-2007 at 02:14 PM..
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Old 11-26-2007, 12:18 PM   #4
StephN
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Question

I get a "log on" page and not the article.
Guess we have to join Medscape?

Lani - do you have another link to Nature?
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 11-26-2007, 01:37 PM   #5
Lani
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try going to Google, enter Entrez PubMed and put the PM ID#18026089 in the rectangle

Nature. 2007 Nov 18; [Epub ahead of print] Links
Adaptive immunity maintains occult cancer in an equilibrium state.

Koebel CM, Vermi W, Swann JB, Zerafa N, Rodig SJ, Old LJ, Smyth MJ, Schreiber RD.
Department of Pathology and Immunology, Washington University School of Medicine, St. Louis, Missouri 63110, USA.
The capacity of immunity to control and shape cancer, that is, cancer immunoediting, is the result of three processes that function either independently or in sequence: elimination (cancer immunosurveillance, in which immunity functions as an extrinsic tumour suppressor in naive hosts); equilibrium (expansion of transformed cells is held in check by immunity); and escape (tumour cell variants with dampened immunogenicity or the capacity to attenuate immune responses grow into clinically apparent cancers). Extensive experimental support now exists for the elimination and escape processes because immunodeficient mice develop more carcinogen-induced and spontaneous cancers than wild-type mice, and tumour cells from immunodeficient mice are more immunogenic than those from immunocompetent mice. In contrast, the equilibrium process was inferred largely from clinical observations, including reports of transplantation of undetected (occult) cancer from organ donor into immunosuppressed recipients. Herein we use a mouse model of primary chemical carcinogenesis and demonstrate that equilibrium occurs, is mechanistically distinguishable from elimination and escape, and that neoplastic cells in equilibrium are transformed but proliferate poorly in vivo. We also show that tumour cells in equilibrium are unedited but become edited when they spontaneously escape immune control and grow into clinically apparent tumours. These results reveal that, in addition to destroying tumour cells and sculpting tumour immunogenicity, the immune system of a naive mouse can also restrain cancer growth for extended time periods.
PMID: 18026089 [PubMed - as supplied by publisher]

Sorry for the use of the term rectangle--certainly not geek-speak!
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Old 11-26-2007, 07:53 PM   #6
dlaxague
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Do the cancer cells escape because the immune system is weak and allows them to do so, or do they escape because the cancer cells change so that they are invisible to the immune system and thus the escape occurs not because the immunity is weak but because the cancer cells are clever and stealthy?

We can have the strongest immune system in the world and if it's the stealth of the cancer rather than the weakness of immunity, we may avoid the common cold but still succumb to cancer.

This paragraph from the Nature article (available online last week) would imply that it's more a change of the cancer cells and less a change in immune function:

"Schreiber, Smyth and Old speculate that from the immune system's point-of-view, a cancerous cell may look like a cell infected by an invading microorganism. To overcome the safeguards that prevent the immune system from attacking the body's own tissues, the tumor has to have a high level of immunogenicity, or ability to provoke an immune reaction. Cancer cells can reduce their immunogenicity by changing the materials they present to the immune system to more closely resemble those presented by normal tissue. This enables the third outcome of the immunoediting theory: escape."

A friend on the LEAD'ers list found another article about immunoediting (one of the authors is Mary (Nora) Disis) and it, too, seems to say that it's more about the cancer and less about the immune system. This is from 2006 and they were already using that term "immunoediting". The full text is dense - I'm busy packing to move and have not read it all. Here's one relevant quote gleaned by the friend who did read it, and a link to the whole PDF at the end:

""Research indicates that tumors evade the immune system following immunosurveillance by either directly inducing tolerance or by altering their phenotype to suppress or evade immunity. This latter mechanism has been termed immunoediting." http://www.jimmunol.org/cgi/reprint/177/3/1526.pdf

Debbie Laxague
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Old 11-26-2007, 07:56 PM   #7
dlaxague
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Ps

Just to clarify. I completely agree that the mind/body connection exists, and that there are things that we can do to strengthen our immune system. I do not know, however, that a strong immune system has ANY ability to deter strong cancers.

Debbie Laxague
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Old 11-26-2007, 08:31 PM   #8
Margerie
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I am wondering how Her2 neu works here. Maybe this kind of cancer was so aggressive- (pre-herceptin) because the Her2 is found on normal cells and immune systems have a hard time recognizing the cancer cells even with strong Her2 neu expression.

Interesting- Mary Disis is one of the clinical researchers at U of W Her2 DNA Plasmid vaccine. They tested me for an immune response to the Her2neu protein (after chemo and during herceptin but before my first vaccine) and I had none. That is the usual case I understand. After 2 doses of the vaccine (3 in all) I had a measured immune response to the Her2 protein. They are still running assays on my follow up blood samples.
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Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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Old 11-26-2007, 08:52 PM   #9
hutchibk
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I think I agree with you for the most part Debbie, I don't know how I feel about it being able to deter or clear cancer. I tend to apply the mind/body connection healthfulness more towards keeping my immune system firing on as many healthy levels as possible, in regards to fortifying my body in as many ways possible, to help it respond as synergistically as possible, in tolerating all of the treatments that I might need to take to fight and deter the cancer. Does that make sense? That's a lot of "as possibles" - LOL.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 11-26-2007, 09:09 PM   #10
dlaxague
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Hmm. What does "multi-quote this message" mean? I'm still learning how to use the features of this board and can't seem to get the message I'm replying to in the same box as my reply.

Anyway, I'm replying to the "does this make sense?" question to say that yes, it absolutely makes sense to me, including the "as possibles". Plus, many of the things that fortify also improve or enrich life in general. It's a win/win approach (health, life), it seems to me. But maybe not win/win/win (if the third win is cancer). But on the other hand, certainly no one is saying that a robust immune system is BAD, regarding cancer.

Debbie
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Old 11-28-2007, 06:42 AM   #11
Believe51
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Thumbs up Pulling this up...

Very interesting thread, thanks girls for the imput. Just pulling this post up, I do not know how I missed this one. The board has been rather busy lately with the loss a great warrior, friends having bumps in the road, and the holiday. Thought I would pull it forward for anyone that may have missed this like I did, this being the season and all....>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 11-28-2007, 06:17 PM   #12
fullofbeans
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Thanks for that post..I hope it settles few questions. I always expected that was the case that it matters a lot in some cases (the state of your immune system) or not at all is some other cases.

I know which one I choose to belong to, for my own sanity (!), fatalism does not settle well with me either.
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 11-30-2007, 12:06 PM   #13
Andrea Barnett Budin
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Exclamation The Mind, The Body And The Immune System...

"If you color outside the lines, you'll have a lot of people trying to break your Crayolas." (Dr. David Felton, neurobiologist and leading researcher who studied at MIT and University of Pennsylvania and is now at the hub of PNI, or "psychoneurologicalimmunolgy" at the University of Rochester) spoke those words as he tried to change the way the medical field views disease, coloring outside the lines, thinking out of the box. Hoping to move toward healing, which is a word he says he never heard the whole time he was in medical school. He is teaching doctors to treat patients as human beings, not slices of anatomy.

Dr. Felton has conducted studies connecting the immune system to the central nervous system. He has documented ways in which the brain sends signals to the immune system. Chemical neurotransmitters talk to the immune system. A stimulus such as emotional stress can trigger the release of nerve-fiber chemicals, which then tell the immune system cells what to do. And the reverse is also true; chemicals released by the immune system cells effect the brain. They can cause drowsiness and elevated temperatures when the body needs to fight disease. We are a virtual telephone network of transmitters and receptors.

"IF YOU DON'T HAVE SURPRISES HAPPENING, YOU'RE NOT BEING BOLD ENOUGH" is his view. Dr. Felton and a team of researchers discovered a hard-wire connection between the body's immune system and the central nervous system, which is under control of the brain.

Using special fluorescent stain to trace nerves to various bodily locations (including bone marrow, lymph nodes and the spleen) the Felton team discovered a network leading to blood vessels as well as the cells of the immune system. They also found nerves in the thymus and spleen terminating near clusters of lymphocytes, macrophages and mast cells, all of which help control immune function.

The brain has the ability to send signals to immune system cells, concludes Professor Robert Ader (who, literally, wrote the book on this most recent field of PNI, which he edited with Felton and colleague Nicholas Cohen, an immunologist).

This reportedly has profound implications for AIDS and cancer... Focusing on enhancing the immune system can lower drug doses to manage a disease...

In PBS special with Bill Moyers, HEALING AND THE MIND, as well as reported in Time and The New York Times, this is "an idea initially scorned by the mainstream medical community that has been proved through rigorous study to have scientific merit. Brain behavior and immunology are giving us a new look at disease".

Felton says we probably still only know 10% of the molecules in the brain, leaving us with much to learn. He recalls being encouraged decades ago by Jonas Salk who told him, "This research area could turn out to be one of the truly great areas of biology in medicine. You'll meet some opposition. Continue to swim upstream" anyway.

http://www.rochester.edu/pr/Review/V59N3/feature2.html

Andi


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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 12-01-2007, 09:35 PM   #14
weezie1053
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Red face

I have a very stressful job, and I am raising my 5-year old grandson. I often wonder if my own immune system is often jeopardized by stress. I am a die-hard optimist, but stress does play havoc in my life as I try to juggle ten balls in the air. I have two older sisters who hover over me preaching to me that they do not want to buy new black dresses. Is that subtle or what?? I finished chemo in Feb, and I had asthmatic bronchitis in Oct and again last week. Of course, I work with the public exposing myself to germs, and my grandson is a germ "carrier" from his school.

Just one more thing to worry about...

Louise
__________________
  • Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
  • Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
  • AC/Cytoxin combo - 4 treatments (dose dense);
  • Taxol/Herceptin combo- 12 weekly treatments;
  • Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
  • BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
  • MRI, 08/02/07 - NED
  • 1 year Anniversary - 09/07; completed Herceptin 11/07.
  • Mammo 02/14/08 - NED; MRI - 08/2008 - NED
  • 2 year Anniversary - 09/08
  • Mammo 02/09 - NED; MRI - 08/09 - NED
  • 3rd year Anniversary - 09/09
  • 5th Annivery - 09/2011 - NED
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Old 12-01-2007, 10:03 PM   #15
hutchibk
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My therapist and I have started doing somatic experiencing work (SE) and it is a pretty amazing mind-body and mental health therapy... Not like anything else I have ever done.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 12-02-2007, 11:40 AM   #16
PinkGirl
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Question

Brenda
Can you explain what somatic experiencing is?
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 12-02-2007, 12:34 PM   #17
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...
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Exclamation Tell Your Friends And Family Not To Go Buy Black Dresses Yet...

Somatic Experiencing - Wikipedia, the free encyclopedia

Anyone who has been dx w ca and undergone tx is, to my way of thinking, suffering something akin to post traumatic stress disorder. Facing one's mortality, enduring chemo, radia, mastec and so on, dealing w/myriad tests, scans, sonos, and so on, seeing oncs, neurologists, pulmonologists -- and all the fears, uncertainty, not to mention corroded anger, blame, resentment, sorrow, remorse, regret and anxiety -- NEEDS HELP! More than conventional tx and surg, more than supplements, I think we each have earned a scrip for an anti D, plus some guidance in mediating and guided imagery. Something to connect us with our sacred selves, our True Self, and bring us a degree of serenity midst the Chaos.

Trauma is a fact of life. Most of us, not just soldiers or victims of abuse or attack, have been traumatized. The sources of trauma are wide-ranging; these include natural disasters, exposure to violence, accidents, falls, serious illness, sudden loss of a loved one, surgeries, medical and dental procedures, childhood neglect or abuse, difficult births, and even high levels of stress and toxicity during gestation in the womb.
Not all traumatic events will create symptoms; however, trauma related symptoms are rampant in our modern lives. Symptoms of unresolved trauma can include:
  • Panic or anxiety (including panic attacks)
  • Hypervigilance
  • Chronic pain of all kinds
  • Sleep disorders
  • Chronic tension
  • Addictions of all kinds
  • Migraines
  • Gastrointestinal disorders
  • Sexual dysfunctions
  • Dissociation
  • And many others…
I can (as I dare say almost all of us on this board can, be they patient or caregiver) relate to many of these symptoms! We cannot change what is, but we can adjust our sails and learn to respond in ways that will give us genuine QOL.

My Intention is to Survive (long-term) but I am aiming with each day to try to capture the thrill of being alive and in the moment. That this may also impact my immune system, boosting it to fight off illness and disease, is a grand perk. Sounds like a win/win situation. Harnessing our innate and latent powers. Gaining a grip on our situations, controlling what we can and not living as if we are helpless victims is key. Yes, many lose their battle w/this awful disease, but many survive as well. It is that group that manage to prevail that I focus my energy on. Tempting though it is some days to cave into feelings of -- this is how it's going to be for the rest of my life. That is self-defeating and not productive.

The Center for Well Being » Somatic Experiencing®

Trauma, although a fact of life, does not need to be a death sentence. We can be given tools to heal unresolved issues ( and to cope with daily unavoidable stresses).

"Just as we have a primitive part of our brain that governs survival responses, we also have higher brain functions of emotional and cognitive responses, which often interfere with this “body wisdom. “
Somatic Experiencing (SE) is a method of supporting our bodies to access this body wisdom and apply it to healing and resolving the effects of trauma." It's all about AWAKENING OUR BODY'S WISDOM AND ABILITY TO HELP US HEAL!

The "...gradual working of the edges of the nervous system activation gently allows for the discharge and completion of the instinctual survival energies, resulting in a restored sense of settling and well being."
Fascinating. Thanks so very much, Brenda for bringing this to our attention! SURVIVAL TOOLS we have access to!

Andi


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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 12-02-2007, 07:56 PM   #18
hutchibk
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Thanks for 'splaining and linking it for everyone, AndiBB! We are just starting to do some of the most basic work every two weeks when I see her, and she is in the early levels of her training in SE, but I find it very rejuvenating and fascinating.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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