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Old 09-11-2007, 06:26 AM   #1
Hopeful
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Mind Over Matter? Less Stress = Less Recurrence

Psychological distress predicts survival in breast cancer patients

MedWire News: Breast cancer patients with low levels of distress survive longer and have lower levels of disease recurrence than those with high levels of distress, study findings show.

Mogens Groenvold (The Department of Palliative Medicine, Bispebjerg Hospital, Copenhagen, Denmark) and colleagues report that emotional function and fatigue are significant independent predictors of recurrence free and overall survival, after accounting for biological variables such as menopausal status, estrogen receptor status, tumor biology, lymph node status, and adjuvant therapy use.

The researchers analyzed data from 1588 breast cancer patients who filled out the EORTC (European Organisation for Research and Treatment of Cancer) QLQ-C30 quality of life questionnaire 2 months after their primary operation.

They measured psychological distress using the emotional functioning and fatigue items, with severity rated on a score of 0-100, where 100 shows highest level of functioning.

Information on clinical and pathological variables including time to recurrence and survival time was obtained from the Danish Breast Cancer Cooperative Group register. Patients were followed-up until March 2005, with a median follow-up time of 12.9 years.

An emotional function score of 83-100 was associated with a relative risk of 0.80 for recurrence-free survival and 0.81 for overall survival, compared with an emotional function score of 0-75. Meanwhile, a fatigue score of 33-100 was associated with a relative risk of 1.32 for recurrence-free survival and 1.23 for overall survival, compared with a fatigue score of 0-22.

Groenvold and colleagues comment in the journal Breast Cancer Research and Treatment: "The finding that both fatigue and psychological distress were associated with the risk of breast cancer recurrence and death is intriguing and raises conceptual and methodological questions."

The researchers propose two possible interpretations. Firstly, patients who do not experience psychological distress maintain a strong immune system that subsequently leads to better cancer resistance, they suggest. This they refer to as the "mind-body model." Alternatively, a lack of psychological distress may reflect mental as well as physical robustness. This they refer to as the "robustness model."

Irrespective of the mechanism underlying the negative effect of distress on breast cancer outcome, the researchers state that effective interventions against psychological distress and/or fatigue should be "available for all breast cancer patients to improve their quality of life as an end in itself."

Breast Cancer Res Treat 2007; 105: 209-219

http://www.springerlink.com/content/t4t37023g4175805/?p=985210d0241046709a17cf420d3161cf&pi=8


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Old 09-11-2007, 07:02 AM   #2
Sandy in Silicon Valley
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Question or Matter over Mind?

Hi,

Thanks for posting this link. Even tho it was posted online last January, I haven't read it, or seen reference made to it, before this. Maybe that's because there are numerous studies published that have indicated that there is NO correlation between self-reported stress and recurrence in cancer, or in getting breast cancer to begin with. Self-report studies are notoriously variable and not nearly as reliable as physiological research. Lately, researchers have taken to measuring cortisol, a "stress hormone" I think, in subjects' saliva, to measure stress levels. That disease & treatment can cause fatigue, which in turn can cause stress (as in not being able or motivated to carry on one's usual activities) has been long recognized - but that fatigue can cause disease is a novel interpretation of this study's findings.

However, I don't think that the study really supports a "mind over matter" theory - especially as relates to things like meditation, visualization, guided imagery, "the power of positive thinking" and other "mind over matter" theories.

Here's what the authors say: "The researchers propose two possible interpretations. Firstly, patients who do not experience psychological distress maintain a strong immune system that subsequently leads to better cancer resistance, they suggest. This they refer to as the "mind-body model." Alternatively, a lack of psychological distress may reflect mental as well as physical robustness. This they refer to as the "robustness model.""

To me, the association could easily go either way - for bc patients who suffer more physical symptoms from the disease itself, surgery, radiation and/or drugs - it could be that their physiological suffering that leads to psychological distress and/or lessening of physical robustness.

For patients who don't have the classic "good attitude", it doesn't necessarily mean that they would report more fatigue. I'm a classic case of "bad attitude" - and my anger/stress about perceived wrongs - in my treatment & diagnostic options, medical/insurance snafus, and general societal inequities - is often quite energizing.

Also, there are many people, in my observation and opinion, who try very hard to cover their distress with a smiley face or "good attitude". Being cheerful and optimistic and hopeful is great if it comes to one naturally, at least until if/when something unexpectedly awful happens, but in people for whom those feelings are not consonant with underlying fears, anger, other negative feelings, it really takes a huge amount of energy and effort to cover up negative emotions and replace them with positive ones.

Using so much energy to improve one's attitude can be exhausting: FATIGUE! Unless, of course, one is in denial of their situation, and happily thinks/ acts/ feels as though nothing is seriously wrong - that person might honestly, from the gut, report both less stress and less fatigue - but that doesn't mean the same person would see a doctor about worrisome symptoms (thereby being diagnosed with recurrence, perhaps) - that person might just go on her merry way believing that nothing is wrong.

From my own experience, with breast cancer, abusive parents, an often-unhappy first marriage, and from working with children and adults as a social worker, I believe that freedom to express ALL feelings, and affirmation that ALL feelings are legitimate and deserve respect and recognition, are much healthier values for more people than trying to get everyone to express only optimistic "good attitude" emotions - whether or not those really reflect what's going on for a person.

(((hugs)))
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Old 09-11-2007, 07:12 AM   #3
Jean
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Great Article...hopeful..lately..

on the board there has been some postings regarding the concerns
of recurrence, which plagues many bc survivors. When I was a
young girl a doctor once told me, "The mind heals the body." I did not
come to understand this statment until years later.

I have come to understand my bc in that I believe I was given a gift of illness to see how special and fragile life is. The gift was not wanted,
but it did teach a valubalbe lesson, to love and live fully in my every day
to day life. A positive attitude will give you the courage to go on when
things get rough. I say to myself daily, "I can beat this."

Blessings to all my Beautiful Her2 Sisters,
Jean
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Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
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Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
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Old 09-11-2007, 10:29 AM   #4
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Interesting Topic.....

This is an interesting topic...how people cope and deal with disaster.
It has always intrigued me and has been a mystery for me.
When I was a young child I had a neighbor who had taken in a realtive and her young son who had come from a prison of war camp in Germany. I certainly did not understand anything about a war that occured before I was born. I only knew it was strange that they had numbers tatooted on their arms. Many years later when I understood the full impact of the war I was shocked. I could not understand how this sweet kind woman dealt with it. I remember having a conversation with her (she was well into her late 80's at the time )..a sweet grandmotherly type of person. I asked her how she was able to deal with the camp. She said, "You had to survive." She was able to raise a kind and beautiful son into a wonderful man. I was just amazed by it. How some people can turn a disaster or horrifying experience into a positive energy. Like Joe and Christine did by deveopling this wonderful site.

There are psychotherpists who specialize in treating cancer patients.
It is not easy to clean out ones psyche of old hurts and grievances.
Hopefully as a result, they are better able to cope with the disasters and also to enjoy life.

For instance, today I am taking lunch to a dear friend, whose son was a victim of 9/11. I do not know how she is able to cope with her loss. The world is a very scary place. We are not immortal thats for sure.
I do not have the answers...to this grand mystery called life. What makes
people tick...I am just grateful for those that support one another and try to make a difference...no matter how tiny.

Every day is a gift.
Hugs,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 09-11-2007, 05:51 PM   #5
Andrea Barnett Budin
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Exclamation Becoming Empowered

To read Jean's words is to ingest wisdom. Healing old wounds and grievances is among the greatest of challenges for a human being. But it must be done, or psychology will become physiology. What dwells in our minds is expressed in our bodies -- sending a distress signal to us, telling us to wake up and HEAL. We each have the power to consciously override any wrong messages being sent to our body. We can command it to get its' act together and start functioning properly. Yes, we may need help -- surgery, medicines, therapy to get on track. We'd be foolish to deny such access to ourselves. But letting go of anger, resentment, bitterness, sorrow and the inability to forgive are acts of self-love! Realizing our PERSONAL EMPOWERMENT to call joy and harmony, wellness and loving energy to us is among the gifts that Jean refers to in her post above. Finding generosity of Spirit, kindness, compassion, understanding, humble gratitude for all you have, seeing your blessings and feeling awe in each day are all bestowed on those who stop struggling against the wrongs foist upon us. Such (an abusive childhood, dx w/bc, enduring physical and psychic pain for way too long along w/horrendous fatigue and depression) are each opportunities to evolve and grow in magnificent ways.

Must say that I had to resort to therapy + Ativan + anti-depressants + digesting books that guided my spiritual journey to reach the joyful place I am today. My hot flashes are intolerable and all day every day. My fatigue is being helped by several supplements (listed in 6/30 thread TO "SUPPLEMENT" OR WAIT). I have a terrible cold and feel like total S**T, but there is a smile on my face -- because I embrace being alive with a fervor never known by me before. Still searching for hot flash answers to be sure. On a mission.

Once a good friend commented (as many have over the years) -- You always have a smile on your face. It reflects my nature, my True Self, my Spirit if you will. I said to my friend, It is easy to smile when everything is going well in your life. (The comment was made after my bc dx.) Then I added, It takes a bit of effort to keep smiling when things are not going so well... You're amazing, Judy said to me. You see, I KNOW that what we think all day determines how we will *feel*. AND, it predicts outcome! So I focus all my energy on thinking thoughts full of love, happiness at waking up this morning to a gorgeous new day and serenity -- KNOWING that I am doing everything I possibly can to CALL my desired destiny to me. I live AS IF what I want were ALREADY HERE. That is what I have been doing since '95. I recommend it highly! I feel great and I remain NED. Stable. I wish exactly that to all my Soul Sisters who I feel so very close to. Our bond is simply there, along with our love for one another. That's a most beautiful thing. A gift, as Jean says.
Andi

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'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 09-11-2007, 08:30 PM   #6
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I found it did take me awhile to regain good spirits and conquer my fatigue. But reading the article, strange they did the study 8 weeks after surgery:

"The researchers analyzed data from 1588 breast cancer patients who filled out the EORTC (European Organisation for Research and Treatment of Cancer) QLQ-C30 quality of life questionnaire 2 months after their primary operation."

I mean, they would probably be in chemo or al least just completing rads. I am a pretty robust lady,but 8 weeks after surgery I was not at my strongest, physically or mentally, to say the least. What kind of treatment are these gals getting and who scores high on the robust scale so soon after diagnosis?
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MRM, 4 DD A/C, 12 weekly taxol + herceptin
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ooph, Arimidex, bilateral DIEP reconstruction
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Old 09-13-2007, 10:54 PM   #7
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Hopeful, Psychologic study-very interesting---Thanks for posting.

I admire all of you ladies---you are an inspiration to me. I've been touched with your personal posts. Thanks so much for sharing.
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Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 09-16-2007, 04:39 PM   #8
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I am five weeks out from surgery following seven months of chemo and I am so tired. The surgery has been much harder to bounce back from than I expected. I hope three more weeks will make me feel as good as some of those women must have. I am trying to be positive but I am not dealing with this as well as I had hoped I would. I read a study some where that suggested that it was healthier for cancer patients to express their feelings, all of them, not just the positive ones, than to hold them in and try to appear positive all the time. I should be healthy if that is true. I am so not a happy camper.

Andi, I hope I can get to where you are. Right now I am a long way away.

Leslie
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Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 09-16-2007, 05:57 PM   #9
Sandy in Silicon Valley
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getting from where you are to where you want to be...

Hi, Leslie -

From the 8 months of treatment you've just gone through - I think it would be a wayyy overly high expectation of yourself (and/or others' expectation of you!) to feel all strong and energetic and ready to face the world right now.

What I believe is, it takes time for both our bodies and our minds/emotions to heal from undergoing the major trauma that a bc diagnosis, drug treatment (with its side effects, often) and surgery can often be. And that our bodies/souls recover at different speeds and with different kinds of assistance.

For me, in order to get through it, to where I am now (which isn't always hunky-dorry, but close to "normal" ups and downs and a bit lower energy level while I'm still in treatment), I had to feel and express and behave according to the negative feelings that sometimes threatened to overwhelm me. There just, for me, was no getting around, or over, "it", until AFTER I'd recognized and dealt with the legitimate, very real hurt, anger, frustration, feelings - like that my body had betrayed me, I must have somehow unknowingly contributed to my disease, etc.

For some of us, maybe there's a "mind over matter" solution - think happy thoughts, and you'll be happy. Simple, right? For others of us, that strategy just doesn't work (I know- I've been in therapy for years at a stretch, have taken anti-depressive drugs - which can work to take the "edge" off and seem fairly functional while dealing with emotional pain BTW, I have sat (but not for long) in support groups that discourage "moanin' and bitchin' ", I've tried and dropped out of a 6 week "Mindful Meditation" program that felt too directive and foreign to my natural oppositional streak, etc.

What helped me were:
*TIME! Time to grieve my losses (especially after dx with metastatic bc), time to figure out how to deal with drug & tx side effects (physical therapy, drugs to help me sleep when Decadron - given with Taxotere - was keeping me awake and jittery, changing and then eliminating anti-depressive meds when I got anxious, finding exercise I could do and enjoy)

*Supportive and patient friends and husband, who accepted my unhappiness as normal for my physical situation, and loved me just as I was - even morose and grumpy, and didn't try to "jolly me up" or tell me to get over it, just b/c it wasn't so easy on them.

*Experimentation - little by little, by trial and error, trying out which activities deserved and rewarded my energies, how much paid work I could reasonably accomplish and still feel good about doing, which foods tasted best during chemo treatments, which kind of touch was most soothing, how much rest and sleep I needed to be optimally functional but still feel alive, etc.

*Losing myself in engrossing activities. I've found distraction a great, temporary, relief from both physical and mental pain. After rediscovering an "old school" passion for handcrafts, I've dived into embroidery, crochet, bead work, fabric creations - and find them an even more engaging, rewarding distraction/ satisfaction than watching a favorite tv program, because they're less passive, and because I have something to show for my time, when I'm done.

I compare it to having a new baby - the baby being ourselves. Why shouldn't we treat ourselves with the same TLC, curiosity, and desire-to-soothe-and-amuse that we'd have for a new baby? If your baby had to undergo 7 months of toxic chemo and then surgery, to treat some disease, would you expect her to be a "happy camper"? Or would you try all sorts of soothing, consoling, distracting tactics, as part of your loving and caring, to help her recover from her ordeal?

Sometimes I think there's just way too much pressure to behave as though we're super-human. We are not Xena, or even her sidekick, Gabrielle. We're just human, afterall. If you can find a support group, Leslie, where you're free to express everything that's bothering you - get it out on the table, have it validated, hear others share their similar struggles and maybe receive some hugs, recognition for how hard everything you've been going through has been on you - that might go a long way in helping you gain more patience and understanding about what's still unhappy. That alone, even if it doesn't suddenly bring an Aha moment of Joy, can go a long way towards soothing your wounded body and confidence that you'll eventually heal, and that this too, shall pass.

(((hugs)))
Sandy in Silicon Valley
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1992 - age 44/ ER-/PR+ Stage II dx - mastectomy, CAF x 6 cycles; Tamoxifen
1997 - BRCA1 mutation dx'd
1998 - ovaries removed
1999 - off Tamoxifen, on Arimidex
2003 - dx'd Stage IV - lymph nodes & lungs. ER-/PR-/HER2neu+++.
Tx: Herceptin & Taxotere (6 cycles).
2005 - 2.9cm x 3.6cm brain tumor. Craniotomy, CyberKnife. 9 mo. staph aureus infection at incision site - 2nd craniotomy. Two small brain mets CyberKnife'd.
2006 - revisit Xeloda - dosage lowered to 2500mg/day, 5 cycles.
2007 - "spot" dx'd on qtrly brain MRI - same location as CyberKnife 7/05. > by 2-4mm per quarter - - radiation injury or re-growing cancer? Tykerb added to Herceptin - July, still "watching & waiting". Otherwise, fully functional...


"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard
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Old 09-16-2007, 06:20 PM   #10
Andrea Barnett Budin
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Exclamation Dear Sweet Leslie

Oh dear, Leslie. I so ache for you. When I metastasized I reacted much as you are now. I was in such shock, believing I had daily warded off all the nasty feelings. I did, as you say, express them, talking them out w/someone who had been there (like my precious friend Sue, who was also wise and had the best sense of humor). I also wrote my feelings out. Journalling. This is another method of experiencing and then divesting yourself of what you are truly feeling. Fear. Doubt. Uncertainty. Anger. I was still stuck in the inability to forgive. Hadn't quite learned that Lesson yet. But the mets brought me there! And, I did have to ask for HELP.

I just read that the 3 hardest things for a human to say are -- I LOVE YOU. I'M SORRY. And HELP. I would add a 4th -- I FORGIVE YOU. I have managed the first quite nicely, feeling full to overflowing, living w/an open heart and receiving pure unconditional Universal love in infinite supply. Plenty to share. And I am feeling quite generous w/it, giving it away easily. I also asked for HELP from my onc. This came as Zoloft, an anti-depressant, which made me feel like ME again! I became happy and finally serene, knowing I was doing everything I possibly could to call my desired destiny to me. I also took Ativan, as needed. When I became unusually panicked by something I read or heard, it would take the edge off and let me DEAL reasonably. I never denied my emotions, as that is quite unhealthy and unproductive. You must work through them. And then, reprogram your mental chatter with thoughts such as I CAN DO THIS. I WILL DO THIS. I WILL GET THROUGH THIS AND LIVE AND LONG, HEALTHY LIFE. I WILL HEAL. NO MORE CANSER! These are the equivalent of instructions from your mind to your body. They are inextricably connected. The body does as the mind directs. It takes everything you say, think, whisper or whisk by unconsciously very seriously. So I do monitor my thoughts as best I can. It is a 24/7 job, but grows easier w/time as w/all things. Practice makes perfect. I do not force myself to keep a smile on my face, but it does naturally appear daily along with my perspective.

I returned from NY w/a horrid cold/flu. Honestly felt like I was dying. Like I did on Taxotere, the worst of all the chemos I've been on. I had a truly tough time, incurring every possible side effect w/a vengeance. My chest was so congested I thought perhaps I should call my cardiologist or go to the emergency room. An elephant was sitting on my chest. I told this to my Calif daughter, Pami. She said my body was purging itself of all that was unwanted. I do know that psychology expresses itself in our physiology. I was very angst ridden w/3 mnths of Paul's illness and his trips to the emergency room multiple X, fear of his having a stroke (in his 6 unconscious episodes), fear of his having another episode each time he stood, fear of renal failure, seeing him in such excruiciating pain for so many wks and how that impacted me, etc. Then came Pami w/my 1 and 3 yr old grandsons and hubby staying w/me for 3 wks. Fabulous, but wearing. Then came packing (I just hate traveling). Then came the wonderful whirlwind of fun and loving, hugs and kisses and docs and tests and repacking and traveling again. So all that could explain my sickness. When I viewed my sickness as my purging myself of all the stress and fear and such, I felt better.

I do believe that what we think all day determines how we will *feel*. And, I believe that what we dwell on predicts outcome. Which is incentive to experience what is horrid and unwanted, work through it, recognize it and then kick it in the butt goodbye, like it's a live grenade. Toxic waste. Lest it poison you or cause you to implode.

Leslie, I feel you will work through your trials, which are certainly understandable. You have been through so much. And I am so very sorry you had to endure it all. It is more than any one person should be handed. But, I also know you are a strong and bright woman. A beautiful Spirit and a determined Soul. My money is on you, Leslie. You will survive this. And you will thrive and create beautiful works of art for many to be touched by. I look forward to that. I know you have many projects in mind. Give yourself time. Be patient with yourself. Be good to yourself. And, remember it is okay to ask for a little help too.

If sleep is a problem, and it is for just about every woman I know, w/bc or not, you owe it to yourself to find an aid. Studies show that a good nights' sleep is essential to wellness. Even those who are healthy but work night shifts regularly have been studied and have more illness and less recovery than those who get a good nights' sleep and work just as hard by day. I have read these studies over the years, and have decided that I owe it to myself to get a good nights rest. I am virtually useless without it. And I can be walking around the house till 3 or 4 or 5 in the morning w/o med assistance. I guess I sound like I'm pushing pills, but my fav onc told me that I should not suffer! That if there is a pill for pain, for making me chemically balanced and cheerful, or helping me to get my sleep, I should not deny myself. I should be good to myself. He (Dr. MJ) told me, They don't give medals to those who suffer, you know. Then he smiled his gentle, warm smile. And I knew he meant what he said, because he is both brilliant and dependably honest. So, this is what I am saying to you, Leslie.

Sending much love, a big hug and energy full of wellness and joy... You are in my thoughts and in my prayers!!
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 09-18-2007, 11:36 AM   #11
fullofbeans
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Posts: 617
I trully beleive that stress played a major role in getting my cancer (whatever oncologists think).

I trully beleive in that the power of the mind is a big part of the recovery: I try to think that I want to be and stay healthy (as oppose to fear cancer).

I often say to my friends that find me in a disturbingly joyful mood most time that this is my best arm against cancer and that I am doomed to be happy!:-)

All of you whatever stage you are at please make plans, and be excited about them! where the mind goes the body will follow...
__________________

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 09-18-2007, 11:47 AM   #12
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
Talking That's The Spirit!!!

You ain't FULL OF BEANS -- you're a wise woman for such a youngster! Good for you. All that you post is so right on. It took me half a century to figure it all out. Love your profile pic. And your Spirit. You are a winner. HERE'S TO STAYING NED w/attitude, baby!!
Andi You go girl...

AndiBB@aol.com
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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 09-18-2007, 02:27 PM   #13
Sandy in Silicon Valley
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Beliefs vs Observable Data

I personally think that it's quite important, on this board and in life in general, to distinguish between one's personal belief system (faith, religion, custom, practice, etc.) and a scientifically-observable, data-supported statement of the current state of knowledge.

No one has a monopoly on the "truth". Today's scientific "truth" could be tomorrow's discounted "fallacy". What one person believes, does, thinks, is not a substantiation that her belief, action, thought is the "right" one - it just happens to be right for her, IMO.

In line with my preference that statements include "I believe..." or "my experience is...", it similarly disappoints me to read statements that don't include these admissions of PERSONAL rather than SCIENTIFIC "truth" in statements. For instance: "where the mind goes the body will follow..." That's really opinion, not scientifically validated fact.

I believe that there are many people who believe they'll get well, and they don't - not their fault for not believing hard enough. I believe that there are people (like ME!) who truly believe they are going to die very soon, and somehow, due to what I believe is the "crap shoot" nature of this disease's varied trajectories, they're afforded time beyond what was reasonably expected.

Armed with a curious mind and a skeptical view of what's out here on the "information highway", I look for reasonably-designed studies by "neutral" researchers, and balanced, cautious discussions of both significant and non-significant or contrary results.

I dismiss claims made by websites run by money- making individuals and companies selling non-FDA/ non-prescription, unmonitored supplementary/ complimentary/ alternative remedies. I wish that the FDA were the carefully-monitoring, unsusceptible-to- corporate -and- patient pressures watchdog body that it once was.

For me, it's great that Joe posts links to many studies on her2support forums, so that we're free to read and make decisions for ourselves. I wish that more of the member posts also referred to web links for researched info, or to personal unique experiences, without trying to "sell" a particular belief system.

If someone who believed that visiting a shrine would alleviate her suffering, and experienced relief after making a pilgrimage - I would love to read of her experience. On the other hand, I'd feel opposed to having such a remedy suggested as a useful treatment for me - since I don't believe, and it isn't scientifically validated information.

I feel the same way about "mind over matter". This idea of ridding oneself of stress to conquer cancer was made popular in the 1980's by the Simontons and Bernie Siegel.

It was never proven a statistically reliable or observable linear relationship, and many critics expressed their concern that the popularization of this belief actually resulted in "blaming the victim". In many cases, when cancer patients were not able to relieve themselves of stress (gee, with surgery, chemo, radiation side effects & fears of the disease being fatal - what a surprise!) it made some people feel even WORSE - because they thought they were causing their own disease progression, or horrid side effects, because they couldn't rid themselves of stress.

Personally, I like to go with whatever my intuitive feelings and responsive thoughts are in the moment. Sometimes that's quite dark and bleak, sometimes it's angry and frustrated, and sometimes, it's even quite happy and content... a mixed bag. I don't want to feel like I need to remodel my mood every time it turns black - I want to explore what it feels like, where it's coming from, and how to express it most authentically.

I love books like "Cancer Made Me a Shallower Person" and "The Year of Magical Thinking", and essays like "No More Self-Improvement" - I resonate with the authors' experiences and perspectives. The same goes for my ebullient moods - I wonder what it is that has left me so happy (in the midst of Stage IV bc & its dicey trajectory), and genuinely express my joy in ways that seem meaningful to me.

I'm in no way suggesting that my way of being would work for anyone else - just that it works for me. And, at this place in my life, it'd be so lovely to NOT be inundated with messages that seem to tell me I'm not living my life the "right" way!

(((hugs)))
Sandy in Silicon Valley
__________________
1992 - age 44/ ER-/PR+ Stage II dx - mastectomy, CAF x 6 cycles; Tamoxifen
1997 - BRCA1 mutation dx'd
1998 - ovaries removed
1999 - off Tamoxifen, on Arimidex
2003 - dx'd Stage IV - lymph nodes & lungs. ER-/PR-/HER2neu+++.
Tx: Herceptin & Taxotere (6 cycles).
2005 - 2.9cm x 3.6cm brain tumor. Craniotomy, CyberKnife. 9 mo. staph aureus infection at incision site - 2nd craniotomy. Two small brain mets CyberKnife'd.
2006 - revisit Xeloda - dosage lowered to 2500mg/day, 5 cycles.
2007 - "spot" dx'd on qtrly brain MRI - same location as CyberKnife 7/05. > by 2-4mm per quarter - - radiation injury or re-growing cancer? Tykerb added to Herceptin - July, still "watching & waiting". Otherwise, fully functional...


"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard
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Old 09-19-2007, 08:57 AM   #14
Stephanie
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Sandy, I don't post often, but I read the board every day. I just wanted to say thank you for your intelligent and thoughtful posts on this thread. Very well stated.
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Mother/daughter bc patients (should have signed up for spa treatments instead of chemo! Who knew?)

Mom:

dx 2002 age 62
Stage IIIB, triple positive
FACx6, tamoxifen
2004 Stage IV, started Herceptin
mets to pleura, lungs, bone
tried Arimedex, Faslodex, Zometa, Navelbine, Taxol, Taxotere, Gemzar, Carboplatin, Abraxane, Xeloda
June 2007 new mets to nodes and pericardiam
Switched from Xeloda/Herceptin to Xeloda/Tykerb
September 2007 Failed X/T. Switched back to Xeloda/Herceptin, added Gemzar
Jan 2008 Taxol/Tykerb
Feb 2008 Tykerb as a single agent

Me:

dx 2007 age 38
Stage IIA pleomorphic ILC ER/PR + HER2 -
FACx6, tamoxifen
Mom to 2, ages 6 and 9

Trying to find a new hobby besides going to the cancer center.
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Old 09-19-2007, 10:07 AM   #15
Hopeful
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Does anyone think that the researchers may have misinterpreted the findings about fatigue? Fatigue can have both mental AND physical causes. Maybe there is something about the metabolism of the patients with recurrence that caused more fatigue?

FWIW, I would encourage everyone to read the article I posted in the Articles forum, in this thread: http://her2support.org/vbulletin/sho...eferrerid=1173

and then to reread the original post in this thread. It gives an interesting perspective.

Hopeful
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Old 09-19-2007, 10:54 AM   #16
R.B.
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Thank you Sandy for starting this thread, and everybody else who has posted too.

Hopeful thank you for the interesting links, which I will have to try and find time to read in full.

This is a huge subject and I restrict myself to the biology and chemistry of it all albeit at my very low level of understanding.

From what I have read I think it is clear that there is no question of a link between stress and illness. It is a bit of a chicken and egg I suspect in terms of which comes first. It would seem reasonable that they in a sense developed in tandem with one driving the other.

By way of example at the extremes, please find below and abstract of a trial on post traumatic stress disorder. Once you accept that there is a medical impact of stress at this level, it would be reasonable to assume that much lower levels of stress have an impact too.

The ability to deal with stress is to some extent diet linked. As often posted there is significant evidence that balancing the omega threes and sixes and will reduce the production of inflammatory factors in the body. Inflammatory factors link to the immune system. The diseases listed below are generally regarded as inflammatory (I am uncertain about a thyroid disease) Omega threes and sixes play big roles in brain and body function at a number of levels. If your body is less prone to inflammatory factors then on the balance of probabilities it will be less reactive in stressful situations.







Posttraumatic stress disorder and physical illness: results from clinical and epidemiologic studies.

http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus


"To test this hypothesis, we assessed the association between chronic PTSD in a national sample of 2,490 Vietnam veterans and the prevalence of common autoimmune diseases, including rheumatoid arthritis, psoriasis, insulin-dependent diabetes, and thyroid disease. Our analyses suggest that chronic PTSD, particularly comorbid PTSD or complex PTSD, is associated with all of these conditions. In addition, veterans with comorbid PTSD were more likely to have clinically higher T-cell counts, hyperreactive immune responses on standardized delayed cutaneous hypersensitivity tests, clinically higher immunoglobulin-M levels, and clinically lower dehydroepiandrosterone levels. The latter clinical evidence confirms the presence of biological markers consistent with a broad range of inflammatory disorders, including both cardiovascular and autoimmune diseases."
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