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Old 02-22-2009, 10:06 AM   #1
karen z
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Physical, mental, spiritual health: What do you do?

I am wondering what everyone has done to try and "get through"- either before, during, or after (or way after) treatment? What has worked best to keep you physically, mentally, and spiritually healthy? What have you found that is indispensable to your physical, mental, or spiritual health?

Best,
Karen
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Old 02-22-2009, 10:59 AM   #2
chrisy
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During chemo, I made sure we had at least one "date" with friends each month - usually the week I was on herceptin only. This served several purposes. With friends like mine, you definitely have a lot of laughter which is good for body AND soul. It also reminded me that, although I was living under a death sentence, I was still ALIVE and still me.
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 02-22-2009, 11:28 AM   #3
karen z
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Chrisy,
What a great idea. It is so rejuvenating to have a date with friends and get a chance to laugh and talk- and laugh and talk. And you are right, it is good for body AND soul. I actually had dinner with three women last night who I work with and who were were often with me at the hospital for chemo, surgery, port placement, etc. I can't tell you how much good it did me (and I know them) to "connect" for a four hour dinner at a fun (New Orleans style) place last night!
Best,
Karen
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Old 02-22-2009, 11:54 AM   #4
Paty
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Karen,

Family and friends played a big role while I was going through treatment. I am very greatful for that. After that I went back to work as soon as I could so I could keep myself busy and trying to incorporate to a semi-normal life again. With that all set. I kept on reading books as much as I can, each book takes me to a different scenario in life and that helps my mind's health. I also try to get out of the house and either do my groceries or plan on a trip, even if it is a short one. When I feel very tired I try to enjoy my rest and wathch productive programs on tv. Even when now we have the burden of BC, I try to make my life as normal as it was before, obviously I do not always feel normal, but I try.

Paty
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
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Old 02-22-2009, 12:04 PM   #5
karen z
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Paty,
It is interesting that you mention your reading. I have always done much reading of academic material for my job but, over the years, I did not do as much "reading for pleasure". I have found during the last couple of years that one of my biggest pastimes (once again) is reading for pleasure. And, you are right, each book takes you somewhere and opens your mind to the next possibility. And I think that people underestimate the value of short trips or vacations! It does so much good to get away for a couple of days. Sometimes that is all we need to sustain us for awhile.
I enjoyed your post! Thanks for sharing what helps.
Best,
Karen
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Old 02-22-2009, 10:13 PM   #6
harrie
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The 2 things that helped me the most (beside family and friends) is YOGA and the book by Eckhart Tolle, A New Earth.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 02-22-2009, 10:50 PM   #7
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I read a lot also. I also try to walk every day. Because I was working full time during the recurrence, I did not have the luxury to occupy myself with the treatment - luckily I've already had some experience from the first round in 2003. Keep yourself busy is important.

And when I was down or tired, I always remember the sentence from one of Fr. Robert Ronald's speeches: "even if you can not move [your body], then just think of something interesting." When I was recovering from the brain surgery and going through physical therapy (my left side was paralyzed after the 23-hour brain surgery), I followed that advice and was amazed at his wisdom - a sense of humor is essential.

Basically I think it taught me to accept myself and my 'current condition' while looking forward to the next moment, next day. That's also what Carl Rogers said about interpersonal relationship - to focus on the 'here' and 'now'. I learned that concept from the group training when volunteering in the counseling center back in college.

For some reason, everything I did in the past seems to have prepared me for the battle against cancer. And everytime something unexpected happens, I just look up to the sky (or ceiling ) and ask "now what?".

It is God's problem, not mine - when I have tried my best to maintain my health.
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Old 02-23-2009, 06:24 AM   #8
karen z
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Harrie,
I have heard a lot about The New Earth but haven't yet read. It looks like that would be a good thing to do. What has it meant to you? And YOGA seems to be very helpful to people. How long before you saw its effects?
Karen
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Old 02-23-2009, 06:28 AM   #9
karen z
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Jackie,
I love the line "even if you can not move [your body], then just think of something interesting." What great advice for all of us. I also like the thought that it is "God's problem" not ours if we have tried to maintain our health. That is why I think it is so important to talk about how we can do that. Keep walking! I have started up again and doing pretty well. Now I need to get into YOGA!
Karen
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Old 02-23-2009, 07:52 AM   #10
Catherine
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Jackie,

The minute I get down, I try to go outside. I walk as much as I can, but sometimes just look up at the sky and say "wow" there is a lot of life out here and I want to be part of it. Yoga is great, but stretching and breathing on a mat or towel in quiet room works too. Book yourself a couple of dinner outings or coffees or walks. Keep something on the calendar to look forward to, even if it is small. Pace yourself. Make your bedroom very inviting, so when you are pooped you can take yourself to a quiet spot, relax, breath, pray and go to sleep. Rest is very important. I have picked up some new ideas from the wise people on your post. Accepting where we are is important....the new normal as they say.

Friends forever,
Catherine
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 02-23-2009, 01:14 PM   #11
abitjaded
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Stay busy

My therapy has been to stay busy.

Stripped some wallpaper I hated. Destroyed the walls. Learned how to wall compound, learning how to mitre corners of baseboard and next how to repair the sheet rock I destroyed when ripping off the baseboards.

This all started with just painting a few dark cabinets white. Two months later....

Benadryl and Ambion at night help, too.

Hang in there, there is light at the end of the tunnel.

Carla
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Old 02-23-2009, 02:51 PM   #12
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Shadowpilot

Qigong helps me a lot. I look at it as my daily medicine. I wish I would get out and walk more. As the weather dries out a bit I will spend more time outside. Gardening is good for me as well. I also appreciate the support of my family and friends. Humor and laughter also lift me up.

Sue
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Old 02-23-2009, 04:38 PM   #13
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Definitely stay busy and "plugged in" to things that aren't specifically cancer related, though it is almost impossible for cancer to not color almost everything in your life. I have learned some very effective meditation and relaxation techniques taught to me by my therapist who I have gone to for several years and continue with her monthly. It takes some wrestling and wrangling with the "radio" (as Steph calls it) that plays in your head - to keep the negative thoughts at bay and live as free from the fear as possible, especially for a mets girl. I did a lot of that wrestling a couple of years back and worked through my internal messaging. Our internal messages need to be monitored from time to time and reprogramed. It can take some deep inner mucking around and doesn't always feel good, but that's when I turn to my (twice now) successful anti-depressants ~ they get me through the cleaning out and clearing and re-booting of internal messaging...
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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 02-23-2009, 05:09 PM   #14
WomanofSteel
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I found this little saying somewhere and it has kind of become my mantra. I try to always stay positive and take things lightly. As long as I can wake up in the morning to face another day, I can handle whatever is thrown at me. Attitude is everything!
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 02-23-2009, 06:27 PM   #15
karen z
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Catherine,
I think that going outside- walking, gardening, sitting and and reading is so important. And sometimes we need to push ourselves to get out there but it always helps.
karen
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Old 02-23-2009, 06:29 PM   #16
Mary Jo
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Smile

For me in just a few words........

prayer.....reading God's word (the Bible)........exercise.......love of family and friends. I needed that always...but especially while going through treatment and beyond. Growing closer to my Lord each and everyday is my priority each day now....as I realize more than ever....that this life is short and eternity is what's waiting for forever....I want to be their.

Sending love and prayers to you my sisters,

Mary Jo
"For God so loved the world that He gave His one and only Son that whosoever believes in Him shall not perish but have eternal life." John 3:16
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

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Old 02-23-2009, 06:39 PM   #17
karen z
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Boy Carla,
You have inspired me to tear up my house a bit!
Karen
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Old 02-23-2009, 06:42 PM   #18
karen z
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WomanofSteel,
I like your mantra, especially the part about letting go of the pointless drama and surrounding yourself with people who make you happy. That was one of the first things a cancer counselor told me.
Karen
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Old 02-23-2009, 08:56 PM   #19
ElaineM
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Wink Physical, mental, spiritual health: What do you do?

Keep connections with friends and family open. Try to keep my life and daily activities as normal as possible. Watch alot of good comedy on T. V. Take myself out to coffee or a snack once in a while . Pray. Find a passion or two and get involved.
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ElaineM
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Old 02-24-2009, 07:18 PM   #20
karen z
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Very good advice, ElaineM.
Finding a passion or two or getting involved is important. Also, getting back to a passion left behind in the business of life (photography, drawing) helps a great deal I think.
Karen
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