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Old 01-19-2012, 06:34 PM   #21
teresalynn
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Re: New Campfire

Hi, I am very new to the website, just recently joined the other day. Just learning how to interact on this site. I love this campfire idea. That is so fun. I eat alot of fish and veggies. So I will bring Salmon in lemon butter with aspargus to cook over the fire, for those who like fish. When are we camping??
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Old 01-20-2012, 10:39 AM   #22
ElaineM
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Thanks for the salmon and asparagus. I like salmon very much. It is the only thing with a face that I eat since I am a vegetarian 99% of the time. With your dinner and my breakfast we have two meals to enjoy.
Bill started the camp and asked us to take care of it when he is not around. We come by to take care of the campfire, bring wood, cook, eat, rest, talk, tell stories, celebrate, pray, meditate and relax when we feel stressed out. It is open all the time. It is very near a nice lake for fishing and swimming and some nice woods for walking.
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Old 01-20-2012, 10:50 AM   #23
karen z
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Re: New Campfire

Yes, it is very peaceful. I am going to spend some time there this weekend. Feel like I could use some peace!!
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Old 04-01-2012, 11:11 AM   #24
ElaineM
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I just came down to relax in the hammock and enjoy the spring flowers starting to bloom near the campfire.
It is nice and peaceful here with only the birds singing and the wind blowing gently through the trees.
There is a thermos of herbal tea near the fire for whoever drops by.
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http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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Old 05-27-2012, 10:41 AM   #25
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Hey Bill
Are you out there in cyberspace?
I think it is time for us to go clean up the campfire for the summer. Can you please help me? I will bring some snacks if you bring the clean up equipment. Do we have a deal?
Thanks.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
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"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 06-07-2012, 04:44 PM   #26
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Re: New Campfire

Hi everybody! Yes, Elaine, we have a deal! This place looks pretty good, actually. You've been doing a good job keeping it straight. Let me gather up some of this storm debris and we can use it for kindling. I'm going to take my bow saw and cut up some of the larger pieces while I snack on the sweet fruits you guys have brought. It's good to see you guys.
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Old 06-08-2012, 04:48 AM   #27
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Re: New Campfire

Kumbaya my Bill, Kumbaya! Oh Bill, Kumbaya
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Old 06-08-2012, 10:14 AM   #28
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It is great to see you too Bill. It has been awhile. Thanks for your help. I am going to clean up some of the leaves and straighten up a bit too. Here is a big thermos of ice tea for the clean up crew.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 07-16-2012, 07:33 AM   #29
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Re: New Campfire

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Old 09-27-2012, 02:52 PM   #30
Bill
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Re: New Campfire

Hello Ladies! Thought I'd stop by and poke the fire a bit. I've been missing y'all. Sometimes I come to the edge of the clearing here and look in just to make sure you're ok, then I'm off again, but this time I want to sit the night, I think. I'm tired. I've lit my candle for Brenda and I think I'll just sit here with my girls and watch some sparks fly. It's a good night.
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Old 09-27-2012, 03:27 PM   #31
Becky
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Re: New Campfire

Hey Bill

Its's comforting to know that you are here for us always when we need you. It is a nice night to sit by the fire with a beer and reflect. Thanks for being here, Bill.
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Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 09-27-2012, 03:34 PM   #32
Jeanette
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Re: New Campfire

Thanks for being here Bill. A good night to just sit and contemplate. Praying for our dear Brenda, Jeanette
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Old 09-27-2012, 04:43 PM   #33
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Re: New Campfire

I just stumbled across this site, probably when I need it the most. I'd like to sit by the fire and just hang out for awhile. I recently found out that the Herceptin I'd been getting for the past three years is no longer working and my bone mets is progressing. Last week, I was switched to Xeloda and Tykerb, but had to stop taking it after the first week due to stomach pain. I hope to restart it next week. I'm trying hard not to feel sorry for myself. I just want to raise my 12 and 14 year olds and see them settled in life. Hope that isn't too much to ask. Anyway enough whining, I just threw a log on the fire and enjoying good company.
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Old 09-27-2012, 09:08 PM   #34
ElaineM
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Thanks for keeping an eye on us Bill. I am very glad you are doing that. Enjoy your rest by the campfire tonight.
I am here for a little while too.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 09-27-2012, 09:11 PM   #35
ElaineM
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Welcome Pwiswell. Relax by the fire with us anytime.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 03-09-2013, 06:00 PM   #36
ElaineM
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Hi all,
I thought I would come to the campfire and get it cleaned up and ready for spring this weekend. Bill if you are available the outhouse needs a few repairs.
I also want to put a few healing herbs in the window boxes of the outhouse instead of flowers.
So, I am going to light a little fire and make a nice pot of veggie chili with some rice to cook slowly for dinner
before I put up the hammock and take a nap. There is a thermos of hot tea for anyone who drops by since the air is still a bit chilly today.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 03-13-2013, 06:20 PM   #37
Bill
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Re: New Campfire

Hi Gang! Elaine, that veggie chili sounds great. It smells really good simmering over that little fire. I'll just be over here tinkering with the outhouse boards if you need me. It's good to see you again. I brought a little box of Do-Si-Dos if you guys want any. Help yourselves.
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Old 03-17-2013, 06:05 PM   #38
ElaineM
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Thanks for dropping by to help Bill. We will have this place in shape for all the enjoy before summer.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 12-17-2013, 08:42 PM   #39
Bill
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Re: New Campfire

I thought I'd stop by and throw a few branches on the fire and stoke it up a bit. Elaine loved it here. Every time I stopped in, she was here, poking the fire and humming to herself. I can sneak up on anyone, believe me, but not Elaine. As soon as I got near, she would shout out, "Hello, Bill! Welcome back!" and I would respond, "Hello, Mother Nature!" and we would laugh and sit poking the fire until others showed up to join us. She had an indescribable quality that will last through countless campfires and stars shooting across the midnight sky. Elaine will be at every campfire I'm ever at from now on. Please join me and throw a branch on the fire for Elaine, as a tribute.
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Old 12-17-2013, 09:00 PM   #40
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Re: New Campfire

Hi Bill,
You know me - I've got my marshmallows...heading to the campfire, thinking of all the friends I've met along the way. Hope it won't be too long till Pinkie shows up. Could use some company tonite...
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

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