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Old 02-04-2010, 09:09 AM   #1
Colleens_Husband
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Things you should NEVER try

First off, the movie Zombie Land is just so much better than any other movie ever produced that it is mind numbing. The fact that it was overlooked for an Oscar for best picture is as great an injustice as when Dumbo edged out Citizen Kane for best picture in 1939. Or perhaps when Dances with Wolves beat Tank Girl. You know, epic injustice. The type of injustice that should require a United Nations special commission. But No! They are too busy stealing dollars provided by U.S. taxpayers to do anything useful like drafting a "seriously toned letter of concern".

Anyways, sorry for the little side track there. One of us had a, upon hindsight, less than stellar idea to buy a box of Twinkies for the movie. (For those of you who do not know what a Twinkie is, it is a delicious sponge cake confection with a creamy filling produced by the Hostess Bakeries. Mostly, it is a coronary event in a five ounce package.) Every time a Twinkie is mentioned or shown in the movie, everyone in the room must take a bite of a Twinkie. It sounds like a fun concept which would aid in the enjoyment of watching the movie. Not, of course, that the movie needs any additional enjoyment, beings how Zombie Land required so much awesome that the America had to start a national program, similar in scope and effort to the Manhatten Project, to assemble as much awesome requireds to fill this movie.

The trouble is, they mention Twinkies a lot. A whole lot. Several boxes of Twinkies lot. So, it sounded like a bright idea to have some fun with the movie, but upon reflection, that much confectionary goodness is likely to cause second-hand diabetes by people who even come close to me for the next few days.

So, in light of the Zombie Land - Twinkie fiasco. I invite all of you to provide some things in your life that you have tried, which you probably never should have in an effort to prolong the lives of other people on this forum. Thank you.

Lee
__________________
This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 02-04-2010, 09:16 AM   #2
Colleens_Husband
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Re: Things you should NEVER try

Okay, maybe I shouldn't mention this, but if you are taking a Rorscharck Test, you know, the inkblots that don't look like much of anything. No matter how much the ink blot looks like two nuns chasing a pink elephant down a long railroad tunnel armed with bananas...... well, just say it looks like a "butterfly".

Trust me on this one.

Even if you are joking, do not say it looks like two nuns chasing a pink elephant down a long railroad tunnel armed with bananas. Some people have no sense of humor.
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 02-04-2010, 09:33 AM   #3
whatz
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Re: Things you should NEVER try

You are one funny guy :-). I bet your Colleen laughs a lot.
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 02-04-2010, 08:33 PM   #4
Jackie07
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Re: Things you should NEVER try

Lee,

Have you thought about sending your post to the company that produces Twinkies (Mars?) to see if they might consider making a commercial using your Zombie Land concept?

Regarding your 2nd post about Rorscharck Test - are you sure that you all were watching Zombie Land and not just you flipping through all the Rorscharck Test results you had brought home from your office?

Somehow I don't remember seeing in Zombi Land 'two nuns chasing a pink elephant down a long railroad tunnel armed with bananas...'

Thanks for making us (me) laugh. Hubbie had just spent about a whole hour griping about our near extinct marriage life. So here's my posting for 'things you should NEVER try': "never ask your husband when he's going to start working and make some money..."
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 02-07-2010 at 08:09 PM..
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Old 02-12-2010, 08:43 AM   #5
Colleens_Husband
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Re: Things you should NEVER try

When you get stopped for a minor traffic violation (or for smuggling, for that matter) you should never let the sock puppet do the talking for you. Police officers are trained to have no sense of humor.
__________________
This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 02-12-2010, 03:03 PM   #6
juanita
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Re: Things you should NEVER try

LOL!!!!!! you are tooooo funny!
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 02-12-2010, 08:05 PM   #7
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Re: Things you should NEVER try

Just wanted to say that when I first joined you were the one that reached out to tell me things were not as bad as they seemed, helped me put the research in perspective, and helped me feel like I could be positive in all of this. Thank you. If I see you post I always read and have noticed as time has gone on that you have become more and more light hearted. It must mean your Colleen is doing better and better. All the best and keep up the good work. Carolyn
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12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS
ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~
completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced

I have heard th
ere are troubles of more than one kind

Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
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Old 02-12-2010, 09:59 PM
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Old 02-12-2010, 10:52 PM   #8
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Re: Things you should NEVER try

Another thing not to try:

Purchasing a lawnmower from Toyota !!

Here's Why

Regards
Joe
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Old 02-14-2010, 08:22 PM   #9
Bill
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Re: Things you should NEVER try

Thanks, Joe, but that only makes me want one of those!
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Old 02-15-2010, 09:55 AM   #10
Colleens_Husband
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Re: Things you should NEVER try

Hey Bill!!!

There you are! You're not dead after all!!!! I missed you my friend.

We are going to have to do something epic on this forum to lift everyone's spirits. People are counting on us. And by saying we should do something 'epic', what I really mean is that we should do something really, really STUPID! I'll dream up something stupid to do and you can not think through the consequences. This is going to be GREAT!

Lee
__________________
This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 02-15-2010, 10:53 AM   #11
whatz
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Re: Things you should NEVER try

You nut :-), though I think it would be welcome. It has been hard to live/read thru all our recent losses I think for everybody.
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 10-18-2010, 08:06 AM   #12
Colleens_Husband
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Re: Things you should NEVER try

Another thing you should never try, accepting a friend on Facebook without first reading that person's profile.

I received a friend request from a person, Nathalie, who had the same name as someone I had known five years ago, only she was using her maiden name. I assumed (mostly a bad idea) that Nathalie got divorced. After accepting the friend request, Facebook shifted me to her wall page and it turns out it wasn't the kind and dear friend I knew. It turns out Nathalie, how to put this delicately, requires monetary compensation for compassionate acts that are normally given freely. And she was a hideously bad speller, as well.

I never unfriended anyone before, and I didn't know how to get skanky Nathalie off my friends list, so I had to ask my kids how to unfriend someone. I was worried that skanky Nathalie would know that I unfriended her, get all wrathful on me, and tell everyone that I tipped by putting quarters in her G-string. This was seriously embarrassing and it was all because I was trying to be a good web citizen. It turns out Facebook doesn't send out messages saying that someone has unfriended you, so I was safe.

Anyways, if you want, send me a Facebook friend request to Lee Spurgeon and I will accept it, probably before actually reading your profile page, because that is the type of person I am.
__________________
This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 10-18-2010, 08:34 AM   #13
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Re: Things you should NEVER try

Coleens Husband.... you have put a smile on my face to-day. It is so nice to hear some laughter and fun.... keep it up! Thanks xo
__________________
DX April 2010, Age 45
MRM April 2010 right breast
Stage 2b, Her 2 positive, ER-, PR-
Grade 2
1/16 lymph nodes positive
Started TCH June 2010 every 3 wks. x 6
Port installed end of June
Rads x 35
Continue Hercepton for one year.
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Old 10-18-2010, 03:04 PM   #14
Jackie07
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Re: Things you should NEVER try

My Brother-in-law forwarded me a 'mass' e-mail after I had 'unfriended' him on Facebook. It was the second time that I had kicked him out of my Facebook. First time was after he had chewed me out for using his brother's name on my Internet profile (Am I not 'Mrs. 'his brother'?) His oldest daughter thought it was funny that 'Uncle Jack' had had a hysterectomy. I didn't mind people showing off their low IQs, but I didn't think I needed a 'friend' like him and his kind because none of them asked how I was doing after my surgical procedure.

Somehow he had crawled back to my territory again. Couldn't remember if I had approved a friend request from him. But within a couple of months, he made a discriminatory remark on a link that I had posted. We had a couple of verbal exchanges - quoting scriptures and so on - until he began to label me as an advocate for 'deviate behavior'. This was after I had posted the link to the poem "First they came..." alluding to the consequences when people are indifferent to the injustice done to others.

So I kicked him out again.

Some people never learn. I was so sad that there are so many 'bigots' out there - even a 'well-educated' person such as my Brother-in-law.

He's the only one that shed tears at Mother-in-law's funeral two years ago. We couldn't tell if those were 'guilty' tears or just a show because he had never visited his Mother during the 5 years when she was in the nursing home suffering from Alzheimer's. When Mother-in-law's uncle passed away 20+ years ago, Brother-in-law asked his parents for 'his' share of the inheritance right after the funeral...
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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 10-18-2010 at 03:10 PM..
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Old 12-25-2010, 01:25 AM   #15
SoCalGal
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Re: Things you should NEVER try

Never try to send a sexy "Hey handsome - I want to be your special face-friend" to the WRONG man who has the same name as your boyfriend! And then never tell your boyfriend that you did that and then this other creeper-man FRIENDED you when he knew he didn't know you and also he's MARRIED. I had to un-friend the wrong man and re-friend the right man. Ha-ha. Old face book for sure.
__________________
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.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
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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