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Old 06-04-2012, 03:19 AM   #1
Ellie F
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Smile Mamace (Kim) how are you?

Hi Kim
I remembered it's some time since you stopped herceptin and just wondered how you were doing?

Ellie
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Old 06-04-2012, 07:19 PM   #2
KDR
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Re: Mamace (Kim) how are you?

I was just thinking about Kim today. If we don't hear from her, I will give her a call. Sure do miss her smiling face and posts!
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 06-05-2012, 03:04 AM   #3
Ellie F
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Re: Mamace (Kim) how are you?

Thanks Karen,hoping and praying she has remained NED since stopping herceptin.
Ellie
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Old 06-05-2012, 05:07 PM   #4
mamacze
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Re: Mamace (Kim) how are you?

Hi Girls!
Thank you for the wake up call - I must get back on this site and get caught up with my "sisters".
And Karen, thank you for your phone call today! I loved hearing a voice from the Her2 boards and more importantly it was just plain great to hear how well you did on your last clinical trial.
I have to update my signature - and I would tonight except my 17 year old is pacing around the kitchen waiting for his turn on the computer....so....in short....
I went off Herceptin June 2011 (it was WONDERFUL...energy....joy...like a big push through the air on a swing!)..... the swing came back to the ground when February scans showed recurrence of 1 tumor in my lungs. Just one small one - so back on Herceptin I went. May scans showed the same 1 tumor; no bigger no smaller. Staying on Herceptin. Will keep you all posted on August scans. I am totally NONresponsive to ALL tumor markers - so it will have to be scans that mark any changes.
Karen - the article I told you about is here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3251862/

A small bucket of hope - it is a full discussion of options beyond Herceptin - Novel therapeutic strategies in Her 2 positive metastatic breast cancer.

It puts all our options out there and may be helpful as you analyze available clinical trials.

Ellie, how are you doing now? What is your status? I don't see a signature and unfortunately, my window for being on line tonight is rapidly closing!!!
Please keep me posted on your doings and status.
Love and Hugs,
Kim from CT
ps Karen! watch your PM's, If I have 5 minutes tomorrow, I will jot off a message and maybe we can connect in NYC for a lunch?
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 06-05-2012, 05:20 PM   #5
KDR
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Re: Mamace (Kim) how are you?

Kim,
How I've missed that smile and yellow jacket!
So happy to "see" you again.
OK, I'll check the PMs, we'll make a lunch date. Thank you for the link. Now, I'm going to put my 8-year-old to bed--she has a Spring Concert (violin) tomorrow!
Love
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 06-05-2012, 06:59 PM   #6
Delaney
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Red face Re: Mamace (Kim) how are you?

It is unbelievable that you are NED for years until they take you off Herceptin! What would we do without that fantastic drug. Best wishes on getting back to being comfortable with NED.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 06-05-2012, 08:59 PM   #7
StephN
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Re: Mamace (Kim) how are you?

Hey Kim -
Sorry to hear NED stepped away for a moment, but he WILL be back.

At least all is stable at this time. And you know that there are some other drugs a short way down the road that can do the job.

At least you got to take off the clinic leash for a while.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-06-2012, 02:15 AM   #8
Ellie F
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Re: Mamace (Kim) how are you?

Hi Kim
Glad to hear from you but sorry the darn thing came back! Really pleased you are stable and sure NED will be back.I told my onc last year about you following a discussion about herceptin resistance. He argued (as I believe Dr Slamon does) that resistance occurs in most patients after a few years. What I think is clear is that there is probably a subset of women who do NOT gain resistance.this is encouraging but also confusing as I guess currently we have no way of knowing who is in which group. If it were clearer we could continue herceptin for women in high risk groups for recurrence.
I was interested to hear how well you felt off herceptin. I have been having it for 4 years and feel that there are cumulative effects the longer time you have it but can't seem to find anymore info? However despite side effects I am grateful for the benefits this drug brings to so many of us.
Hugs
Ellie
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Old 06-06-2012, 02:27 AM   #9
michka
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Re: Mamace (Kim) how are you?

Hi Kim
I was hoping you were just living your life and just forgot about all the bad days. I am so sorry you have to update your signature. I hope Herceptin will keep that stupid tumor quiet. Hugs. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 06-06-2012, 04:38 AM   #10
sarah
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Re: Mamace (Kim) how are you?

Hello Kim,
Sorry to hear about a new tumor but hopefully the Herceptin will end that. Have they thought about adding something else in with the Herceptin?
Take care and get back to NED quickly
hugs and love
sarah
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Old 06-06-2012, 02:13 PM   #11
mamacze
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Re: Mamace (Kim) how are you?

Hey StephN - I am so darn glad to see you are still active on the boards - it seems like yesterday we were clinking wine glasses in Seattle! I am thrilled beyond belief that you are in the TVG vaccine trial. Please send along my fondest regards to Doreen, Dr. Salazar and Dr. Disis - warrior angels all.
Ellie - You have been on Herceptin for 4 years...ugh! Yes the side effects do accumulate - I think after 4 years I started getting canker sores in my mouth from it - then of course the sore joints, etc, but minor when you consider the alternative, right? I agree that there is a small subset of women who do not experience Herceptin resistance - I am not sure if I am in that group yet; but I will know more in August. An afterthought - keep up with your cardio, as you don't want a declining heart function to impede your eligibility for future treatments T DM1 or other clinical trials., right?
Michka - Stupid tumor is right - please tell me that you are NED now on TDM 1
And Sarah, thank you for chirping! Your puppy is adorable!!! In August, if my tumor grows, yes they will add to the Herceptin- how are YOU doing?
Wow this is almost as good as a girl's night out - all we are missing is a table and a few bottles of wine. It just warms my heart to see you all here and doing well.
xoxo
Kim (from CT)
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 06-06-2012, 03:13 PM   #12
Sheila
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Re: Mamace (Kim) how are you?

Kim
It was great to log on and see an "old timer" checking in.....sorry to hear your flying solo without super H didn't last....but glad Theynare keeping a close eye on you..I too rely on scans..tumor markers don't show accurarately for me...they are usually in normal range when I have something g going on....hoping the Herceptin will keep you in check without adding any drugs

stay in touch...we miss you
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 06-06-2012, 06:10 PM   #13
Becky
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Re: Mamace (Kim) how are you?

Hey Mama

I am still here too and rooting for you.

Remember Atlanta!
__________________
Kind regards

Becky

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 18 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 06-08-2012, 04:05 AM   #14
sarah
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Re: Mamace (Kim) how are you?

Hello Kim,
I am so touched that you can think of all of us when you are going through so much. but that's you and why we care so much about how YOU are going.stop worrying about us and concentrate on you and getting well.
Be well. This new treatment is encouraging.
Have a nice glass of red wine and some chocolate!!!
big hugs - we all need them
get well
lots of love
hey I expect you to visit me here in Provence! Ask Stephanie about how cute is my village and my dog!!!
love sarah
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Old 06-08-2012, 06:14 AM   #15
mamacze
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Re: Mamace (Kim) how are you?

Hey Becky! Yeah! You are still with us! A role model for all - I loved our time at ASCO in Atlanta - I still tell my husband that you are one of the smartest people I know! At first I thought...when my cancer takes a real serious turn (as if Mets isn't real serious...who am I kidding?!), I would call Becky. That is when I realized that I needed to crack open the books, analyze the journals and abstracts and instead of calling you , simply put in the effort and do what you do, instead. You are a real role model for me

Sheila, thank you so much for your encouragement - I can see by your signature that you have been around the block many many times. Your journey is a humbling inspiration for me.

Sarah - you are so sweet - I totally agree with you that when in crisis, there is nothing like a glass of red wine and chocolate.
I still wonder about your treatments and how you are doing. Be careful who you invite to Provence - you may find yourself with 100 Her 2 ladies at your door! All of you girls across the pond should come to the states and visit us! The lobster on our Connecticut shore is delicious!

Karen - it is Friday - I am watching my PM's and thinking of you.

Love Kim (from CT)
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 06-08-2012, 06:48 AM   #16
Ellie F
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Re: Mamace (Kim) how are you?

Kim
Thanks for the reply about long term herceptin use and side effects. Interesting I have never had a sore mouth until recently so it made a lot of sense. I strongly believe that you will respond again very well to herceptin but I suppose your onc will want to add something if the pesky met doesn't go by your next scan. I also wonder how much impact the vaccine had on your immune system in fighting the cancer? I know we will never know but kind of makes you wonder.
Ellie
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Old 06-08-2012, 07:11 AM   #17
sarah
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Re: Mamace (Kim) how are you?

Hello Kim,
Nothing better than northeastern lobster!!
Had my angioplasty and stent put in, chest pain gone but breathing still a problem but that's due to the fibroids or whatever they're called in my right lung, also due to radiation! I've known about that for a while but seems to have worsened along with having the chest pain. taking some new meds for it ( an inhaler) and hope that keeps it from getting worse, told no way it can improve but hey, I've got another lung and I can still go to the gym (pilates, yoga, t'ai chi - no heavey stuff) and walk and swim so no complaints! who can complain living in the south of France!!! Certainly not me. thanks for asking but I'm ok. now let's make sure you get ok, ok!!!
well if a bunch of you show up, come in the summer when I can put up a tent in the back yard because my house in small but cute!!
hugs and love
sarah
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Old 06-10-2012, 05:33 PM   #18
mamacze
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Location: Madison, Connecticut
Posts: 638
Re: Mamace (Kim) how are you?

I am so glad to hear you are active and in good spirits; although chest pain, angioplasty and a stent does not sound like a walk in the park! It almost sounds like you got a radiation burn to your heart muscle??!? I hate when these "against the odds" things happen, but here you stand, with a peaceful. " it is what it is" attitude. Thank you for your tranquil but determined outlook, it is an attitude I reach toward. I am glad you are OK.
XOXO love and hugs,
Kim (from CT)
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 06-10-2012, 08:41 PM   #19
ElaineM
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Wink Re: Mamace (Kim) how are you?

I hope NED shows up soon !! He is missed when he steps away for awhile.
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Peace,
ElaineM
12 years and counting
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Lucky 13 !! I hope so !!!!!!
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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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