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06-17-2011, 07:00 AM
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#1
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Calling all stage iv sisters
Thank you for taking the time to do this tally. It is wonderful to have this information, and it's very encouraging.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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06-17-2011, 12:54 PM
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#2
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Calling all stage iv sisters
Jackie, That count up you did is remarkable--what a kind gal you are...encourages so many. Ceesun
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09-10-2013, 08:22 PM
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#3
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Senior Member
Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
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Re: Calling all stage iv sisters
Please add me!!!! March 2012 and in love with life!
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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06-17-2011, 06:51 AM
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#4
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Senior Member
Join Date: Jan 2011
Posts: 40
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Re: Calling all stage iv sisters
I found this board and post shortly after I was diagnosed as stage IV in early January 2011. When I received the diagnosis in January, it originally felt like they were telling me there was very little hope and to say my goodbyes. I was devastated for my 4-year-old and 2-year-old. I clung to the fact that my surgeon told me that remission was possible, and however long remission lasted was between me and God. After reading all of the stories on here, I realized it was more than possible, it was going to happen! Every time I read a post from someone else who is stage IV and has beaten the odds, or is around after a long fight, it adds to my resolve to beat this crap into remission until a cure can be found! After my third set of scans, they discovered new liver lesions, and I was scared, wondering if this was the beginning of losing control over this beast. But then I read stories of the many ups and downs throughout these journeys, and it again gives me the boost I need to face it head-on. Thank you all so very, very much for sharing your stories. This is all so scary, but not nearly as much so with so many people to turn to who have gone through the same or a similar experience. I am humbled by all of your courage!
__________________
Krissi
12/27/10 - IDC, rt breast (approx. 15 cm), lymph nodes, age 36. 1/7/11 - stage 4 IDC, extensive liver mets, Bone mets (spine, sacrum, rib, sternum, upper arm), ER-/PR-, HER2+++; 1/12/11 - port, 1/17/11- startweekly Taxol/Herceptin, monthly Zometa
3/8/11- decrease in all tumors, bones healing. 3/11- 3 wks on/1 off Taxol/Herceptin, +Zometa
6/6/11 - decrease in all tumors, healing bones, 2-4 new liver lesions. 3 wks on/1 wk off Taxol/Carbo/Herceptin, +Zometa
7/29/11 - liver progression, others stable; 8/11-drop taxol/carbo, start Navelbine
12/11 - liver progression; begin AC, drop Herceptin;
1/12 - liver enzymes normal, 2/6 results show regression in liver, stable others, but 9 tiny brain mets (largest 7 mm). Begin 13 WBRs 2/6; 2/29-start Tykerb, 3/7, start Xeloda
5/2012- liver progression and regression, liver biopsy confirms HER2+++. drop Xeloda, start Herceptin, Tykerb, Zometa.
5/2012- brain MRI shows all lesions gone except 1, 2mm shrinking!
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06-17-2011, 06:57 AM
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#5
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Calling all stage iv sisters
Hello, Stage IV sisters. I'm one of the newbies. I was Stage IV at diagnosis, on May 24, 2011. I have IDC in my left breast and have confirmed mets to the liver and possible mets to lungs. I have had three treatments of Taxol and Herceptin, with not too many side effects and no follow-up scanning as yet. I don't have any tumor markers.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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06-17-2011, 07:03 PM
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#6
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Senior Member
Join Date: May 2011
Posts: 137
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Re: Calling all stage iv sisters
Hi everyone, I am a newbie here, although I've been reading for awhile. I was dx stage IV 1 hour before I was due for infusion for what we thought was stage III IDC in my right breast. I felt really fortunate to get on a trial for TDM1 and after 3 treatments my liver mets completely disappeared and there was shrinkage in the mets to my spine (18mm-13mm) and a smaller shrinking in the mass in my right breast from 4.4 cm to 4.2 cm. My onc. seemed pleased with the results and we will stay the course for now with TDM1.
I am also greatly inspired and encouraged to see so many stage IV survivors, thriving and living a good life! Thanks to all the veterans showing up to support and encourage all of us newbies, it truly makes a difference!
Vicky
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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06-17-2011, 09:06 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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Re: Calling all stage iv sisters
Hi Ladies, I haven't been here in ages!! I also wanted to weigh in here...I was dx'd in Dec.'01 and have been stage 4 since Mar'04 with met to liver and then may'05 with bone mets...I have recently (christmas time) found out that there is once again mets to the liver...I had to go off of H in September'10 because of heart issues, scans showed only bone involvement at this point...however I started having issues and my ca15-3 gradually climbed from 88 to 295, scans showed liver tumor, back on H quick!! tumor markers down to 177 with 1st treatment back. However last week tumor markers back up to 255 now and I just feel yuckier...appetite issues, off and on nausea, excessive heart burn, and just generally don't feel sick enough to stay in bed, but not well enough to do much!! Sound familiar to anyone...
Heart is becoming issue again, but I am afraid to stop again because "the big wigs in charge?" have told my onc that I will lose H permanently if I stop again....Hmmmmm dropping dead suddenly because of heart issues is an easier death than the one I have imagined...LOL... I firmly believe that I will go NO WHERE until my Creator says it's time!!! There is freedom in that!!!!
Anyway, cardiologist will try upping my meds first, and then we'll see.
I am going to do the fish oils though and Omega 3..thanks to the wisdom of you ladies!!
I am now waiting for approval and paper work crap to go through so I can add tykerb to my regime...
Next week I get to see my son get his high school diploma!!! He was 8 when I was dx'd..I got to turn 40 last month and my hubby and I have our 20th anniversary next month!!
God has been faithful and merciful to my family and we will be grateful no matter how things "play out".
Thanks for letting me go on and on (not that you had much choice!! LOL)
I hope this post came across as encouraging to newbies as I meant it!!!
Life has been good to me!! Hey there is a song in there somewhere!!!
Love to you all....
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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06-17-2011, 09:37 PM
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#8
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Calling all stage iv sisters
Hey Tammymarie -
Yes, long time, no see. But sorry to hear you have the stubborn liver met. Outweighing that is all the GREAT news about your family milestones. And I am sure there are more to come.
I have somehow missed adding my two cents and 9 years + worth of stage IV to this thread. But here I am to add one more hopeful story to this group.
We have more than one thread on these boards listing survival stories. Great to have so many add theirs!
__________________
"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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06-17-2011, 10:08 PM
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#9
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Calling all stage iv sisters
Stage IV Diagnosis
Trish – Dec. 2006 4 yr 6 month
Pam P. – Sept. 2002 8 yr 9 month
Colleen007 – Oct. 2005 5 yr 8 month
Missyw – Aug. 2006 4 yr 10 month
Joan M – Jan. 2007 4 yr 5 month
Kathy T – [Jan. 2003] 8 yr 5 month
Nancy L – Feb. 2009 2 yr 4 month
Chelee – Dec. 2005 5 yr 6 month
Lori R – Oct. 2007 3 yr 6 month
Deena H – Jan. 2011 5 month
Barbara H – May 2004 7 yr 1 month
Chrisy – Sept. 2004 6 yr 9 month
Sheila – Sept. 2003 7 yr 9 month
Nsebesta – May 2004 7 yr 1 month
Mamacze – 2004 7 years
Ceesun – over 4 years 4 years
Hutchibk – Aug. 2005 5 yr 10 month
Emilieb – Jan. 2010 1 yr 5 month
DEBBIE S – Oct. 2004 6 yr 8 month
Krisvell – Nov. 2010 8 month
SuThorn – Sept. 2007 3 yr 9 month
CourtneyL – April 2008 3 yr 2 month
Hema – March 2011 3 month
Schoolteacher – Dec. 2007 3 yr 6 month
SoCalGal – March 2007 4 yr 3 month
MaryL – July 2004 6 yr 11 month
PatE – Oct. 2007 3 yr 8 month
KDR – June 2010 1 yr
Flossie – July 2008 2 yr 11 month
Marilyn – Jan. 2001 10 yr 5 month
Kim in CA – Sept. 2001 9 yr 9 month
Adriana Mangus – July 2003 7 yr 11 month
Kim in DC – Feb. 2008 3 yr 4 month
Fauxgypsy – Feb. 2007 4 yr 4 month
DianaMK – June 2010 1 yr
[SoCalGal counted so far 33 members living 145 total] I counted 168 year
Tonya – Aug. 2006 4 yr 10 month
Asahizuru – 2002 9 yr
Vivienne [Mom of] – March 2011 3 month
Radiant – 2010 1 yr 6 month
Ahoff – 2010 18 month
Sherryg683 – Dec. 2005 5 yr 6 month
Kavy – Nov. 2005 5 yr 7 month
DQ1 – 2011
Unregistered – Jan. 2007 4 yr 5 month
[DMWARN] [wife] – 2000 11 yr
Linda b – Jan. 2007 4 yr 5 month
Angela R – 2011 2 month
Hraby73 – April 2011 2 month
Kmswilson – Jan 2011 5 month
Mtngrl – May 2011 1 month
Vicky – March 2011 3 month
tammymarie1971 – Dec 2001, March 2004 7 yr 3 month
Total 54 members and 228 year 5 months as of June 18, 2011 (according to the postings on this thread.)
__________________
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
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06-17-2011, 10:34 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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Re: Calling all stage iv sisters
Thanks for adding me Jackie..Don't forget Steph!!!
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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06-17-2011, 11:54 PM
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#11
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Calling all stage iv sisters
[Introduced this thread to one of our new members. Then I noticed SoCalGal's tally (145 years for all 33 members) Thought I'd double check and add the others following her posting. And I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (12 years) and AndiBB (13 years), to name a few.
And it suddenly downed on me that I myself have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures of the medical staff - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my family doctor thought I was hypochondriac, he was wrong; and the increasingly 'painful' mammagram I'd been experiencing for four years wasn't because 'some women' have painful mammagrams...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]
(Initial Diagnosis) Stage IV Diagnosis _______Triumph years since Stage IV
Trish – (May 2004) Dec. 2006______________4 yr 6 month and counting
Pam P. – (June 2001) Sept. 2002____________8 yr 9 month and counting
Colleen007 – Oct. 2005 ___________________ 5 yr 8 month and counting
Missyw – (Jan 2001) Aug. 2006 _____________4 yr 10 month and counting
Joan M – (Sept 2003) Jan. 2007 ____________ 4 yr 5 month and counting
Kathy T – [Jan. 2003] _____________________ 8 yr 5 month and counting
Nancy L – Feb. 2009 ______________________ 2 yr 4 month and counting
Chelee – Dec. 2005 _______________________ 5 yr 6 month and counting
Lori R – Oct. 2007 ________________________ 3 yr 6 month and counting
Deena H – Jan. 2011 ______________________ 5 month and counting
Barbara H – May 2004 ____________________ 7 yr 1 month and counting
Chrisy – Sept. 2004 _______________________ 6 yr 9 month and counting
Sheila – Sept. 2003 _______________________ 7 yr 9 month and counting
Nsebesta – May 2004 _____________________ 7 yr 1 month and counting
Mamacze – 2004 _________________________ 7 yr and counting
Ceesun – over 4 years _____________________ 4 yr and counting
Hutchibk – Aug. 2005 _____________________ 5 yr 10 month and counting
Emilieb – Jan. 2010 _______________________ 1 yr 5 month and counting
DEBBIE S – Oct. 2004 ______________________6 yr 8 month and counting
Krisvell – Nov. 2010 _______________________8 month and counting
SuThorn – Sept. 2007 _____________________ 3 yr 9 month and counting
CourtneyL – April 2008 ____________________ 3 yr 2 month and counting
Hema – March 2011 ______________________ 3 month and counting
Schoolteacher – Dec. 2007 _________________3 yr 6 month and counting
SoCalGal – March 2007 ____________________4 yr 3 month and counting
MaryL – July 2004 ________________________ 6 yr 11 month and counting
PatE – Oct. 2007 __________________________3 yr 8 month and counting
KDR – June 2010 __________________________1 yr and counting
Flossie – July 2008 ________________________ 2 yr 11 month and counting
Marilyn – Jan. 2001 _______________________10 yr 5 month and counting
Kim in CA – Sept. 2001 ____________________ 9 yr 9 month and counting
Adriana Mangus – July 2003_________________7 yr 11 month and counting
Kim in DC – Feb. 2008 _____________________ 3 yr 4 month and counting
Fauxgypsy – Feb. 2007 _____________________4 yr 4 month and counting
DianaMK – June 2010 _____________________ 1 yr and counting
Tonya – Aug. 2006_________________________4 yr 10 month and counting
Asahizuru – 2002 _________________________ 9 yr and counting
Vivienne [Mom of] – March 2011____________ 3 month and counting
Radiant – 2010 ___________________________1 yr 6 month and counting
Ahoff – 2010 _____________________________1 yr 6 month and counting
Sherryg683 – Dec. 2005 ____________________5 yr 6 month and counting
Kavy – Nov. 2005 _________________________5 yr 7 month and counting
DQ1 – 2011 ______________________________ and counting
Unregistered – Jan. 2007___________________ 4 yr 5 month and counting
[DMWARN] [wife] – 2000 __________________ 11 yr and counting
Linda b – Jan. 2007 _______________________ 4 yr 5 month and counting
Angela R – (2009) April 2011________________2 month and counting
Hraby73 – April 2011______________________ 2 month and counting
Kmswilson – (Dec 2010) Jan 2011_____________5 month and counting
Mtngrl – (April 2011) May 2011______________1 month and counting
Vicky – March 2011________________________3 month and counting
tammymarie1971 – (Dec 2001) March 2004____7 yr 3 month and counting
StephN – (Sept 2000) Jan. 2002_______________8 yr 5 month and counting
Total: 53 members (who have posted on this thread) and 236 year 10 months as of June 18, 2011
__________________
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; 06-18-2011 at 01:28 AM..
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06-18-2011, 12:28 AM
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#12
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: Calling all stage iv sisters
Jackie, this calculation will keep you busy but your work is very much appreciated. I certainly hope to keep adding to the burden of calculation! Tammy's ups and downs are very familiar to me (except my tumour marker numbers tend to get into the 4 figures not the 3 figures!) I've enjoyed many family milestones in my Stage IV time and had lots of great experiences. My QOL is as good as, if not better than, many of my friends' and, like Tammy, I plan to continue as long as I can but I will take what comes with grace the help of medical science. Well that is the theory anyway. Newbies, you have a much better chance of being in Steph N's shoes than we did because more options are available sooner.But even if that level of stable disease eludes you, you can still look forward to lots of time as parents, friends, family members, workers -whatever your life offers. And do keep Jackie busy.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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06-18-2011, 03:22 AM
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#13
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Calling all stage iv sisters
[Introduced this thread to one of our new members. Then I noticed SoCalGal's tally (145 years for all 33 members) Thought I'd double check and add the others following her posting. And I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (12 years) and AndiBB (13 years), to name a few.
And it suddenly downed on me that I myself have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures of the medical staff - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my family doctor thought I was hypochondriac, he was wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters, for sharing your fighting spirit and triumphs with us. 6-15-2011]
Name________(Initial Dianosis) Stage IV Diagnosis_____Triumph years since Stage IV
__________________________________________________ _________________NED = No Evidence of Disease
Trish____________________(May 2004) Dec. 2006______4 yr 6 month and counting
Pam P______________(June 2001)Sept. 2002___________8 yr 9 month and counting
Colleen007_______________Oct. 2005________________5 yr 8 month and counting
Missyw_____________(Jan. 2001)Aug. 2006___________4 yr 10 month and counting
Joan M__________________(Sept.2003)Jan. 2007_______4 yr 5 month and counting
Kathy T__________________Jan. 2003________________8 yr 5 month and counting
Nancy L__________________Feb. 2009________________2 yr 4 month and counting
Chelee___________________(Dec. 2005) Sept2009______5 yr 6 month and counting
Lori R____________________Oct. 2007________________3 yr 6 month and counting
Deena H_________________(March 2010) Oct. 2010_____9 month and counting
Barbara H________________May 2004 ________________7 yr 1 month and counting
Chrisy______________(June2001)Sept. 2004 ____________6 yr 9 month and counting
Sheila___________________(Feb. 2002)Sept. 2003 ______7 yr 9 month and counting
Nsebesta_________________May 2004 ________________7 yr 1 month and counting
Mamacze ________________(2001)2004________________7 yr and counting
Ceesun___________________over 4 years______________4 yr and counting
Hutchibk_________________(Nov2003)Aug. 2005 _______5 yr 10 month and counting
Emilieb___________________Jan. 2010 ________________1 yr 5 month and counting (14m NED)
DEBBIE S__________________Oct. 2004 ________________6 yr 8 month and counting
Krisvell___________________(June 2009)Nov. 2010 ______8 month and counting
SuThorn__________________Sept. 2007 _______________3 yr 9 month and counting
CourtneyL ________________April 2008 _______________3 yr 2 month and counting
Hema____________________(2010)March 2011_________3 month and counting
Schoolteacher_____________Dec. 2007________________3 yr 6 month and counting
SoCalGal_______(1996; 2002) March 2007______________4 yr 3 month and counting
Mary L___________________(Oct 2003)July 2004________6 yr 11 month and counting
PatE_____________________Oct 2007_________________3 yr 8 month and counting (NED)
KDR______________________June 2010________________1 yr and counting (4 m NED)
Flossie____________________(Jan 2006)July 2008________2 yr 11 month and counting
Marilyn______________July 2001______________________9 yr 11 month and counting
Kim in CA____________(Feb 1997)Sept 2001_____________9 yr 9 month and counting (6 yr NED)
Adriana Mangus______(June 1994)July 2003_____________7 yr 11 month and counting
Kim in DC____________(Aug 1998)Feb. 2008 _____________3 yr 4 month and counting
Fauxgypsy_________________Feb 2007 _________________4 yr 4 month and counting
DianaMK _________________(Dec 2006) June 2010________1 yr and counting
Tonya____________________Aug 2006__________________4 yr 10 month and counting
Asahizuru_____________(1990, 1996)2002 _______________9 yr and counting
Vivienne [Mom of]__________March 2011_______________3 month and counting
Radiant __________________(2005)2010_________________1 yr 6 month and counting
Ahoff ____________________May 2010__________________1 yr 6 month and counting
Sherryg683________________Dec. 2005__________________5 yr 6 month and counting
Kavy_____________________(April 2005)Nov. 2005________5 yr 7 month and counting
DQ1______________________(May 2009)Feb 2011_________4 month and counting
Unregistered_______________Jan. 2007__________________4 yr 5 month and counting
[DMWARN] [wife]______(1999)2000 _____________________11 yr and counting
Linda b___________________Jan. 2007___________________4 yr 5 month and counting
Angela R__________________(2009)April 2011_____________2 month and counting
Hraby73 __________________April 2011__________________2 month and counting
Kmswilson ________________(Dec 2010) Jan 2011 __________5 month and counting
Mtngrl (Amy)______________(April 2011)May 2011 ________1 month and counting
Vicky_____________________March 2011_________________3 month and counting
tammymarie1971___________(Dec 2001) March 2004_______7 yr 3 month and counting
StephN_______________(Sept 2000) Jan 2002______________8 yr 5 month and counting
Total 53 members (who have posted on this thread) and 236 year 10 months as of June 18, 2011
From NancyL: Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well.
__________________
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; 02-20-2016 at 03:02 PM..
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06-18-2011, 08:06 AM
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#14
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Junior Member
Join Date: Feb 2011
Posts: 3
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Re: Calling all stage iv sisters
Diagnosed stage IV 5-2010 IBC, 5 rounds of chemo, surgery, 3 rounds of chemo, then 36 radiation treatments. Pet scan 3-2011 showed no signs of cancer, but a mamogram last week has sent me for a bioposy on Tuesday. I've been on herceptin since June 2010. Tumor markers have been 17. Any thoughts?
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06-18-2011, 11:07 AM
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#15
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Senior Member
Join Date: Jul 2008
Location: Durham NC
Posts: 73
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Re: Calling all stage iv sisters
Gosh, I haven't been on the forum in a while, I have been very busy with work as usual! I quit my job and opened my own business last fall after a nasty incident involving my past employer and my health privacy rights.
Still here, working about 65 hours a week and going strong!!
I take Tykerb every day (sometimes give myself a day or two off) and no tumor markers. Just scans every 9 months or so.
What a wonderful bunch of ladies we have here!
__________________
4/06 Found small lump, biopsy + at 34 yrs.
5/06 Diagnosed IIIC, lumpectomy, 11/11 nodes HER2+
6/06 port placed. 4 Ad/Cyt and 4 Tax.
11/06 bilateral mastectomy
12/06 begin Rads
1/07 Finished Rad-started H, weekly for one year.
1/08. Finished H, scan showed activity in nodes, Doc says 'not to worry about it' and sends me on my way.
7/08 Scan shows numerous involvement in armpit, also large active nodes in supr. clav.
Doctor refused to give me HER2 meds.
8/08 fired doctor, found another. Started Tykerb/Xeloda. After one round, nodes are shrunk and normal sized!
12/08 NED continue Ty/X
3/09, 6/09, 9/09, 11/09, all scans show NED
Dropping X, continue Tykerb
As of 6/10, 3/11 still negative, continuing Tykerb...
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06-18-2011, 01:14 PM
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#16
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Calling all stage iv sisters
Hi, Yankeebikachic,
Did you doctors consider you Stage IV when supr. clav. nodes became involved?
I'm on the same regimen as you (with Herceptin) and noticed that you now take Tykerb only...and Ceesun is also less her chemo. Thanks for sharing?
Congratulations on your good decisions and great health outcome!
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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06-19-2011, 07:52 AM
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#17
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Senior Member
Join Date: Jul 2008
Location: Durham NC
Posts: 73
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Re: Calling all stage iv sisters
Yes Karen, I am Stage 4 with that involvement--anything outside of that immediate area they consider a 4. Plus, I did the H for a year after all the chemo, rads, etc and I lit up on my PET very shortly after I finished H whereas before I was clean. Did the X and Ty. and started getting great results immediately but stayed on that combo for a long while after I even was scanning clean. Been on Ty ever since and doc does not want me off of it, period, even though I would sure like too, lol! But so very thankful for great results so far and glad I found my inner you-know-what to get to where I am today. You should have great results with that combo, I'm glad you are on it!
__________________
4/06 Found small lump, biopsy + at 34 yrs.
5/06 Diagnosed IIIC, lumpectomy, 11/11 nodes HER2+
6/06 port placed. 4 Ad/Cyt and 4 Tax.
11/06 bilateral mastectomy
12/06 begin Rads
1/07 Finished Rad-started H, weekly for one year.
1/08. Finished H, scan showed activity in nodes, Doc says 'not to worry about it' and sends me on my way.
7/08 Scan shows numerous involvement in armpit, also large active nodes in supr. clav.
Doctor refused to give me HER2 meds.
8/08 fired doctor, found another. Started Tykerb/Xeloda. After one round, nodes are shrunk and normal sized!
12/08 NED continue Ty/X
3/09, 6/09, 9/09, 11/09, all scans show NED
Dropping X, continue Tykerb
As of 6/10, 3/11 still negative, continuing Tykerb...
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06-22-2011, 12:26 PM
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#18
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Re: Calling all stage iv sisters
What a wonderful thread! I hope my post will be helpful also. Most of you probably know my history since I think I may well be the oldest survivor on this site, being age 81 and now fighting my 4th round of BC in 26 years. I was diagnosed in 1985 with in situ stage 1 BC in my right breast. The only treatment was a bilateral mastectomy. The cancer returned in my spine (2 vertebras) in 1990. I assume it should have been considered stage 4 then because it had travelled, but don't know for sure. Again no chemo, just tamoxifen and alternate treatment, including self hypnosis and vegetarian diet. Went for 15 years NED. I stopped seeing an oncologist because I moved away. My last MRI report had read "healed metastatic breast cancer", so I just more or less forget about the cancer! Then I had a heart attack in 2004 and in the testing process a CT scan showed that BC was back, in my right lung, and now her2. I have to be thankful for that heart attack! Six months of Navelbine and Herceptin, then herceptin alone for 11 more months stopped the BC. My ejection fraction dropped to 30 so I had to stop the herceptin. I had a triple bypass in 2006. A year ago the BC showed up again in the right lung, and we have tried 5 kinds of chemo since then. I had some bad side effects to the first 4, and am now on halavan alone. I have become weaker with each chemo but am hoping the halavan will do the trick. I am uneasy about not having herceptin too and am considering seeing another oncologist.
I hope my story will be encouraging, even though I am fighting the Beast for the 4th time. I am thankful for the 26 years I have been fighting and all the blessings received. This last month has been the Month of the Babies: 5 new great-grandchildren born in the last 30 days, 3 boys and 2 girls! I have lived long enough to see my children become grandparents! The total now for my husband and me is 9 children, 32 grandchildren and now 48 great-grands! My prayer is that each one of you may continue to win the fight for as many years as I have! This website has been a blessing I am so grateful for and I am thankful for all I have learned and shared here. My advice to you is to keep being a part of this wonderful caring and informative group, and remember faith and fear cannot coexist. There has never been as much hope as there is now for new treatments, even a cure! Hugs, TriciaK
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06-22-2011, 05:08 PM
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#19
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Calling all stage iv sisters
Thank you, Tricia K! What an inspiration.
If I get 26 more years I'll be in my 80's too. I'll take it.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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06-18-2011, 01:42 PM
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#20
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Calling all stage iv sisters
Well, I belong in this thread now. I got mets to the liver only five months post herceptin. I had a clean scan the week I finished herceptin and five months later, two lesions.
Neither my doctor nor I know if that means herceptin worked for me or not.
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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