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Old 02-13-2016, 07:47 PM   #361
scrunchthecat
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Join Date: Aug 2015
Location: Miami, FL
Posts: 19
Re: Calling all stage iv sisters

I was diagnosed May 2015, Stage IV from the outset with a few small spots on my liver. I had a large (6cm) tumor on my right breast and a bunch of hot lymph nodes in my right arm. Started THP in June 2015, scans in August 2015 showed all cancer activity had resolved. Started H&P every 3 weeks in October 2015, just had tumor markers in February 2016 - all normal. Onc says no scans for 3-6 months. I feel pretty good, work full time (stressful right now), run first thing in the morning every day. I drink no alcohol the week of treatment, but I drink two glasses of red wine the two weeks between treatment!

I had lymphedema in my right arm as a symptom of breast cancer, and see a lymphedema PT every week. It is well controlled.

HER2+++, ERneg, PR < 5% (negative for all intents and purposes). I choose to believe that there are so many treatments for HER2+, and so many in the pipeline (including vaccines), that we can manage this as a chronic disease rather than a terminal one.
__________________
June 2015 - Stage IV, HER2+++, HR-. Mets to liver, assorted lymph nodes.
June 2015 - Begin THP
October 2015 - End THP, begin H&P. PET-CT shows resolution of mets to liver & lymph nodes.
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Old 02-14-2016, 05:46 AM   #362
MaineRottweilers
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Join Date: May 2013
Posts: 570
Re: Calling all stage iv sisters

KaiM, wonderful news that you are doing so well. You must live in awe of those little lives you helped create and influence. What a beautiful, inspired way to live. I am certain you have a special appreciation of each day. Keep living!
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 02-14-2016, 05:48 AM   #363
MaineRottweilers
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Join Date: May 2013
Posts: 570
Re: Calling all stage iv sisters

Scrunch, no AI for you even with a little bit of PR+?
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 02-14-2016, 06:25 AM   #364
scrunchthecat
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Join Date: Aug 2015
Location: Miami, FL
Posts: 19
Re: Calling all stage iv sisters

Hey MaineR - No AI for me. I have had a great response to the HER2 treatments. Honestly, they don't know what to do with PR+. lol - I was going to say that there is one lonely thread on BCO for folks HER2+ ER- PR+, but I see you are already there! Let's keep in touch. The NIH is considering me for a clinical trial - NCT01730118 - but to do so they must re-test my saved biopsy samples. I am very interested to see what they say about it.
__________________
June 2015 - Stage IV, HER2+++, HR-. Mets to liver, assorted lymph nodes.
June 2015 - Begin THP
October 2015 - End THP, begin H&P. PET-CT shows resolution of mets to liver & lymph nodes.
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Old 02-14-2016, 03:12 PM   #365
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

Just saw this posting through an old friend's FB (can't remember if I'd invited this friend of friend's to this forum):

"So my poor city of n b has had a rough week....well I am ready to start turning some frowns upside down....this week I had scans to see where I am at with the cancer...well the results r in....the cancer that was on my bones is inactive....it is causing pain because it is scarring on the bone and will take years to heal....the liver met is GONE....the tumor in my breast is the same size....so what is the plan u may ask?!?! We r going to move forward with the lumpectomy to remove the tumor and will probably get radiation after the lumpectomy...after the lumpectomy I will officially be CANCER FREE!!!! What?!?! YES you are reading correctly and not going crazy...I said it CANCER FREE!!!! Shut the front door people?!?! Are you kidding me!!!!! I am just in complete shock and right now disbelief!!! You have answered my prayers!!! He is not ready for me!!!! Don't get me wrong I still have to deal with cancer for the rest of my life....I have to take a hormone pill everyday and have an intravenous infusion of herceptin every three weeks FOREVER!!! And herceptin is not cheap...$25,000 per infusion!! �� I will b getting scanned every three months for the first year and then every six months after that....then after a year of being free of this crapola I will hopefully get my double mastectomy with reconstruction...OMG!!!! Shut up!!!! I just can't believe it...damn people I am good!!! Hahaha jk!!! I know that I will have a fear of it returning forever and I have to get treated forever but hey my forever is gonna b a lot longer!!!! ��.....you did it!!! You prayed and supported and loved me.....so right now I need to focus on a upcoming surgery...but dang that should b a piece of cake!! I need to write to you as I am just crying...I wouldn't be here without u, my friends, my family and my community, and my boys....u inspired me and gave me strength everyday......I will live each day in the moment...I will b happy and I will give back....I want to touch and inspire and help thousands or millions of people....I am and want to live....I am a mom, a daughter, a friend and hopefully one day again I will get to be a wife....I am blessed....my life I will have a lot of pain because of the scarring on my bones but that is ok bc I am living and breathing and smiling!!! �� I am just so pumped!!! Life is so precious....live for each moment...love the people you surround urself with and fight each battle with grace and dignity!!!! Holy cow....after surgery Mudge will b CANCER FREE....dang skippy I don't know how much stronger you can get!!!! Thank you for you love and support!! I am honored and blessed!!! I love you all!!!! If winning was easy losers would do it.....I told you guys I am NO LOSER!!! ������ ‪#‎mudgestrong‬"
__________________
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; 02-14-2016 at 03:16 PM..
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Old 02-16-2016, 07:36 PM   #366
Dakini52
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Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: Calling all stage iv sisters

Jackie, I'm thinking of you and hoping you have a positive outcome from all of this. I hope you will keep us all posted on your status. We care about you and want you to have the very best.
Debbie
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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Old 02-24-2016, 04:48 PM   #367
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
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Re: Calling all stage iv sisters

Thanks, Debbie.

Have some good news to share...

Didn't receive anything from the hospital for about 10 days (was told it would take five days to get the result and there was a President's Day long weekend in between), so I sent a message to my breast cancer oncologist. (The biopsy was ordered by the GI surgeon after my oncologist had sent me to her for a consult following the ultrasound and CT ordered by the nurse practitioner at the branch clinic near FIL's house). Below is the reply from the oncology nurse (I did make an appointment with the GI surgeon and will see her on the 29th. "An appendectomy and biopsy of the swollen lymph nodes near by will give us a definitive answer to the appendix problem," according to her during our last visit. Has anyone ever hoped/preferred to be diagnosed with an appendicitis?

Received:

2/23/2016 11:52 AM CST
Hi , Dear
Dr S. said to tell you the biopsy is OK, there is no cancer in your liver. No need for chemo.
It would be a good idea to call or send a message to your surgeon and see about the appendix.
Let me know if you have any questions. Thank you, C.

----- Message -----
From:
Sent: 2/22/2016 11:29 PM CST
To: S., MD
Subject: Test Results Question

Hi,

Have you heard anything from my liver biopsy that was done on the 12th? I am pretty sure I have appendicitis and breast cancer metastasis to the liver. Wondered if I needed to take the appendix off before chemo or wait till after the treatment.

Thanks for taking your time to read this. See you on March 4th.
__________________
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; 02-24-2016 at 05:06 PM..
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Old 02-25-2016, 04:36 PM   #368
DianaMK
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Join Date: Mar 2011
Posts: 70
Re: Calling all stage iv sisters

Jackie,
Appendicitis!!! Praise the Lord! That's great news!!
Diana
__________________
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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Old 02-27-2016, 11:32 PM   #369
Dakini52
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Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: Calling all stage iv sisters

Awesome news Jackie! Makes me smile :-)
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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Old 03-03-2016, 11:42 PM   #370
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

O oh ...

Went to the Patient Information porter of the Hospital website and saw 'liver cancer' on the list of all my ailments. Guess what the biopsy found was not a metastasis, but primary liver cancer! I imagine the result of the appendix surgery is going to be the same (primary appendiceal cancer). The oncology surgeon is going on vacation for two weeks. She's going to see me again Monday and probably will get another surgeon to remove/biopsy the appendix for me. The brain specialist who's going to review my anuual MRI Friday [taken before noon] afternoon refused to move the appointment, so the (this past) Wednesday surgery plan she had had in mind fell through.

I finally realized the urgency... On the hospital patient chart site there's a 'liver cancer' on my list now. Guess it's a primary liver cancer. I think the two new cancer probably were caused by the flea poison exposure last spring. (SIL put 10 times the recommended dose on the drive way and patio before she'd left FIL's house. When we arrived a couple of hours later, a mother cat and two babies were dead by the ramp in front of the entrance of the house, lying right by the poisonous powders! I spent about half an hour to dispose all the poison and ended up lying in bed the whole next week.

People who have the desire to 'kill' are having issues inside ... Somehow I've always had the [bad] luck to be around them...
__________________
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; 03-03-2016 at 11:50 PM..
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Old 03-04-2016, 06:52 AM   #371
DianaMK
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Join Date: Mar 2011
Posts: 70
Re: Calling all stage iv sisters

So sorry to read this. Hugs and prayers.
__________________
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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Old 03-07-2016, 08:58 PM   #372
Dakini52
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Re: Calling all stage iv sisters

Oh damn! That just turned my earlier smile upside down :-(. I am thinking of you as are many on this board. Please keep us posted on how you are doing.
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Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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Old 03-08-2016, 10:43 AM   #373
MaineRottweilers
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Re: Calling all stage iv sisters

Jackie, I don't even know what to say, sorry is inadequate. I hope the chart entry is wrong.
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Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 03-08-2016, 11:23 PM   #374
Jackie07
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Re: Calling all stage iv sisters

Brought it up to the young medical oncologist, and he vehemently denied that I had liver cancer (secondary to ...). "It's some kind of allergic reaction," he explained. So the 'liver cancer' entry must have been put on the neurosurgery chart by mistake.

Was supposed to have surgery last Wednesday, but was cancelled because the following Friday's brain MRI and appointment with the neurosurgeon couldn't be rescheduled. A young resident doctor explained to me that if cancer is found at the tip of the appendix, then the procedure will be simply removing the appendix. However, if cancer is found at the base attached to the colon, then another surgery will be arranged within four, five days to remove part of the colon.

The lady surgeon who's highly specialized in GI oncology surgery just left for her 3-week vacation, so another GI surgeon will see me tomorrow at 1 pm to arrange for the surgery.

Did not cancel the 11:30 am consultation appointment with the director of the GI Department as I do like to get his input. (Such as whether or not there's any other GI stuff that I can go ahead remove ...

Steamed some left-over take-outs and ate a good meal tonight. You'all have no idea how long I've been eating oatmeal (with a lot of fruit and yogurt) for breakfast/lunch/midnight snack. (I've been having bowel problems for quite a while now.) Hopefully the good eating habit of the past few years will pay off.

Thanks again for all your support. All my (5)siblings have been informed of my situation now, and Oldest Sis will be accompanied by her daughter to visit me from June 6 to June 11. 2nd Sis will be attending wedding of one of her husband's nieces in New Jersey late May and will join all of us June 6 as well. Then they will be flying back to Taiwan together. Haven't seen them since 1998 (forgot that 2nd Sis had stayed with me for a month after my mastectomy in 2007) ...
__________________
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; 03-13-2016 at 12:27 AM..
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Old 03-09-2016, 08:50 AM   #375
jra40
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Posts: 260
Re: Calling all stage iv sisters

Hope you enjoyed the take out Jackie! So sorry you are dealing with all of this - especially after all you have been through. Many hugs and prayers
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 03-13-2016, 12:11 AM   #376
Jackie07
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Re: Calling all stage iv sisters

Believe it or not, I'd had my appendix out Friday already!

The appointment with Dr. Thomas on Wednesday went well (Partly because the GI Director had told us that he's a fine doctor) until at the end when he said that he's going on vacation for 3 weeks as well!

I couldn't hide my disappointment and just 'lashed out' (more like 'begged' . Then he said he could try to do it Friday when he'd already had two surgeries scheduled that morning. We then went to the admission counter to complete the paper work and paid $100.00 copay for staying two days after outpatient surgery. If I am admitted to the hospital after 48 hours, the lady explained, it will be $450.

Thursday we received a call stating that the report time was changed from 9:30 to 8:00 am. I was so tired trying to clean up the house/finish the laundry that I went to bed right after taking the Exemestane at 7:30. Woke up around 2 am and took shower after watching a little bit TV. Been drinking Gaterade since noon the previous day after taking 4 bisacadyl to clean up the bowel. I was tired and hungry and ready to 'go'!

Turned out the earlier report time was to take care of business at the Admission counter. The lady asked me for a driver's license! (In the hospital where I'd had five prior surgeries!) And she did not like the long expired license I presented her ... (The neuropsychologist who'd done extensive testing on me in 2008~2009 advised me not to drive after I'd flunked the ‘driving test’ administered by her assistant. The testing was arranged after she'd learned I'd had two minor car accidents the previous year.)

Anyhow, I lied down on the cold surgical bed and was very glad the lady there was able to start my IV with just one poke (on the all bruised and beat-up left arm). The surgery started around 12, according to hubby, and he met with the surgeon at the corridor outside OR after the surgeon called him on his cell phone around 2. Everything went well, according to the doctor. There was a lot of puss. Visually he did not see any sign of cancer. And the lab report was also benign. But we will have to wait five days for the final determination...

We were exhausted yet excited driving back to FIL's house. And there was a hot meal on the talbe! SIL had instructed her youngest daughter who lives nearby to cook something for us ...

ps. The surgeon has returned from his one week vacation (glad it's not '3' weeks) and reviewed my pathology report quickly ('never put off tomorrow what you can do today'! . So I got the surprise call from his nurse this afternoon (instead of the projected 'tomorrow'): All's clear! No cancer found in the the specimen of the appendix. Nor was the spots in the liver (just had to get another confirmation as 'liver cancer' was noted on 'my chart', the electronic patient information site.). But be sure to do the 5-year colonoscopy next year...
__________________
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; 03-22-2016 at 04:08 PM..
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Old 03-13-2016, 08:11 AM   #377
Carol Ann
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Posts: 1,045
Re: Calling all stage iv sisters

So glad you had the surgery and everything went so well!! YAY!!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 03-13-2016, 12:19 PM   #378
Colleen
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Location: Monarch Beach, CA
Posts: 88
Re: Calling all stage iv sisters

Good to hear Jackie07! Now on to healing and positive thoughts!
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!


"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 03-13-2016, 07:20 PM   #379
Colleen
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Posts: 88
Re: Calling all stage iv sisters

In general or physically I am doing well. I have a scan next tuesday, ct with contrast. Previously I always had pet scans so this is a new first. I understand the radiation exposure is less but I feel like what's the big deal? I am stage IV, how can it get any worse? Just feeling like I am so "over this"! It's into year three and I read other peoples' posts of ten years of herceptin, that's a minimum of 180 doctor appointments, a minimum of $8,000,000 in treatment not including inflation or increased drug costs or other medical needs; just targeted treatment and I think what for? Why? Is it all worth it?
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!


"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 03-14-2016, 12:13 AM   #380
Jackie07
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Re: Calling all stage iv sisters

Thanks, Carol Ann and Colleen.

Took just one dose of pain pills today. (Not that I didn't feel any pain during later half of the day) Felt good enough to cook a bundt cake with spice cake mix plus one can of apple pie fillings, one cup of apple, one cup of raisins, one cup of walnuts and 1/4 cup of water. Turned out O.K. even though I couldn't remember the exact temperature setting!

Now that's a philosophical question Colleen has here. Why are we here? What's our purpose in life? Where does all these lead to ...

Everyone, (breast) cancer patient or not, asks these questions during certain stages in his/her life. Teenagers especially struggle with these while they are heading toward the 'unknown' adulthood.

I had the good fortune to have met the late Fr. Robert Ronald, SJ. just before I left for the U.S. to further my study in Library Science. He went to Taiwan in his mid 20s as a missionary and contracted polio during the epidemic. He went back to California to get treatment and returned to Taiwan in a wheelchair. There was no vocational rehabilitation for polio patients in Taiwan back then, so he returned to the States and received a master's degree in vocational rehabilitation. He worked as a vocational rehabilitation consultant in the General VA Hospital in Taipei and was buried in Taiwan when he passed in his mid 70's. (A 'Consultant' means he's not entitled to any employee benefit ...)

When I was in the wheel chair during rehab following a 23-hour brain (tumor) surgery (in 1990), I recalled the words in Fr. Ronald's book of collected speeches from his lecture tour arranged by the Social Welfare Bureau in Taipei: "Even if you can not move your limbs, you can find something interesting to think about."

"There are always people in far worse shape than us. The dignity of being a human being does not diminish a bit due to our disability."

I always thought it was not a coincidence that I had met Fr. Bob right before starting my adventure in a 'foreign land'. We all get depressed sometimes. And that's why we are here - to support each other.

Sending you good vibes.

ps. CT is a lot cheaper than PET and can pick up much smaller stuff than PET. That's just my guess.
__________________
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; 03-17-2016 at 02:13 AM..
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