HonCode

Go Back   HER2 Support Group Forums > Caregivers Corner
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Caregivers Corner Dedicated to those who support their loved ones.

Reply
 
Thread Tools Display Modes
Old 01-16-2012, 09:00 PM   #1
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,801
Dying of other cancer...

I've been feeling so sad about my college basketball teammate who'd been moved to hospice a couple of days ago after a complete hysterectomy early October when cervical cancer was confirmed. She's only 50 going 51 late this month.

She had confused the signs of discomfort with 'menopause' and the stress from caring for her 80+-year-old Mother who'd been diagnosed with colon cancer three years ago. She moved out a year ago and lived by herself while teaching full-load in the university as a Biology professor (had received her Ph.D from MIT in the 80's). Cervical cancer is usually silent...

After the hysterectomy, she's only able to endure one round of chemo and radiation to each of the three spots on her bones. She's also been suffering from liver mets... [I see now the wisdom of doing chemo before surgery. Angiogenesis tends to cause cancer cells to spread...]

Her father had died at a fairly young age (60?)

I just wanted to remind everyone that there are other cancers out there that are deadly! Take actions (genetic testing, prophylactic hysterectomy/oophorectomy/cervix removal...) and pay close attention to your health. Cancer develops because our own cells fail to regulate the growth. One of my doctors (a neurosurgeon) had told me that "People who have one type of cancer are more likely to have another type of cancer..."

She's a year behind me and we'd been on the same team since high school... She'd also lettered in track (long jump and relays) thus her nick name: 'Monkey' (='Houtzu' - similar to the pronunciation of her last name 'Hou'.)
__________________
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

"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; 06-27-2012 at 04:43 AM..
Jackie07 is offline   Reply With Quote
Old 01-16-2012, 09:12 PM   #2
karen z
Senior Member
 
Join Date: Apr 2008
Posts: 1,476
Re: Dying of other cancer...

Jackie,
I am so sorry to hear about your friend/former teammate. This is very sad news. Your words of being vigilant about taking care of ourselves are important for all of us. Thank you.
Again, I am so sorry.
karen z
karen z is offline   Reply With Quote
Old 01-16-2012, 09:26 PM   #3
Paty
Senior Member
 
Paty's Avatar
 
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
Re: Dying of other cancer...

Jackie,

I am so sorry...a hug.

Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
Paty is offline   Reply With Quote
Old 01-18-2012, 02:34 PM   #4
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,801
Re: Dying of other cancer...

My dear friend, Prof. Lucy Hou, just passed away 10 hours ago in Tainan, Taiwan. She'd been my basketball teammate (college and high school) for 6 years. She had also lettered in track (long jumps and relays).

Please, everyone, get a genetic testing/consult and take preventive measures. Her passing was so sudden (diagnosed in late September) and shocking to us... One of the teammates who had visited her had just called me from Hawaii while on break. Ms. Yang had had surgeries to remove 'everything' after a diagnosis of breast cancer and then ovarian cancer several years ago. She couldn't believe 'Houtzu' (= 'Master Hou' or 'Monkey', Lucy's nick name) could be gone so soon. They'd had a good visit in the hospital just 10 days ago...

Cervical cancer is 'silent' - Houtzu had no known risk factors except for being a woman.
__________________
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

"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; 06-27-2012 at 04:45 AM..
Jackie07 is offline   Reply With Quote
Old 01-18-2012, 03:03 PM   #5
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,142
Wink Re: Dying of other cancer...

I am sorry to hear about the passing of your good friend.
Please take care of yourself. I know you are sad now, but please be comforted by the happy memories you shared with her.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Old 01-18-2012, 03:05 PM   #6
bejuce
Senior Member
 
bejuce's Avatar
 
Join Date: May 2009
Posts: 509
Re: Dying of other cancer...

Hi Jackie,

I'm so sorry about your friend. It's so hard to comprehend how life works sometimes.

Sending you virtual hugs,

Marcia
__________________
ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


bejuce is offline   Reply With Quote
Old 01-18-2012, 07:14 PM   #7
KristinSchwick
Senior Member
 
KristinSchwick's Avatar
 
Join Date: Jun 2011
Location: Iowa
Posts: 231
Re: Dying of other cancer...

I agree with Marcia, life really makes little sense most days, we just like to pretend that this chaos has a purpose. The silver lining is to appreciate the time we had/have with our loved ones.

Sorry to hear about your loss.
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
KristinSchwick is offline   Reply With Quote
Old 01-18-2012, 09:08 PM   #8
dawny
Senior Member
 
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 247
Re: Dying of other cancer...

So sorry to hear about the passing of your friend Jackie, sending you my warmest wishes

Dawn
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lung nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 didn't work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
dawny is offline   Reply With Quote
Old 01-18-2012, 10:54 PM   #9
3twins
Senior Member
 
3twins's Avatar
 
Join Date: Jun 2010
Location: TN
Posts: 83
Re: Dying of other cancer...

Jackie,
I'm so sorry about your friend. Thank you for reminding us to remain vigilant. Hugs.
3twins
__________________
DX 5/17/10 IDC & DCIS
BMX 6/3/10-Stage 1, 0/2 nodes
ER+/PR-, Her2+
Chemo 7/8/10-10/21/10
FEC X 3, T X 3, Herceptin weekly for 9wks
Start Arimidex for 5 yrs-11/22/10
12/16/10 NED!!!!!
3twins is offline   Reply With Quote
Old 01-19-2012, 05:34 AM   #10
karen z
Senior Member
 
Join Date: Apr 2008
Posts: 1,476
Re: Dying of other cancer...

Dear Jackie,
I am very sorry to hear this news.
Take good care.
karen z
karen z is offline   Reply With Quote
Old 01-21-2012, 01:32 AM   #11
Cam
Member
 
Join Date: Jul 2011
Posts: 14
Re: Dying of other cancer...

Jackie, I'm so sorry to hear about the loss of your good friend.
Camille
__________________
Cam

6/00 DCIS left breast - lumpectectomy
LCIS both breasts
Evista 2001 thru 8/2010
8/10 diagnoised w/ Stage 1 invasive carinoma right breast
10/14/10 skin/nipple sparing double mastectomy with reconstruction
right breast - no carcinoma identified 3 axillary sentinal lymph nodes - no carcinoma in 2 right axillary sentinal lymph nodes
left breast LCIS no invasive carcinoma
ER/PR + HER2+ (HER2 gene found in a lymph node)
12/29/10 thru 3/18/11 - 12 weeks of Taxol/Herceptin - March 25th started 3 week Herceptin only treatment.
Right expander had to be removed before chemo due to infection. Replaced in June 2011. I had surgery on the 17th of November, replaced expanders with silicone implants and had my port removed.
Last Herceptin 12/2/11 YEA!!!
4/22/11 started Arimidex
6/15/11 started Boniva
Feb. 2012 started Wellbutrin for depression.
3/26/12 Surgery to try to fix reconstruction.
8/30/12 revision reconstruction surgery.
Cam is offline   Reply With Quote
Old 01-21-2012, 06:01 AM   #12
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,801
Re: Dying of other cancer...

Thank you all. Her memorial service is going to Feb. 4 in Tainan, Taiwan at her church. One of her former church members had moved from another town to take care of her 24 hours a day since October. She's the oldest child and her Mother has been treated for colon cancer for three years. Makes me wonder about the HNPCC http://ghr.nlm.nih.gov/condition/lyn...H0001895/drome connection...


Below is a link to information about Cervical cancer:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001895/
__________________
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

"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; 01-31-2012 at 04:22 PM..
Jackie07 is offline   Reply With Quote
Old 01-21-2012, 10:20 AM   #13
Mtngrl
Senior Member
 
Mtngrl's Avatar
 
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: Dying of other cancer...

I'm sorry, Jackie.

Prayers for you.
__________________
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
Mtngrl is offline   Reply With Quote
Old 01-21-2012, 01:03 PM   #14
BonnieR
Senior Member
 
BonnieR's Avatar
 
Join Date: Jun 2007
Posts: 2,210
Re: Dying of other cancer...

Jackie, thank you for sharing your sadness with us. And thank you for the reminder that there is alot of cancer out there. We are not immune from it. And sometimes the symptoms are not always clear. I had a friend complaining on intestinal problems. Too late, they discovered it was ovarian cancer, not intestinal.
So we need to be vigilant. And also honor those who are fighting other forms of this nasty disease.
Keep the faith
__________________
Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
BonnieR is offline   Reply With Quote
Old 01-21-2012, 07:19 PM   #15
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Dying of other cancer...

Jackie,
I was so sorry to read about your dear friend's passing, especially so quickly. She was lucky to have such a good friend in you. Do share more about her if you wish. There's nothing I love more than a compassionate human being who stops to tell, to listen, to care.
With love and understanding,
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.
KDR is offline   Reply With Quote
Old 01-22-2012, 04:27 AM   #16
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,801
Re: Dying of other cancer...

Thanks, Karen.

Name:  NTUB - Houtzu.jpg
Views: 445
Size:  3.6 KB

Professor Lucy Hou.

She had received the 'Best Teacher' award twice - one at the beginning of her teaching career, the other just one (or two) year ago.
__________________
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

"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; 01-22-2012 at 04:58 AM..
Jackie07 is offline   Reply With Quote
Old 01-22-2012, 04:30 AM   #17
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,801
Re: Dying of other cancer...

Top: Lucy - in bucket hat after the 1982 tournament. Three of the 8 girls pictured (including myself) have been diagnosed with cancer [1-30-2012 - just learned another teamate in the picture had had breast cancer surgery/treatment in 2006. So out of the 12 teammates of the 1982 team, there are 4 cancer incident. Only Houtzu (cervical cancer) did not survive...] I've survived two different types of cancer the past 21 1/2 years (probably would have had another one had I not gone through the prophylactic hysterectomy/oophorectomy - the surgeon said there was 'hyperplasia' already). Another teammate (in white jacket) also had a hysterectomy several years ago when ovarian cancer was found after her breast cancer treatment.
Neither of us three has ever gone through pregnancy (The three infertility treatments I received in the late 1990's only resulted in three uterine fibroids.)

Bottom: Lucy (standing in white shirt) in 1984 before heading for MIT where she received her Ph. D in biology in the late 80's.
Attached Thumbnails
Click image for larger version

Name:	NTUB - Women - 8 in V shape outdoor 20111230 008.jpg
Views:	173
Size:	201.6 KB
ID:	903   Click image for larger version

Name:	NTUB - Women - MM B Houtzu Wenhui in restaurant img062.jpg
Views:	168
Size:	216.3 KB
ID:	904  
__________________
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

"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; 01-30-2012 at 01:30 PM..
Jackie07 is offline   Reply With Quote
Old 01-22-2012, 05:44 AM   #18
Paula O
Senior Member
 
Paula O's Avatar
 
Join Date: Jul 2011
Posts: 954
Re: Dying of other cancer...

Jackie,
I'm really sorry about your loss of your dear friend Lucy. (((hugs))). She sounds like a very special lady.

Which one is you in the picture?

Paula
P.S. I want to be sure I am understanding you correctly. Am I correct that you are not advocating that folks here get total hysterectomies prophlactically because of breast cancer but rather your message is for everyone to follow up with genetic testing to see if we are also pre-disposed to also having other types of cancers and then follow through with surgery or careful observation if there is a high statistical chance of it occuring elsewhere? I have not done any genetic testing whatsoever. I know that my insurance would not cover the one that adresses my daughters' risks for breast cancer.
Paula O is offline   Reply With Quote
Old 01-22-2012, 06:47 AM   #19
karen z
Senior Member
 
Join Date: Apr 2008
Posts: 1,476
Re: Dying of other cancer...

Thank you Jackie.
karen z
karen z is offline   Reply With Quote
Old 01-22-2012, 05:22 PM   #20
Mtngrl
Senior Member
 
Mtngrl's Avatar
 
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: Dying of other cancer...

Jackie,

Thank you for sharing the pictures with us. I appreciate knowing about your friend Lucy, and knowing more about you. That's what friends do--it makes me feel closer to you.

I'm so sorry, still, for your loss.
__________________
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
Mtngrl is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 09:43 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2018, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter