Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Thread Tools Display Modes
Old 12-15-2015, 01:46 PM   #1
Senior Member
Join Date: Apr 2011
Posts: 403
Approaching 5 yr cancerversary but running out of options

I was admitted to hospital due to severe shortness of breath. After 1.5 liter fluid was drained from my right lung, my oxygen level still didn't come up. The oncologist who was covering for my Onco came this morning to the hospital. He said more drainage won't solve the problem because the problems are in my lungs. The nodules that have been progressing are make me breathless. He also said since I have been on so many chemos already, revisiting some of them won't do me any good as I progressed on them and although they were to treat skin mets. If we don't find the right drug, he is giving me a few more months.

The news was very shocking! I went from climbing mountain in Alaska in May, traveling 10 hrs to China in November to being confined all of a sudden to oxygen machine! I am very scared! I'm hoping my doctor will let me revisit some of the old chemo I used to buy m some time! But I can't even function without an oxygen machine does this mean the end of world for me?

We have just lost Karen who is as just texting me in November, encouraging me and all of a sudden she is no longer here. I still have her messages on my phone. It's just so unreal!

Should I fight should I just accept the fact and live the rest of my days comfortably? I feel bad for my daughter. She will be fine I know but I'll miss her very much. What shall I do? Going to chemo with my oxygen tank is it possible?
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
yanyan is offline   Reply With Quote
Old 12-15-2015, 02:25 PM   #2
Senior Member
Join Date: Oct 2014
Posts: 293
Re: Approaching 5 yr cancerversary but running out of options

I'm so sorry you're having to deal with this. The questions you ask are ones only you can answer. If it were me, I'd want as much information about my odds with and without treatment. If treatment only gave me weeks or even months, would it be worth it if I were that much more sick because of the drugs? You just have to weigh the pros and cons and get a second and maybe third opinion, then decide which path gives you peace. Cancer is a horrible disease and I wish none of us had to deal with it. I'll be praying for you. sending cyber hugs
Lucy is offline   Reply With Quote
Old 12-15-2015, 03:45 PM   #3
tricia keegan
Senior Member
tricia keegan's Avatar
Join Date: Nov 2005
Location: Ireland
Posts: 3,460
Re: Approaching 5 yr cancerversary but running out of options

My heart goes out to you and I'm so sorry you face this, I'd echo Lucy's words to you and know others with more experience will respond with more insight and options for you but just wanted you to know I read your post and care.
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
tricia keegan is offline   Reply With Quote
Old 12-15-2015, 04:43 PM   #4
Senior Member
Join Date: Mar 2011
Posts: 70
Re: Approaching 5 yr cancerversary but running out of options

I am so sorry you are going thru this. Hoping and praying they come up with a chemo. Hugs.
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
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
DianaMK is offline   Reply With Quote
Old 12-15-2015, 04:50 PM   #5
Senior Member
forher's Avatar
Join Date: Nov 2014
Posts: 83
Re: Approaching 5 yr cancerversary but running out of options

I can imagine this being a scary time. I hate that you're facing progression. I have little input but I just wanted to reply to your post.
Ok, so have you tried xeloda?
Now that I read your signature more carefully I see that you have.
What about Doxil?
forher is offline   Reply With Quote
Old 12-15-2015, 05:00 PM   #6
Senior Member
MaineRottweilers's Avatar
Join Date: May 2013
Posts: 568
Re: Approaching 5 yr cancerversary but running out of options


What a terrifying decision to be forced to make. I've always said, I would never do chemo again but each time I have been forced to make the choice between choosing a new chemo or going quietly, without a fight, I choose chemo. I've not yet been ready to die. I imagine that one day, I will be ready and when I am, the choice will be easy, right? Only I will know, as only you can know...are you ready to give in?

I pray your choice is clear to you and that you and your family have the strength and grace to endure whatever lies ahead. I am praying for your miracle just as surely as I am praying for my own. You are on my mind.
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

MaineRottweilers is offline   Reply With Quote
Old 12-15-2015, 05:20 PM   #7
Senior Member
jra40's Avatar
Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
Re: Approaching 5 yr cancerversary but running out of options

I'm so sorry to read your post Yanyan. Praying for you - my opinion is fight, fight, fight!!!
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
jra40 is offline   Reply With Quote
Old 12-15-2015, 08:25 PM   #8
Senior Member
Join Date: Mar 2012
Location: New York, new york
Posts: 73
Re: Approaching 5 yr cancerversary but running out of options

Karen had a drain in each lung and was still taking chemo..herceptin perjeta and abraxane.
I would still take chemo and supplements. .
Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
Emy is offline   Reply With Quote
Old 12-16-2015, 12:06 AM   #9
Senior Member
Pamelamary's Avatar
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 483
Re: Approaching 5 yr cancerversary but running out of options

No advice either, but our hearts are with you now..... Pam
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
Pamelamary is offline   Reply With Quote
Old 12-16-2015, 03:11 AM   #10
Senior Member
michka's Avatar
Join Date: Feb 2007
Location: Paris, France
Posts: 858
Re: Approaching 5 yr cancerversary but running out of options

YanYan I am sorry to read your are facing progression. I do not see why you cannot go back to chemo, even one you already had and that worked for everything except for your skin. You have to take care of the lungs now so can you go back to a taxane with H and P? Tdm1? I hope your oncs come up with a suggestion if they understand you are ready to fight. Stay strong. You are the one who must decide.
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
michka is offline   Reply With Quote
Old 12-16-2015, 11:49 AM   #11
Senior Member
Join Date: Oct 2014
Posts: 49
Re: Approaching 5 yr cancerversary but running out of options

Hi Yanyan,

Sorry to hear about this. You are in my prayers. Please be strong. There are other options from what I heard Doxil with hyperthermia is being considered aggressively at many centers. If you can get your last biopsy checked for androgen receptors then you can try enzalutamide which is being pursued at UCSF.
supportwife is offline   Reply With Quote
Old 12-16-2015, 01:40 PM   #12
Senior Member
Join Date: May 2014
Location: San Diego
Posts: 411
Re: Approaching 5 yr cancerversary but running out of options


I'm so sorry to hear about your current situation. I truly wish there was something I could say or do to help. Should you continue to fight? That is a question that only you can answer. In my opinion, there is no right or wrong answer as long as it is your decision. I feel very differently about this than my husband does. However, I don't try to convince him to think as I do and vise versa.

I will keep you in my prayers and hope that you find the answers you seek.

Take care,
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
thinkpositive is offline   Reply With Quote
Old 12-17-2015, 05:05 PM   #13
suzan w
Senior Member
suzan w's Avatar
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
Re: Approaching 5 yr cancerversary but running out of options

Sending you cyber hugs...it's all I can do!!! We all are together in this most intense fight for our lives...Xxoo
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
suzan w is offline   Reply With Quote
Old 12-17-2015, 06:56 PM   #14
Senior Member
europa's Avatar
Join Date: Jan 2012
Posts: 360
Re: Approaching 5 yr cancerversary but running out of options

Yanyan, I don't have any advice. This is such a personal choice. I don't know if I could repeatedly throw myself into chemo over and over. There would definitely be a point where I would want to live and make memories with my families instead of wasting away in an infusion room for hours. But again, that is my opinion on how my life. You have to decide what you need to do for your life and family. You are in my prayers and I am sending you white healing light.
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


europa is offline   Reply With Quote
Old 12-17-2015, 07:32 PM   #15
Senior Member
Join Date: Jul 2013
Posts: 100
Re: Approaching 5 yr cancerversary but running out of options

I too have nothing to advise except weigh your options and choose what is right for you. I will pray that something will push out the envelope of your time on earth. We are all caring for you.
Pat94 is offline   Reply With Quote
Old 12-17-2015, 11:39 PM   #16
Senior Member
StephN's Avatar
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Approaching 5 yr cancerversary but running out of options

Sorry for your recent news. Hopefully you can get off the oxygen enough so that if you need it you can have one of those small portable tanks that people take out when they shop, eat out or whatever.

If you are not ready to stop treatment have a frank talk with your doctor and ask him again for another drug.
"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.

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.
StephN is offline   Reply With Quote
Old 12-18-2015, 11:20 PM   #17
Senior Member
IrvineFriend's Avatar
Join Date: Jan 2013
Location: Irvine, CA (Southern CA)
Posts: 414
Re: Approaching 5 yr cancerversary but running out of options

I'm so sorry for your recent news and progression. Like many others, I can't offer any advice because I think it's so personal. I know I told myself after my treatment that I could not/ would not do it again, but if I'm true to myself, I think I would choose to fight. I see that you're still quite young and there are miracles and people living against the odds. I guess I'm saying there is always hope if you have a doc that is truly an advocate for your wishes. My only advise would be to find a quiet place and maybe do some meditation via utube and find your answer. I will be following you on your progress and I have have prayers and well wishes for you daily.
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
IrvineFriend is offline   Reply With Quote
Old 12-20-2015, 07:45 AM   #18
Senior Member
Catherine's Avatar
Join Date: Dec 2006
Location: Oregon
Posts: 713
Re: Approaching 5 yr cancerversary but running out of options

Dear Yanyan,
I am looking out my window and looking up in the blue sky for answers. I agree , fight with all your might. By now you probably are confiding in your family and your closest friends that you can see and trust. The rest of us are on the site to help advise, consult and support with all of our might. Sending love and prayers just for you.

Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
Catherine is offline   Reply With Quote
Old 12-20-2015, 09:27 AM   #19
Carol Ann
Senior Member
Join Date: Dec 2013
Posts: 1,045
Re: Approaching 5 yr cancerversary but running out of options

I am here with everyone else supporting you and whatever decision you decide is right for you.

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. :)
Carol Ann is offline   Reply With Quote
Old 12-27-2015, 07:19 AM   #20
Join Date: Jan 2011
Location: Colorado Springs, Colorado
Posts: 18
Re: Approaching 5 yr cancerversary but running out of options

Dear Yanyan,
I was on oxygen for 6 weeks Spring 2015, 24/7, 10 liters (highest dose possible). I questioned whether it was time to gracefully surrender, but I decided to I wanted to live. I started Abraxane (along with Herceptin & Perjeta). I was off oxygen by week 7. It's now 12/27/15 & my lungs need attention. I'm considering hyperthermia in Germany. Please let us know how your immunotherapy in China goes.
2005: DCIS Stage 0, Right breast, High grade, lumpectomy, radiation, no mastectomy 2009: Diagnosed Her2 new+++, Herceptin only (toxic reaction to Taxotere). Great response to Herceptin 2011 lung mets 2012 tried several targeted chemos- none worked
2013 TDM1- good job resolving some lung mets 2014 Took a treatment break, Oct. Allergic reaction to Doxil 2015 Herceptin & Perjeta
laura4252 is offline   Reply With Quote

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 02:11 AM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2021, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter