 |
|
05-24-2013, 07:18 AM
|
#41
|
|
Senior Member
Join Date: Apr 2008
Posts: 1,477
|
Re: Not good news..
Thinking of you and hoping we will hear from you soon.
|
|
|
|
05-24-2013, 09:36 PM
|
#42
|
|
Senior Member
Join Date: Mar 2012
Location: New York, new york
Posts: 73
|
Re: Not good news..
Try perjeta and herceptin.....perhaps add taxol......your dog is adorable....stray strong. Eileen
__________________
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
|
|
|
|
|
05-27-2013, 11:27 AM
|
#43
|
|
Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
|
Re: Not good news..
thanks friends
Well i am writing to you from the hospital after I nearly suffocated after my first dose of navelbine +h. I was put on high O2. I have stopped oxigen now but I am very breathless when I have to move. cant walk much.
I have been suffering from spike in temperature for 6 weeks which makes my quality of life very poor.
I was not accepted on the trial around where i live and they took 5 weeks to look at my case and wasted my time.
Scan show progession to new places: neck and liver in 8 weeks.
I am a mess after navelbine chemo, my lung hurts and cant manage to get any sleep at the hospital 4 days. I have decided to go home tomorrow whatever.
I have won many many battles, endured many treatments. No one can say that I have not turned every stones and fighted every corners kicking and scratching. But I am now showing the white flag.
For the first time I am happy that I don't have a family, because thinking of not seeing my dog in the future is soooo painful already. do you know when I cough she comes and lick my neck she is amazing and so sweet. I have found her a lovely god mother who has a dog already and the dogs play so well together so I know she will be happy.
I know that I will not be accept in any trials in my state and chemo sent me to hospital. And cant travel any more for a trial anyway. If you have any idea let me know
not good news indeed
All love
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
|
|
|
|
|
05-27-2013, 01:18 PM
|
#44
|
|
Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
|
Re: Not good news..
Oh Beans,
This is not the news I was hoping for. I'm so sorry to hear how tough things have been, and still are for you. You certainly have fought the good fight...no doubt about that!
Do your docs have any new ideas? Or old ideas that still have a chance to slow that progression? My knowledge about lung mets wouldn't overflow a thimble...so I don't have any advice to give..but I know we have experts here who will chime in.
My area of expertise is sending love, prayers, healing energy...and cyber hugs. I'm flooding the space between you and me with all of those things my friend. I'll be praying especially hard for your comfort...and for a wisdom for you and your care team, as you plan your next steps.
Thanks for checking in...I've missed you!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
|
|
|
|
|
05-28-2013, 02:39 AM
|
#45
|
|
Senior Member
Join Date: Feb 2009
Posts: 1,526
|
Re: Not good news..
Hi Fob, I bumped up your post as I was really concerned I hadn't heard from you. So sorry to hear that you're not well and had such a bad reaction to navelbine and herceptin. What have the oncs said about it? Do you think you could have an underlying infection that they haven't managed to get under control and this is contributing to you being so unwell? Please think about staying a bit longer in hospital, I know its terrible as its so noisy but sounds as if you still need support. I would be worried about you at home struggling with your breathing and also having raised temperatures. If there's anything I can do please let me know.
Ellie
|
|
|
|
|
05-28-2013, 11:09 AM
|
#46
|
|
Senior Member
Join Date: Oct 2011
Location: British Columbia, Canada
Posts: 139
|
Re: Not good news..
I also hope that you stay in the hospital longer. Could your responses to the Navelbine be the mets getting attacked? Last year on my first treatment of Docetaxel I ended up in the hospital for 3 days. The dose was reduced for the next treatment, Neupogen was added, and I didn't have such strong reactions. The TMs also went down. Do they also give you a slower infusion so it isn't so hard on your system?
Maybe your doctor could reduce the dose so it doesn't hit your body so hard. I still think that your being in the hospital is the best place to be. Please don't give up.
__________________
Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
|
|
|
|
|
05-28-2013, 06:21 PM
|
#47
|
|
Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
|
Re: Not good news..
FOB,
You are admired for having the determination of spirit to post so truthfully your present thoughts and your condition in behalf of all who are concerned about you and the long and difficult struggle you are having. Choices are so hard to find, and to make.
It says so much that you have found someone you trust to be there in difficult circumstances, to watch over you and your precious furry friend, who is loyal and comforting to you. I hope that you will find the peace and comfort that you so deserve for all that you try to be.
As ever,
AlaskaAngel
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
|
|
|
|
|
05-28-2013, 07:25 PM
|
#48
|
|
Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
|
Re: Not good news..
I'm sorry that you're having such a battle at the moment FOB. I am thinking of you and hope that there is some improvement for you very soon. I'm glad that you have a good friend who can care for your lovely wee dog.....
Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
|
|
|
|
|
05-28-2013, 07:38 PM
|
#49
|
|
Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
|
Re: Not good news..
Dear Beans,
In one of your weakest and darkest moments you mustered up the strength to log on and let us know about your experience with Herceptin and Navelbine. We are privileged to be your confidante and ache for you and the suffering you are feeling.
May you soon feel the peace from decisions made from the wisdom of your experience. May you continue to feel devotion and love from your beautiful and devote puppy who clearly adores you. When you do arrive home, I pray the you will find a quiet comfortable place and restful sleep.
Please surround yourself with support. Say yes to help that is offered. Receive the love from your friends and family.
Love and Hugs,
Kim (from CT)
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
|
|
|
|
|
05-28-2013, 08:15 PM
|
#50
|
|
Senior Member
Join Date: Dec 2011
Posts: 585
|
Re: Not good news..
Oh Beans...I hate to think of you suffering so. I hope you stay in the hospital as long as needed so they can help with these side effects. Im sending lots of love, positive energy and prayers your way.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
|
|
|
|
|
05-28-2013, 08:16 PM
|
#51
|
|
Senior Member
Join Date: Dec 2009
Posts: 562
|
Re: Not good news..
I'm really sorry to hear this too.
Reading your sig though, it looks like you still have a lot of traditional treatments left to you. Does it have to be a trial? Some of the regular ones work for a while at least, and they won't all give you the side effects that navelbine has. Navelbine can be a rough one so don't give up. And, if they can give it again without endangering you, it did shrink my mets a bit but they did put me in their special room that have for risky infusions. Maybe a smaller dose is in order? It's worth a question.
I have had a lot of chemos you haven't yet so there are options for you.
I'm sorry you are suffering so and sounding depressed. I've been there. I hope that when you get home, you'll feel better, your dogs will cheer you up and your doctor will have something more workable for you.
*hugs*
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
|
|
|
|
|
05-28-2013, 09:29 PM
|
#52
|
|
Senior Member
Join Date: Oct 2012
Posts: 645
|
Re: Not good news..
Dear FOB,
To echo everyone else, really sorry to hear this news but you need to get your strength back to fight another day. Please listen to those wiser than me regarding different treatments.
I feel you want to get home to be with your pup - I can definitely understand, having had to put mine down just a couple of months ago. Glad you found a godmother
Best
Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
|
|
|
|
|
05-28-2013, 09:35 PM
|
#53
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Re: Not good news..
Dear K -
So sorry to hear that the chest mets are giving you such a problem that you need to be in the hospital. "Navy beans" is an interesting drug and works differently than what you have had, so seemed like a reasonable choice.
I don't think anyone else here has the accumen for research that you put into your treatments, so I feel you probably made a good choice based on information.
Sending prayers the cause of your fever can be found and that you can get back to beating back the cancer.
We all feel llike showing the white flag at times, and you are tired. With some rest may come perspective. It is never a bad idea to make contingency plans, but you will have your dog a while longer.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
|
|
|
|
| Thread Tools |
|
|
| Display Modes |
 Linear Mode
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 07:05 PM.
|
