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Old 08-21-2015, 07:37 AM   #1
KatherineM
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Join Date: May 2014
Posts: 94
lung mets, CT scan, and going off chemo

Hello, there! Been a long time since I posted. Was diagnosed with lung mets in April and been on taxol, Herceptin, and Perjeta until last week. Got scanned and found that mets had shrunk by 30-50%. Good news! Here's my question:
My onc says I can go off taxol, which I am eager to do (I'll stay on H&P indefinitely.) But she said that they don't really know if it's the taxol or the H&P, or the combo, that has reduced the nodes. So, what's the logic? What if it was the taxol, and I progress on H&P? My sense is that she wouldn't put me back on weekly taxol, which has been pretty easy compared to taxotere every three weeks, but would go to kadcyla.

Is it just me, or does Stage 4 treatment feel loosey-goosey? My sense is that there's no set plan, just trial and error options. They scan me every 3 months to see if there's progression, and we take it from there. I'm also nervous about so much radiation from CT scans.

Have any of you been taken off chemo and been on H&P for prolonged lengths of time? I'd be grateful to benefit from hearing of your experiences.

Thanks so much!

Cheers,

Katherine
__________________
_______________________
Diagnosed 3/26/14 BC Stage 3a ER neg PR neg HER-2+
5 cm tumor in left breast, needle node biopsy positive
Started TCHP 4/25/14 - 6 rounds
Oncologist can no longer feel tumor, after 4th round
Chemo shrunk tumor to less than a mm
Lumpectomy and axillary node dissection 9/3/14
Radiation for 5 weeks, with boost
Herceptin until 4/3/15
CT Scan on 4/27 shows lung mets (lots of little ones on both sides, largest 1.6 cm) STAGE IV
Lung biopsy shows still HER2+++/ER-/PR-
Taxol with Herceptin and Perjeta May, June, July 2015
Lung mets reduced by 50%
Just H&P through Fall 2015
11/15 Progression
Back on Taxol with H&P January 2016
THP no longer working March 2016
Start Kadcyla 3/16 After first treatment, experienced low platelets, tongue turned black, had to have transfusion. Dry cough and shortness of breath for first week, improves over second and third.
4/16 Platelet transfusion after second treatment, blood blisters in mouth. Allergic reaction to platelets.
6/16 Kadcyla not working. Progression to liver, though lung mets smaller.
7/16 Start Xeloda and Tykerb.
11/16 Port infected. Taken out. Have to go off chemo.
1/17 Back on Xeloda and Tykerb
5/17 Tykerb and Herceptin
11/17 Navelbine and Herceptin
12/17 Progression in lungs, liver reevaluated, no progression
1/18 Haloven and Herceptin
2/18 Sloan Kettering consultation
3/18 Brain mets, 16 lesions, largest 16mm
3/18 Cyberknife to 16mm lesion
3/18 Haloven and Tykerb added
4/18 Scan shows all lesions significantly smaller! Some almost gone. Radiation oncologist says she's never seen anything like it
7/18 Brain scan shows progression, w/ with one new lesion. Don't want to do WBR. Will try for tucatinib.
8.15.18 Start Keytruda
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Old 08-21-2015, 08:07 AM   #2
Juls
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Posts: 563
Re: lung mets, CT scan, and going off chemo

Hi Katherine
I have been in a herceptin and perjeta trial since May 13. 1st 8 cycles with docetaxol, last 32 cycles H & P only. At the moment doing well on it! I find it quite easy to take. It is the perjeta that is the trial drug and if anything changes it is no longer given. This is a worry especially as my health board has not approved Kadcycla (cost basis). Not sure if you can ask for it but it is not automatically considered here. Like yourself I find this odd - is there a plan! Other problem is that I find Oncologist a bit negative & you can't choose who you see here. Don't get me wrong. Onc is nice but you never get "doing really well" only "your fine" etc. Sometimes a little more positivity goes a long way.
Regards Juls
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Old 08-21-2015, 09:11 AM   #3
SoCalGal
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Location: LA LA Land
Posts: 1,606
Re: lung mets, CT scan, and going off chemo

Stage 4 is VERY loosey-goosey! What I've learned is that there is no rhyme or reason, and that staying on targeted therapy, no chemo, has (more or less) worked for me. You can take a break from the chemo, and always add it back in if your markers jump or your scans look bad. At that time you can decide if you want to try Kadcyla, which makes sense to try. I've spread out my scans, too. Going 4 months instead of 3 is reasonable, unless you have a clear reason to scan at 3. Then you can move it to 5 months or so. I'm stage 4, not ned, for the past 8 years. Not sure my own next plan, I'm a bit overdue for my PET/ct
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 08-22-2015, 07:26 AM   #4
Mtngrl
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Location: Denver, CO
Posts: 1,427
Re: lung mets, CT scan, and going off chemo

It's my impression that we're all guinea pigs in a new environment. Because there are now targeted treatments for HER2 bc many of us are living a long time (or at least much longer than before) after a stage iv diagnosis. But what to do and how to keep the magic coming is, indeed, "loosy goosy."

Everyone's body is different; therefore, since cancer is a disorder of a person's own cells, and not a foreign invader, everyone's cancer is different. Eventually, all cancer treatment will be customized to each individual. Right now, we have studies based on grouping cohorts of people that researchers hope are enough alike to make the results meaningful, but that's a bit of a crapshoot.

I've known a number of people who have had very good results with just H&P (and hormone therapy, if the cancer is hormone-positive) with few side effects. You might as well give it a try. You might get a number of years out of that, and if you do get progression maybe there will be another new treatment to try by then.

Stay in the now.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 08-22-2015, 02:34 PM   #5
Kim in CA
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Location: California's Gold Country
Posts: 404
Re: lung mets, CT scan, and going off chemo

Hi Katherine,

I've been on Herceptin and Perjeta alone for over 2 years now. Prior to that, I had been maintaining on Herceptin and Femara for many, many years. I was doing so well in fact, we thought maybe I was cured, and tried going off the Herceptin. My liver mets came back big time within a year. We started me back on Herceptin, but things were not improving fast enough, so added Taxotere, and Perjeta. As you can see by my signature, the Taxotere and Herceptin had gotten me to NED once before, so It seemed like the best choice. However, the Taxotere side effects were once again pretty bad, so we stopped, and I've been on just the H&P and Femara ever since.

My tumor markers have been slightly elevated in recent months, but I don't have any symptoms, so we just keep on this path, until something changes.

I asked my doctor a few months ago about going off of the aromatase inhibitor (Femara) that I've been on since 2002, because I don't like how it's ageing me, but she said "I'm afraid to rock the boat". So you see, as Amy said, we really are guinea pigs, at this stage.

I find the Herceptin and Perjeta are quite easy to tolerate, after your body has time to adjust. In the beginning the Perjeta caused diarrhea that was very unpredictable, so I never ventured far from the potty!

I still have to watch what I eat, but all in all, quite do-able.
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 08-22-2015, 02:48 PM   #6
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: lung mets, CT scan, and going off chemo

Kim--

Thanks for chiming in! You appear to be one of the forerunners of our new club--long-term stable/NED Stage IV.

Love your avatar. I think I need to do some horseback riding when I get back to Colorado.

Perjeta seems to be a huge blessing. Right now I'm planning to get to NED on Abraxane, Perjeta, and Herceptin, and then stay on just H&P as maintenance.

I'm working on a PhD. I started after I was diagnosed. I plan to finish, and graduate. There will definitely be a press release.

Wish me luck!
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 08-22-2015, 04:26 PM   #7
yanyan
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Posts: 403
Re: lung mets, CT scan, and going off chemo

My situation is a bit different. I had been in herceptin and perjeta for almost a year although I have never been NED. My problem was skin mets but they didn't progress until just recently it has gone to my lungs on top of my skin. My doctor put me on halaven but stopped my perjeta and herceptin. I'm on halaven only. My Onco said
Since I progressed on h&p, out means they werent working for me. It would only do me harm than good if I stay on them. Although I had thought we her2 would be on some type of target drug forever. Maybe he meant to add them back on once I'm stable. So like others have mentioned, if you progress on h&p hopefully you don't, then chemo will be added back. But you can't be on chemo forever, so you definitely need some break once you are stable!
__________________
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
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Old 08-23-2015, 11:19 AM   #8
Juls
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Join Date: Mar 2014
Location: UK
Posts: 563
Re: lung mets, CT scan, and going off chemo

Hi Yanyan
Just reading your post about progression and H & P "no longer working". A friend was told the same a few months ago and H/ P was stopped. In the past few weeks Herceptin given again!
I don't know if this is normal procedure (if such a thing!) One minute you are told "no longer working" and drug stopped, the next you can have it again! If not working
for you , why is it prescribed again? Does having a break make a difference?
Juls
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Old 08-23-2015, 11:37 AM   #9
Juls
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Posts: 563
Re: lung mets, CT scan, and going off chemo

Kim
Just read your post. I have been on Herceptin. Perjeta for 2+ years and Femara for about 20 months. Doing well on them but in last few months found that Femara making me really stiff. When I mentioned possibly changing to another AI, I was told the same "I don't want you rocking the boat". So still on Femara but now taking Vit D and glucosamine! ( Oxford journal article on AI's & Arthralgia recommended Vit D especially if on Femara/Letrazole!)
Juls
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Old 08-24-2015, 10:39 PM   #10
Kim in CA
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Thumbs up Re: lung mets, CT scan, and going off chemo

Amy,
I sure like your getting NED plan, and think the Abraxane along with the one, two punch of Herceptin and Perjeta will do the job!

And we are all going to celebrate with you when you get that PhD!

Kim
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Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 08-24-2015, 10:44 PM   #11
Kim in CA
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Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
Re: lung mets, CT scan, and going off chemo

Hi Juls,

I too have been dealing with the arthralgia for a long, long time, and find that along with lots of Vitamin D. exercise, exercise, exercise, is what helps me!

When I slow down, it's too hard to get going again...LOL!

Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
Kim in CA is offline   Reply With Quote
Old 08-25-2015, 03:10 AM   #12
Juls
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Join Date: Mar 2014
Location: UK
Posts: 563
Re: lung mets, CT scan, and going off chemo

Hi Kim
I know that feeling well! Somedays I am like a 90 yr old getting out a chair!! Have just started taking Vit. D so hopefully it will help.
Juls
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Old 08-26-2015, 08:39 PM   #13
KathyT
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Join Date: Mar 2014
Location: Glendale, AZ
Posts: 210
Re: lung mets, CT scan, and going off chemo

I just want to thank all of you ladies who are cancer survivors for many years and still come on this site to help and give advice. I am fairly new here, diagnosed 2/2014 and hope in a few years I will still be checking this site and reaching out to others in need. You are all amazing!!
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Kathy
38 years old!

January 17th 2014-mammo, ultrasound, biopsy
January 20th 2014- diagnosed, ER/PR+, Her2+++, Stage 2A
January 21st 2014-MRI, right breast only plus lymph nodes
January 23rd 2014- Pet scan-2 cm tumor, 3 lymph nodes
February 4th 2014-port insertion
February 12th 2014-first chemo treatment(TCHP x6 cycles)
May 28th 2014-LAST chemo treatment!!
July 10th 2014-double mastectomy
July 29th 2014-start radiation(30)
Sept. 11th 2014last radiation treatment!!!
November 12 2014-started Tamoxifen
January 20 2015-reconstruction begins, lat flap
February 4 2015-last Herceptin treatment!!
April 24, 2015- pet scan-NED!!
June 3 2015- exchange surgery, port removed!!
September 8 2015-hysterectomy/oophorectomy
September 15 2015-Revision of lat flap reconstruction
December 23 2015-nipple reconstruction
May 9th 2016-Mets to pituitary gland, liver and C7 vertebrae
May 10th-port put back in:(
May 17th- biopsy of mass on back
May 19th-started Herceptin/Perjeta
May 20th-5 treatments Cyberknife to pituitary gland tumor
June 9th-Started THP (will have 6 cycles)
August 17th-MRI of brain, significant reduction in tumor
😃, repeat MRI in 3 months. Received first Zometa
infusion.
June 24th 2019- Thoracic spine Mets, leptomeningeal Mets , 10 radiation treatments
Aug 1st- Ommaya Reservoir implanted
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Old 08-27-2015, 02:55 AM   #14
reets
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Join Date: Feb 2015
Posts: 2
Re: lung mets, CT scan, and going off chemo

Kim in CA- I live in FR so the protocols are different but I always thought that Taxotere.H & P are only given 1st line. How did you get it after Xeloda?
Also, with being NED, what does it mean with CA15-3 markers elevated still? Have you been given a PET scan to confirm?
I am on Kadcyla now and my markers have been a bit of a yo-yo.
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Old 08-28-2015, 09:09 AM   #15
Kim in CA
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Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
Re: lung mets, CT scan, and going off chemo

Hi reets

Warning, this is a long post!

You are correct, the protocol for Taxotere, H & P is for 1st line treatment.

In my post above, I actually mis-stated the sequence of events when I recurred (chemo brain I guess) Anyway, my Doc put me back on the Herceptin first, when that wasn't working fast enough, we added in the Taxotere, and when I could no longer tolerate the Taxotere, we switched to Perjeta. My Insurance (Blue Shield) denied the Perjeta because I have been heavily treated before, so I was able to get it through Genentech's patient access program. I had only been on the Perjeta and Herceptin a short time, when my husband and I decided to switch health plans. I interviewed a doctor at Kaiser Permanente, before we made the switch, and she said I would have no problem getting the Perjeta through them, if that was what was working for me.
So we made the switch to Kaiser, and I have been on the Herceptin & Perjeta ever since.

Regarding tumor markers. I know from my own past experience that PET scans don't show anything when my tumor markers are only slightly elevated. It is not until they start approaching the 100's range that anything will show up. Because I have had so many scans during the course of my disease, I have made the decision not to do any more scans then absolutely necessary. My markers have always been a reliable indicator for me, so my doctor has agreed that we will watch them and look for a steady upward trend before doing more scans. Right now they keep fluctuating from the mid to high 40's. Another interesting thing is that at my old oncology center, the reference range for normal CA15-3 was 0 to 31. At Kaiser their reference range is 0 to 39.

Before this last recurrence my markers stayed consistently in the 20's. Since I have been at Kaiser, the lowest my markers have ever been is 37. My doctor at my old oncology center also used the Her2 Serum test to monitor things, but Kaiser does not use that test. I'm thinking that if my markers do start to climb steadily upward, I may go to an outside lab to get the Her2 Serum test run. In my case, it was actually more sensitive than the CA15-3, and was the first to rise when I had my recurrence.

So there you have it, no easy answers here, as we are all so different.
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
Kim in CA is offline   Reply With Quote
Old 08-28-2015, 01:50 PM   #16
reets
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Join Date: Feb 2015
Posts: 2
Re: lung mets, CT scan, and going off chemo

Thanks so much for the very informative response. Yes we are all different but it can be comforting to compare stats and have numbers that establish a benchmark to make treatment decisions under different protocols.
Good to know that the normal ranges for CA15-3 can vary so much. In FR, it is <25 I went down to 22 and it's inched up to 27 over the last three sessions (9 weeks). Perhaps that's why my Onc did not seem worried.
I will ask next time about the HER2 serum test if it may be more accurate; not sure if I have taken this.
I will also look into the Genetech patient access program to see if Perjeta is available internationally. They also produce Kadcyla in the US and I believe, is owned by Roche Pharmaceuticals. Perjeta is used here with Herciptin but ONLY 1st line. The combo seems more effective so I want to know future options & if this access program can help.
Continued NED for you!!
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