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Old 02-25-2020, 10:22 AM   #1
SoCalGal
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Thumbs up ENHERTU aka DS8401A

Good morning,
In October 2019, I applied to join a phase 1 clinical trial at UCLA of DS8401a w nivolumab for her2+ MBC (Enhertu/Opdivo). Clinical trials are arduous to join. There are so many hoops, so many scans, so much waiting and so many grey zones. Maybe that's another post. Anyhoooo, many scans later, along with 3 more brain mets that needed zapping before they'd accept me, I began treatment on 12/26/19.

The only reason I applied for this trial was for the DS8201A - I did not care about the Nivolumab. Literally the same day I was officially enrolled in the trial, the FDA announced approval of DS8401A, AKA ENHERTU. I felt like someone had run over me in their car. I right away asked for this, but it was not yet available--no one had it on their shelves, and any trial drug was assigned to a trial patient. So I had no choice but to go forward with the clinical trial. I had been washed out since OCTOBER and needed to get treatment or it would be too late.

Side effects have been very hard on me. I've never been easy with chemo, and the nausea was brutal and lasting 14+ days. Still, I went ahead on cycles 2 & 3 and then had the required scans at 6 weeks. The good news is I've had improvement, and my brain MRI was also very good. I could tell after the second cycle that a couple palpable nodes were melted gone. Also my markers had dropped. This is a very effective drug.

After a conversation with my son, who said “I love you mom and will support whatever you decide, but wtf is up with this trial drug - are you just supposed to be sick all the fucking time? QOL was your main goal mom. You should be out dancing" I realized I've got to do something that allows me SOME qol. I don't expect to have energy to dance, but I've got to be able to have a reasonable QOL. That's how I made the decision to go single agent, more flexibility, and more control, and back with my home team of nearly 13 years that I am MBC.

In my effort to take back my life, and get SOME QOL on this regime, I've decided to leave the trial, and return to my local oncologist and continue on single agent Enhertu. I can see from the Enhertu Facebook group that the single agent brings plenty of nausea, so I am not expecting dramatic results, but what I am expecting is small increments of being easier.

Without going in to a blow by blow, I've had to kick and scream for support meds, with everything having to be approved by the sponsor--meantime, they are all living their normal lives, I am at home under the covers, in bed, crying sick. Like having the stomach flu for two plus weeks every cycle.

Plans for this ENHERTU only cycle: I'm going to try VARUBI, a pill taken before treatment and supposed to last 21 days for anti-nausea. I will still have dex and Aloxi as premeds. AND I will stay on oral dexamethasone for several days post treatment to try to better manage nausea, and increase QOL.

The infusion itself is half hour for premeds, wait half hour and then 90 minutes for Enhertu. On the clinical trial, I had to stay the entire day; from 8 until 6 for final labs and wait on results. For my safety but what a long, exhausting day ending with an hour drive in rush hour. UGH.

My biggest cancer symptom is my right quad to the knee being very numb, feeling like it's asleep, bottom of my right foot, too. And right pelvis also numb although it's not constantly annoying to me like my leg/foot. The shooting pains, fire-ants feeling has resolved, and everyone is pretty sure the is a result of L1 which is filled with cancer and also has some tumor into my CNS at that level.

I still do not understand how LMD comes into play--the trial doctor had to really fight for my inclusion, it came down to an amplified MRI to show the LMD was contained to a certain interior level in my cord, and somehow that was deemed acceptable. So far, no doctor has been able to explain the LMD (leptomeningeal disease) in a way that I can grasp. Last June I was told 6 mos. Now I've realized that no doctor really knows what they are talking about, I'm not presenting with typical LMD, don't know what's going on anymore and it's unnerving. And quite frankly very weird. The trial doc thinks I'm nuts for leaving a combo that is working, but she gets to go home every night and be a mom and wife and I stay in every night FEELING NAUSEOUS, WEAK and SICK.

So I am taking back my life, and surely don't want to waste what is left of it so wiped by chemo all the time. I'm back in day by day and most days moment by moment. There are others on this ENHERTU regime who've been on for over a year, one woman for nearly 2 years. And now a handful of us just getting started.

I am reminded of my mom's words while growing up, "Flori, don't write the ending". Hope everyone reading this is doing well, or as I like to say, "good enough". Sending much love,
Flori
__________________
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 02-25-2020, 01:04 PM   #2
donocco
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Re: ENHERTU aka DS8401A

Flori

Glad to hear the good part of the news. Im going by memory but Im pretty sure Varubi works like Emend (Aprepitant) on the Substance P/Neurokinin receptors and may well offer anti-nausea relief beyond Aloxi, that works on Serotonin receptors.

For my own curiosity Ill see what Enhertu is. The Her part of Enhertu makes me think it is a Herceptin like drug. Will find out. Good luck with the treatment.

Paul
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Old 02-26-2020, 03:59 AM   #3
Lucy
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Re: ENHERTU aka DS8401A

Flori,

You've been on my mind a lot lately so I'm glad to get this update from you.

It sounds like you have a great support system with you son and it sounds like you're being your best advocate, which is all good. And I'm also glad you're not writing the ending.

These are all positive things in not the most positive situation. I hope the drugs continue to melt away the cancer spots and that your quality of life improves dramatically.

Thinking only good thoughts and sending the best of vibes your way. Please keep us posted as you can.

Hugs
L
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Old 02-26-2020, 08:19 AM   #4
smim
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Re: ENHERTU aka DS8401A

Hi Flori,
I'm new on the MBC her2+ path, since november last year, and still working my first line of treatment since re-staging. Just wanted to say that enhertu was specifically mentioned by my oncologist as something really hopeful during my last visit.
He referred to a recent (december 2019) publication in the New England Journal of Medicine "Trastuzumab Deruxtecan in Previously Treated HER2-Positive Breast Cancer" by Modi et al.
I really hope it works well for you!
greetings, smim
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Old 02-26-2020, 05:10 PM   #5
Kim in CA
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Re: ENHERTU aka DS8401A

Oh Flori,
So glad you checked in. We have all been thinking and worrying about you!
You are such an amazing woman! My Onc tells me Enhertu will be my next chemo too. I wonder if it is easier on the platelets than Kadcyla, as that has been my main issue.

Sending you BIG Hugs!
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...
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Old 02-27-2020, 12:03 AM   #6
Pamelamary
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Re: ENHERTU aka DS8401A

Glad to hear your news, Flori - sounds as if you have been doing it tough, so I hope the new regime gives better QOL.
Best wishes.... Pam
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Old 02-29-2020, 11:13 AM   #7
jaykay
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Re: ENHERTU aka DS8401A

So glad to hear from you, Flori! Your strength continues to amaze me and I hope the new regimen(s) provide you with a better qol. You rock!

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!
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Old 03-02-2020, 07:14 PM   #8
Bunty
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Re: ENHERTU aka DS8401A

Flori, it's so good to hear from you. It sounds like you've been to hell and are heading back now. I hope it gets easier for you and QOL improves. I love your mother's wisdom. Thank you for sharing your experience.....it will help many here.
Love Marie
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Old 03-03-2020, 01:47 PM   #9
Donna H
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Re: ENHERTU aka DS8401A

So great to hear from you. You are amazing! Thank you for sharing your journey. Wishing you strength, fight and improved QOL! All the best-
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Old 03-14-2020, 09:20 PM   #10
SoCalGal
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Location: LA LA Land
Posts: 1,606
Re: ENHERTU aka DS8401A

I can't believe these crazy times...hope everyone is staying safe, germ free, and social distancing. It 'aint easy, with the run on food and toilet paper, people seem to have lost their minds.

Anyhoo...thought I would jump on here and say I had very good scans this past week--probably the best I've ever had in 12 years.

Several areas are noted as RESOLVED. You could have knocked me down with a feather, I was not expecting such good results.

ENHERTU is delivering as promised by clinical trial results. And, the single agent was much easier for me to handle.

Stay healthy everyone - stay isolated and wash wash wash your hands. XX
__________________
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 03-14-2020, 09:24 PM   #11
Lucy
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Re: ENHERTU aka DS8401A

That's amazing Flori! I'm so glad to hear it and glad you shared it.

All the best to you!
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Old 03-15-2020, 01:16 PM   #12
jaykay
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Join Date: Oct 2012
Posts: 639
Re: ENHERTU aka DS8401A

Great news!
__________________
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!
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Old 03-15-2020, 02:54 PM   #13
Shobha
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Posts: 679
Re: ENHERTU aka DS8401A

This is fantastic news! I admire the way you weigh all your options each time and continue the fight. Wishing you "resolved" status all the way to NED!
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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Old 03-15-2020, 06:01 PM   #14
caya
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Re: ENHERTU aka DS8401A

Wonderful news, Flori!
So happy for you!


all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
14 Years NED!!
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Old 03-15-2020, 08:34 PM   #15
Bunty
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Re: ENHERTU aka DS8401A

Flori, that is wonderful news. This gives so many of us hope that these new drugs are going to be effective for a lot of us.
Marie
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Old 03-16-2020, 07:47 AM   #16
Donna H
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Re: ENHERTU aka DS8401A

Great news!!! Thanks for the update.
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Old 03-17-2020, 04:02 AM   #17
Melissa
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Re: ENHERTU aka DS8401A

Flori,
Was thinking about you and everyone on this site and found this.
So very happy for you!!
- love ya, Melissa
__________________
Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2020 a 14 years NED
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Old 03-17-2020, 12:55 PM   #18
Becky
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Location: Stockton, NJ
Posts: 4,172
Re: ENHERTU aka DS8401A

Yes! Yes! Yes!
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-19-2020, 09:20 AM   #19
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 2,002
Re: ENHERTU aka DS8401A

Hey Flori-girl!


I had posted a response when you first posted, but I see it is not here. Not sure what I did wrongly. Too bad you missed my stellar, witty and wise words! HA!

I will try again and just say how elated I am to hear of your great response! You needed a break, my friend. Much deserved! Please keep us posted of the effects, both good and bad, of this new and promising drug. Thank God for all the brilliant researchers who continue to bring us drugs to battle this beast. Hopefully, they will shine now to eradicate this Corona beastie.

Thanks for popping on and letting us know how you are doing.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 03-23-2020, 07:15 PM   #20
StephN
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Location: Misty woods of WA State
Posts: 4,128
Wink Re: ENHERTU aka DS8401A

Coming in on this a bit behind the good news, but this is JUST what I needed! So happy that the pain and suffering is worth the results. You just lucked out to get this new drug and blaze a new path for so many of us who will need this drug at some point.

I recall our dear founder Joe saying that after Herceptin the game would be staying alive and stepping from one new drug or trial to the next as long as we could. You keep rounding third, and trodding a long path after that.

It is not an easy life, but here you are, watching people die of something we never even imagined! Maybe you can make up a dance called "Do the Hunker Down"?
__________________
"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.
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