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Old 01-18-2019, 10:43 AM   #81
Juls
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Re: Treatment after Kadcyla?

Hi Cathya

I am strongly triple positive.

I have had letrozole before and just stopped aromasin last week because of this progression. Currently on no treatment. Radiation finished 16th Jan ( 5 fractions).

I have asked them to look at liver re Bilirubin level - no one knows why it raises (?). Other liver markers in normal range, no symptoms etc.
Get the feeling that they don't know what to do next!

Only discomfort is leg at radiation point. Hopefully it should ease!

Thanks for reply - much appreciated.

Any & all thoughts welcome!

Juls
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Old 01-18-2019, 01:07 PM   #82
Donna H
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Re: Treatment after Kadcyla?

Keep fighting the fight! Sometimes....ok, lots of times, the medical people are so annoying! Sending hugs and strength your way!
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Old 01-18-2019, 02:07 PM   #83
Cathya
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Re: Treatment after Kadcyla?

Juls;

Ask about Ibrance/Letrozole. I know it's working very well for Lauren who is also triple positive. I can ask her to contact you if you like.

Juls, I know it is written that Ibrance is for Her2- so your onc might not necessarily think of it but I suggest you push him/her. Here's a report and part I've highlighted

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6122240/

Ongoing and future palbociclib studies
As of February 2018, there were 70 ongoing breast cancer interventional studies that involve palbociclib. Select ongoing clinical trials to further assess the role of palbociclib in breast cancer are shown in Table 3. Currently, ongoing studies are evaluating the safety and efficacy of palbociclib in combination with endocrine therapy in patients with early breast cancer (adjuvant and neoadjuvant) and HER2+ metastatic breast cancer in combination with endocrine therapy, pertuzumab, and trastuzumab. Palbociclib is also being studied in patients with other tumor types, including gastrointestinal, and lung cancers.

My own oncologist said there are very positive reports coming for Her2+'s and Ibrance.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18



Last edited by Cathya; 01-18-2019 at 02:26 PM..
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Old 01-18-2019, 02:50 PM   #84
Juls
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Re: Treatment after Kadcyla?

Hi Cathya,

Thanks - will add to list for discussion and do so more research. Unfortunately in my area (Scotland) info and discussion limited!! Think I did the talking at my last meeting.

Only thing that has been mentioned is a trial with a new drug similar to Kadcyla and Herceptin but not told which one!


Geez!

Juls
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Old 01-19-2019, 11:56 AM   #85
Juls
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Re: Treatment after Kadcyla?

Hi All.

Already a hiccup, Just received appt. for MRI/Liver. for 6th February.
Oncologists meeting regarding new treatment is 31st January. So obviously info won't be available. I'm guessing another delay.

Can see this going down with my family. Does seem like there is any rush!

Any thoughts welcome!

Juls
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Old 01-19-2019, 06:40 PM   #86
donocco
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Re: Treatment after Kadcyla?

Juls

Go to google. There were cases in Denmark in 1993 where breast cancer patients who took
390mg Coenzyme Q10 daily had the mets cleared. Interesting. You would think everybody would know od this but cancer is very political, a high class word for power and money.

Can yoiu buy Coenzyme 10i Scotland? I take about 600mg daily for a mild case of high blood pressure. You could take 200mg Q10 twice daily. No harm in trying.

Paul
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Old 01-29-2019, 10:21 AM   #87
Juls
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Re: Treatment after Kadcyla?

Hi Paul,

I can buy this here. Will look into it. I do have slightly low blood pressure so will research that as well.
Thanks Paul!
Now waiting to see if MRI is going to delay consultation/treatment decision on 31st.
Juls
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Old 02-02-2019, 11:22 AM   #88
Juls
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Re: Treatment after Kadcyla?

Hi All,

Had consultation on Thursday. Most questions from 2weeks ago unanswered.
Again team worried about bilirubin & that it might knock me off other trials and treatments.

Asked if any tests available for liver. Only test mentioned was for Gilberts Syndrome but I think this is unlikely. Test has never been done and Doctor just realised this!

Only treatment offered was Epirubicin - which I know little about.
Next morning got a phone call & Epirublin was mentioned. One of the 2 meant to be good for Her+!

Think I have to make my decision by next Thursday.

Any thoughts welcome.

Juls
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Old 02-02-2019, 12:40 PM   #89
donocco
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Re: Treatment after Kadcyla?

Jules

Epirubicin for all intents and purposes is a form of Adriamycin.It is an Anthracycline chemical and has the same side effects as Adriamycin such as hair loss, mouth sores, low white cell counts and possible cardiac damage. The dosage of Epirubicin is different than Adriamycin (say 100mg /m2 vs 50mg /m2 but I would consider Epirubicin to Adriamcin the same way as I would see Ativan to Xanax. Eprubicin as far as I kn ow has no anti-Her 2 Neu effect, it will reduce tumour burden.

Paul
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Old 02-02-2019, 09:19 PM   #90
Becky
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Re: Treatment after Kadcyla?

Prior to using herceptin, adriamycin and drugs similar to it were the gold standard for her2 positive bc. This is because it it very effective if you are also topo2 positive which about half the people who are her2 are. This is because the topo2 Gene lies very close to the her2 Gene and both get messed up and mutated. However, with herceptin, this didn't matter anymore so they moved away from those drugs. So, of they aren't going to be giving you herceptin, then this isn't a bad choice.
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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 18 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 02-03-2019, 06:06 AM   #91
Juls
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Re: Treatment after Kadcyla?

Hi Paul,
Thank for your reply. I really don't know which way to go. Each time I speak to My Oncologist something else is mentioned. Then I'm left to research myself! I guess I have to reduced the tumour burden first. Although to date I don't know how many etc. Liver is the issue.
I have had 1 liver met on and off for 6 years & then I have a successful ablation on it but other liver mets appear within weeks!
Juls
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Old 02-03-2019, 06:14 AM   #92
Juls
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Re: Treatment after Kadcyla?

Hi Becky,

Thanks for your reply. Will look into all this later today.
Apparently there is a similar drug to Kadcyla (mono clonal ?) which was mentioned last week. Think Keytruda so will also look at that. It does look as if I'll have to start one of the old ones!
Told on 31st I had a few weeks to make a decision, now have to decide by next Thurs 7th - Due to platelets being low(?) First thing I note is Co-Codomal lowers platelets!
Thanks again
Juls
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Old 02-03-2019, 10:46 PM   #93
donocco
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Re: Treatment after Kadcyla?

Jules

The Acetaminophen in Co-Codomal has been known to lower platelets but it isnt that common.
Could the low platelets be due to another drug? From the cases I read, when the acetaminphen is stopped the platelets usually rebound.

Paul
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Old 02-04-2019, 06:56 PM   #94
SoCalGal
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Re: Treatment after Kadcyla?

Juls
Not sure why your onco doesn't seem forthcoming with info. I am frustrated on your behalf!!

Can you search with this link from breastcancer.org? they have a good metastatic search engine. Is there a search site that is specific to you? Can I help you search? And are you on any facebook groups? There are some very good ones online and you can post questions to lots of people and get info pretty quickly.

Here's the link to trial search:
https://www.breastcancer.org/symptom...s-trial-search

ALSO:
DS8201 is her2 high and low, and good for ER positive. Are you limited to trials in Scotland only? Do you have friends and family other places so you can widen your search?

LMK how I can help!
__________________
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 02-05-2019, 01:02 PM   #95
Laurel
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Re: Treatment after Kadcyla?

Praying for you, Juls!
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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

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

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Old 02-05-2019, 02:36 PM   #96
nancy dip
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Re: Treatment after Kadcyla?

Hi Juls. Not sure if this is helpful but I live in Glasgow and I had epirubicin. Was told it was good for Her2. warmest wishes. Nancy
__________________
Found lump myself 8 months after routine mammogram.
29/11/06-WLE and then re-excision to get clear margins.
Tumour was 1.2cms; Grade3; Er+ Pr+ HER2 3+++; SNB negative out of 9 nodes.
Chemo was Epirubicin every 3wks x4 then Xeloda (2wks on, 1wk off) for 4 cycles. ( I am part of the TACT2 trial.)
Rads x25
Arimidex for 5 yrs.
Hoping to start Herceptin within the next 2 weeks (we have to follow the HERA protocol to qualify for Herceptin in the U.K.) I worry about the delay in starting Herceptin!! Started 8/10/07
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Old 02-05-2019, 02:53 PM   #97
Juls
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Re: Treatment after Kadcyla?

Hi Paul,

Also on Gabapentin and Amitriptyline. Just finished Dexamethasone. One minute its my platelets next its Bilirubin!
Juls
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Old 02-05-2019, 03:04 PM   #98
Juls
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Re: Treatment after Kadcyla?

Hi SoCalGal,

Think at the moment no-one sure which way to go. Consultation last Thursday was for Epiribucin. Friday morning Doctor called and suggested Eribulin. I have been researching today but no further forward. Will look on breastcancer.org. I was told by Onc. to look at McMillan Cancer site but info basic. Think trial taken away from me because of bilirubin.

DS8201 - will look into!

I have family in Canada.

Thanks Laurel!

Juls
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Old 02-05-2019, 03:12 PM   #99
Juls
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Re: Treatment after Kadcyla?

Hi Nancy,

I'm not so far way - an hour down the coast!

That's good to know. My Onc. did say it was good for Her2+. I am a bit concerned about starting it this week as I am still recovering from radiation treatment which has left me walking with zimmer.

Regards
Juls

How did you find it?

Regards

Juls
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Old 02-05-2019, 03:28 PM   #100
donocco
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Re: Treatment after Kadcyla?

Jules

I took a quick glance at DS8201. It is Herceptin combined with Deruxtecan and seems to have a good effect in the phase i studies. I tried to find out what Deruxtecan is and didnt have much luck but it probably is frelated to Topotecan (Hycamptin) which is a topoisomerase inhibitor like Etoposide. May be worth looking into

Paul

PS I had no idea Adriamycin was a topoisomerase inhibitor until Becky put that post on the board.
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