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Old 06-21-2018, 11:33 AM   #1
Cathya
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Location: Ontario, Canada
Posts: 711
ZW25 for any Her2+ ER/PR+ or neg. when Herceptin, et al stops working

Hi all;

Just got back from my oncologist and after we finished talking about Ibrance (which I will post about separately) I asked him information on any new, exciting drugs for Her2+'s and mentioned that there women that Herceptin doesn't work for anymore. He used to work in Montreal, Boston at Farber and is now in Ottawa, Ontario. He said the most exciting drug available now to replace herceptin is ZW25. He was very excited about it. It apparently has minimum side effects and fantastic results. It makes no different if you are hormone positive or negative. It's new and he's put about a dozen women on it so far.

As an aside, I searched our site to see if it had ever been mentioned before and it was once......Amy (Mtngrl) had mentioned it in one of her last posts. I think it was being investigated at that time. I could cry. Poor Amy.

Please check it out as a possibility if you are finding herceptin et al, not working for you. Perhaps even if it does....

God bless,

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 along with Letrozole.
Genetic testing of ovarian tumour and this new lung met will take 2 months.
To see geneticist to be retested for BRCA this week.


Last edited by Cathya; 06-21-2018 at 11:36 AM..
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Old 06-21-2018, 02:39 PM   #2
Juls
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Re: ZW25 for any Her2+ ER/PR+ or neg. when Herceptin, et al stops working

Hi Cathya

Sounds promising.
Hope it gets to UK!

Juls
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Old 06-21-2018, 03:42 PM   #3
Cathya
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Re: ZW25 for any Her2+ ER/PR+ or neg. when Herceptin, et al stops working

He was very excited about this and is a very knowledgeable onc. Check it out for sure and keep track. I know it's new here but I am discovering with him that it all depends on your oncologist and his connections and interests. I am soooo lucky to have him treating me. His reaction when the ovarian/breast cancer conflict came up was that he would simply get creative to deal with it. I always come away from my appointments feeling very optimistic.

Thinking of you Juls,

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 along with Letrozole.
Genetic testing of ovarian tumour and this new lung met will take 2 months.
To see geneticist to be retested for BRCA this week.

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Old 06-21-2018, 04:15 PM   #4
Carol Ann
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Join Date: Dec 2013
Posts: 1,006
Re: ZW25 for any Her2+ ER/PR+ or neg. when Herceptin, et al stops working

Thanks so much for posting about this! So encouraging!!


Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 06-23-2018, 11:58 PM   #5
sarah
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Re: ZW25 for any Her2+ ER/PR+ or neg. when Herceptin, et al stops working

Wow Cathy, this sounds promising. Thanks
Sarah
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