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Kim in CA · 01-18-2018, 11:10 PM

Dear Flori,

Just wanted to share my experience with Kadcyla. I've been on it two years now, and have found it to be quite tolerable. However, Herceptin alone, was the easiest drug I've ever been on. I never had to deal with any of the allergic reactions you've had, so my experience with Kadcyla may not even be relevant. My biggest side effect has been some fatigue for about 3 days following my infusion. I also tend to get bloody noses frequently due to lowered platelets, but have never been so low as to withhold treatment. The neuropathy in my hands and feet has gotten worse, and it was already pretty bad from past Taxotere, but I manage to still do things, albeit more clumsily!

Anyway, your Onc may have a good point in that the Kadcyla will still be there for you if the trial drug isn't working.

You and I have been at this for such a long time, I keep thinking holy cow, they've got to come up with something soon.....right?!

Sending you hugs from the other end of the state!
Kim

01-18-2018, 11:10 PM	#6
Kim in CA Senior Member Join Date: Sep 2001 Location: California's Gold Country Posts: 404	Re: Need input, KADCYLA or TAS116? Dear Flori, Just wanted to share my experience with Kadcyla. I've been on it two years now, and have found it to be quite tolerable. However, Herceptin alone, was the easiest drug I've ever been on. I never had to deal with any of the allergic reactions you've had, so my experience with Kadcyla may not even be relevant. My biggest side effect has been some fatigue for about 3 days following my infusion. I also tend to get bloody noses frequently due to lowered platelets, but have never been so low as to withhold treatment. The neuropathy in my hands and feet has gotten worse, and it was already pretty bad from past Taxotere, but I manage to still do things, albeit more clumsily! Anyway, your Onc may have a good point in that the Kadcyla will still be there for you if the trial drug isn't working. You and I have been at this for such a long time, I keep thinking holy cow, they've got to come up with something soon.....right?! Sending you hugs from the other end of the state! 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...