Checking In: Bad News (Hello Kadcyla) and Good New!

[Kim in CA]

Hello Her2 Fam,

It's been a while since I posted, but thought I would post an update. After nearly 3 years maintaining on Herceptin and Perjeta, I had a PET scan in Dec. that showed a mass in the peri rectal area of my abdomen. After more scans and two biopsies, it was determined to be metastasized breast cancer, not colon or ovarian, whew! The tumor was still Her2 positive, but is no longer ER+.

So, out with the Herceptin, Perjeta, and Femara, and in with Kadcyla! After almost 15 years on Femara, can't say I'm sad to see it go, but devastated that the H/P combo stopped working for me, at least that's what my onc believes.

I don't know if I believe that Herceptin has stopped working though, but more that it just needs a little help, which leads me to the good news part of this update. After 4 infusions of Kadcyla, the tumor is almost gone.

If Herceptin had stopped working for me, then it would seem that Kadcyla would not be effective. So.... when I can no longer tolerate the Kadcyla, or it stops working I would hope I could go back on Herceptin, in combo with something else. My doctor says no, but I guess I'll cross that bridge when I get there.

The other good news in this update is that the Kadcyla has been pretty easy for me to tolerate, so far. Just a lot of fatigue for a few days after my infusion. My main concern is the neuropathy getting worse that I already had from good ol' taxotere. I am now taking a very small dose of gabapentin (Neurontin) at bedtime and it does seem to help with the pain, but doesn't do much for the numbness. It sure can make doing simple things challenging! Anyway, just had my 6th infusion today, and will be getting another scan in June to see how things are looking.

The best news of all is that I went on my first horse riding/ camping trip last week, since I started on Kadcyla, and it was such good therapy! I was so worried I might have to give up my trail riding, while on Kadcyla, but so far so good!

Take that, metastatic breast cancer!

[Carol Ann]

Hi Kim! Ugh, sorry to hear the bad news ... but so glad for you that Kadcyla is the good news! Wonderful that you were able to go trail riding and camping, yes you are putting that ^&%$% mets in its place!

Carol Ann

[Mtngrl]

Hi Kim,

I'm sorry about the progression; so very glad Kadcyla is helping!

Neuropathy's one of my most significant side effects, from Kadcyla and later from a little sojourn with Abraxane. Nerve damage is slow to heal. I was advised to take alpha-lipoic acid and a LOT of L-glutamine for it. I think they help.

Also, I figured out that, for me, some kinds of volatile organic compounds in the air aggravate my neuropathy. This includes diesel fumes, mold toxin, chlorine, and any kind of air "freshener." Plus probably other things I don't know about yet.

As for never going back on Herceptin, look at my signature. My first oncologist and I concluded that I need "Herceptin Plus" something. I've had two periods of being on just H&P. In the middle I had Xeloda for awhile, then Abraxane. This seems to be a good strategy for me. Everyone is different, but one of the best things about a group like this is we can compare notes and learn from each other.

In my signature I say my most recent scan was "stable." That was my interpretation. The radiologist said there was evidence of progression. My new oncologist took that to heart, said she thought my cancer had evolved to resist Abraxane, and wanted to put me on a new chemo right away. I vetoed that. When I read the report more thoroughly I concluded that what the radiologist called progression could just as well have been characterized as stable disease. I had no new lesions, and everything that had been "resolved" was still resolved. The lower lungs were still active, but not a whole lot more than before. I was taught not to put too much stock in variations in uptake levels between scans. You might be on a different machine. Your "background" glucose uptake might be different. It just doesn't mean a whole lot.

"Stable" is just as desirable an outcome as NED. Complete responses and/or long progression free intervals are exciting and great, but in reality they are not effective proxies for overall survival. I'm in this for the long haul.

I don't think I'm smarter or better educated than the health care professionals who are caring for me. But I do know my own history, and I know what's been working so far. (I have a new treatment team because I moved from Boston to Denver). I'm five years out. I'd be dead by now if it weren't for "Herceptin Plus."

Good luck with your current treatment strategy and the one(s) to come. Just take it one step at a time, and remember you can always get a second opinion. And I'm so glad you got to go riding again!

[SoCalGal]

Giddyup!!
Hi Kim :)
Great news on kadcyla working. "Cross that bridge when and if you get there", I'm all for that approach. I feel that you for sure can revisit herceptin if need be. Neuropathy is a drag. I don't have pain but I have 2 numb finger tips and a numb thumb that make many things difficult, like buttons and putting in/removing my contact lenses to name the top two! I also have numb toes on both feet. Annoying. Feels like there is always something in my shoe!

Glad you decided to post. Keep updating and really happy to hear that kadcyla is doing the trick!
Xo xo

[KatherineM]

Glad that Kadcyla is working for you, Kim! I started on it in March - for lung mets - and will get scanned in May to see if it's working. H&P and Taxol stopped working after a year.

Because I'm Asian, I have twice experienced low platelet counts, (45% of Asian women, 15% of general population, get them), that required platelet transfusions. The second time, I had an allergic reaction and broke out into hives!

The other side effects are neuropathy, severe hand and foot cramps, and blurred vision. My right eye has swollen; I go see an ophthalmologist on Monday.

But it will all be worth it, if Kadcyla is working! So glad that you could ride and camp. I'm planning to go to Italy in May, with my daughter, for her 30th birthday!

To continuing to live our wonderful lives! I am inspired by you long-timers. I am two years from initial diagnosis; one year from Stage IV diagnosis, and would like to stick around for my yet-to-be-born grandchildren!

[Ceesun]

Kim Sounds good all in all! Kadcyla can be good for sure! Take that MBC love it!! Cathy

[Jackie07]

So good to hear the good news. Yip. Giddyup!

[StephN]

Dear Kim,

You know I am sorry to hear that the old sneaky cancer has wormed it's way back into your life and you had to bring out another big gun to knock it back. But knocking it back you are! Equine therapy will do the rest.

Will look for more good news after the June scan.