To Tykerb...or not to Tykerb...

[jessica]

Hi All~
Jessica here, joining you at this "To Tykerb or not" crossroads. I feel so fortunate to have your experience & guidance, but would appreciate more of your insight...
I just had a my regular q12week PET scan last Thursday. On Friday I spoke w/the PA & she told me that the scan was "overall unremarkable" (which sounds like an insult, but really is a GOOD thing), but there were questionable findings that we'd need to discuss.
Here's what she said they found:
1)a couple of lung nodules that have waxed & waned from scan to scan. we've wrestled with these previously, but never biopsied them b/c they're so inconsistent.
2)a supraclavicular node on the side of my mastec & recon, but I can't palapate anything. I'm just 10weeks ago post op, so it could be post-op reactivity?
3)a node in my abdomen showing activity
BUT
4)MY LIVER is JUST FINE! (That was my greatest concern since historically my liver's been the troublesome area.) I had a liver resection a year ago & want to VIGILANTLY protect NED & my new L LOBE -& ofcourse, the rest of me too!

That's really all I know for now. I'm meeting w/my onc on Thursday to discuss how to proceed.
Currently, the question is, do we add chemo to my q3week Herceptin or watch, wait & re-scan in 8 weeks?
I asked about adding Tykerb, but she said currently they're just using it w/women who've become Herceptin resistant.
I told her I would jump on-line here and get the consensus from all of you - the folks who are 'in the know.' She said she's looking forward to hearing from me what I've learned from all of you & how Tykerb's being used.

Ugh! All I know is I'm NOT losing my hair AGAIN for the 4th time in 5 years over a couple of funny nodes & some waxing/waning lung nodules!!
I've just begun searching around on line, getting more info on Tykerb, how it's used, but wanted to start here.

Thanks so much in advance for you insight, opinions, experience.

Keeping the Faith~

Jessica

[Odette]

Hi Jessica,

I'm glad that your scans were overall unremarkable. That is wonderful.

Still you are describing certain questionable areas.
My case is not a good example for your dilemma because I did have progression on Herceptin, but I remember reading in Dr Pegram's interview that he believes that Herceptin and Tykerb might work synergistically. So I'm voting for it, just that it'll keep you dancing with NED.

As you stay well, you could discontinue Tykerb and just stay on Herceptin.

Please please regard my opinion totally as a layperson's who is imagining herself in your place trying to understand the art and science of treating advanced breastcancer.

Best wishes and prayers,

Odette

[hutchibk]

Hi Jessica - I agree with Odette, and you will no doubt get a lot of other input from so many others who will have a lot of info. I swear that some of the ladies on here should be honorary researchers and doctors. There are some impressive minds here!

By the by - the Tykerb (and Xeloda if that becomes your path) should not make you bald again... it better not. I have big plans for my hair growing back soon!

[Lolly]

Hi Jessica~
I'm so happy for you that the liver is fine!!! That's such good news after all you've been through.
About the funny nodes and nodules, it's hard to know what to do, but you and your onc will have a better idea of the proper course after you confer.
If Herceptin still worked for me I'd still be on it, as I believe in the old adage "if it ain't broke don't fix it". That's only what I'd do, only you and your onc can decide what's best for you.

Big Hugs,
<3 Lolly

[Joy]

Jessica, you unremarkable one, you! I'm excited that the scans were good and I appreciate your desire to be vigilant. I think I agree with Lolly's advice, but, of course it is really up to you and your research and the doc. Have you tried getting really still and quiet and letting the answer just come to you? When something resonates in your head, heart and gut it has to be the right thing.


Regardless, keep up the good work and be happy with this news.

[SoCalGal]

Loosing your hair is NOT a side effect of tykerb-xeloda. Just wanted to eliminate that concern for you!

It's so frusterating enough to have cancer - a disease without concrete answers. That would be hard enough, but we are required to discuss and discern what our docs spent YEARS in med school learning, AND what our surgeons spent years learning, AND what our pharmacists spend years learning, AND what our therapists spent years learning, AND what Buddah, et al spent years practicing....whew...It's not wonder we are Wonderwomen!

[kk1]

Hi Jessica;

While it is a concern, tiny lung nodules that wax and wane are not uncommon in “healthy” people so this could be nothing, and having reactive nodes 10 weeks post op is probably not that unusual either. From reading the Tykerb posts it sounds like it does impact quality of life although for most it seems to be tolerable and less harsh than some of the other choices. Since at the moment it is not clear that you have really progressed, I personally would wait and request the CTC test to give a little comfort while you wait out the 8 weeks. If the number of circulating cells are low then you probably don’t have too much to worry about but if it were high (>=5) then it might be suspected that the nodules are shedding met cells in which case you would want to jump on them. As everyone else said---this is just my opinion and I am not a doc.

It is great to hear that your latest scans are unremarkable! Our experiences seem to track each other, today I saw my first scans post liver resection and they looked great--- nice and clean but a bit strange to see only 1 lobe ;). They recently computerized everything at my center so they can now pull up all of the images right in the room and review them with the patients. It’s pretty cool. I learned/saw that I too have a tiny lung nodule that has been on all my scans since the beginning but my Oncologist believes it is nothing. I continue with the 3-week Herceptin with CTC’s every 9 weeks, and scans every 12 weeks. We would consider adding Tykerb if either the CTC or the scans suggest something is becoming active.


ps. I did go snow skiing 10 weeks post op (amazing) and I am just starting back to my competitive sailing too! Started working on my abs again with my Pilates video and of course I am back to work. Thanks for your encouragement pre and post surgery---is was very comforting to have talked to someone who had been though it before. btw- I also confirmed today that Dr. Pegram is moving to the “right” coast and joining the faculty here at UM this fall-- very exciting.Now I won’t even have to leave home for a second opinion. It amazes me how much high quality recuiting UM has been able to do recenty. Seems like every few weeks there is a new announcement.

take care

KK1