TRIPLE POSITIVE GROUP

Thanks for posting! I saw the Neratinib stuff you posted in that thread.

Morrigan, you are welcome. The effect of Nerlynx for that subgroup is big. The trial didn't compare Nerlynx against Herceptin+Perjeta, but Perjeta and Nerlynx work in very different ways. I am glad to see that the results at 8y confirm that the protective effect against recurrence and death of Neratinib was real -there is no way this was a fluke. Today, they offer Nerlynx to anyone with residual disease, but only two years ago I had to fight so hard to get it -I had to change oncologist and hospital.

"Morrigan -- I am not going to pull out my copy of the study right now*, but I recall somewhere around 30% of the patients in the KATHERINE trial (Kadcyla) had gotten Perjata."

That is interesting so it would seem that Kadcyla improves upon Herceptin and Herceptin/Perjeta.

"Today, they offer Nerlynx to anyone with residual disease, but only two years ago I had to fight so hard to get it -I had to change oncologist and hospital"

I do see a lot more women getting it, especially in my Triple+ Facebook Group. When I asked about it in February the Doctors about it they weren't enthusiastic. I'm going to bring it back up in the Spring when I get closer to the end of Kadcyla because I really want it.

@YeslamaDragon - Yes, I am going for #9 next week. I'm not having major SEs with Kadcyla but, I'm still counting down to my end date in the Spring. Fingers crossed that my Echo holds and I won't need a break after my next Echo (February).

Laughing Gull- thanks so much for sharing that info! I have 2 HP infusions left and was leaning towards not pushing my MO about neratinib (he hasn’t brought it up at all), but now I think I’m going to push hard for it. At worst, I take it and have to drop it...but I’m willing to throw anything at this beast to keep it away!

Suggestion for remembering to take your supplements - put it somewhere you always have a routine - on the kitchen table, by the coffee pot, near your tooth brush. Whatever works for you. I take mine as part of my get dressed in the morning routine. If I'm rushing out to golf, I at least put the bottle on the bathroom counter so I will remember when I get back.

I am absolutely amazed how treatment regimes have changed in just 4 years!

Thanks hapa. I have doing more or less the same, but in the last five months very consistently. More cheese, more yogurt, more kiwis, almonds, chia seeds, dried figs, canned sardines...all things calcium. I also got the pill dispenser. For me, it works and it's the only thing that works.

And you are right, hapa, that the real deal for us with residual disease was Kadcyla. Like you, I wish I had been able to get it. I blame my (then-beloved) oncologist, for not being on top of the latest developments, beyond the established standard of care. He should/could have switched me, before I reached the tail end of the H-P course, but instead he dragged his feet until it was too late. Hopefully Herceptin + Perjeta + Neratinib will work for us.

Fab4mom, good that your MO will attend the SABS conferences. But these results have been out since October, and they confirm prior results taken at the 5y mark. Your MO shouldn't need to attend that conference to get the story straight and make up his/her mind one way or another. Not saying this makes sense for you, since you are already getting Kadcyla. But it just pisses me off when doctors are slow to keep up, then procrastinate further when you ask for an informed opinion about developments they ignore. Sorry for the venting.

I had to go ahead and get a pill box too, even though alot of my daily meds are just supplements or pepcid. I just couldn't keep it straight sometimes if I took my pills or not. I also feel like I'm going on 85, but it's been so helpful. I fill it each Sunday morning and I'm good to go all week. Also helps me keep on top of my tamoxifen so I don't run out.

Hi!

In recent years, oncologists have been willing to prescribe Taxol + Herceptin for small HER2+ tumors. I did TH, (along with Adriamycin + Cytoxan), and I found it to be a very doable chemo regimen. I did my TH for twelve straight weeks, and found it to be easier than A + C. My chemo brain went away, and my worst side effect was diarrhea, which I managed with Imodium. TH is also associated with peripheral neuropathy. I had a little neuropathy in my fingertips.

Taxotere + Carboplatin + Herceptin is a tried and true regimen for HER2+, but it does pack more of a wallop. That's why there's typically a 1-2 week break between each dose. TCH can cause gastrointestinal distress (nausea, heartburn, diarrhea, constipation, etc.). Also, there's a very very very small percentage of women who do TCH and suffer from permanent hair loss.

I did AC + TH because my tumor was big (5 cm.+), I had a compromised node, and my oncologist said that is was replicating like kudzu. That's an aggressive regimen, but I had an aggressive cancer. I was 46 when I was diagnosed, and I'm not sorry I did six months of chemo.

((Hugs))

Thank you specialK and ElaineThere!

Any tips on how to prevent neuropathy? I have read using ice packs on hands and feet during chemo helps but wasn’t sure if that compromises the chemo from reaching the hands and feet.

Thank you again. As scary as this is, it’s nice to know there are others who u set stand what I’m going through

Hi everyone,

I posted this question in the December chemo group as I get my first infusion tomorrow but you all might have a better answer. My infusion is scheduled for 30 minutes (TCH). I'm wondering if that was an error as from what I've read, it generally takes 3 hours. No complaints if it really is only 30 minutes but I like going in to new things as prepared as possible.

Thanks for any responses and advice you may have for me.

PB: Mets to hands and feet are nearly unheard of, so oncologists are generally ok with icing. The scalp icing I personally would be more worried about. I didn't do either because I was always FREEZING in the infusion suite and found the whole experience unpleasant enough.

MsMurphy: I am guessing that something was lost in translation. The first infusion especially they run everything slowly and have extra long observation between each. I had TCHP so the whole thing was a whole day once you add in getting accessed and waiting for labs to come back and all. Take a bag packed with a warm shawl (and ask for heated blankets! Better still -- find out where the blanket warmer is!), all kinds of snacks and drinks because you might prefer your own to what they offer, a lightweight variety of stuff to do when you are kind of out of it (you will learn what you can and want to do. I got a bunch of stuff like adult coloring books and downloaded books, but ended up at most watching Great British Bake Offs and napping) Wear super comfy clothes too. I also like slip-off shoes so it was easy to put them back on when I wanted to pace or had to go pee (it is a lot of fluid they pump into you). OH! I also found that the flushes (if you have a port) and the anti-nausea meds gave me a horrible taste in my mouth, so I brought lemon drops, which were great. Jolly Ranchers or gum or whatever you like that has a nice strong flavor.

I suspect you won't have to worry about periods for a while (at least not with TCHP! not sure about THP). But absolutely ask your oncologist about them.

Hi pbtrible! I do feel like I'm going into chemo a bit blindly too despite meeting the oncologist twice. It's so overwhelming to grasp it all.The originally plan was for me to do just TH weekly for a month and then herceptin for a year but by the time they finally removed the tumor (mastectomy followed by lumpectomy as it was missed the first time around), it was larger than initially thought so my oncologist changed me to TCH for 6 cycles. Fingers crossed everything goes well and I'll keep you updated.

Do I understand that your infusions stopped completely after 6 cycles of TCHP?