TRIPLE POSITIVE GROUP

"Even with that knowledge I still would have had it out. They could just put another damn port in if I needed it later on. So just consider everything and you will be making an informed decision."

I mentioned that to my BS when he said, I'll see you for port removal as soon as you're done with Kadcyla.

His answer was MOs will always want you to keep it in but, he (surgeon) didn't like leaving them in longer than needed because they could always get infected. His answer was if something happens we can always put a new one in.

I can see both points. I've gotten used to the port, it doesn't really bother me. However, I'm not sure I want to keep it in for more than I need it. I guess I'll cross that bridge when I get to it

I am the opposite -- I love my port! And I have good veins (but want to keep them that way)

I have a bony chest and it sticks out, but I got a seatbelt cushion and try not to wear my messenger bag over the port. But the port is one quick stick, never get bruised arms, doesn't take the time to get an IV going.... And I feel like it is insurance against the day it is out, so that my veins will still be good and they NEVER have to stick me on my surgical side and increase risk of lymphedema.

It turns out I need kadcyla anyways as I had residual disease, so extra glad I have kept it in.

I was glad I kept my port through Herceptin. Yes, I had a blood draw before each infusion. I was almost superstitious about getting it out but MO encouraged me to go ahead. I did right after my first mammogram after I was done. It was an easy procedure.

It came up as aside a few posts ago but you should be getting an echo at start and every 3 months until you finish. I had NO SEs from Herceptin but heart damage is a possibility which is why they do the echo.

Cowgirl - that's how I feel. I'll leave it in as long as I'm getting Herceptin every 3 weeks, but as SOON as that's over - out it comes.

And Herceptin in PILL FORM?! WHY can't we have that here?!

Question for anyone that might know (will ask my MO next time i see him (6 weeks).

I was reviewing my full surgical pathology report and compared the HR/HER2/Ki-67 to my biopsy pathology.

ER+ 99% (on both)

PR+ 10% biopsy and Negative 0% on Surgical

HER2+ 3+ (on both)

Ki-67 60% on biopsy, 10% on Surgical.

Is it normal that some of them changed/dropped? Also does being ER+/PR- matter much? I would think I'll still be treated the same for Hormone Therapy but, wasn't sure

ET - do you remember the member that used to post here Cherry? She is in Sweden and got the injection - that is what I remembered and also remembered seeing that it had been approved for use here relatively recently. Definitely quicker for sure!

morrigan - the way the percentage numbers are arrived at has to do with how the slides are viewed in the lab. The slide is prepared - biopsy and surgical are done the same way - and the pathologist counts 100 cells, and how many contain a receptor - so if your biopsy slide had 99 cells with an ER receptor, you had 99%. These counts can be subjective depending on where the slide prep was done from on the tumor, because tumors are, for the most part, not homogenous. Once receptors are identified one is deemed positive, but very low percentage receptors are sometimes treated as ER-/PR-. Some testing platforms also have a range, rather than a specific percentage number. Keep in mind that since you had neoadjuvent chemo, the cells in the tumor could/would have been affected, downregulating to an extent. FWIW, I too had a low-ish PR reading on biopsy, and then had Mammaprint done from a biopsy sample because my BS was participating in a trial with Agendia Labs. Mammaprint showed me as PR-, which unfortunately, is thought to be a marker for increased aggressiveness. Not much is well understood about the role of PR and you are correct, your anti-hormonal options remain the same.

On the port question - my oncologist wanted me to keep mine for two years post-Herceptin, as a minimum. I ended up keeping it for six years, it was removed in 2017. Mine was a very tiny subclavian port, should have been visible in all necklines except a turtleneck - don't wear often in Florida, lol! - but was so well placed that you couldn't see it. I had a lot of surgical intervention during that time and could have had it removed at any time but I kept it for a number of reasons - my MO wanted me to and I trust him on all subjects, it was placed during BMX by my BS so I had no external scar, he used the mastectomy flap so removing it would mean a new visible scar, having the port flushed every six weeks meant I was on the infusion nurses radar so I could ask questions, get med refills, etc. Also, considering I am a pragmatic person on the whole, I was surprisingly superstitious about removing my port - a number of my experiences during treatment did not go as expected, so I was clinging to my port like it was an evil eye, lol! I was ready to have it out in 2016 but a week prior to that scheduled reconstruction related surgery I had a bilaterally abnormal PET scan, so my MO told the PS not to remove it. When I did have it removed a year later it was done by my PS so I have a beautiful incision line, not noticeable at all.

mmorigan - I have heard of peoples pathology changing, but I'm not sure if it's a different tumor. I wouldn't sweat it too much either, your still really ER and Her2 positive either way, so on the right treatment plan

SpecialK - it's nice your ps took out the port so there is less scaring, when I'm done with all my treatment, I am going for a Diep Flap, so hopefully I can do that too

Ingerp, thank you for the info! A 10 minute injection in the thigh does not sound like fun... ouch! But it does sound more appealing than an hour long intravenous infusion. Too bad the pill form isn't out there yet.

All -

I finished up my last round of chemo, and would like to hear from you all what to expect in terms of side effects when I'm "just" getting Herceptin/Perjeta. It's obviously hard to tell what's from the chemo and what's from the others, so I'm curious what went away for you all and what stuck around. Thanks!

Kris

I had my third HP only and I don’t have much in terms of side effects. My nose runs and my 💩 are loose, but that’s about it. Very easy to tolerate for me. Good luck

The taxanes (Taxotere and Taxol) are tough on the digestive system --- they contribute quite a bit to chemo diarrhea. I never had diarrhea while doing Herceptin.

My first Kadcyla was 90 minutes, 2nd was 30 minutes. I seem to be doing just fine with the 30 minutes but, I have seen others report going to 60 or 90 minutes in order to reduce SEs. I'm going to keep that in my back pocket for now.

With Kadcyla the only SEs I have and they're random, occasional headache, occasional runny nose and loss of appetite (new for cycle 2) for 3-4 days but, I'm totally cool with that - helps lose weight/keep weight down.

The only consistent SE is dry mouth. I always feel like I'm stranded I the dessert.

For HP I just did the 30 minutes infusion (per drug) and didn't have any issues.

I expect COVID might require more of a fight for a longer infusion time due to the cut down on available chairs. However, we have to do what's best for our bodies in the long run.

My only SE with HP was a constant runny nose. Normal life otherwise.