Kadcyla for residual disease after neo adjuvant chemo

YesIamaDragon

Flowerkid, I love my oncologist and she is very honest. She told me the only way to know you you are truly a breast cancer survivor is to die of something else The trouble with breast cancer is it can recur even decades later. We are doing all we can to prevent that, and hopefully there will be a treatment that leads to permanent cure. Not the answer any of us wants, but if there is a single cell hiding out somewhere out of reach of all of these drugs, there is no scan or blood test that can show it to us now.

Flowerkid

Thank you yeslama dragon! Sincerely

Sigh. Truth be told

Strength and positivity!

YesIamaDragon

Yes, I get all bent out of shape at times about it, but I try to remind myself to put one foot in front of the other, live each day and try to control the things I can. Some days I do better at it than others!

But I have a friend who had 3c triple positive and was diagnosed just as herceptin was approved (15 years ago?) so she never got perjata or kadcyla. She says she almost never thinks about breast cancer any more.

AngieB92

Prior to starting chemo, they found two small modules - one in each lung. They are just checking on that again. And really they weren’t goi g to do this CT but figured why not. They did tell me no PET scan or anything like that until I start having symptoms like pain in the same place continually for two weeks.

YesIamaDragon

#13 today. Every previous one I went to work after infusion, but today I just could not keep my eyes open and I wasn't sure the zofran would hold (I cannot work or function in even the most basic ways on compazine) so I called out. Oh well.

DO any of the rest of you have a rash? I think I have read others here have had. Has anything worked for you?

Angie: When is your scan scheduled?

Nottodaycancer2020

hi ladies,

Hope it’s okay to jump on this thread and ask some questions. I finished my TCHP 11/6 and had a bilateral mastectomy on 12/1. I just got my pathology report today which was good for the most part. My inclusive cancer sport started at 1.8cm and I had DCIS 7x4 cm. My invasive cancer is now 1mm. The DCIS is .3mm. My oncologist says I definitely responded to the treatment and almost had a complete response. Due to this she is recommending continuing the targeted therapy only. She definitely said it’s my choice if I want to be super aggressive and do Kadcyla.

Can anyone offer insight from knowledge you have gained along the way? I’m feeling torn on what the “right” decision is since I’m in a grey area. thanks 😊

YesIamaDragon

Hi Not Today, and welcome!

The decision is very personal. You had nearly complete response to the neoadjuvant chemo, which is fantastic! On the other hand, you are young, and breast cancer is a sneaky beast. You did have a positive node and high grade. It is tough! And none of us has a crystal ball.

I had much less response to chemo than you did, mine shrunk by about half and my sentinal node was still positive after chemo, so for me it was easier to decide. I have had a lot more side effects on this than most people, but have still managed to work through it (though today, after my 13th treatment, I took the day off work and it was a very good call). I am still going to talk to my doc about neratinib next. For me, knowing that I did everything possible would make it easier for me if ti DOES end up coming back. Does that make sense?

You also have the option of starting Kadcyla (or Neratinib) and not doing the full 14 cycles. If you read through here you will see some women and their MOs count Herceptin doses towards the 14 Kadycla doses. I did find in an appendix to the KATHERINE trial that the study investigators chose 14 to be sure everyone in the trial got at least a year of Herceptin.

MinusTwo

NotToday - I had similar stats and also did not have pCR with TCHP chemo. So after surgery I had AC before rads & before continuing Herceptin. I asked my MO about Kadcyla - which was new at the time. He said we should save "the new big guns" for later if needed. I was older than most of you, but still wanted to throw everything that I could at the beast. That said, I have now been NED for 7 years.

morrigan_2575

NotToday - I handle Kadcyla really well but, there are people that have issues with it. I can say that I've seen people fallback to HP or just H if they can't handle Kadcyla. If it would make you feel better/safer to do Kadcyla you can always try it, for a couple of cycles and, if you get bad SEs go back to HP and finish out the year.

Best of luck and congratulations on an almost perfect response

morrigan_2575

Anyone hear about Kadcyla and the San Antonio Breast Cancer Symposium? On my Facebook group one person said her MO told her that coming out of SABCS we might not have to do 14 Kadcyla on top of whatever Herceptin we have in the bank. Basically they're now saying it's a combination of both Herceptin/Kadcyla

YesIamaDragon

Interesting. I suspect I will still get # 14 this week.

I have been expecting the 5 year data to be release from the Katherine trial. Do you know if that came up at SABCS?

MinusTwo

Much of the info from SABCS is on the BCO home page. Can't remember if I saw these two questions, but many results.

Here's the link

https://www.breastcancer.org/treatment/blog/2020-s...

morrigan_2575

@YeslamaDragon - you're so close, I expect they'd finish it as well. I handle Kadcyla well so I plan on finishing (unless my.echo drops again). I just like having a backup plan.

I have not heard about any updates to KATHERINE

Fab4mom

I haven’t heard from my oncologist about San Antonio, but I would be interested to know. I was delayed to start Kadcyla, so I had 11 HP before the Kadcyla started, and she still wanted me to go for 14. So 25 total infusions. I am going for it, but would be happy to know it’s still effective if I don’t make it that far. She did attend, and I see her in January, so I’ll ask her opinion.

morrigan_2575

i can't find anything online, please let us know what your Onc has to say. It's funny, another person commented that their MO said new standard is more than 14 Cycles. I do see that quite a few people are given Kadcyla as if it's Herceptin (given 17-18 cycles of Kadcyla).

To be honest that doesn't make sense to me since Kadcyla is replacing Herceptin and in most cases people have already had at 6-7 cycles of Herceptin before the switch.

YesIamaDragon

I AM DONE!!!!!!!

Happy New Year!!!!!

WOOOO HOOOOOOOO!

morrigan_2575

Congrats Yeslama!

AngieB92

Congratulations!!!!! Happy New Year!!!!

YesIamaDragon

Thank you both! For one whole afternoon I have felt LIGHT and like I am DONE. We shall see when the anxiety about recurrence comes back But for now I am basking in this feeling.

YesIamaDragon

PS -- how long does it take for the thirst and dry eyes to get better?

Flowerkid

yeslamadragon

Congratulations!! Bask in the accomplishment!!

I am two months from finishing last dose and the dry mouth is actually decreasing. I have heard that it takes quite some time for all the chemo effects to leave your body and I believe that to be true. Not to be negative, but it helps me be kind to myself when still experiencing fatigue and such.

Of course I am taking tamoxifen so it can be hard to differentiate side effects...

Evergreenman

Hi all

Not sure if anyone has heard about the GP2 immunotherapy which seems to be another good news for the HER2 positive people. Just wondering if you have heard anything from your MO as I plan to ask next time when I see mine.

https://www.cancernetwork.com/view/gp2-immunotherapy-prompts-total-dfs-response-for-patients-with-her2-3-breast-cancer

morrigan_2575

that was a Phase 2 trial, they're planning a Phase 3 trial. Are you looking to get into a trial? I checked last week and still don't see it listed as recruiting.

The poster for their Phase 3 trial shows that your get the vaccine for 3 years (every 6 months) and then 2 years of monitoring. I'm guessing this will take 7+ years to get to market, assuming Phase 3 trials are successful

YesIamaDragon

I will be interested to hear if anyone joins this vaccine trial!

How is everyone doing with Chemo-brain and fatigue? I am really struggling at work just when workload is at an all time high.

morrigan_2575

I'm trying to get into a Phase 2 Trial for HER2+ Vaccine (DC1 vs WOKVAC).

I would love to get into this Phase 3 trial but I'm guessing by the time it's available I'll be too far out from Kadcyla/Herceptin. Also there's the fact that it will be a double blind study so there's always the potential of ending up in the Plecebo group.

YesIamaDragon

More than 2 weeks out. I still hurt all over, especially the upper back pain And am just starting to get my get-up-and-go back a wee bit, but still more tired and have less stamina than I would like. By far. And I am so looking forward to the drippy nose and dry mouth getting better! It should be soon I think?

I am glad these treatments are available now. But you all know, this is a very loooong road in hopes of preventing an even longer and more arduous road.

mtspacekace

Hi ladies. I will be joining the kadcyla crew, as I had residual cancer left after 6 rounds of TCHP. That, along with my age, grade 3, very close margins, multi focal, has made my treatment journey very aggressive. I will be starting radiation next week, for 5 weeks, and then starting kadcyla as well. I had a dmx with expanders Dec 16. Hoping that I'm healed enough to begin radiation, (my appointment with radiation oncologist is Wednesday) I have another ekg Thursday...and really hoping that I tolerate the kadcyla. I made it through TCHP, but I don't know if I can stand another 14 rounds... Has anyone on here done kadcyla and rads at the same time? How was the combination of side effecrs

morrigan_2575

i did Kadcyla and 25 sessions of Rads at the same time. It wasn't bad, fatigue was a bit more pronounced but, that's it.

Kadcyla has treated me well, I was dreading doing a year of Chemo but, it's nothing like TCHP.

AngieB92

mtspacekace - I didn't have rads but had 11 Kadcyla treatments (after 3 Herceptin only) and it was easy compared to TCHP. Fatigue is the biggest issue but really didn't feel it until the last couple of treatments

Gonae76

Hi! I’ve been on Kadcyla since August and have tolerated it well until now. Early on I had neuropathy in my fingers and toes, but we thought that could be lingering SEs from TCHP. Over the last couple weeks I’ve developed severe achiness in both shoulders and my neck area. Also it hurts when I raise my arms up straight - kind of pain and numbness together. I’m nauseous and teary. My vision seems a little blurry, too. Does anyone have similar symptoms? Thanks and God bless!