TRIPLE POSITIVE GROUP

I hope all you are doing better.

Someone send me this link taking about new potential cures. Hopefully will be soon. What do you think about what is said ?

https://youtu.be/e-V_MDVgISo

Phelps128, that's so cute!!

Margun,

I also had bone loss. My bone loss was due to Aromasin + Zoladex, but my bone density has improved since I've been on Prolia (which is a med). Hope yours improves soon!

Mmcking3, my surgical path was slightly different from my biopsy path - biopsy stated my grade as 3; surgical path listed it as 2. I'm guessing it's between 2 and 3. That's the only thing that changed, though, but I did chemo after surgery, not before. I would be confused by so many differences, too, but could the Ki67 (measure of cell division) be due to the chemo hitting the fastest growing cells, and leaving the stragglers alone? This could maybe be the same phenomenon for the HER2+ cells, as they tend to be more aggressive, but I would have expected the need for Herceptin to really hit those. I'm just guessing here. Could be the same thing with the ER%, idk. What was your tumor's response to chemo?

mmcking3 - looks to me like the chemo worked in shrinking the tumor although I too am surprised in the HR2 disappearing.

Hi All,

Me again:).

I am on Day 10 of Cycle 2 TCHP. I just noticed I have a swollen lymph node on the right side of my neck (cancer is in left side). I believe it is my tonsillar LN, but maybe cervical. Is this something that I should have checked right away or something that I should watch for a week then call?

Thank you!!!

Any triple-positive gals done abraxane + Herceptin? And was it similar to Taxol in terms of side effects and effectiveness? My seemingly stable rash reaction to Taxol suddenly got a lot worse this week during #9 and I had to be given rescue meds. My oncologist is switching me to abraxane for the last 3 doses. I know there's a major shortage and it's horribly expensive so I'm very grateful that they were able to get a supply for me and that my insurance agreed to cover it. But I get very nervous about any kind of changes to a plan!

This is putting me off Hylecta as well. My skin has been getting increasingly bonkers and so far the Kanjinti infusions are the only things not causing problems. Despite the convenience I'm worried about how my skin would react to a lengthy painful subcutaneous injection and hesitant to make changes. I have another meeting with my MO on the 30th where maybe we can discuss that more, in addition to my questions about tamoxifan vs. OS/AI, and Nerlynx.

Thought this might be of interest - https://www.washingtonpost.com/technology/2021/12/21/mammogram-artificial-intelligence-cancer-prediction/

Thanks, SpecialK. I am also getting relapsing rashes, usually the night after chemo and the following night, and hot showers do seem to bring it out again too. They aren't itchy and don't appear to be causing issues, though the one this Friday night did start creeping up my neck and face. And we thought the immediate Taxol infusion rash was stable until suddenly it wasn't. So I don't know. I've also become allergic to Tegaderm dressings and this weekend my arms broke out after taking Sudafed PE, which was bizarre. Sometimes the Zoladex implant also seems to be causing spots. I just feel like my immune system has gone nutso and if the Kanjinti isn't causing problems I don't think I want to switch to something that might, even if it is a bit quicker.

First abraxane tomorrow. I hope they are still planning to pre-medicate me, because while I have high hopes, you have a good point that we aren't 100% sure if it's the Cremophor suspension or the taxane itself causing the issues. I also just made my appointment for my initial radiation consult, which..AGGGHGHH.

Well, I went in today determined to request pre-meds with the abraxane but my MO assured me it would be fine without it so we gave it a go and she was right. No reaction at all. Also wasn't given famotidine as I was assured I didn't need that either. We'll see. Fortunately, if that turns out to be wrong, I have a big bottle of Pepcid at home and can easily correct the problem after the fact.

I have never done this without pre-meds so I have no idea what to expect this week as there won't be the "honeymoon" period. The Herceptin infusion gave me a slight headache which I hadn't noticed before. I am also hoping this means the end of steroid insomnia and all the flushing and acne.

I can't wait to get my next EOB to see how much the abraxane costs in comparison. Because for all the hours and meds and rigmarole we have gone through trying to get the Taxol into my body, to suddenly be given this option that requires none of that is pretty mind-bending. Literally the nurse turned it on, it ran 30 minutes, she flushed the line, and I went home. They need to figure something out so that this is a first-line option for everyone. Absurd.

i had a follow up with my Onc on Wednesday. I'm pushing for Nerlynx, he doesn't think it's necessary. I understand the hesitancy, there is 0 study of Nerlynx after Kadcyla, so there's no guarantee that there is any benefit or if the benefit is substantial enough to overcome the side effects.

He said, he's not 100% opposed if I want to do it. He'll see if my insurance will cover it, since it's after Kadcyla AND I would be starting 11 months after finishing Kadcyla.

So far I've done 6 TCHP, 1 HP, BMX, 25 sessions of radiation, 14 Kadcyla, Tamoxifen and, I'm involved in a vaccine trial to prevent HER2+ recurrence. After all that, Nerlynx might be irrelevant and overkill. However, if it comes back and I don't do Nerlynx, I know I'll be hating myself because I didn't do everything available to me.

Part of me says, just give it a try, I tolerated everything else really well so I might handle Nerlynx well too. The other part is saying you've been out of active treatment for 8 months now and feeling pretty good, do I really want to get back on a drug that can do some damage?

Phelps - the trial is going really well. I've had my 2nd booster already, I go for the final one in March. The Side Effects are minimal, a fever, chills and some body aches a few hours after injection. Normally goes away with Tylenol and back to normal the next day.

The only downside is the DC-1 vaccine is very intrusive, they have to inject right into the lymphnode and, since most of us have had lymphnodes removed from our arms, they use the groin.

It would be nice if Enhertu gets approved for Early Stage. I'm not sure where they are in testing. I think there's normally a few years between MBC approval and Early Stage approval.

If anything I think Enhertu might replace Kadcyla but, that is a long way off.

Thank you!!

morrigan- I know that they are doing a trial now for early stage adjuvant open-label Kadcyla vs enhertu. I am going to try to get on this one or vaccine trial if I don't have a PCR.
Im glad the vaccine trial is not too bad on you. I read through the consent and saw the groin lymph infusions.

1982M- I will look at the literature. I need to learn more about the subtypes. Thank you for this

i am so sorry you’re feeling this way, gamzu. This diagnosis and treatment process sure derails life plans and makes things seem so …. Frustrating that we are not as easily able to go on with the way things were or the way we wanted. More out of control in our life… everything feels like we have less time. Less power.

Even taking back the power we can have, in little and big ways, can give some consolation but we have a lot of loss to deal with.

Thanks, guys. I think the support group is going to be helpful; the session last night was good. I may join the one specifically for young people, too. I'm sure I don't need to tell anyone in this thread, but 34 and a BC patient is a lonely place to be. I also joined the Young Survival Coalition group on Facebook.

I had my initial radiation consult today and the plan is 19 sessions: 15 radiating the whole breast and 4 focused on the tumor site. The RO wants to do it in the prone position, to better protect my lung and chest wall. I want that too, but remembering how uncomfortable MRIs have been lying in that position, I'm not too enthusiastic. Having my arms curled up above my head that long gives me numbness in some of my fingers and shoulder pain. Hopefully because it's shorter than an MRI it should be better, but ugh. The planning session is next Friday and then I guess we start after that, though the RO said we could take an extra week if I needed a break. I have my first Herceptin-only infusion tomorrow, and my 3-month echo on Friday.

This just seems never ending.