TRIPLE POSITIVE GROUP

My ANC bounced back this week to 3.0, very close to what it was 2 weeks ago before it took a dive. No idea. what the deal is but happy.

Yet another Taxol rash, though, this one all over my chest and abdomen within 10 minutes of the infusion starting. I already posted about in the Weekly Taxol thread but it dragged things out as they had to stop the infusion and watch me for 30 minutes, then restart at a slower rate and titrate back up. They were thinking about more steroids but it eventually faded on its own before they had to. The rash didn't reappear the second time even at full flow so we have no idea what's going on. It's clearly some kind of skin reaction to the Taxol but seems to be transient and not a real allergic reaction.

Hopefully next week will be better. Being the one the nurse is constantly watching and coming over to check my face and under my shirt every 4-5 minutes isn't very fun.

Hi ang7894. I too, hope your issue has resolved. A few months after my initial surgery, I developed a rash on my affected breast. At first, we were just watching it. Then I was sent to the original surgeon, who basically said, "Don't worry. Be happy." Yeah - no that didn't cut it for me. The breast area got redder and more painful. I suspected, like you, IBC. So I went to a Breast Surgeon specialist office, and they at least did an ultra sound and an punch biopsy. It came back fine. But that didn't help my problem and I ended up with the peau d'orange that is often found in IBC. To make the long story short, it took 10 months to have my issue definitively diagnosed and to start treatment. It turned out to be breast lymphedema and I saw two "experts" and it was the second person who diagnosed it and found the right treatment for me. I had to drive a ways to find a therapist who knew what they were doing and was in my insurance network, but oh, the difference!

So, if your issue hasn't resolved. First, you need to rule out IBC. Then, you might want to consider lymphedema as a possible source of your issue. Breast lymphedema is not that common, but I would say it is not uncommon. That is why you need someone who knows something about breast lymphedema to tell you if that is your issue. It took awhile to find out what worked for my lymphedema, but now it is not really an issue. Although, when it is humid, or very cold, or I eat too much salt, the problem can rear its ugly head. Also, I don't carry heavy bags with just my left arm, because that can cause a flare up, too.

Good luck, ange. Let us know how you are doing.

Very interesting stuff, 1982M, thanks. I see my MO in 2 weeks, maybe I will discuss Nerlynx with her too. I also want to have a discussion about what I've read about the effectiveness ovarian suppression plus AIs vs. just tamoxifen, though it might be a bit early for that. And Herceptin infusions vs. injections after chemo is done. Theoretically the injections sound more convenient but the long-term study data of comparable efficacy just isn't there yet. I only saw over 6 years. 6 years is nothing in the world of breast cancer where recurrences can happen 15-20 years out.

It does look like Nerlynx causes a lot of GI side effects, which gives me a little pause. Did your MO talk at all about that?

Thanks, 1982M. Giving that thread a read and bookmarking your article and a few others to show my oncologist. It sounds like something that's worth trying. The potential for GI upset is always a concern for me because of my weight issues (though I've been maintaining nicely on Taxol so far and have even managed to gain a couple pounds) but you're right, there's no harm in giving it a go. It's not like you can't stop. Hopefully the insurance companies agree? Mine has been great so far but that's always an unknown.

ang7894, so glad to hear it turned out to be infection (the lesser of evils).

Hope you heal well!

So glad to hear! I hope it clears up fast

Phelps128 - I saw my oncologist or oncologist NP every visit (every 3 weeks)so they went over any test results during the visit. When do you see your oncologist next?

Phelps128 - call them for test results rather than waiting. They may discuss with you ahead of time.

Hi everyone! Checking in to see how we are all doing.

I am offering up either some information for you all to watch out for, or to say please say prayers. Not sure which.

My plastic surgeon orders an MRI (no dye) every two years to check the implants. I had the MRI on the 19th. Implants are fine. However, they called out the following.

There is cortical thickening of a right axillary lymph node measuring up to 0.7 cm in thickness. Right level 1, 2, and 3 lymph nodes are increased when compared to the prior examination. For example there is a right level 3 lymph node measuring 1.1 cm.

Small left axillary lymph nodes are noted without pathologic enlargement or suspicious cortical thickening.

IMPRESSION:
1. Intact bilateral subpectoral silicone implants.
2. Prominent right axillary lymph nodes, possibly accentuated by MR technique, for which dedicated right axillary ultrasound is recommended with correlation with recent vaccination.
3. Enlarged right level 3 axillary lymph node for which correlation with the recent vaccination is recommended. If the patient has had a recent right code with vaccination, a short-term follow-up examination with a chest CT in 3 months is recommended. If the patient has not had a recent Covid with vaccination, a PET/CT is recommended.

I had my Covid Booster on October 28. Apparently it is is a thing that is messing up breast imaging and causing unnecessary testing.

So my Onc. called immediately said she believes it is vaccine related, but I am having an ultrasound on the 16th to see if things have improved. PS said the same. Breast surgeon called to say don't freak out.

So either I should have waited on the MRI, or I am going to be losing a lot of valuable time if this is something else that is really bad.

Hi, Phelps128, this was me in March. I'm still in it with you, just several months ahead of you. You are strong, too, even if you don't feel like it right now. I've realized that I can feel fragile and strong at the same time. Strength comes in allowing yourself to feel what you feel and continuing to put one foot in front of the other. Reach out if you need support. I'm not on here too often, because I often find that I get overwhelmed (even though people are incredibly supportive!!!)--it's just that I end up going down the rabbit hole and making myself more worried than I need to be (that's why I haven't been on social media in years). But I think I'll get an email if you reach out to me directly.

So, I did TCHP for 6 infusions, then a lumpectomy, then 6 weeks of radiation, and now I'm on Kadcyla (I've had 4 or 5 infusions--I've lost track of the number!), and just got my first Lupron shot. I start an AI in 3 weeks or so. (I'm not quite in menopause yet but going on Tamoxifen would interact with my psych meds, and I really don't want to change them!) TCHP was hell for me, but I'm SO glad that I got it done with first. It definitely got rid of all the cancer in my tumor completely and got rid of the cancer in 5 out of 6 lymph nodes. The surgery and radiation were fine--just a bit of discomfort. Kadcyla is now starting to bother me (well, we're trying to figure out if my GI symptoms are because of it--seeing a gastroenterologist tomorrow and then I'll decide with my team on Friday if I should continue on Kadcyla or just got to Herceptin (with Perjeta? Not sure yet of the protocol). Last week was the first time that my WBC were too low for my oncologist to give me the Kadcyla infusion. My sudden onset of GI issues like the ones I had on TCHP have caused me to lose 12 lbs in 3 weeks. Something is definitely going on with me, and I'm hoping to get some relief soon. As I write all of this, I can't even believe how much I've been through since March! As you know more about what your treatment process will be, feel free to share it here.

I'll be thinking of you as you make your way through whatever ends up being your process.

Sorry to hear fluffqueen01. It sounds like your team is on it and hopefully related to your vaccine booster! Please keep us updated.

I don't have answers for you Jam, but again- sorry you had such a poor reaction. 12lbs is a lot.

Phelps- Hope your PET scan turns out well! I only speak to my team every round - so every 3 taxol doses. I have online access to most test though so I can see what they say. Im glad you will call for results.

@JamG: Yes, I actually started with horrible constipation and lack of appetite during TCHP (yes, even on Perjata), then it improved some but on Kadcyla my appetite was terrible, and the constipation continued, though not as painfully as during TCHP. My GI system at 1 months post last Kadcyla is still not what I would call normal, but much much better.

I have to say I haven't been quite this paranoid for awhile for sure.

fluff - keeping fingers crossed it is just your booster!

sorry haven’t posted to say thank you to all of your replies! I started to feel better from my first tchp cycle for the last 10 days and spent that time with my son and husband. So thank you again...appreciate all of the response.

fluff- I hope you are doing well along with everyone else!

My husband and I made a Rudolph Christmas tree in the week that I was feeling better. My son Kaden