u/Perfect-Antelope-377

Hello! I'm new to this thread and am wondering if anyone did not go through radiation after treatment and DMX?

I was diagnosed with stage 2b TNBC on June 2nd and am will be starting my 3rd cycle of the 522 protocol today (phase 1 with keytruda/carbo/taxol). My ultrasound, MRI, and PET scan all showed a 2.4 cm lump with no evidence of lymph node involvement at diagnosis, but my doctor said I had to be stage 2b and not 2a because of grade 3 TNBC. I also have the BRCA1 gene mutation.

I'm wondering if it will be suggested for me to do radiation after DMX. I know that it ultimately depends on final pathology, but I was wondering if many of you have been able to avoid radiation, or if with TNBC it's something that is more necessary due to the nature of our type. It was only mentioned once at an initial appointment, and from what I remember, she made it seem like we would get final pathology and then decide based on risk.

Thank you!! 💕

I feel like it's really important to celebrate the small things when going through a cancer diagnosis, so I wanted to post today to celebrate that I am halfway through with phase 1 of my treatment, having completed 2 full cycles (out of 4) of keytruda/carboplatin/taxol. I received #6 out of 12 weekly treatments today!!

And... I was brave enough to finally feel my lump to see if there has been any change, and I was ecstatic to feel that it is much, MUCH smaller (feels tiny now). My lump was 2.4 cm upon diagnosis.

I'm also sharing for any newly diagnosed ladies so that they can feel some hope :)

TNBC is very scary, and there have been times where my mind has wanted to despair, but I've found that taking things one day at a time, surrendering my life to God and my faith, and celebrating the small things has been my saving grace.

Thank you to everyone in this group who has inspired me to cling to hope during the dark times 💗

My mind is now trying not to get discouraged about phase 2 with AC, which I've read is a beast.

Hi! So after I finished round two of cycle 1, my WBC went slightly below 1 (neutrophils at 800). I had week 1 which was all three meds then week 2 of only Taxol. They let me have round 3 today, which was only Taxol, but said from now on I have to get a bone marrow booster shot on Mondays and Tuesdays for the remainder of this phase. My onco nurse said to take Claritin everyday for bone pain. Is there anything else that would be helpful for me to know? She said they are waiting to see which booster the insurance will cover (neupogen or another bio similar kind). Im completely bummed that my counts tanked low this early in the phase. 😔

After 12 weeks of Keytruda, Taxol, and Carboplatin, what happens between last dose of Taxol and next phase of chemo? Is there a break before switching to Keytruda and AC? Do scans get taken? I know my onco probably went over all of this with me at the start, but I was so overwhelmed that I can't remember.

I've done 2 rounds of chemo so far and am just looking ahead to my last treatment of phase 1 on Sept 18th.

I know some people start with AC before Taxol and am kind of bummed that I will be getting AC right after school starts back up as the Fall is the absolute worst for germs around my house.

Does everyone get radiation after surgery? I had no lymph node involvement upon diagnosis (clear MRI and PET scans) but am wondering if radiation is the standard.

Thanks!

I was looking over the protocol I was given for keynote 522 and saw that for phase 1 there is 4 cycles of keytruda (with taxol and carboplatin) then 4 cycles for phase 2 that also includes AC. Then it looks like after surgery there are 9 cycles of keytruda alone (a dose every 21 days). Does anyone's body ever tolerate that much keytruda??

I haven't read much about effects of keytruda (purposely to avoid unnecessary fear), but the random posts I read here and there where people mention keynote 522, I see ladies posting that they've had to stop it due to effects.

Just curious if there are many people who get all of the recommended doses... And if not, how many are truly needed to make a difference?

I posted a week ago about how after my first round of chemo the steroids made me so jittery and anxious that I felt like I was having panic attacks. This week, my doctor decreased the steroid dosage a little and then prescribed me low dose Ativan in case I needed help relaxing to sleep. It's a 0.5 mg dose but my nurse suggested cutting it in half to see how I respond to 0.25 mg. Ive never used Ativan before- how will it make me feel? Is it similar to Xanax or something different? I had been using a 0.5 mg dose of Xanax right after I got diagnosed to help my sleep, but my oncologist said he doesn't want me making a habit of Xanax so wouldn't refill it and prescribed Ativan instead.

Has Ativan been helpful for sleep? Thanks!

I just started treatment for TNBC and am also BRCA1+, so I know a DMX is in my future, and even though it's a good 6 months down the road, I keep being weirdly sad about losing my nipples! I dont know why, but it's really bothering me! The plastic surgeon said they usually dont try to save them. And then mentioned tattoos or prostethics...

Has anyone had their's saved? Maybe I should just be glad I can have reconstructive surgery, but oh man, I really feel sad about this. And I don't even like mine to be touched, lol. Anyone else??

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Had my first round of chemo on Friday (today is Monday) and yesterday I felt extremely jittery and anxious and like I was having panic attacks all day. It seemed to get worse after taking zofran. I took zofran and the compazine round the clock preventively all day Saturday and didn't have any of those feelings then. I woke up Sunday and took a zofran and then all morning felt on edge, jittery, shaky, and like I was having severe anxiety. Faded a little as the day when on then took another zofran 8 hrs later and it came back. Called my oncologist and he seemed to think it was the steroids and possibly the zofran interacting with the steroids too. Anyone else have this happen??? Am I going to feel this psychotic after every round? He said we may have to try some different anti nausea meds to figure it out but to avoid zofran for now to see if it helps. Im still jittery and shaky this morning but not quite as bad as yesterday.

This was not at all what I expected to feel like. Is this from the steroids??

Diagnosed with stage 2 TNBC. Had an MRI and the results came back with no additional findings beyond the original 2.4 cm mass. No signs of lymph node involvement. They recommended I also get a PET scan, so I'm having that done on Monday. Is that normal? Are they just being overly cautious? It makes me worried that they think they will find something else in my body. I'm trying to stay positive but TNBC is scary!

Thanks, everyone 💜

I'm 41, getting married in 11 days and got the call today that I'm likely triple negative. The Her2 came back unequivocal? My lump measured 2.3 cm and ultrasound of lymph nodes looked clear but I haven't had my MRI yet.

I am so scared. I have 3 kids (15, 12, 9) and everything online about triple negative is so scary. I know that treatment has come a long way but this fear is the worst! And now I'm even more scared about the MRI because I don't want it to be in my lymph nodes or spread.

Every time I look at my body or feel a pain or sensation, all I can think about is metastatic cancer.