For ER+/PR+/ HER2- Did chemo shrink your cancer?

ducky06

Hey everyone!

I am pretty new here. I am about 9 weeks into Taxol with 3 weeks to go, then I'll do 8 weeks of Adriamycin-Cytotoxan. I'm on a clinical trial and I'll have another MRI scan soon. So I was wondering, could you feel your tumor get smaller or go away during chemotherapy? If so, when in your treatment could you notice it? Did you have cancer left at surgery in your lymph nodes? I am anxious to see how my cancer has responded to the treatment. When I was staged, I had a rather large multifocal tumor about 8x9cm (not a golf ball, but like tendrils of tumor with the largest focus being 3 cm) and they suspected three lymph nodes in the armpit. I've noticed my breast is a bit softer and smaller, but no drastic changes so far. My doctor says she thinks my response so far is good.

I am interested in experiences of folks with ER+/PR+/HER2- pathology.

Steph

Redkitty815

I am so interested to see replies to this because I have spent the last few days wondering what a good response is and honestly getting in my own head about it.

I have ER+/PR+/Her2-, grade 3 cancer with (we think) 1 node involved. I just had an MRI, one week after finishing the same chemo regimen you are on plus a clinical trial immunotherapy drug/placebo. My cancer did shrink—about 40% in each dimension in the primary tumor and more than 60% in the node. Let’s be honest, I was hoping for 100% gone, but that may not be realistic, especially with 90+% estrogen-receptivity. I just don’t know what a good response looks like (I am going to ask my MO when I see her).

My surgeon’s note with the results was “Great news,” but she also confirmed that I will definitely be getting a mastectomy and not a lumpectomy.

So anyway—good luck! Softer and smaller are good signs!!

ducky06

Hey Redkitty,

Thanks so much for the well wishes! That's so cool you are on a trial. Were you on the Phase 3 pembrolizumab trial? Do you get to find out if you were placebo or drug? I couldn't get on that one because my biopsy returned Grade 2 (though I'm curious if they'll confirm that at surgery), but I am on the I-Spy 2 phase 2 Clinical trial and I'm in a new arm taking a "new" PD-1 inhibitor made by a different company, Regeneron, in combination with Taxol. I just got my last dose today and in 3 weeks I move on to AC. (On its own, just the standard AC.) My trial drug is called cemiplimab and it's supposed to have basically the same efficacy and side effects as pembrolizumab. The company Regeneron has some other combos they are trying (like cemiplimab + antibody conjugate + Taxol) so they presumably want to elbow their way into some serious market share in the immunotherapy market. If they could beat out Merck (makers of pembrolizumab) for the early stage breast cancer market that'd be huge! I am sooo curious for all these results. We need to find the next big breakthrough for HR+ cancer!!

My oncologist also told me that complete responses are not typical with HR+ cancers. But I know when Pembrolizumab was tested in I-Spy, they saw a 3 out of 10 women with HR+ cancers had a complete response, compared to 1 in 10 on Taxol + AC normally. So, that's something!

When do you have your surgery? Did your oncologist mention anything about the fact that you can't totally tell response from imaging? Mine mentioned today that is the case and that sometimes you will have dead tissue left over, so the response is greater than it seems from imaging. She said the only way to tell for sure is when the tissue is assessed pathologically at surgery. Bummer to have to do the mastectomy... I am going to have to do mastectomy too and I am not looking forward to it! But it will be ok with time I feel

Let's stay in touch! It sounds like we are in a similar place with things!

I'm also going to keep an eye on this thread, I am very curious what sort of responses people have gotten in the past!

Steph

Newnorm

Hi ladies

I had a huge tumour and mine could not be felt or seen on MRI after chemo, but surgery found there was cancer cells still there in breast and lymph nodes, however after about 3months of chemo I could feel it shrinking, and by the end of 6months of chemo I couldn't feel it at all. It's unusual to get PCR with ER/PR+ cancer. Even after they throw everything at you during active treatment there is still hormone treatment after that, so there's still more help in the fight. Hang in there

ducky06

Thanks Newnorm! That is interesting to hear your experience. Great to get your perspective.

Flo80

Hi there,

I had a tumour of 5.2 cms and done lymph node involvement. After 4 cycles of Ac and four cycles of dose dense Taxol my tumour did shrink and the MRI before my surgery had shown that my tumour broke and no lymph node involvement but my pathology report showed 3 cm residual tumour and 8 positive lymph nodes.

Your oncologist will order a scan before surgery to see how much the tumour has shrunk but the real result will be after your path report comes back. If you are getting g positive changes that means chemo is working and Adriamycin will even shrink it more. My her2 changed after masectomy so I am getting herceptin and perjeta now. I wish AC shrinks your tumour entirely. My oncologist told me that estrogen positive tumours don’t usually achieve PCR but I have known some who did. Best of luck and I wish it goes completely for you.

Regards

Flo

Divergent

Hi Ladies it's good to see some of you are also doing clinical trials. I had a mastectomy and unfortunately they found quite a bit of cancer left. I thought the mass felt quite a bit softer\smaller before the sugery though. It ended up being multifocal which my MO said was due to the chemo destroying the cancer cells within the mass. I was really disappointed but as Newnorm said it's unusual to get pCR with HR+. I wish you all luck!

Redkitty815

Hi Ducky06,

i would love to keep in touch through this as it sounds like we are going through something similar. I love finding fellow guinea pigs—and I hope somewhere in all of this, they do find the next big thing for HR+ cancer. I am doing the Merck trial, which is the same as Divergent, it looks like. We don’t ever find out if we’re trial drug or placebo, but I always ask the nurses to guess. They totally won’t bite though .

Divergent, I am so sorry to hear that you had residual cancer! I hope all the other arrows in the quiver take your cancer out for good. I had what felt like great results in my clinical exams-the lump softened from the get go and was barely palpable by the en. My node (which was massive) got a little smaller with Taxol and then couldn’t be felt after AC, but as I said in a previous post, it’s definitely still visible in imaging. I am hoping that the AC hadn’t done its full thing when I got my MRI, that there were lots of dead cells that came up on imaging and that when I do get to surgery in early June, the pathology will be more favorable. Hanging on to optimism and hoping we’ll hear some more stories with good outcomes even without PCR.

ducky06

Redkitty, sounds great- I'm sending positive vibes your way for your surgery.

Here's to good outcomes for many, even without PCR!

sbelizabeth

My inflammatory breast cancer presented with a 3-4 inch circle of skin that was pink and had peau d'orange texture. Investigation revealed a tiny lump under the "umbrella" of skin.

Chemo reduced the pink spot and faded the color to a smudge-looking area, but it was still there.

The mastectomy margins were cancer-free The lymphatics of the skin area on the breast, however, were still chock-full of cancer emboli. My MO said don't worry, it's no longer on your chest, it's in a jar on a lab shelf. I've been NED for many years now.

ducky06

Yay for NED, Elizabeth!

hray1993

I am also on a clinic trial. The I-SPY clinic trial. I'll have to look back and see what phase I'm on but I received the pembrolizumab and SD-101 injections directly into my tumor. I did receive the actual drug and not the placebo. Along with 12 infusions of Taxol. When I was diagnosed my tumor was 3.5x3 cm and when I started chemo it was up to 7x7 (per physical exam) my oncologist said it could have grown or it could be scar tissue from biopsy. As of now last it was measured by physical exam it is 3x3 so not much change from original size, but it did feel a lot smaller and not as firm. We could move it around a good bit. To me though, this past week or so it feels like it's gotten bigger and for sure more firm so I'm anxious to see how it's measuring when I get my MRI and biopsy done the 15th. I'll be starting 4 rounds of AC after those tests. When I first met with my doctors I was told it was my decision whether I wanted lumpectomy or mastectomy. At the time I was dead set on mastectomy and wouldn't even consider lumpectomy but now I'm kind of open to both. Did anyone else get told it was up to you which one you did then later after imaging, got told that you would for sure have the mastectomy? I have no active lymph nodes. I did have an enlarged lymph node at time of original biopsy but it was biopsied as well and came back negative.

Misstic

I had 6 tumors + 1 node. I had a totally unusual chemo : Navelbine + Gemzar because of a low Ki67 (7% for the biggest tumor).

My 3 months scan showed 50% reduction of the biggest tumors, 2 tumors disappeared. Nothing changed about the node

3 months after : no significant reductions anywhere on scan. Pause of 4 weeks then surgery => no cancer left found !! The node was perfectly normal, not 6 mm but 2mm, not even a cancer cell in it (they cut off 11 nodes for that and as result, I now have lymphoedema). All tumors had vanished.

I did keto diet during the chemo.

MO still trying to figure out what is this very strange cancer because I had a recurrence one month after finishing radiotherapy. Doctors are currently performing a genomic analysis of this new tumor which behaved bizarrely: it was a fat cyst with "very rare" cancer cells.

My conclusion: sometimes MRI, scans and mammograms are not exact science.

dizzywombat

I also had neoadjuvant AC+T chemo, although I had AC first. This was also my biggest question for my MO: how much of a response should I expect? They kept telling me is varied by person, which is true but a frustrating non-answer, so I'm very interested in the responses here!

Here is what my progress looked like on ultrasounds:

• Tumor was initially 3.8 x 3.2 x 1.4 cm
• After 2 AC treatments I could definitely feel a difference myself: 2.9 x 2.4 x 1.2
• After 4 AC and 5 Taxol: 2.6 x 2.4 x 0.8 cm
• After 4 AC and 12 Taxol: 1.3 x 1.1 x 0.4 cm area of residual architectural distortion, and all lymph nodes regained benign sonographic appearance (5 axillary and 2 supraclavicular)

My pathology from my surgery on 4/22 showed only microinvasive carcinoma left in the breast tissue and only one axillary lymph node had isolated tumor cells. My BS and MO were both very surprised that I had almost a complete response from chemo since I have ILC.

Good luck with the rest of your treatment, Ducky06!!

jelloelloello

Hi! I'm joining this thread to follow it because I am also in a similar situation. Thanks to all of you that shared your experiences so far!

Like Steph (ducky06), I have almost the same diagnosis and chemo plan, except that my tumor is large (>10cm) and Grade 3. In chemo now-- Taxol first, then AC. I just had an MRI after the 4th or 5th session of Taxol (out of 12), and no noticeable changes to the tumor so far, but none were expected as it's so early.

Like hray1993, I am in the I-SPY trial. I'm getting Libtayo as an immunotherapy treatment, in addition to the AC-T chemo regimen.

Hoping for tumor reduction, of course. But regardless, I am planning to have a mastectomy and lymph node removal after chemo.

ducky06

Thanks to everybody so far!! It's great to meet so many folks with HR+ who have been through or are going through something similar. I am getting an MRI next week (also for my study) so I will be interested to see if my mass has changed at all or not. Like Jello it also had not changed after my 4th Taxol but it was early then to tell.

Legomaster225

Ducky, I had AC first then 12 weeks of Taxol and one positive node pre chemo. My tumor may have gotten softer during chemo but definitely could be felt and was about the same size on my presurgery MRI. After surgery the pathology showed a 3.5 cm tumor bed but less than 5% of the cells were viable cancer cells. Also, the node that was biopsied and positive before chemo was cancer free upon removal. Not a complete response but a darn good outcome. I have hope that the chemo killed any other cancer cells floating around as well. Good luck with your scans next week.

jelloelloello

Thanks, Legomaster225– that’s really good to hear! Positive stories give me hope and something to imagine for myself. I‘m also hopeful that neoadjuvant chemo will make a difference.

hray1993

I just Talked to my doctor about my scans I just got. He said my tumor has grown. The previous mri was 2.9cm and the mri Friday it was 5cm. He said it seems to have built up a resistance to the taxol chemo but we are started AC chemo on Thursday and he's pretty sure that will knock it down but that we will be on high alert and if it seems to get any bigger during AC then we will stop and go straight to surgery.

I’m so glad so many people seem to be getting good results and praying the AC does it’s job with mine

Flo80

Hi hray1993,

I am so sorry you have to go through this. I had AC first and my tumour reduced a lot and then with Taxol I did not find much difference. AC will definitely knock it down. My prayers and good wishes.

Regards

Flor

hray1993

thank you so much Flor! We will see.. i go Thursday for my first AC. I’m pretty scared about side effects with it to be honest. Or having a reaction. I had reactions with taxo

ducky06

good luck hray! I also hope AC works well for you! I'm scheduled to start AC tomorrow - will be thinking of you! I actually *just* did my study MRI as well (like I'm in the waiting area post-MRI) and I will get results tomorrow. We can do it together!

hray1993

Ducky, I hope everything looks good on your mri! What time is your chemo scheduled for tomorrow? Mine is at 11am. Maybe we can check in with each other during/after. I'll be praying for you tomorrow as well

ducky06

thank you !! Yeah!! Let’s check in Mine is at 10 am Central tine

hray1993

mine is central time too. I meet with my oncologist at 10 but when I’m done talking to him I’ll check in! The Neulasta bone pain is scaring me..

Maryjv

Hi Hray! The AC is definately gonna knock it down! I had AC (4 doses) and then was only able to complete 3 weekly taxol because of the side effects. I did not think AC was too bad..just fatigue and inability to sleep on day 2 from steroid. The neulasta did cause some bone pain but make sure you are taking Claritin and Pepcid to help minimize pain-they really helped me! Good luck tomorrow ladies, you will get through this and remember it’s just temporary🙏❤️

hray1993

thank you Mary! If you don’t mind me asking what premeds do you get with AC?

hray1993

maybe this is a stupid question but how do you know you have bone pain? What does it feel like and which bones do you get it in

Maryjv

The bone pain was mainly in the torso area-ribs as well as the back. The meds I was given were the steroids via IV and oral meds were the Claritin and Pepcid (starting day before chemo and cont for 3 days after infusion). The bone pain I felt was only with the last two infusions and not too bad...also can take some pain Meds if needed. But def ask your MO regarding the possibility of adding Meds to help with bone pain if they didn’t advise you to take them! Hope you don’t have too many side effects from AC but just know you will get through it🙏❤️

Maryjv

Oh I also got Benadryl and anti nausea med via IV before infusion

hray1993

you didn’t get steroids?