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Topic: Halfway though neo-adjuvant chemo - not working

Forum: Mixed Type Breast Cancer — Meet others who have mixed type breast cancer.

Posted on: Aug 26, 2020 11:42AM

Susiemommy wrote:

Hi all. Just looking for other people who have gone through this or are going though it and how they handled it. So, I was diagnosed a couple of months ago now with IDC with lobular features - estrogen positive, HER2 negative -with a very high Ki67 (85). My treatment plan so far has been neoadjuvant chemo (just finished 4 rounds of AC) and I am to start 12 weekly rounds of Taxol next. The hope was to shrink the tumor for a breast conserving lumpectomy. I would have preferred a mastectomy first, but what do I know? All through the past several weeks, I have doubted that the chemo is working as the tumor feels just as big as ever. This was just confirmed by ultrasound. Non-response to chemo - but no bloodflow that they could see. I've just read - or been reminded - that lobular can't be detected well with ultrasound and asked my oncologist if I should be having an MRI. I got the same answer as I get to most things - not to worry too much about it. I don't care for that answer. I am worried about it. I did not get a second opinion up front but am considering getting one now as I feel like if my tumor was not responsive to AC chemo, why would it be to another kind (Taxol)? Shouldn't I be having surgery ASAP to get this thing out? Has anyone else had a different path to deal with this kind of aggressive cancer or changed treatment plans midstream? Really just want to hear what someone else did to manage it. Thanks!

Dx 6/17/2020, DCIS/IDC, Left, 2cm, Stage IIIA, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 7/7/2020 AC + T (Taxol)
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Aug 26, 2020 12:00PM moth wrote:

" if my tumor was not responsive to AC chemo, why would it be to another kind (Taxol)? "

So, one thing to understand is that all these drugs have different mechanisms of action. Adriamycin interferes with DNA transcription, cyclophosphomide essentially forces DNA to fold in on itself and leads to cell death. Taxol targets tubulins which form when a cell is about to divide and it prevents cell mitosis. The whole point of using various chemos is because they act on different phases and processes of cell division. So just because something did not respond to one, doesn't mean it won't respond to a different type. Did you have Oncotype done?

If you are uncomfortable with your care team, you could consider a second opinion. I believe we have to really have a good rapport and trust in our oncology teams. just fyi, there is no documented overall survival benefit to lumpectomy + rads over mastectomy so while it's often our natural inclination to just want to get it all out, there are reasons doctors sometimes recommend lumpectomy. It's a much smaller & less risky surgery with much faster recovery. "Lumpectomy followed by radiation is likely to be equally as effective as mastectomy for people with only one site of cancer in the breast and a tumor under 4 centimeters." https://www.breastcancer.org/treatment/surgery/mast_vs_lump


Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Aug 26, 2020 02:31PM BlueGirlRedState wrote:

It is so hard to know which way to go on treatment, especially since there is no guarantee. In 2016 I was diagnosed with cancer, again, in the Left breast. Left breast dense, right breast normal. In 2009 had a lumpectomy, radiation, and tamoxefen for 5 years. In 2016 it was TC chemo and bi-lateral. Oncologist wanted to add a 3rd drug to the cocktail, saying it was much more aggressive, but she thought I was young and healthy enough ( 58 yrs) to tolerate it. When I found out that the third drug causes heart problems in about 10%, I said NO. Bi-lateral was my choice vs single. After chemo I was told that it really had not done much good, almost no shrinkage. No reconstruction. I had done the Oncotype, which suggested that chemo might be beneficial. Started anastrozole, generic, but SEs, so switched to Tamoxifen. 2019, cancer again, this time the R-axilla. They cannot get all of the breast tissue, it it found some. All cancers strongly ER+, not PR or HR2.

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Aug 27, 2020 03:56AM Susiemommy wrote:

Thank you, moth, that is extremely helpful to note/remember about the different drugs! I feel like I've learned and forgotten so much stuff about cancer and treatment, I just can't keep any of it straight anymore, I just had zero experience with cancer until this - no one in my family has had it, so I am a rarity. Yes, I had the Oncotype test done (I had to really push for it). I think my score was 44. I'm supposed to start Taxol in a few days, and I'm just anxious about a new, fresh hell. AC really took me out. How are you doing now with a new round?

Dx 6/17/2020, DCIS/IDC, Left, 2cm, Stage IIIA, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 7/7/2020 AC + T (Taxol)
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Aug 27, 2020 04:00AM Susiemommy wrote:

BlueGirlRedState, I worry so much about heart damage too! Seems like it is a possible side effect of everything! I'm a runner, so if my heart gets messed up, well...I don't know what I would do, (Love to put something clever there, but chemo brain.) How are you doing with your new bout? Did you choose not to have reconstruction or could they not do it because there was more cancer? Are you still taking the Tamoxifen?

Dx 6/17/2020, DCIS/IDC, Left, 2cm, Stage IIIA, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 7/7/2020 AC + T (Taxol)
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Aug 27, 2020 03:11PM BlueGirlRedState wrote:

Susie - there is just no guarantee. I was told that having it for the 3rd time, is unusual, thought the cancer itself is "Straightforward"...... what ever that means. Oncotype suggested that I would benefit from chemo, but it did not shrink the tumor prior to the bilateral (this was the second bought). Now I wonder, since I was having a bilateral, was there any need to shrink the tumor and go through all the risks and SE of chemo? I chose not to have reconstruction. At the time I went to another state for consulatation on DIEP. Turning love handles into boobs sounded like a good deal. But I was not a good candidate. I am now taking Ibrance and Arimidex. As questions about the chemo drugs, benefits, risks, potential SEs, options on the cocktail. Tiffany posted this for getting through chemo. Check other blogs as well. Consider getting friends to sign up to help you out. Sorry you are going through this. https://community.breastcancer.org/forum/69/topics/839070?page=3#post_5485167

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Aug 27, 2020 04:18PM moth wrote:

susiemommy, fwiw I found taxol way easier than AC. I did 12 weeklies in 2018 and went camping the day after I finished.

This time round it's different as I also have immunotherapy iv and I was very fatigued for a while but now (after 5 months of continuous treatment)I'm doing way better 😊

I hope you find taxol a breeze
Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Aug 27, 2020 05:35PM FarAwayToo wrote:

FWIW, I had neo adjuvant chemo for a IDC-L with ki-67 of 40%. I was in a control arm of I Spy 2 trial, which had a protocol of 12 weekly Taxol followed by 4 AC. My tumor shrunk within 3 weeks of starting Taxol, and wasn't detected by MRI after I finished Taxol. I then had AC but still had i3 mm left at surgery. So who knows if AC did anything to the tumor. But Taxol certainly did!

Don't lose hope. Taxanes are powerful drugs.


Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Aug 28, 2020 07:13AM - edited Aug 28, 2020 07:14AM by Susiemommy

Thank you so much, BlueGirl! That post was super helpful in prepping for Taxol! Good luck to you too!

Dx 6/17/2020, DCIS/IDC, Left, 2cm, Stage IIIA, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 7/7/2020 AC + T (Taxol)
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Aug 28, 2020 07:15AM Susiemommy wrote:

Wow. FarAway, that gives me something to maybe look forward to with the Taxol. It's interesting that you had the Taxol first then the AC. Do you happen to know what the thinking was there?

Dx 6/17/2020, DCIS/IDC, Left, 2cm, Stage IIIA, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 7/7/2020 AC + T (Taxol)
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Aug 28, 2020 07:16AM Susiemommy wrote:

Thank you, moth. Me too. Good luck to you with your treatment as well.

Dx 6/17/2020, DCIS/IDC, Left, 2cm, Stage IIIA, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 7/7/2020 AC + T (Taxol)
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Aug 28, 2020 07:16AM moth wrote:

Susiemommy, there's a weekly taxol thread. Have a read through it and join in! Taxanes are different and have different side effects to prep for Good luck!
Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Aug 28, 2020 08:29AM FarAwayToo wrote:

Susiemommy, my chemo schedule was dictated by the trial. I quizzed my MO about it, and she said that there were several prior trials on the sequence of the chemos (AC first or Taxol first) and some trials showed that Taxol first, AC second was slightly better, but she wasn't convinced. She told me that Taxol -> AC was MD Anderson protocol, and AC -> Taxol was used more at some other big cancer centers. She thought it was a "battle of egos" and these schedules were equally efficient.

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Aug 28, 2020 08:57AM NorCalS wrote:

FarAwayToo,

Very interesting about the sequence of chemo drugs. I had AC then weekly Taxol. For me, AC was much harder with a lot of side effects (hand-foot, anal fissures, loss of appetite, shortness of breath, light headedness, low red and white blood cell counts, etc.) so I think it would have been harder for me to have AC after my body has been through Taxol (much milder side effects). It was a relief for me to have Taxol after AC

Dx: 06/2019, left breast, ER/PR-, Her2-. Treatment: 06/2019 - 11/2019 AC/T. Surgery: Lumpectomy with axillary dissection in 12/2019. Radiation: 01/2020-03/2020. Xeloda - 03/2020-09/2020
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Aug 28, 2020 09:51AM - edited Aug 28, 2020 09:53AM by FarAwayToo

NorCalS, I totally agree. Taxol (and Abraxane, as I was switched due to allergic reaction) were pretty easy. Fatigue, a touch of neuropathy on Taxol ( none after I switched to Abraxane), and hair loss were my only side effects. Coming into AC was like jumping under a train. SE were harder (nausea, stomach upset, heartburn) and mental exhaustion from already being on chemo for 12 weeks at that point.

Now add to it the fact my tumor seemingly disappeared, as no one could feel it and it was no longer seem on MRI. It was hard to keep doing it, but I was looking for scientific evidence when researching my treatment, and I read that taxanes alone were tested and not found to be enough, and I needed to do AC. I had no reservations about the C, it's the A with it's potential heart damage that gave me a pause. But I was hoping the AC was killing all the invisible cells that left the tumor. It's not just what we see with imaging or can feel that chemo is killing, it's all that we can't yet see that it's preventing from growing into something visible.


Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Aug 28, 2020 10:04AM FarAwayToo wrote:

Susiemommy, I wanted to also say - no blood flow to the tumor is a major progress. When I was diagnosed, on the US Doppler view my tumor was lighting up like a Christmas tree - the sucker built bunch of big vessels to feed itself. I had an US after 3 Taxols and there was almost nothing in terms of blood flow! It was such a marked change. I believe the tumor just starved after that. I wish the same for you!

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Aug 28, 2020 10:51AM NorCalS wrote:

My breast MRI prior to chemo showed extensive spread on left breast. Like FarAwayToo, it was like a lit up Christmas tree. MO did not think the tumor was shrinking after AC and part way through taxol, so MO was going to stop chemo. I had an MRI before stopping chemo and MRI showed no tumor. The images were completely dark. So, I ended up completing my full chemo treatment. Physical exams are not as accurate as MRI or even ultrasound. I don’t know why more MOs do not order MRIs during treatment to see if the treatment is working

Dx: 06/2019, left breast, ER/PR-, Her2-. Treatment: 06/2019 - 11/2019 AC/T. Surgery: Lumpectomy with axillary dissection in 12/2019. Radiation: 01/2020-03/2020. Xeloda - 03/2020-09/2020
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Aug 28, 2020 02:04PM ElaineTherese wrote:

Hi!

My tumor was gone after chemo; it shrank more on Taxol than AC. You never know. My next-door neighbor had to stop chemo early because of heart problems; after four doses of TCHP, her lump was gone.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Sep 9, 2020 12:58PM Susiemommy wrote:

Thank you for the words of encouragement, FarAwayToo. I noticed in your stats that you had your ovaries removed. Was that something you had to ask for or did your doc recommend it? I am ER+ too and wonder about the side effects of Tamoxifen or whatever estrogen blocker I will get put on eventually. I've already been thrown into early menopause (which I don't mind except for the godawful hot flashes) and look forward to a time with fewer medications - if that makes any sense at all. I'll do what I have to do, of course. Just always wondered about just losing the ovaries as opposed to trying to shut them down chemically.

Dx 6/17/2020, DCIS/IDC, Left, 2cm, Stage IIIA, Grade 3, ER+/PR-, HER2- (FISH) Chemotherapy 7/7/2020 AC + T (Taxol)

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