No pCR and still alive and living happy lives

Anatje1972

Dear all,

Today I have started My first session of Palictaxel out of 12.

I have had 4 ACs and the tumor has shrunk from 19 m to 8 mm. I was expecting a full response because nobody felt the tumor anymore, but unfortunately that was not so. Yet I am happy with the 8 m left.

My oncologist does not want to put me on carbo because he thinks is not need for such a small lump and I have no nodes involved (for so far they can see through the MRI and echo).

I am worried I don't achieve a pCR because carbo is not added.

What are your views on this one? And are there ladies who are living long lives even without a pCR.

Thank you all.

NorCalS

Anatje,

I’m so glad you started this topic. I’m curious as well. I did not get a PCR either, even though a breast MRI prior to surgery did not show any tumor. I was diagnosed June of 2019 (stage IIIc) and I am currently onXeloda to help prevent recurrence, so I am hopeful that you get a lot of positive responses to this thread.

Anatje1972

Hi NorCalS,

I would would think if MRI shows no tumor that it it should be gone. But not this!

Did you you have chemo? And did you receive Carboplatin

NorCalS

I had neoadjuvent chemo - AC-T. I did not receive carboplatin because my test for BRCA 1 and 2 and any other known genetic defect came out negative. MO did not believe carboplatin would be effective for me.

Anatje1972

same here. How much of you lump was over?

Did you have nodes involved by surgery?

NorCalS

At the time of diagnosis, I had multiple nodes involved, hence the staging of IIIc. The surgery sample showed 1.2 cm left in primary tumor and one node with 4 mm. I also had isolated tumor cells in several nodes, but MO explained that these are considered node negative because very few cancer cells. Also my primary tumor was originally over 5.5 cm and the pathology report after surgery stated that the tumor bed had less than 1% cancer cells. I had sentinel node biopsy and axillary node dissection.

NorCalS

Did your MO suggest either Xeloda or immunotherapy after surgery? MO knew that I was interested in further therapy after surgery if I didn’t get a PCR, so they tried to get me enrolled in an immunotherapy clinical trial. I didn’t qualify, so I’m on Xeloda now to help prevent recurrence. Did you ask your doctor about Xeloda

Anatje1972

I still need to have surgery.
I need to have 11 taxels still!

I just hear from a lot of women who have carbo without BRCA and achieve pCR! After 6 taxels without Carbo we will check how the 8mm lump is doing

NorCalS

I thought Taxol was easier than AC. Hopefully, that is the same experience for you. There has been a clinical trial Recently that included Keytruda with Taxol. Apparently, much higher PCR than with taxol alone. You have to be tested for Pd-L1 to see if keytruda will work for you. You may want to ask your oncologist to see if immunotherapy can be added to your current treatment

santabarbarian

I agree with NorCalS about Xeloda and keytruda... always good to have chess moves thought out in advance.

NorCal was it Melinda Telli you tried to see?

Re Carboplatin-- my MO said that even without a BRCA mutation, frequently high grade TNBC is basal or 'basal-like' and still responds well to Carbo. I had Carboplatin and Taxotere as my treatment. (That's the Her2 treatment - TCHP- minus the 2 specific Her2 drugs.) Possibly you can switch to that if the response is not what you want after the first half?

NorCalS

Hi Santabarbarian. The clinical trial I was trying to get into is lead by SWOG:https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCT02954874&r=1

The sample from my lumpectomy had cancer cells, but apparently not enough to test for PD-L1. So I was stuck in this weird space, where on the negative, I still had residual disease (one Sentinel lymph node tested positive) but on the positive not a lot.

I am almost done with Xeloda and if it helps with defeating TNBC per CreateX clinical trial, then it was worth it.

I’ve been reading up on the vaccines that are now in stage 2 clinical trials and it may be something I may try for. Currently NED, but I feel like I need to go after the TNBC and prevent Mets

Sam0623

I always worry I may jinx myself posting something like this, but I know when I was diagnosed I desperately wanted to find more people like me. I did not have a PCR, far from it actually- After AC-T chemo (with 2 doses of Carbo) I still had a 3 cm tumor and 8 positive nodes. That was 3 years ago. I also was not BRCA+, but I talked my doctor into trying the Carbo anyway, and I'm glad that I did because based on my outcome at surgery we know it probably didn't work. I do not believe my cancer was basal like, which is why Xeloda after surgery was so important to me. I've made a lot of lifestyle changes since diagnosis- I largely stick to a low fat diet, exercise 6 days a week for atleast 60 minutes and also take many supplements. I also took bicalutamide for 2 years (further testing showed I was AR+) and have been on TM for over 2 years which is depleting my copper. My doctors now tell me I'm entering the tail end of the risk curve for recurrence, which seems so strange because my risk was so high in the beginning- So long story short, I would advocate for yourself and if you feel like you would have regrets not doing Carbo, push your doctor a little more on it- One huge thing I've learned through this process is you have you advocate for yourself, and doctors don't necessarily know everything and YOU have to feel comfortable with your treatment because its YOUR life, not theirs, at risk.

NorCalS

Sam0623,

I am so glad you posted. I worry too about jinxing myself when I say something positive about my condition. At Dx, I was labeled stage IIIc-IV due to lots of positive axillary and supraclavicular nodes. Chemo helped me tremendously in reducing the positive nodes, but it didn’t eliminate it totally. MO and BS did not agree on treatment plan. MO thought I was stage IV, so wanted to go the palliative route, but BS fought for me and pushed for the more aggressive chemo. I wanted the aggressive chemo and I’m glad that at least one of the doctors agreed and supported my choice. You are absolutely right that you have to advocate for yourself.

HopeHeal

Hi Sam0623 and others, thank you for posting. I am wondering how you went about getting TM. My diet has been high in copper which worries me given recent studies.

NorCalS

Hi HopeHeal.

What is TM?

MinusTwo

TM is tumor markers. Here's a link to the abbreviations.

https://community.breastcancer.org/forum/131/topic...

mamacure

NorCal, how long is your xeloda treatment?

I had taxol, carbo, AC, Keytruda and still did not achieve PCR. Carbo & AC were very hard.

Thought 1-3 node involvement with MRI but surgery found 5/8. Now almost done with radiation and doing some keytruda before going on xeloda for 6 months. I think radiation will help a lot with reoccurrence. I am hopeful but dreading xeloda. At least I can take it at home. Thanks for this theead

NorCalS

Hi Mamacure.

I was on Xeloda for 6 months. I had AC-T, lumpectomy, radiation, then Xeloda. Xeloda is tedious because you have to take it twice daily, but I think it is less harsh on the body. Don’t get me wrong, there are still side effects, but I think a lot of people tolerate it better than AC. I thought the hand-foot syndrome, which is the most common side effect, was not that difficult to deal with and for the most part I had milder hand-foot. Headaches, which according to MO is not a common side effect, was the worst part of Xeloda for me. I was on the two week on Xeloda and one week off Xeloda schedule, so the week off did help tamp down the side effects. Overall, I’m glad I added Xeloda to my treatment plan

HopeHeal

Hi NorCalS and MinusTwo,

The TM I am referring to is tetrathiomolybdate, a drug that chelates copper out the body. Some ladies are using it with their integrative doctors. There is a theory that too much copper increases mets risk. I researched this myself and found that the body regulates copper blood levels through excretion/storage/absorption so I am not sure how culpable dietary copper is.

https://pubmed.ncbi.nlm.nih.gov/19335282/

Merry Christmas everyone.

NorCalS

HopeHeal,

Thanks for the article. This stuff is so interesting to me

HopeHeal

Me too NorCalS. I plan to see an Integrative Onco about this.

santabarbarian

I did a ton of integrative meds during treatment. I saw an iIntegrative MO and did everything he recommended.

When I brought up copper chelation my regular MO. having read about it, he said it was very risky. Integrative MO had not recommended it but I saw something online. It struck me as something both considered too risky for prophylactic purposes.