No pCR and still alive and living happy lives

Anatje1972
Anatje1972 Member Posts: 4

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.


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Comments

  • norcals
    norcals Member Posts: 206

    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
    Anatje1972 Member Posts: 4

    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
    norcals Member Posts: 206

    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
    Anatje1972 Member Posts: 4

    same here. How much of you lump was over?

    Did you have nodes involved by surgery?

  • norcals
    norcals Member Posts: 206

    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
    norcals Member Posts: 206

    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
    Anatje1972 Member Posts: 4

    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
    norcals Member Posts: 206

    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
    santabarbarian Member Posts: 2,308

    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
    norcals Member Posts: 206

    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
    Sam0623 Member Posts: 67

    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
    norcals Member Posts: 206

    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
    HopeHeal Member Posts: 137

    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
    norcals Member Posts: 206

    Hi HopeHeal.

    What is TM?

  • minustwo
    minustwo Member Posts: 12,818

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

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


  • mamacure
    mamacure Member Posts: 256

    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
    norcals Member Posts: 206

    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
    HopeHeal Member Posts: 137

    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
    norcals Member Posts: 206

    HopeHeal,

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

  • HopeHeal
    HopeHeal Member Posts: 137

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

  • santabarbarian
    santabarbarian Member Posts: 2,308

    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.

  • nume
    nume Member Posts: 71

    I feel so sad today. Few days ago I had the ECO before starting the second type of neoadjuvant chemo, AC on monday.

    After 12 weeks of Paclitaxel, Carbo and Keytruda I had only a 50% respose which I found out is the minimum to be considered as ``response to chemo``. I thought it would be higher because after the 2/3 of treatment ECO I was told it already had a 60% response. The lump is 16mm(the longest shaft) down from 32. My biopsy was positive for lymphovascular invasion but no lymph node involvement was present on ECO, PET or CT.

    At the hospital I met two patients(wonderful supportive women) having chemo for TNBC approximately same size and grade. Both finished with pCR last week. I know I should be calm and wait but somehow it didn`t sink in until now(the real danger of this diagnosis). I am fighting tears since this morning.

    I have been searching for stories where years later everything is fine even without pCR. Please let me know if you have such an experience.

    XO



  • specialk
    specialk Member Posts: 9,178

    nume - I did not do neoadjuvent chemo, mine was post-surgery - although if I was treated today I definitely would have due to Her2+ and a 2.6cm tumor with LVI and positive nodes. I decided to post here about a very good friend who was diagnosed in her mid-30's with a BRCA1+ 3cm tumor that was TNBC. She was node negative and had her sentinel node biopsy done before chemo when her port was placed. She had AC first but had to stop after 3 infusions because that SNB incision was opening and would not heal. She had a pause then did the Taxol portion, but only did 8 of 12. She did not have a pCR, went on to bi-lateral mastectomy with saline implant reconstruction. She has passed five years - I believe she is now at seven - and no issues. I post often on the Triple Positive thread and not all of the people who post there - many of whem are having neoadjuvent chemo with Herceptin and/or Perjeta - get a pCR either. Hope this makes you feel better, hang in there!

  • dnazyme
    dnazyme Member Posts: 16

    thank you, specialK. These stories really REALLY help non pCR TNBC patients. Even though statistically we should be the majority (or maybe used to be the majority?) I think fewer of us post. Either we don't want to jinx things? Or we feel like we've failed a test? Maybe we just died? I don't know. It's surprisingly upsetting to see pCR peeps saying how good life is, tbh. Maybe that gets easier.I hope so, because it makes me feel petty, in addition to being depressed.

    Even if you don't have a BRCA mutation, nume, you'll be able to take xeloda. If you do have a BRCA mutation, it's Lynparza…then xeloda.

    I cried for weeks after not just not achieving pCR, but my tumor had no discernible response to dose dense TAC. The tumor changed shape a bit, but was still the T1cN0M0 found on pre chemo scans. It took me ~3 weeks to begin to calm down. I'm still not ok, but I'm better. It will get better, nume. It will.


    edited for typos

  • norcals
    norcals Member Posts: 206

    dnazyme and nume,

    It is tough when you first learn that you did not get a PCR. I did not get a PCR and I cried for days after surgery. Then, I had to get myself together because there was further treatment (Xeloda and radiation). It is now almost 3.5 years from Dx and 3 years from surgery. So far, so good, but I am definitely one of those people who do not want to jinx things. I am still crossing my fingers and holding my breath.

  • dnazyme
    dnazyme Member Posts: 16

    thank you thank you thank you for posting that, norcals, despite not wanting to jinx things. I am only a few months ahead of nume, and probably wouldn’t be posting if I didn’t know in her shoes it would help me.

    When I looked (granted I was upset and the internet is very big) there was no one I could find on boards who wasn’t metastatic TNBC, or mid initial-treatment, or who had pCR, or who had had treatment early enough that they’d surgery before chemo and pCR did not come into it. It was a dark time.

  • nume
    nume Member Posts: 71

    Thank you so much, Specialk! I need to hear such stories.

    DnazymeHeartI know I sound borderline obsessive with this pCR. As time passes I become aware that things can go wrong and all my optimism and hopefulness become a constant effort. Time I was mentally doing great is further away. I went back today to watch a 2019 vlog of a TNBC survivor/fighter(I don`t like either of these terms) that I found on my first week after the biopsy. And today I googled her name. She died one year ago. I had a panic attack.

    Yes, I am BRCA negative. In fact I am negative for all 132 genes I was tested for. This means there is no clue on how it could be targeted.

    Initially, very optimistic, my Doctor said I will just have Keytruda after surgery and last week she was telling me I could avoid radiotherapy if my nodes will be confirmed clear after surgery. But now I begin to doubt everything. I will ask for radiotherapy and for Xeloda.

    Dnazyme, you found it early. You will be ok! Did you have clear margins? I do imagine the disappointment you felt at the end of the chemo. What did you do to calm down?

    I feel very lonely. Until middle of this week I was exchanging whatsap messages with the two ladies that were in treatment(and had pCR)... I called my husband who`s working abroad. He`s doing his best to be supportive, asking if I watched such or such movie, telling me it`s early days, I still have two thirds of the treatment ahead... But I can`t shake off a low constant degree of dredness that suddenly got hold of me.

    How does one make peace, return to normal life? Is life ever to be normal again?


  • nume
    nume Member Posts: 71

    Norcals, thank you soooo much! It gives me so much hope!

  • dnazyme
    dnazyme Member Posts: 16

    Ugh, this site is trash when using a cell phone. Just lost my whole post. I will try again. It must be maddening to have been on here when it worked, then see how it has changed.

    You're scientifically accurate to care about pCR, nume! It's important. It isn't everything, but it's important. I did have clear margins. It was encapsulated. It was relatively small! It didn't grow larger during chemo. My sentinel lymph node (they took out one but somehow it was actually three) was clear. I bounced back from my BMX easily. I thought I'd be happy, but I had assumed my tumor was shrinking inside the capsule and the reason it seemed the same was because dead tissue had replaced the living cancer.

    I didn't know it was possible to have no response to chemo if you have TNBC and have not "used up" a line of therapy by building up resistance. I have a PhD in molecular biology (my specialty is not cancer, however) and I thought I was doomed when I saw my path report. I was livid at the staff for encouraging me to believe that inside the capsule things were fine, and that TNBC responds "so well" to chemo. I asked later, when I was calmer, why they did not warn me that sometimes TNBC shrugs off chemo. That it wasn't a given that what was inside the capsule was dead. They explained that what I would have taken as a heads up, others would see as taking away hope. That some people might even refuse chemo. I still felt lied to (a lie of omission) but understand. Mostly.

    I asked my psychiatrist (himself a stage 4 cancer patient) how/when I would calm down after learning about my non-pCR. What steps could I take? The answer was, basically, time.

    As norcals says, having another treatment lined up helps, but there was about 10 days before that began for me. I cried daily. I lost 10 lbs in 2 weeks. I felt worse than when I was first diagnosed. I didn't know what to tell my mom and dad. I'm middle aged and I still didn't know what to tell them. I went with the truth, that it wasn't the best possible outcome, but wasn't the worst. Friends, including MDs and other scientists, didn't understand why I was so upset: the tumor is out, you have clean margins, you don't have cancer! That was hard. Not everyone wants a quick explainer on residual cancer burden scores. I found I wanted to be around people in my position. I wanted it like I never had before. So, nice to meet you norcals and nume and wrenn.

    I could think of nothing else at first. Or I lost myself in mindless stuff...acrostic games on the phone. I was too upset to play sudoku. I signed up here and looked for other people without pCR. With time (maybe 2 weeks?), I decided there were some other things I could do: exercise is known to help reduce the chance of recurrence. Previously someone who went to the gym regularly, from vanity, I found it hard to get off the bed and go. Even though I knew what to do. Finally I went and took a shower and walked around looking at things. That broke the ice. I didn't want to go, but told myself I wasn't allowed to freak out about recurrence and not do active steps to help prevent that very thing. Sometimes I just walk.

    Before I my diagnosis and during chemo I ate a lot of calcium things. Not for my bones, I just like milk and cheese and yogurt. I'm lazy and these things take little to no preparation. But I was afraid of becoming more anemic on Lynparza and that they'd lower my dose. I was too depressed to make salads. I'll eat salads other people make, but without a garden it's hard to keep vegetables fresh. So I bought a blender. I made vegetable smoothies and vegetable + fruit smoothies. In the beginning they were terrible. I'm not a good cook. I held my nose and drank them down. Eventually I got better at it. I wish food were a joy, but it never has been for me. If it helps anyone, I've been on Lynparza a month, and am no longer anemic. I have zero unpleasant side effects. Being a natural pessimist, I wonder if that means I am immune to PARP inhibitors like everything else. My oncologist clasped her forehead and said no, side effects are not a sign whether or not treatment is working. I think sometimes I am a tribulation to her. Ah well.


    I thought I was doing ok, then saw a TN person on here that had recurrence after over 10 years, and lost my mind for a day. It took time, but I feel better. Time helps. Interacting with other people in a similar situation helps too. I'm glad there's a thread like this.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453

    nume,

    I am not triple negative but I have been stage IV for 11 years. Time will be your friend as many have found that it does get easier with its passage. Things will go as expected and sometimes not as expected. Breast cancer is still quite the mystery in many ways and there are no guarantees. Many of us have sought out therapy and anti-depressants or anti-anxiety drugs to help us cope and deal with bc. I still think about my mbc every day but I try not to waste the present by dwelling on a future I can’t yet see. This is not quick or easy to deal with but it can be done. I shudder to think of all the wonderful days I would have wasted over the past 11 years if I had not sought help. Take care