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Triple Negative Stage IV

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Comments

  • karpc
    karpc Member Posts: 192
    edited July 2021

    Santabarbarian - Thanks for the suggestion. I did take taxotere before I became stage 4. I may revisit it eventually, but I got permanent peripheral neuropathy from it.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited July 2021

    Does anyone know when Trodelvy will be approved for ER+ patients in US

  • gr4c1e
    gr4c1e Member Posts: 124
    edited July 2021

    My MO is changing from Abraxane to Gemzar (gemicitabine). I should say, he's trying to change my chemo because the insurance company is really dragging their heels in approving the change. I really don't understand insurance companies and why they get a say in treatment. Anyways, MO said the treatment would be biweekly and my hair will grow back, so that seems like a positive. (always looking for positives when you're triple negative)

    Anybody have experience with Gemzar? Side effects? Low blood counts?


  • moth
    moth Member Posts: 3,293
    edited July 2021

    GR4CIE, are you planning on doing gemzar alone? It's on my list for next therapies for when my current line fails but my MO wants it mixed with a platin, probably carboplatin. She says either capecitabine or gemcitabine+carboplatin. What's your reason for switching? Is it the neuropathy? I've been on a taxane for 16 months now. Crazy when I think about it.

    There is a gemzar thread on here but not terribly active https://community.breastcancer.org/forum/8/topics/...


  • gr4c1e
    gr4c1e Member Posts: 124
    edited July 2021

    moth,

    Oddly enough, we're stopping the Abraxane because it's working. My CA27-29 is down to 19 and my MO wanted to switch to an oral chemo, I can't remember the name, but it's 7 days on and 7 days off, but the side effects were more pain in my hands and feet so I said; What else you got? Then he said Gemzar bi-weekly. No mention of anything else except Neulasta for the low blood counts.

    His parting words were, "We know you respond well to the Abraxane, so I want to keep it in our back pocket for now and move onto maintenance doses of chemo to hold things steady. If the cancer starts to grow or move, we'll go back to Abraxane but I think you're stable for now."

    Also, I'm in training for a marathon and he said switching to Gemzar would give me a break from the neuropathy, not totally, but it should be less so. I've also had some ankle swelling and balance issues on Abraxane in the last cycle. The marathon is October 31st and we will be watching (CT scans) and waiting to see what happens with Gemzar on board. I've been off Abraxane now for three weeks and my balance has improved and my ankles stopped blowing up. No more cankles. Plus, I managed to GAIN 10 lbs on Abraxane. Is that a thing? Do other people gain weight?

    Just waiting for that pesky health insurance approval to get started on the Gemzar.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited July 2021

    Gracie, it sounds as though you’re headed for Xeloda, on which I have been successfully for 31 months. Good string available on Xeloda. Good luck!

  • moth
    moth Member Posts: 3,293
    edited July 2021

    That's great GR4CIE that you're doing so well.

    So yeah, as JoynerL said, the oral is Xeloda aka capecitabine, the same drug as on my list of 'next'. Interseting that our docs are talking essentially the same 3 meds: taxane, xeloda and gemzar and it's just a matter of juggling them.

    I have minimal neuropathy. I've been icing during treatments like mad and taking my B6 but it's possibly just luck. I hope your neuropathy reverses!

  • gr4c1e
    gr4c1e Member Posts: 124
    edited July 2021

    Thanks. Hey! What do you know about B12 and folic acid? I just got the results of some bloodwork from my PC doc and mine was low. The B12 didn't surprise me because I don't eat meat but the folic acid? I'm all beans and greens, baby! What the heck happened? I guess I need to start supplementing both. I did a little research and they make a B12 supplement with folic acid, so I guess it's a thing! I'm not the only one.

  • moth
    moth Member Posts: 3,293
    edited July 2021

    GR4C1E, have you ever been tested for the MTHFR mutation? That's the one I think of with low B12 and low folic acid... have a goog and I think you'll find some studies.

    I'm vegan & used to take a B12 supplement because all vegans should, but my B12 comes up normal/high every time I've been tested so I only supplement erratically now

  • gr4c1e
    gr4c1e Member Posts: 124
    edited July 2021

    MTHFR mutation? I don't know what that is, so I think I should ask next visit. I also tend to supplement B12 off and on, it's the first time anyone has ever told me it was low. I'm going to keep digging!

  • moth
    moth Member Posts: 3,293
    edited July 2021

    Keynote 355 cinical trial reports: IMPROVED OS with pembrolizumab (Keytruda) for mTNBC w. PD-L1 >10

    https://www.merck.com/news/merck-announces-phase-3...

  • karpc
    karpc Member Posts: 192
    edited July 2021

    thanks Moth

  • kcan
    kcan Member Posts: 19
    edited August 2021

    Hi everyone,

    Haven't posted in awhile.

    Curious if anyone has heard anything about trodelvy coming to Canada? Or anything about cart trials for tnbc?

    Just looking at the next best things for tnbc. As well as MAP2K4 and FBXW7 mutations.

    Take care everyone, sending prayers.

    Katherine



  • moth
    moth Member Posts: 3,293
    edited August 2021

    Hi Katherine, as far as I know CADTH is reviewing it now. I know several Cdn groups made submissions regarding approval and funding. I keep hearing "sometime this summer" but here we are in Aug and no word yet.

    I haven't seen a Cdn CAR-T trial. several in the US if you're willing to travel. I've already floated the idea wih my MO. I would consider it isince it doesn't require many trips, it's not an ongoing thing, just requires a few visits down.

    What are you on now?

  • ap3
    ap3 Member Posts: 20
    edited August 2021

    Hello All,

    I hope I'm OK to post here. It is my wife that has cancer, not me.

    I have completed the diagnosis/treatment section of this account with her information.

    She flipped from ER/PR+ (8,7) HER2- on initial diagnosis, to ER/PR/HER2- when it came back in her spine.

    She has read all of the usual "12/18months to live" stuff, and is freaking out. Even just looking on here I can see this may well not be the case.

    Could I ask any "long timers" to let me know how long you've been living with this diagnosis, so that I can give her some positive stories?

    If this isn't appropriate, please let me know and I'll delete this post.

    Many Thanks,

    Andy

  • moth
    moth Member Posts: 3,293
    edited August 2021

    Hi Andy, triple neg does have a shorter prognosis and we have fewer outliers. There are exceptional responders on this board who are 5 & 10+ yrs out but they're pretty much HR+ &/or HER2+

    however, there are a few TNs with good response. We have a very quiet mTNBC NED/NEAD (no evidence of disease/no evidence of advanced disease) thread here https://community.breastcancer.org/forum/8/topics/...

    I'm ~ 18 month out from mbc dx and feeling really good right now on my first line of treatment and I was in way worse situation as I have mets to visceral organs. Bone only is a way better place to be statistically speaking.

    There is an article which looks at prognosis based on SEER datat from 2010-2015 and stratifies it on hormone marker status and mets location. I don't know how much you know about SEER but based on that how that database is set up, it's based on de novo dx which probably has a bit better prognosis than people who develop a metastatic recurrence . Otoh, the dataset is from before we got new therapies - immunotherapies and ADCs like Trodelvy have no doubt bumped that curve up also. Ultimately we never know where each individual will land on the curve - some respond super well to treatments and with TN, they're still trying to figure out the various subtypes.

    If you really want to know, this is the link to the article & Figure 3 is a good summary of the data. https://bmccancer.biomedcentral.com/articles/10.11...


    We do have a few spouses/caregivers posting but we'd really hope your wife would come and join us. We're a community of people with cancer speaking to other people with cancer.

    She could join the bone mets thread. If this is the only met, she would be a good candidate for localized treatment such as SBRT or even traditional radiation. I had this done a few months ago for a small progression into the spine. https://community.breastcancer.org/forum/8/topics/...


    There is a separate section of the forum for caregivers. https://community.breastcancer.org/forum/144


  • ap3
    ap3 Member Posts: 20
    edited August 2021

    Hi Moth,

    Thanks for the reply, and all the information. That first link is very encouraging.

    Our extended family oncologist (I know, it's weird), based in France wants to start her straight on Trodelvy, but it's not yet approved here (UK), and when it is, will likely be 3rd line. (I've heard it should be this year from a close source)

    Her "real" oncologist wants to start her on Abraxane and Avastin, but the family oncologist says we should be adding Carboplatin to that. We're hoping her oncologist agrees, as the EFO has a very good track record of keeping people alive.

    She had 5 fractions of radio to 2 areas of the spine (C2-C5, L2-L5). It's in 5 vertebrae so doesn't fit the criteria for SBRT yet, but the oncologist only gave her 5 rather than 10 so SBRT is still an option in the future.

    Powerport was placed yesterday, and we're waiting for PD-L1 markers (unlikely to be positive I'm told) before starting treatment as it would change things. We also did the Guardant360 test to see if there are any other targets on the tumour cells.

    My wife is not really good at talking about her diagnosis, and is relying heavily on me to research everything, which I'm more than happy to do for her.

    I do hope that your own treatment is able to keep you stable for a very long time.

    Cheers,

    Andy

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2021

    Hi All ...I am new to TNBC...Just found out I receptor flipped....I believe after my radiation in the next 2 weeks to Fractured C7 and to T3 I will then have Y90 on 3 liver tumors...then I the plan *right now* is to go back and do Eribulin/Halaven which I had success on back in Dec (before I was, or we knew I was TNBC) ... I was 2 years ago PDL1 10% positive...we are waiting right now to find out what that number is now...if I am even still that. I am kind of hoping I am as I know Abraxane and Tecentriq target it....and here in the US unlike Canada I can get that and it doesn't have to be a 1st line therapy to be approved.

    I am worried about side effects from a Taxane as I have never done a taxane chemo. I will take any advice you all might have.

    I am also wondering if anyone has taken Citrus Pectin as it shows great promise with TNBC... I am going to order that as well.

    Is anyone on abraxane and Tecentriq and having success?

    Also wanted to know..I am having TEMPUS testing done...does this testing even matter once a person is TNBC as opposed to Hormone Positive?

  • moth
    moth Member Posts: 3,293
    edited August 2021

    KCan, just heard from CBCN (Canadian Breast Cancer Network) that they expect CADTH to make decision in December regarding Trodelvy.

    Nicole, I've been on Tecentriq + taxane (first taxol and then abraxane) for 17 months. Aug 19 will be 18 months.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2021

    Moth how much PDL1 do you have? How have your neutrophils been (WBC)? Do you take anything inbetween to keep them up? Also where are your mets? Liver, lung? Just bone? etc?

  • moth
    moth Member Posts: 3,293
    edited August 2021

    Nicole, originally liver & lung, then I had a minor progression to bone & lung, both of which were treated with rads.

    I actually don't know how much PD-L1 I have. I've never looked at that path report because I didn't want to know and jinx it. Stupid I know but if I found out it's low I'd be worrying about it not working. It was high enough to get me into the Roche clinical trial but I believe they only require > or equal to 1%. It's one of those things I can't control so I didn't want to know. Same with TIL - tumor infiltrating lymphocytes. Apparently there's a test for that and people with higher levels tend to do better on immunotherapy but again, I don't want to know lol.

    My neutrophils were low on paclitaxel and I had to use the GCSF shots but they're better on nab-paclitaxel. They're not great but haven't had to do the shots and haven't missed any treatments due to low counts. I don't really do anything in between other than try to eat well - lots of various plant based proteins and healthy fats. I figure I need to give the body lots of building blocks to heal tissue damage from chemo.

    I know someone else on atezo who developed pretty strong auto immune side effects, had horrible all over rashes and eventually had to come off the treatment. Immunotherapy can have very weird side effects - can kill your thyroid, can trigger diabetes, can cause deadly rashes. I've had a few minor rashes in the early months but nothing since. They recently updated my consent form with a warning about Stevens Johnson Syndrom (which is a potentially fatal skin reaction). I have a paper to carry if I ever need to go to the ER for anything that they need to consider/rule out severe auto immune response for any symptoms.

    So long as you don't have side effects - & it seems impossible to predict who will - atezo is easy. It's just 30 mins infusion, doesn't hurt, doesn't cause nausea or anything. Maybe a bit of fatigue but nothing significant, nothing compared to the chemo part.


  • karpc
    karpc Member Posts: 192
    edited August 2021

    Welcome Nicole. I just flipped to TNBC. A few days before flipping, my blood biopsy results came back and I found out I now have the Pik3ca mutation. I started Piqray based on the mutation. It maybe risky since Piqray was approved for ER+ rather than TNBC but there are a few reasons why my onc and I decided to try it. There are some TNBC trials for the PIK3ca mutation using another drug. So, there is always a reason to get further testing - maybe there is a promising trial you would qualify for either now or later based on a mutation - even for TNBC.

    I found out I was PDL1 positive. A percent was not on my report other than it was greater than 1 percent. I just started taking Citrus Pectin. Also, there was a study posted the other day (somewhere) that statins showed promise for TNBC. I did a taxane prior to becoming stage 4 and neuropathy was a problem for me. Some suggest to ice your hands and feet.

    Moth - It is so great to hear how long you have been on the first line of treatment!

    Welcome Andy. The stats have not been kind for TNBC but the stats are old and from before recent drug approvals plus there are so many new trials out for TNBC.


  • moth
    moth Member Posts: 3,293
    edited August 2021

    KarPC - how much citrus pectin are you taking?

    Also has anyone considered or is taking sulfurophane (broccoli sprout concentrate or broccoli sprouts)? Someone mentioned this to me today and I've read a few things like this study https://cancerpreventionresearch.aacrjournals.org/...

    Memorial Sloan Kettering doesn't say anything neg about it so I'm wondering about trying some though the dosage they used in that study is very high compared to the powder supplements I saw online


  • dlittkemann
    dlittkemann Member Posts: 91
    edited August 2021

    @moth I did well on cisplatin. Low dose. Not for long tho. But on this my scan showed healing and I dropped a lot inntumour markers too. Just wish had lasted longer.

  • karpc
    karpc Member Posts: 192
    edited August 2021

    Here is the link to the study on statins and TNBC https://www.sciencedaily.com/releases/2021/08/2108...

    Moth, I was told to take 1-3 scoops of Econugenics Pectasol-C powder daily and it is best to take it at least 30 minutes away from food. The packaging suggests one scoop. I also take sulfurophane. The brands suggested to me from an integrative doctor I used in the past are Avmacol or BrocElite. BrocElite makes me gassy.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2021

    kar sooo funny I just ordered the Citrus pectin today and a friend sent me info just this morning about the statin

  • moth
    moth Member Posts: 3,293
    edited August 2021

    Posting this here as it applies almost exclusively to triple neg pts

    Society for Immunotherapy of Cancer (SITC) clinical practice guideline on immunotherapy for the treatment of breast cancer - Aug 2021

    https://jitc.bmj.com/content/9/8/e002597


  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2021

    So can anyone tell me about Trodvely?? How does it work what is it exactly in layman terms and does it work with chemo or in place of?

  • moth
    moth Member Posts: 3,293
    edited August 2021

    Nicole, so Trodelvy is an antibody drug conjugate (ADC). It has two parts: a monoclonal antibody that unlocks the door of the cell, and a package that is cytotoxic, which it then throws into the cell.

    The monoclonal antibody targets the Trop-2 protein on the surface of the cell. The cytotoxic payload is a form of a drug called irinotecan, which works by interfering with the enzymes (topoisomerase) that spool up the DNA during cell replication.

    Many cancer drugs have difficulty penetrating into the cells - hence resistance to various chemos. This is sort of like chemo with its own key to a door.


  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2021

    Wow thanks Moth...so this can be used alone then? Have you used it? If so how did it work? If not...why not?

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