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Immunotherapy Tecentriq Helps Some Advanced-Stage Triple-Neg

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13

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  • moth
    moth Member Posts: 3,293
    edited July 2020
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    Katie, we are close!

    I was Feb 10. Started treatment March 19 - we were waiting for the clinical trial to open.

  • ipenelope
    ipenelope Member Posts: 233
    edited July 2020
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    moth- wow we are very similar!! My metastectomy was March 18th, and chemo/immuno started 4/20.

  • Lulabelle2020
    Lulabelle2020 Member Posts: 22
    edited August 2020
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    Hi all,

    TNBC mets to skin with left lymph node involvement and omg you ladies speaking about mets with this treatment are giving me hope!!! I’m on atezolizumab plus nab-paclitaxel.

    So three weeks on 2x atezolizumab and 3x nab-Paclitaxel my hospital was one of the trial hospitals for the IMpassion trial in the uk and my professor got very excited when she tested and realised she could treat me with the regime as it’s now out of trial and approved in the uk.

    I’ve had 4 lots now so on my second cycle only effects have really been shedding hair I cut it super short end now live for the wig or scarf as I can’t be bothered to shame my head but am super patchy where I hacked at it with hairdresser scissors. So showering never felt so good!!!!

    I had a touch of constipation from the anti sickness meds they give you with atezolizumab. I also started cutting out sugar and processed foods increased turmeric, garlic, onions, wheatgrass, beetroot, rosemary and ginger which then purged me after chemo so I have some constipation and lose movement stuff as when I did FEC the first time around my Bowels were a mess and I was sick for days and days after it!!! My prof did say the nab is the kindest of the chemos in this bracket, it takes an age to all come out as it’s so thick from the oil she did say the oil keeps it from giving such big side effects. I have a portacath and my life is so much easier as I had no veins after FEC and it was so painful trying to find them or going in at places that aren’t the best!!!

    I’m so far managing to go out for walks and keep up my meditation twice daily. I have found after chemo/immuno I’m starving!!!!!! The prof ensured me that I should eat lots of carbs and sugar as I would lose my appetite but this hasn’t happened so far it didn’t last time either!!! Apparently losing weight is a bad thing if it’s significant as you need your strength to heal/withstand treatment I’ve probably lost half a stone but that’s to be expected with eating better no one is concerned so far.

    The registrar has a feel of my two left lymph nodes and my right breast she was surprised that my nodes are almost back to normal my lump is softer and has defined edges and my skin is no longer red and itchy just a few spots which are dry. Still a little pain internally on it but not as bad as it was.

    After the diagnosis I was really upset and couldn’t process it but now I feel excited to see how far this and the trial we have lined up for if/when it is needed can take me. I feel well in my mind calm, focused, positive and accepting which I’m usually a bit pessimistic or stressed. I usually hate any kind of medicine and butt against it in anyway I can.

    I’m Totally embracing lots of rest and listening to my body’s needs but at the moment I look forward to the treatment I felt worse on my week off as I just wanted to get back and get my treatment.

    I honestly feel better seeing yoh TNBC mets doung do well there’s so much about hormonal positive which is great but sometimes you want to see your tribe and how they are getting on with the same treatment 😊

  • moth
    moth Member Posts: 3,293
    edited August 2020
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    lulabelle, hi and glad to hear you're getting this treatment too. Tecentriq is known to cause diarrhea so definitely figuring out your own system and keeping a stable diet in terms of fiber is important because alternating between the two extremes is so uncomfortable and annoying. My trial called for prophylactic anti diarrhea meds but we stopped them after cycle 1 as I don't have this side effect.

    I wasn't eating enough at the beginning & was losing weight but that was mild depression. Now I'm eating too much lol. Fwiw, I've been focusing more on protein as we need to build many new cells. I'm vegan so it's all plant based for me. I do think for me it's been helpful.

  • Lulabelle2020
    Lulabelle2020 Member Posts: 22
    edited August 2020
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    Hi moth,

    I’ve never had a loss of appetite but sometimes I think your body goes through either an increase or a decrease in hunger when it’s trying to heal. Were you vegan prior to diagnosis?

    I find meat, sugar, milk and fat gross atm I’m obsessed with fruit, veg, nuts and grains. I used to reasonably eat everything but I seem to have turned off of anything unhealthy during FEC because of the steroids I just wanted cake, meat and junk I couldn’t eat veg or fruit as it made me really sick which is unlike me but again I see it as a good sign this time round!!!

    I agree getting the balance is so important as it gets so uncomfortable I try to use minimal meds so have less fruit and veg on chemo day until I work out how I’m feeling. I try and have pasta which I don’t tend to eat but it doesn’t knock my bowels off.

    Yes we definitely need protein, lots of water and movement when we can to get that chemo/immuno moving out of our bodies and away from our healthy cells.

    I hope things continue going well for you

  • moth
    moth Member Posts: 3,293
    edited August 2020
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    hey - an update from the Tecentriq world - (my) Tecentriq trial has been halted. It's all kind of chaos here now. I'll be speaking more with my team on Wednesday

    Basically the 1st Tecentriq trial was with abraxane and showed PFS and OS improvement over abraxane alone.

    Then they ran it with taxol instead of abraxane and prelim results were that it was same benefit as with abraxane.

    So my trial was designed with taxol. But suddenly the tencentriq+taxol reported that they now have more data and it turns out there is no advantage to taxol + Tecentriq over taxol alone.

    That torpedoed the tecentriq + taxol + ipatasertib trial I'm on since they now know they need abraxane and not taxol

    Tecentriq is not covered by our healthcare plan here so trials or compassionate access are only options. The MO can get me on abraxane and we're sort if waiting to see if Roche might let us still have the Tecentriq somehow

    I guess all my tumor shrinkage was due to taxol alone

  • Lulabelle2020
    Lulabelle2020 Member Posts: 22
    edited August 2020
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    wow that seems harsh!! In the uk it is approved only with Abraxane as far as I know based off of the impassion study! Surely if they have started you on it Roche will continue as they could always monitor what happens with the switch and get some extra data from it there must be quite a few in the same situation waiting for an answer.

    I mean great that you got the shrinkage off of taxol and hopefully they can switch it as it’s a different chemo. Sometimes from what I hear you get better results switching chemo before it stops working so maybe it will help you push further towards NEDs 😊

    You guys have way more trials than us but I feel for you with healthcare! Then the NHS is behind with most medical advances and very limited in what it does do there’s swings and roundabouts.

    Sending lots of positive vibes weds will be a crucial day I have to deal with occupational health at work weds too so let’s hope it all works out well for us both.

    Keep us updated and keep up the fight for what you feel is right for you

  • martaj
    martaj Member Posts: 307
    edited August 2020
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    I was very fortunate to be involved in a clinical trial with Atezolizumab. NSABP B-59/GBG 96-GeparDouze Study. Finished up my last infusion of Atezolizumab 2 weeks ago. Follow up appointments only now. Blood work frequently. I did well with it. Did get a horrible skin rash in December of which they held a dose. Diarrhea at times. I am TNBC stage 3 with lymph node involvement. Chemo, surgery, radiation. Now considered No evidence of disease. I feel blessed. Hopefully stays this way

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2020
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    Martaj what did you use for the diarrhea??

  • martaj
    martaj Member Posts: 307
    edited August 2020
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    NicoleRod, was told to use imodium as needed.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2020
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    Thanks Martaj

    So what are some of the side effects besides Diarrhea from Tecentriq?

  • moth
    moth Member Posts: 3,293
    edited August 2020
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    I'm not having any huge SEs. Fatigue, but is that that chemo or the Tecentriq? It can cause permanent damage to sugar regulation, thyroid or adrenals. They monitor through blood work & mine have been fine but it can happen later.

    I haven't had problems with diarrhea.

  • Lulabelle2020
    Lulabelle2020 Member Posts: 22
    edited August 2020
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    I’ll echo what has been said no real SE I don’t think my visions as good as it was then I’m spending longer on my phone and I get the odd ache here and there but probably sit for longer in between exercise but as has been said is that chemo? Or just a general thing that I’m noticing more because I’m looking for it?

    My stomach had resolved itself now I take two tablets for not immodium but the equivalent from my professor once a week (sometimes once every two weeks) a day after chemo and then have no issues.

    Did you get your meds sorted with healthcare in the end Moth?

  • moth
    moth Member Posts: 3,293
    edited August 2020
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    Lukabelle, I think I'm staying on tecentriq + taxol for now. I had a CT scan today & cycle 7 is scheduled for Thurs assuming good results. It almost seems like Roche is running a second (this time inadevertent) tecentriq + taxol trial again 🤷
  • Lulabelle2020
    Lulabelle2020 Member Posts: 22
    edited September 2020
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    I’m so glad you can keep getting it! It seems to be having a good effect for you. I get my first scan at the end of next month so fingers

  • moth
    moth Member Posts: 3,293
    edited November 2020
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    So an update: I've been on tecentriq since March. Main SE that is ever so gradually increasing is rashes. I have sensitive skin anyway so weird rashes popping up for me are not unusual but this is a pattern now. Mine are often in areas of injury - so my cuticles for example. I do not cut or even push them back, but when I play tug with my dog I do snag them on tugs or occasionally she gets her teeth a bit too close (because she's still young and a dork) . Also suddenly, near my port which was inserted in late Aug/early Sep. I'm reacting to tagaderm, to the sensitive skin IV dressing (IV 3000) , to various tapes, to just air.... The rashes are not particularly bothersome, they're not horribly itchy or anything. And oddly, they just barely respond to topical steroids. I'm now using a rx strength cream and again, it just sort of knocks it down, not really getting rid of it.

    The other SE was persistent fluctuations in TSH. Nothing hugely out of range but it jumps around a lot. They keep an extra look on it as I had 1/2 my thyroid removed for suspicious nodules which turned out to be benign.

    I was on tecentriq + taxol during the clinical trial but I'm off trial now & my MO is switching me to Abraxane as that is the evidence based combo. I hope Abraxane is as easy (or easier!) as Taxol

  • norcals
    norcals Member Posts: 206
    edited November 2020
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    Thanks Moth for keeping us updated on Tecentriq. I’m very hopeful that the immunotherapy drugs will help the TNBC group. It’s good to be aware of the various side effects from a personal perspective. Reading medical articles on SE really isn’t the same. Please keep updating us

  • martaj
    martaj Member Posts: 307
    edited November 2020
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    I was on Tecentriq for a year, along with my chemo. I did developed a horrible rash in December 2019, Had to miss a dose of tecentriq in December for such. The doc was going to open up blind study but after being put on steriods rash subsided. My last dose of tecentriq was end of July 2020. NED at this point. Being monitored for next 10 years as this was phase 3 of clinical study.

  • moth
    moth Member Posts: 3,293
    edited November 2020
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    how are you guys getting your abraxane? Day1,8, and 15? Is anyone on an every 3 weeks for.abraxane and every 2 weeks for tecentriq?

  • Stillhavehope
    Stillhavehope Member Posts: 22
    edited November 2020
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    Moth

    I get abraxane every Wednesday and Tecentriq every 2 weeks.

  • martaj
    martaj Member Posts: 307
    edited November 2020
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    I'm not on abraxane.

  • roflute
    roflute Member Posts: 6
    edited November 2020
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    Moth,

    I just started this therapy on Friday and will have the same schedule, Abraxane for 3 weeks and then 1 week off. Tecentriq on week 1 and week 3. I'm hoping the side effects are not as bad as the AC + Taxol I had last year

  • moth
    moth Member Posts: 3,293
    edited November 2020
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    hmm. The 3 weeks at 100 mg each week is the schedule the Impassion 130 trial used. When i was in the ipatunity trial we used same schedule but with taxol. Now I'm off the trial and my MO has switched me to abraxane but the cancer agency here uses 260mg every 3 weeks as their protocol.

    This large dose knocked me on my ass; so much bone and muscle pain and fatigue... but otoh I like the idea of not having to go in next week.

  • Stillhavehope
    Stillhavehope Member Posts: 22
    edited November 2020
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    Moth

    It’s called metronomic chemotherapy. It’s a smaller dose more frequently in hopes it doesn’t allow the cancer cells to regrow.

  • Ally67
    Ally67 Member Posts: 1
    edited January 2021
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    Hi - I am wondering about hair loss and cold caps. I am going to start Abraxene and Tecentriq soon. I am told I will be on Abraxene for 3-4 months, and Tecentriq indefinitely. I was thinking of using the cold cap for Abraxene, but if Tecentriq causes hair loss and I will be on that long term, what’s the point of the cold cap? So, the question is whether Tecentriq causes hair loss by itself. Thank you in advance forany input!

  • moth
    moth Member Posts: 3,293
    edited January 2021
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    Hi Ally, welcome to the board

    I was told it can on its own but I don't know what percentage. I'm still on both chemo and tecentriq, 10 mos later. I believe they don't halt the chemo until intolerable side effects

    Also, join us on the other stage 4 threads. We have lots of.info and support

  • moderators
    moderators Posts: 7,981
    edited January 2021
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    Ally67, we welcome you warmly to our community. We hope and believe will you find great support here Medicating.

    moth is correct that hair loss/hinning has been reported as a side effect with Tecentriq, especially when used with other anticancer treatments. Have you discussed cold capping, or scalp cooling with your treatment team? If so, do they support it?

    We're glad you found us here, and please keep us posted.

    The Mods

  • martaj
    martaj Member Posts: 307
    edited February 2021
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    Today is my one year anniversary of partial mastectomy with reconstruction and lymph node removal. Stage 3 TNBC. I am involved in stage 3 clinical trial (B-59), tecentrig, No evidence of disease as of this date.

  • norcals
    norcals Member Posts: 206
    edited February 2021
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    Marta, congratulations. Great to hear that tecentriq worked for you

  • moth
    moth Member Posts: 3,293
    edited August 2021
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    Big development: Roche has WITHDRAWN the US accelerated approval for atezolizumab in combination with chemotherapy for the treatment of patients with advanced TNBC whose tumours express PDL1

    "Roche will work with the FDA over the coming weeks to complete the withdrawal process. Roche is notifying healthcare professionals in the US about this withdrawal. Patients in the US being treated with Tecentriq for PD-L1-positive mTNBC should discuss their care with their healthcare provider."

    https://www.roche.com/media/releases/med-cor-2021-...

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