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Immunotherapy Tecentriq Helps Some Advanced-Stage Triple-Neg

24

Comments

  • sher0959
    sher0959 Member Posts: 9
    edited October 2019

    Mike, I'm so sorry your wife is having such a difficult time. There is currently a trial using carboplatin with tecentriq. I don't know where you live but it is a trial available in several places across the USA. Contact Vanderbilt Breast Center in Nashville. They had 30 places available back in July and their research team should be able to tell you a place near to you that is also participating in the trial to see if she would qualify. tel: 615-322-2064 Ask for their clinic trial nurse. The carbo might be something your wife could do. With the PDL1 she definitely needs the immunotherapy. Prayers your wife is feeling better today. Sherry

  • mike3121
    mike3121 Member Posts: 280
    edited October 2019

    Thank you so much Sher0959 for the very detailed information. How are the Carboplatin side effects?

  • martaj
    martaj Member Posts: 307
    edited October 2019

    mike3121

    I just finished up Carboplatin, along with Taxol, still on trial drug tecentrig for a year. Carboplatin with taxol had double SE. Extreme exhaustion, diarrhea, no apetite. It lasted about a week. Thank god only 4 of carbpatin, it was like getting a double whammy. It is now done and behind me. Some neuropathy but that subsided. Starting AC in 2 weeks for 4 doses then 4 weeks off for surgery. Good thing is my breast tumor has disapeared according to ultrasound. I'm triple neg stage 3

  • Stilts
    Stilts Member Posts: 228
    edited December 2019

    I have TNBC...Mets to bone/one adrenal gland and a couple nodes. Started Abraxane + Tecentriq in July (PDL1 pos)...last scan considered stable so plan was to continue. The first week of December my ONC office called to tell me my blood glucose was 540! Long story short I have been diagnosed with type2 diabetes believed to be at least partially due to immunotherapy (auto immune reaction)...I am having a very hard time with this...all chemo on hold...PET scan scheduled early January with the added stress of knowing the PET scan will be canceled if my glucose is too high!

    Taking one day at a time!

  • martaj
    martaj Member Posts: 307
    edited December 2019

    Finished up AC with trial/med placebo last Friday. 4 weeks off then partial mastectomy, with bilat breast reconstruction. I have stage 3 T2N1 triple neg breast cancer. Lots going on this week. Mammo, ultrasound, then February 5 localizer, February 13, lymph node highlighter, along with partial mastectomy with reconstruction. Wish me luck, I want this overwith

  • Sf2008
    Sf2008 Member Posts: 6
    edited April 2020

    To those women who presented as PD L1 positive, what the the expression percentage of PD L1 positivity?

  • Momchichi
    Momchichi Member Posts: 98
    edited April 2020

    my PDL is 5% positive and I had good results so far with abraxane and tec

  • Sf2008
    Sf2008 Member Posts: 6
    edited April 2020

    Thank you for your replying, how has your treatment been so far? Did they tell you how long you would remain on the treatment for?

    I found out I only had a pd l1 expression of 1 percent.


  • Momchichi
    Momchichi Member Posts: 98
    edited April 2020

    treatment has been okay, fatigue has been worst side effect. I have chemo related anemia that required weekly blood transfusions but now get a monthly injection to stimulate red blood cells. My hair thinned so much I shaved it but it’s growing back, although patchy. My dr hasn’t told me how long, I assume I’ll stay on it as long as it’s working. I wouldn’t worry about only being 1%, I haven’t heard of anyone with a high %, most of the people I talk to have 1-5ish%. Good luck to you!

  • ipenelope
    ipenelope Member Posts: 233
    edited April 2020

    Hello ladies and Mike. I will be starting Taxol and Tecentriq within the next couple of weeks, waiting for insurance approval... There doesn't seem to be many of us going through this treatment. Hopefully it works good for all of us!!

    Keep up the fight to kick cancer's ass!!

    ~Katie 💗


  • BevJen
    BevJen Member Posts: 2,341
    edited April 2020

    IPenelope,

    your post caught my eye because you were not triple negative. Now it looks like you are?

    Interesting that you were able to get this combo -- are you in a trial or outside of one? I had discussed this in trial form with my onc about 6 months ago when we though that I had progressed on Ibrance (but as far as we know, I'm still ER/PR+ and Her2- but with an ERRB Her 2 mutation.

    Please let us know how this came about and how it goes -- and I think that's why you don't see many people on the combo.

  • martaj
    martaj Member Posts: 307
    edited April 2020

    I'm triple neg, and have been in a clinical trial since end of July with Atexolizumab, Only problem I had with it was a horrible skin rash. Docs where unknown if it was caused by atexolizumab or the AC I was receiving at the same time. I was restarted on Atexolizumab 3 weeks after surgery and have no more rash. I will be on it until first week of August. Only side effect so far is constipation, occasional nausea. Especially after receiving med. If it helps I'm for it. Almost had to stop because of really bad skin rash.

  • ipenelope
    ipenelope Member Posts: 233
    edited April 2020

    BevJen,

    I have and am not in a trial. My oncologist stated the FDA approved the combo for stage 4 March 2019, she feels given my PDL-1 is 5% that this combo will be the best for me. I also asked for really aggressive treatment given my age. I had 2 tumors in my left lung removed a month ago and they had same cell characteristics as the initial breast cancer though they were now triple negative.

    Yeah my initial was less then 20% estrogen positive and my oncologist thinks the initial cancer significantly mutated and quickly, given I had AC + T for my 1st chemo and went onto Tamoxifen 20mg daily Abbott 1.5 months after ending chemo. I had a CT in May 2019 with no areas and I think the areas were already starting to grow in late November early December given symptoms i was experiencing.

    I start chemo and immunotherapy this Monday, 4/20/20 and I'm nervous, which I think is weird given I've already been through this.... guess likely because different circumstances this time.

    I hope all you strong warriors are staying safe during this trying time and keep up the fight to kick cancer's ass!!

    ~Katie💗

  • BevJen
    BevJen Member Posts: 2,341
    edited April 2020

    Katie,

    Good luck with starting your treatment on Monday. Hope it kicks cancer to the curb.

  • moth
    moth Member Posts: 3,293
    edited April 2020

    Hi everyone, I'm a stage IV & in a trial with this drug. So lucky I got in because my cancer agency stopped enrolling new pts in trials due to covid just a few days after I got in. It's an international trial of atezolizumab + taxol + ipatasertib/placebo.

    I've just started my 2nd cycle of atezolizumab + taxol on Thursday. My main issues have been huge fatigue, joint pain in my entire thorax - hips, shoulders, where the neck joins clavicles, lumbar spine and SI joint. First cycle I managed sort of with Advil and Tylenol but my mo gave me gabapentin this week and that seems to be helping way more.

    I have a necrotic met to the lung which is just sitting there . My big problem is numerous tumours in the liver. I had llow albumin and low hemoglobin and my blood sugars were wonky even before I started treatment. I'm getting a blood transfusion tomorrow. The trial sent me a home cbg kit to monitor my blood sugar. The MO wants to see a variety of results from various times of daybefore deciding whether to start metformin.

    Looking forward to sharing our experience on this drug. Hoping that we're all "super responders"

  • dlittkemann
    dlittkemann Member Posts: 91
    edited April 2020

    @mothI’ve been on this combo since end of March and agree, I’m so exhausted. Have u lost hair yet? Mine is so thin. May shave head. It’s not a good look lol. I have a 5 year old and was assuming he be in school so treatment be easier since I can lay down. Can’t now and can’t even have grandparents help since they are not in our house and live separately. I have back stiffness but no pain. My mets are in pelvis and spine so I assumed these aches from that but maybe they are from treatment. This is my week off and I was so happy to have it here. The exhaustion is huge but as long as it’s working and puts me in remission for many years I will be happy to go through all this.

  • moth
    moth Member Posts: 3,293
    edited May 2020

    Hi, last week's round of Tecentriq + taxol my Dr decided to not give me pred at home for days 2-5. We don't know if it's coincidence but I had huge pain issues. I.was essentially in bed for 3 days, and there was no way to get comfortable. Every position hurt my hips, pelvis and ribs. Really deep bone and joint pain. I'm on gabapentin and ibuprofen plus muscle relaxants but they were not really doing anything. Tomorrow my treatment is taxol only. MO was pretty sure it was the atezolizumab causing the pain. She gave me hydromorphone for breakthrough pain but also said it might not work.

    How is everyone else doing?

  • martaj
    martaj Member Posts: 307
    edited May 2020

    Hi folks,

    I have triple neg breast cancer stage 3, I was started on chemo along with clinical trial tecentriq back in August 2019. Trial med had to be held in November for one dose due to I was in hospital with pneumonitis, restarted December, broke out in horrible body rash, stopped dose again first week in January. I had mastectomy in Feb. 2020 with reconstruction and reduction of other breast, restarted trial med of tecentriq 3 weeks after surgery, so far no problems. Radiation completed end of April, no problem, infusion tomorrow. Every 3 weeks, until Aug. 2020. I only have 4 more doses, I just hope it helps me and others in same situation. Also had many lymph nodes removed all benign at surgery time which they weren't before surgery

  • ipenelope
    ipenelope Member Posts: 233
    edited May 2020

    Moth- Even though i seriously wish you weren't going through there pain issues but it's nice to see someone else dealing with the same pain issues. I had Tecentriq and Abraxane on Monday and i went for a walk today and about 1/2 mile in my hips and mid spine was killing me!! Im a huge stickler about posture and I had to walk hunched to get a smidge of relief. Three spine pain mostly gone but my hip joints and upper legs are killing me!! From previous weeks I'll have this pain likely through Sunday and then Abraxane on Monday. I don't know if it's the Tecentriq or the Abraxane that is causing the pain as I still have the pain days 3-6 on weeks off of Tecentriq.

    I'm sorry if I've asked before, chemo brain has been really bad lately, but are you on Taxol (paclitaxel) or Abraxane(paclitaxel protein bound)?

    Martaj- sorry you had the on and off of the Tecentriq and multiple delays! Yay that radiation is over and almost half way to being done with Tecentriq!!

    I hope everyone is doing good and staying safe!! Keep up the fight to kick cancer's ass!!🥊🥊

    ~Katie💗

  • moth
    moth Member Posts: 3,293
    edited May 2020

    Katie, I legit burst into tears when I read your post because I was feeling so lonely with this pain that made me bedridden for 3 days. I kept thinking is this what the end is like?

    I'm concerned I'm already on gabapentin plus nsaids plus opioids now.

    I'm on regular taxol. I get it at the same time as Tecentriq for but only on week 1 and 3 of the 4 week cycle. Week 2 (today) is taxol only. Week 4 I get a break from everything. I think we have similar set ups. My MO told me Roche did phase 2 with abraxane and apparently ran a number of side studies and determined there was no benefit to abraxane over taxol so the phase 3 trial is plain taxol.


  • ipenelope
    ipenelope Member Posts: 233
    edited May 2020

    moth- I seriously hope this isn't the end! We're both way to young!!

    Does the gabapentin work for you? That's usually used for neuropathy pain not necessarily joint, bone or muscle pain. Did the Prednisone help with the pain? Why did they not give you it for the days at treatment this last time? Will they go back to giving it to you?

    Maybe it's like the AC -T and the meds build over time so the side effects get stronger over time. Goodness I seriously hope not!!

    Yeah we have the same plan minus the different paclitaxel component. I've read articles that Abraxane doesn't have the severity of side effects that Taxol has. Last time going from AC to Taxol I don't necessarily remember all the side effects I had other then toe nail issues and some neuropathy.

    Moth- have you lost your hair on your plan?? Mines thinning and my scalp is very tender. I hope your Taxol run goes well with no or minimal side effects!!

    I hope you ladies are staying safe and keep up the fight to kick cancer's ass!!🥊🥊

    ~Katie💗

  • moth
    moth Member Posts: 3,293
    edited May 2020

    Katie, oh I didn't mean that this was the wnd, rather that i wonder if the end is like this....

    I lost my hair. Sometime early in cycle 2 I think? But not all of it. I'm being weird and stubborn and refused to shave it and it didnt all fall out. I have weird stragglers everywhere. And sometimes I think some are growing? I know on taxol last time my hair started to grow back about week 6 of 12.

    Gabapentin is used for neuropathy but it's also an excellent analgesic adjunct and seems to amplify the effect of nsaids or acetaminophen. It's an interesting drug.

    Prednisone has some adverse side effects which make many reluctant to use it long term. She did say she might have to put me back on it so we will see.

  • ipenelope
    ipenelope Member Posts: 233
    edited May 2020

    Moth- thanks for the info about your hair. I started cycle 2 last week. I am noticing mmt hair is thinning a lot!! It will be interesting to see if it will need to be shaved. I know last time it felt less sensitive after it was shaved.

    Your right Prednisone has some not too pleasant side effects with long term use. Im not sure the dosage you previously were on, but if you need it again hopefully it's possible to try a lower dose to give you good response and not to many negative effects 😊. I hope your pain is getting better!!

    Have a wonderful, and safe Memorial day weekend!! Keep up the fight to kick cancer's ass!!🥊🥊

    ~Katie💗

  • moth
    moth Member Posts: 3,293
    edited July 2020

    I'm on cycle 5 of my 3 weeks on/1 week off paclitaxel + Tecentriq + ipatasertib/placebo.

    just wanted to report that at my 16 week CT scan my lung and liver tumors have overall regressed! All except 1 tumor in my liver shrank; the one outlier grew a bit but overall tumor volumes are down so right now this is working for me 😊

    I'm also feeling better in terms of energy and pain. My Hgb is hanging on - haven't needed to be transfused in 4 weeks now which is a nice change. My hair is starting to grow - I have a few mm fuzz. I've stopped prednisone, just get dexamethasone during taxol. Appetite is still too good - I've been gaining weight slowly but steadily so I need to watch that.

    Hope everyone is well.

  • martaj
    martaj Member Posts: 307
    edited July 2020

    I just finished the clinical trial of being on Tecentriq for a year. All treatment with meds complete. So nice and No Evidence of Disease

  • ipenelope
    ipenelope Member Posts: 233
    edited July 2020

    Martaj- that's awesome, congrats!! Did you get Tecentriq with any other meds?? Are you still going to be on it ?

    Moth-I'm happy to hear this combo of meds is working for you and your feeling better!! And your tumors are responding positively to the treatment!! Yay!! How's your pain been??

    I just finished cycle 5, now have a week off till starts again. PET and MRI shows no disease, yay!! Plan is to continue Tecentriq and Abraxane until scan in October, if NED still at that time then dropping Abraxane then just Tecentriq.

    I hope you ladies are all doing good otherwise and keep up the fight!!🥊🥊

    ~Katie💗

  • martaj
    martaj Member Posts: 307
    edited July 2020

    ipenelope,

    I started receiving tecentrig when I started chemo, Taxol, carboplatin, adriamycin, and cytoxan. had 3 weeks off before surgery, restarted it 4 weeks later and continued through radiation up to a full year. Feeling blessed, just can't stop thinking will cancer return.

  • moth
    moth Member Posts: 3,293
    edited July 2020

    Katie, congrats on NED! We must be almost exactly on the same schedule. I just finished cycle 5 and it's my week off too. Next treatment is Aug 6. I skipped 3 taxols so only had 12 instead of 15. I think we are continuing with taxol until neuropathy gets too bad. My pain is very well managed now - so happy about that!

  • ipenelope
    ipenelope Member Posts: 233
    edited July 2020

    moth-yay about the pain!!! I finished cycle 5 this past Monday so I'm a week behind you.

    When in Feb were you diagnosed with the new tumors? Mine was 2/17.

    ~Katie💗

  • ipenelope
    ipenelope Member Posts: 233
    edited July 2020

    Martaj- wow that's alot of meds at once!! And you had radiation!! I hope and pray you stay cancer free the rest of your life!

    ~Katie💗

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