Jul 29, 2020 06:49PM moth wrote:
Katie, we are close!
I was Feb 10. Started treatment March 19 - we were waiting for the clinical trial to open.
Discuss your experiences with the benefits, risks, and side effects of immunotherapy treatment for breast cancer.
Posted on: Oct 30, 2018 09:59AM
Immunotherapy Tecentriq Helps Treat Certain Advanced-Stage Triple-Negative Breast Cancers
October 24, 2018
Tecentriq, an immunotherapy medicine, combined with the targeted therapy Abraxane was better than Abraxane alone for people diagnosed with locally advanced or metastatic triple-negative breast cancer who had not been treated yet for advanced-stage disease. Read more...
Posts 61 - 89 (89 total)
Jul 29, 2020 06:49PM moth wrote:
Katie, we are close!
I was Feb 10. Started treatment March 19 - we were waiting for the clinical trial to open.
Jul 29, 2020 07:39PM ipenelope wrote:
moth- wow we are very similar!! My metastectomy was March 18th, and chemo/immuno started 4/20.
Aug 7, 2020 08:05AM Lulabelle2020 wrote:
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 😊
Aug 7, 2020 10:29AM moth wrote:
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.
Aug 8, 2020 10:44AM Lulabelle2020 wrote:
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
Aug 8, 2020 10:56AM moth wrote:
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
Aug 8, 2020 01:11PM Lulabelle2020 wrote:
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
Aug 13, 2020 05:14AM Martaj wrote:
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
Aug 15, 2020 01:43PM NicoleRod wrote:
Martaj what did you use for the diarrhea??
Aug 16, 2020 07:36AM NicoleRod wrote:
So what are some of the side effects besides Diarrhea from Tecentriq?
Aug 16, 2020 08:23AM moth wrote:
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.
Aug 18, 2020 12:45PM Lulabelle2020 wrote:
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?
Aug 30, 2020 07:33PM moth wrote: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 🤷
Sep 1, 2020 05:42AM Lulabelle2020 wrote:
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
Nov 25, 2020 09:30AM - edited Nov 25, 2020 09:30AM by moth
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
Nov 25, 2020 10:07AM NorCalS wrote:
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
Nov 27, 2020 06:58AM Martaj wrote:
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.
Nov 27, 2020 07:04PM moth wrote:
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?
Nov 28, 2020 07:06PM - edited Nov 28, 2020 07:07PM by roflute
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
Nov 28, 2020 07:27PM moth wrote:
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.
Nov 29, 2020 08:09AM Stillhavehope wrote:
It’s called metronomic chemotherapy. It’s a smaller dose more frequently in hopes it doesn’t allow the cancer cells to regrow.
Jan 10, 2021 09:10AM Ally67 wrote:
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!
Jan 10, 2021 09:22AM moth wrote:
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
Jan 10, 2021 04:20PM - edited Jan 10, 2021 05:11PM by Moderators
Ally67, we welcome you warmly to our community. We hope and believe will you find great support here .
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.
Feb 13, 2021 09:32PM NorCalS wrote:
Marta, congratulations. Great to hear that tecentriq worked for you