Thank you so much for the reply and advice.
Like everyone I’m desperate to fast forward through to treatment now.
I’m hoping my treatment plan will help me start to process 
I’m trying to do the same but some hours my emotions just overwhelm me.
I’ll keep trying and hopefully a treatment plan will help.
Hi @Coddfish thank you for sharing! I feel very hopeful about immunotherapy and hope it works but dreading the possible side effects (more dreading that I’ll have to stop with it tbh). Though, of course, it’s impossible to predict what the individual reaction will be.
It’s great that it worked for you, even though you had to pay such a price…but after all any saved day matters
Thanks @cf640 I decided to wait with the decision a bit more. After all, I’m mostly in touch with the nurses and they’re all lovely. The doctor seems knowledgeable as well, but maybe overloaded a bit. I’ll see how it goes 
Will ask her about the second biopsy tomorrow.
Sorry to hear that you had to stop with immunotherapy, I’m dreading it as well but so hard to know anything in advance. After you stop, do they offer some alternative?
Hi @chita
I think they may up my radiotherapy and also they have strongly pushed for me to have oral chemotherapy. There is no substitute for immunotherapy and because i had moderate to severe reactions, officially I can’t be offered it again. Most people don’t react so strongly but my immune system kept going into overdrive!! Xx
Hi All
So many new people!. i am so sorry you are all in this TNBC boat, but Me’hearties you have landed in the right place to find support from a mighty fine bunch of fierce and wonderful women. Everyones journey has different twists and turns and at times it can feel really lonely. Do always reach out if you need support or just need to vent!
@lillytiger i am so sorry to hear of your result, i hope your PET scan went ok and your medical team have a new plan in place. Big big big hug to you!
@cf640 i hope radio and next chemo is going ok now you have stopped pembro.
@diamonddapple i hope the oral chemo is going ok with no adverse effects.
I had my last pembro yesterday, which i have been so excited for, 17 doses done, Boom!
I have been lucky that other than a dropped thyroid function i have been fine on pembro. Unfortunately yesterday was not the celebration that i had hoped for… i had a mammogram last week for my planned contralateral risk reduction mastectomy in 3 weeks. I found out yesterday that the radiologist has spotted something and referred me to have an ultrasound, so the celebration is on hold, whilst we work out whats going on. I am hoping for the best but prepared for the worst (as my tumour was chemo-resistant i have known that my reoccurence risk is high).
I reflected at Christmas what a year 2024 was and what i had achieved… chemo surgery chemo radio… this is some super human stuff we are doing ladies!
Now i am forced to think if its back can i do all that again, and whilst i really hope its not back, the answer will always be absobloominglutely!
Sending out positive thoughts and big virtual hugs to you all. Much love Anna xx
Hi @anna_x51
I think i remember you posting before.
How are you coping? Would you need treatment if they were doing a mascetomy anyway? Sending you hugs and chocolate mousse (I made some last night and ate a big bowl)…
I was talking to a lung cancer 83 year old while i was waiting for bloods in the hospital. He was very philosophical about cancer and said he couldn’t worry because cancer was invisible and secret and he had no idea what was going on. It does feel like that- these chemo agents working for us or not; tumours skrinking or not.
I had a difficult time with paclitaxel and pembro but i agree with you, I would do it all again if I have to, just for the chance it might work better.
Please post to say the result of your mammogram when you can.
Clare xxx
PS I had a mascetomy and implant reconstruction. It feels like a gift to have a replacement boob. Hopefully radiotherapy won’t damage it. Because I’m on steroids, it is taking a few months to settle but soon it will be less swollen. I went extreme and had all my lymph nodes out - that arm is weakened but that’s reversable with exercise. Xx
Lovely to hear from you @anna_x51 and bloody well done you for completing Pembro.
Keeping everything crossed that your ultrasound is positive 
.
Like you say its been a long journey for us warriors on this thread. I had my 1st chemo on 23rd Feb 2024, coincidentally @lillytiger and myself commenced chemo about the same time.
Oral chemo is doable and although I am tired and windy Im just looking forward to it finishing mid April 
and some sort of normality.
Sending love to you for your ultrasound xxx
Ive just been told after just 2 cycles of immunotherapy that i need to stop it as my kidneys are inflamed. Need to start steroids and its a waiting game when i can start chemo again…so scared and disappointed 
So sorry @letsdothis 
how are you coping?
What is the alternative that they suggest?
Hold the thought @letsdothis that immunotherapy was only approved fir primary tnbc about 4 years ago, maybe less. Prior to that the treatment plan was just chemo, surgery then radio.
Just focus on getting well and re-starting chemo
You can do this, its just a hiccup and your Oncologist will have the answers to any questions.
Lots of positive hugs xx
Hi All
@letsdothis the setbacks are tough, and as everyone always says the waiting for a plan, a new plan, or a plan b is so hard both psychologically and physically, but know that your team have seen it all. As @diamonddapple says there are so many women out there that are 5, 10, 15 years on from TNBC that never had pembro as an option. Sending big virtual hugs to you!
i am well versed in the setback department. Sadly after 10 weeks of treatment they said my tumour was chemo resistant which was soul destrying at the time. my medical team thought my cancer was behaving metaplastically and i had to have urgent surgery. i was a wreck and i knew i had to pull myself together in a very short time span (4 days) . I reached out to a mental health professional who really helped me pull myself together for surgery and the month wait for histology to come back. The counsellor took the time to understand me and how i deal with issues and helped me make a short term plan to hold it together. I still have 4 post it notes displaed that say ‘drink lots of water’, ‘sleep’, ‘walk everyday’ and ‘eat well’. The session of counselling helped me cut everything down to the basics that i needed to focus on to get me through that time. I cannot emphasise enough how much it helped me. Setbacks are so very tough and for most there are a few bumps in the road. There is a lot of support out there for us. Do reach out when things get too much.
@diamonddapple @cf640 thanks for the kind words, the chocolate mousse and the the ‘tired and windy’ comments made me chuckle. Last week ended on a positive note which is surprising as the ultrasound led to a biopsy and clip being inserted. But then i was sent for an immediate repeat mammogram and my medical team think based on a comparison of both mammograms they think the biopsy should come back clear. So i have a week to wait to be sure but i trust in my medical team. One interesting thing …when they were inserting the clip i asked whether if it was another cancerous tumour would it be metastices of my BC and they thought that it was unlikely and more likely to be a second primary cancer which is reassuring.
Note the contralateral mastectomy is risk reduction and balancing. I have multiple painful cysts that have appeared in the last year and back pain so i am looking forward to its removal, even more so after this last week.
@kayb26 i hope you are ok and have seen your oncologist now.
@mlm @wba @wren8 i hope you are all doing well and if you have started treatment i hope its going ok. Its so daunting when you start but know that there is lost of support on BC Now forum. Many of us on this chat are a year on from you and know what you are going through.
Wishing everyone a smooth treatment journey, with good bloods and minimal side effects! Big virtual hugs xx Anna
I had 6 cycles of pembro before it led to acute kidney damage. I had to take steroids for 9 months, initially very high dose, but then tapering. However my kidney function did slowly return to normal. And the pembro put my metastatic TNBC into remission despite me having to stop treatment.
@letsdothis
I haven’t talked to anyone yet who had a clear run at chemo. There is usually some delay or hiccup or crises. It’s frustrating and worrying but a blessing when it doesn’t happen.
My surgery was delayed because I was on steroids for colitis (due to pembrolizumab). Then I had surgery, then I got an all over body rash (pembrolizumab again) so I was put back on steroids. I hadn’t had pembro for 4 months now but it keeps causing reactions. I’m waiting to see how it feels about radiotherapy when that starts!
@anna_x51 fingers crossed for a speedy surgical resolution! Trusting the team is so important. I’ve had a few wobbles and it eats away at hope. It’s hope that’s keeping me going and trying not to focus on the scary statistics. I’m trying not to get too concerned about delays with radiotherapy…
@Coddfish that’s great news re your pembro! I wonder why some bodies can tolerate it and some not? I’m having cape at some point and they test for an enzyme but there’s no test for pembrolizmab sadly.
Xx
I suspect immunotherapy adverse events are correlated with the immunotherapy working really well. It’s taken the brakes off and the immune system is doing what it’s meant to do - it’s just picking targets that are normally hidden in immune privileged zones. There are scientific papers showing correlation between IRAEs and good outcomes on the cancer. Sort of it kills the cancer and tries to kill the host at the same time.
Hi all
Hope everyone is doing okay and getting through treatments, waiting for results and appointments as well as plans changing etc… what a roller coaster ride all this is!!
@anna_x51 - still waiting, I’ve been referred for genetic testing, appointment next Monday. I suspect they’ll wait for results of that before they decide anything. Repeatedly reminding myself the wait means most appropriate treatment to mitigate the risks 
Currently filling my waiting time preparing for treatment… had my eyebrows semi permanent yesterday very pleased with them…. Got a wig fitting appointment tonight, as soon as I get a plan will be shaving my head 
I’m not brave or patient enough to cold cap!! Hair off to those that do and don’t (see what I did there!!?! ) such a personal choice with no right or wrong just what feels right for you 
Big love everyone - have a wonderful day whatever the universe has in store for you today
Sorry to hear about your kidney damage @Coddfish. I am glad that you had some recovery and it worked to put your cancer into remission. I am having neo-adjuvant pembro combined with chemo and also 5 cycles pembro following surgery. Can I ask if you had the nuclear medicine kidney test prior to treatment? I assume it was normal and I guess it can affect the kidneys even if they begin with normal function? I am booked in this week for the test but daunting to think about the possible unpredictable effects.
I didn’t have any specific tests as I had normal kidney function per blood tests. The damage was picked up when my creatinine spiked very high on a routine blood test. I was just starting to show other signs of dehydration at that point. 18 months on, the first 9 months of which required steroid treatment, my kidney function is more or less back where it started, much to everyone’s surprise.
Hi All
How is everyone is doing?.
I had preop yesterday and am ready for risk reduction mastectomy next week. I have painful cysts in it that have appeared over the last year and i am very much looking forward to their removal. The tissue removed will also go to histology so it will hopefully put any remaining questions to bed. I am not having reconstruction, if i feel the need i will revisit in 3 years.
I hope everyones treatment is going well. I wish you good bloods and minimum side effects. Xxxx Anna
Hi @anna_x51
I bet you can’t wait to have your mastectomy to get rid of your painful cysts and putting any remaining questions to bed. I didn’t have reconstruction and am quite happy with my ‘knitted knocker’ prosthesis. I felt at my age I didnt want further surgery but that is my own personal decision. Each of us need to do what we feel happy with.
Sending you love and hugs for your op next week.
@lillytiger how are you doing my lovely, hopefully your treatment team have an ongoing treatment plan for you.
I am about to finish cycle 5 out of 6 cycles of oral chemo, Capecitabine. Im still windy 
and tired but ok.
How is everyone else doing on this thread @wren8 , @letsdothis , @debi1 and the rest of you lovely ladies xx