Longer explanation below: But I’d love to hear stories from other 3N women who had additional immunotherapy (pembrolizumab/keytruda) at the end of their treatment plan and didn’t find it too harrowing.
Hi all, I’m 39, diagnosed April 2023 with TNBC. I was never given an official stage but it seems like it was stage 1 with a T2 size tumour.
I’ve now had the TN package deal of…
12 weekly paclitaxel and carboplatin (with Pembrolizumab - immunotherapy every 3 weeks)
4 cycles of AC and Pembrolizumab over 3 months
Lumpectomy and sentinel node biopsy (6 removed)
15 sessions of radiotherapy followed by 4 boost sessions…
It’s been hellish, everytime I’ve recovered from something it’s been on to the next stage of treatment. AND now the time has come to return to Pembrolizumab every 6 weeks drumroll please
I’ve been incredibly lucky to have my tumour respond to the chemotherapy, and to be even eligible for immunotherapy… BUT I am also worn out after almost a year of treatment and I have zero capacity left to bounce back and take some more treatment (even though that’s whats required).
Because I only had immunotherapy alongside chemotherapy before I don’t know how I respond to immunotherapy alone. I’ve got really in my own head about it and have started to get very anxious about it and I’d really appreciate hearing from others who went through the same treatment plan and finished it. I feel like I’d be a fool not to finish the Pembrolizumab now so slap some sense into me please.
I have an under active thyroid from the immunotherapy already. I had a pretty horrible reaction to the paclitaxel and then the AC was not good so I think some of this anxiety is trauma from the chemotherapy.
Thank you in advance for your time and for reading this.
Hi, i have just finished the same treatment plan for 3N.
For me, the final immuno pembro treatments were the easiest to bear. Chemo and immuno was horrific but think this was the chemo mostly.
I had immuno every 3 weeks after radio rather than every 6 weeks. I had a lower dose. Maybe ask about that.
I had some side effects but wd describe as niggles rather than anything drastic. They did not stop me doing anything.
It will soon be over.
Good luck
Thank you so much for responding, Philippaa, my treatment twin! It is incredibly comforting to hear a voice from the other side. I’m glad you could get on with life as normal even with the niggles.
Hopefully I’ll be the same, we’re set to go every six weeks but I’ll keep that option to go back to every 3 weeks in my back pocket if I’m struggling.
ALSO well done for getting through treatment, you absolute legend. It’s a long road. <3
Yes, my treatment took 14 months but the last 5 months were fine.
I am starting zoledronic acid next week to orevent bone thinning but I presume you won’t get that as you are too young? X
Wow 14 months… it is a huge achievement and milestone to get through all that.
No ones mentioned zoledronic acid to me yet. I do seem to be headed for an early menopause so maybe in the future. I hope its an easy drug for you to take.
They did suggest I consider starting tamoxifen as despite being treated for 3n I had a PR score of 3. However there’s a high incident of stroke in my family so taking that into account we’re going to leave it for now.
Oh it means a progesterone positive (hormone receptor) score of 3. My oncologist said he considered negative a score of 0-2. So I’m just above that.
Triple negative means all the receptor scores are 0 (or less then 2 depending on the oncologist).
See this link for more details.
@philippaa
Hi, your post drew my attention at the mention of Zoledronic Acid. When do you start? I would love for you to share your experience. This was also strongly recommended by my onc as I have a high risk of recurrence plus my recent bone density scan confirms I have osteoporosis. I haven’t started on the ZA yet as I was told I need to go to the dentist to get my teeth checked. Look forward to your reply and hugs to you.
Hi siggi, happy to share my experience. I start next week. It’s been delayed 6 month in order for my teeth issues to be resolved.
Am expecting mild flu like symptoms afterwards wards. Will report back! Px
Hello I also had the time from hell during chemo but immunotherapy on its own hasn’t given me any side effects, it’s like literally zero. I too was terrified as chemo kicked the living s**t out of me for the best part of a year but now all that behind me and radio and I’m so happy and content, don’t even think about the immuno at all, I just go in and get it done then just getting on with my life xx
Oh @lucyinthesky1 you just made me well up a little. Thank you very much for sharing your experience. I feel like if I can believe all these good stories I can almost manifest it into being. Just getting on with life is the dream.
I’m so over recovering from one treatment only to have to deal with the side effects of the next one.
I’m so pleased things are going well for you now. Huge hug and well done for getting through it all
Bless you Tilly, you will get through this, I felt exactly the same as you. Also even if the immuno doesn’t go to plan they can always stop it, I know it’s not ideal but no matter what you will get to the end and get your life back! I almost didn’t believe it would happen I had such a horrendous time but there is light at the end of the tunnel. Plus when I went in to have my immuno I was terrified to re visit the chemo ward but actually it felt great as it made me realise how far I had come, other people around me just starting their journeys and me here at the end I’d never thought I’d reach. Massive hugs to you, you will be absolutely fine! Also I’ve spoke to many others who also didn’t have any side effects from the immuno either and the chemo nurses are saying that patients are responding well Xxx
Thank you so much again. I’m getting to have my immunotherapy at a different chemo ward this time since I’m no longer considered ‘complex’. I’m glad as I’ve so many bad memories attached to where I had my chemo. It’s great how you could turn it into a positive experience and look at it in terms of what you gained.
Hi,
Had my zometa and its been fine. I had it through my port. I think it might be a bit more uncomfortable through the arm. Felt bit tired and pretty achy in knees and hips but still managed a gym session. Am cold water swimming tomorrow so hoping it will help with the aching.
Hi Tilly, i forgot to mention i went skiing during immuno. With Oncologist’s blessing. I felt fine but tired
. Then again my husband was v tired so maybe it was just our ages!
Hopefully, life will just start to get back to normal for you during the final immunos.
Glad it went well! <3 and hope the cold water swimming helps. How many Zometas do you have to have?
That’s amazing you went skiing on your immuno, did you go overseas? How did you get on with travel insurance?
I had my first immuno on Fridays, I’ve been pleasantly surprised with only having very minor side effects. My joints are aching and my stomach is a bit upset but tbh it would be hard to say if it’s the immuno or just the ongoing side effects/menopause symtoms.
Hi @philippaa - Just checking in whether you started Zometa? If so, did you experience any symptoms? i haven’t started yet… would love to hear from you. Hugs.
