Trodelvy Cycles

Hi Karen, Well done for getting through your first 3 cycles!! I found it 'ok' but everybody is different I know. I managed 19 cycles before it stopped being effective and have now started a new treatment. But it was certainly tolerable throughout that time but I did have issues at the start to get it right and my consultant also allowed me to change to a 4 week cycle which it made it a bite more tolerable. I hope you are feeling ok with it and I'd be happy to answer any questions you have based on my own experience. Good luck and keep positive!! Sarah xx

Hi Karen,

I started Trodelvy in September 23 and am now on cycle 12.

My oncologist reduced me down to 75% very quickly as my side effects (stomach related) weren't good. I got my infusions on a Wednesday and by Monday I would be getting temperatures and feeling really unwell so I am now on a 60% dose and last two scans show no lesion growth so that is good enough for me.  Would love to go to 4 weekly but being kept at 3 weekly for now.  Hair loss and picc line are only the real annoying part in a day to day. Flu season messes around with treatment a bit and with coughs and colds etc I did not get many full cycles into me.

Otherwise, managing well.

Seeing more and more people at my unit getting this treatment.

Keep posting!!! Love to hear other thoughts and opinions.

Beverley

Hi Sarah,

Thank you so much for your message....I am glad to hear you got 19 cycles out of it before you changed treatment. I would be interested to hear what treatment you are now having.

My journey has been a very long one, I was diagnosed with TNBC in 2021, initially I had adjuvant Chemo ( Paclitaxol & Carboplatin) with excellent results. I went on to have lumpectomy and Radiotherapy. Unfortunately I had a recurrence about 14 months later, so had a mastectomy and then oral chemo.

My scan in January, showed further recurrencein my chest wall and small secondary lung mets. I had a couple of months of Immunotherapy, which had to stop as I was getting Pancreatic problems.

Which brings me toTrodelvy....I must admit I thought it would be easier to tolerate, but it reminds me a bit of the Paclitaxol days .... mainly the fatigue, drastic hair loss, nausea etc. 

I am tired of all of it to be honest, especially the knowledge that treatment for me now is not cure but trying to contain and prevent further spread of this nightmare disease.

I am grateful that we have the chance to try this drug but am worried about whether I can tolerate it long term, I want a good quality of the life I have left.

Would love to hear your story, and hope you are managing your treatment ok

Hugs,

Karen x

Hi Beverly! 

Fantastic news following your scan, it makes it bearable if you know it's working. 

I have been offered a reduced strength dose as well as possibly a bigger gap, ie 4 weeks instead of 3 like we are both having now. I worry slightly about reducing it but also want a good quality of life.

I am sad at the prospect of never having hair again....my wig is good but uncomfortable in warmer weather....are you wearing one ? 

I don't have a picc but have in the past....just have a new line in each time I go for treatment. 

Would love to hear your story, we are all on our own journey but it's also a comfort to know there are so many warriors out there going through similar.

Hugs,

• Karen x 

Hi Karen, thanks for your email - it really is a crappy journey isn't it..... I was diagnosed with triple negative secondary breast cancer (skeletal mets and nodules in other places) in 2020 and started on docetaxel, then bilateral mastectomy then capecitabine, trodelvy and now enhertu (although so far the jury is out on if enhertu is working or not....). My treatment has been palliative since diagnosis which I wonder if is easier to accept in some ways as my expectations (whilst crushed initially of course) are managed but I have never discussed 'prognosis' with my oncologist as I don't think that would help me - I know what will happen and I don't think I need an estimate of a time when it could be wrong anyway and my personal opinion is that isn't helpful to me (but we are all very different of course). It is always a super scary time though when the scan reveals I've exhausted another treatment but this is how life is and I have to be grateful that I'm still here. I think I am lucky as my side effects aren't too awful - just 'your standard' fatique, sickness and a very intimate relationship with my bathroom. I did manage to keep my hair on docetaxel with a cooling cap but total loss after 1 cycle of trodelvy and it is just starting to grow back now (we shall see). In fact my first cycle of trodelvy was pretty awful and I ended up in hospital with an infection and all my hair fell out - 2 weeks before I was getting married!! My consultant also reduced my dose to (I think) 75% and we also went to 4 week cycle which was much easier as I felt that I was just feeling 'ok' again and then hit you again so the extra week was nice. It is a rubbish situation and my heart goes to all people living with this crap but the only way I can handle it is to keep positive and make the most of when I feel good (not live every day as if it's your last as I cannot stand that saying - how exhausting!!) and don't beat myself up if I have a bad day. I have lived with this for almost 4 years and whilst it absolutely is part of mine and my husbands life it doesn't get to dictate everything. I really hope that you manage to have some good quality days on trodelvy and not be too hard on yourself when you have a rubbish one. We must try to pick ourselves up from a bad day and put our next step (gingerly?) forward.... Hope you're having a good day today xxx

Hi there, I was diagnosed with triple negative in 2022. Had two lumpectomies because it was allegedly tiny, but they couldn’t get clearance. I then had EC and Paclitaxol chemo.  Single mastectomy which, unfortunately revealed a 8.5 cm tumour, despite all the chemo.  I was then put on Capecitabine.  Unfortunately as soon as that ended I had local recurrence in my scar and it has also spread to the skin, now referred to inflammatory bc.  I’ve just finished cycle 2 of Trodelvi, and am reassured by the above posts that it is tolerated as this is now a life lengthening treatment - it needs to do what it says it’s going to do! At the end of cycle 3 I have a ct booked to check that I am still clear in major organs. I’m really struggling with staying positive, and being able to plan and look slightly into the future. Whilst in the post steroid dip it’s hard to see into next week let alone beyond.  How do you do it?  With every scan comes the possibility of hearing that it’s not working.  And is feeling crappy for three weeks worth it just to have one normal ish week? 

Hi Christazg,

Our stories are quite similar....I also have recurrence in my scar post mastectomy and have a large nodule on the scar surface that needs looking at. I have just finished 3 cycles of Trodelvy and my CT showed more than fifty percent reduction in the tumour on my lungs and lymph nodes in my chest wall.

So it can and does work, as Sarah C21 says in her post. Are you struggling with side effects? If so I know the Oncologists can reduce your dose/frequency. My main side effects are fatigue and nausea... occasional diarrhoea, but certainly not as bad as I was expecting. 

I agree that living from scan to scan is terrifying, but try to think that it's keeping a close eye, and better to know it's not working so that something else can be tried. I think the steroids really mess with your mental state too, so I can definitely relate.

Please let me know if I can help with any questions, the girls on here are great and everyone is keen to share their experiences.

Hugs 

Karen x 

Thanks for sharing your story Sarah,  I relate to everything you have said....like you I am not interested in knowing my prognosis.....I don't see the point, and would just feel pressure to make every day count. Like you, I try to live a normal life and don't let it rule, some days are awful, but lots are good. 

Your strength and positivity shine through in your messages, so thank you because it really does help. I hope you are having some good days, enjoying the sunshine when it does ! And have some special things planned, we deserve it ! 

I am in West Sussex....do you attend any support groups? Have you tried any alternative therapies, my Macmillan nurse suggested Acupuncture for fatigue/nausea....not sure if I will give it a go yet. 

Thank you for your reply.

Hugs 

Karen x

Thank you for replying. Side effects sound similar to yours, occasional diarrhoea, nausea and constipation! It’s hard to know what to treat first.  I think I can cope if I know it’s working, so I just have to trust the process and see what the scans show or hopefully don’t show!   That’s fabulous news that you’ve seen a reduction, very reassuring.  I’ve been told that I could see less redness in the inflammatory bc, but I can’t even look at it at the moment, I’m scared I won’t see improvement or that it might look worse. 
I don’t like the idea of reducing the treatment but I suppose having some is better than nothing, I’ll just have to wait and see if I can tolerate it long term. 

Quick question …. When Trodelvi is administered over four weeks do you still need the injections to boost the white blood cells? Because they really don’t agree with me.