Trodelvy Cycles

That is interesting. That seems to be similar to me. Even if I knew when I was going to be bad then I could plan around it if there was a ‘routine’ to it. Also interesting that your first round was the worst. If things got better than this then there is hope. I don’t want to feel ungrateful in Trodelvy as it seems to be literally a life saver for some people. It’s great to hear that you have been on it for so long and it’s keeping everything in check. I’ve been quite shocked with it compare to my previous FEC and Docetaxal. The side effects and even the hair loss has been extreme. My hair is falling out just after two weeks. Have you been able to work on it? I’m still working and wondering if I’ll be able to continue. Really appreciating all your thoughts and input. I don’t know anyone else on this drug and it’s great to have someone with experience of it. 

Bev x

Hi Bev, My first cycle was a disaster!! After day 8 I felt very fatigued and severe diarrhoea and I was sent to hospital for a few days with an infection! It has definitely improved since cycle 1! I also lost all my hair during my hospital 'mini break' so all a it rubbish. Previously I had docetaxel and capecetabine and I used a cooling cap for docetaxel which worked reasonably well.  I used a cool cap for cycle 1 of trodelvy which didn't work at all! I did stop work last year actually mainly because my previous consultant was a little more negative about my longevity than my current consultant but I would say that I could work part time if I pushed myself a bit - the trouble is I have managed to fill my time without work and quite like that and who knows how long anything works for? As I said I have just finished cycle 15 and have one more planned and after that I think I will likely start the next chemo planned for me. So - my take is the first cycle was awful but it definitely improved and if you are able a 4 week cycle it is much better. It is all doable so please try and stay positive..... I started trodelvy in May 2022 and will probably finish in October 2023 which is a pretty good run! Take care of yourself and always happy if you want to discuss at any point. Sarah x 

Yeah, I was shocked at the hair loss. Back to dealing with accessories and wigs again. was feeling down yesterday about it as couldn't get anything to work for me.  Bit better today so have picked up a bit. Found a nice scarf and fringe accessory that I made look half decent.  Booked for a new wig fitting on Wednesday for wearing in work as my current real hair wig a bit too glam! When were you told that a new chemo was planned and why was it decided to stop the trodelvy.  I was advised that I would get it for 'as long as it worked'.  

District nurse came around today and GP phoned me saying that my white bloods are low so chemo doctor will advise tomorrow if this Wednesday will be appropriate for cycle 2 to begin or not.

If this could mess up my planning up to Christmas around a 21day cycle then I would rather do 4 weekly just so I can plan ahead and be more certain for timings.

I'm pleased you feel more positive today - I am a baseball hat girl!! I do have a wig but it makes my head hot so everybody is used to my cap now thank goodness. Yup that's right about as long as it works as far as I know too. My last scan showed that it was starting to become less effective so my oncologist is doing 2 more cycles then another scan and (based on the last scan) it is likely that the effectiveness will become too low to continue and I will go to the next one.  You could ask your chemo doctor about 4 weeks maybe? Fingers crossed things turn the corner for cycle 2. Sarah x

Hi Bev, I just wanted to check in with you that you are doing better now and did you get to do your 2nd cycle and how you're feeling? Hoping that you're doing ok. Sarah x

Hi Sarah, I didn't get my infusion last week as my white bloods cells were too low (.84 and should be over 1 apparently) I asked about doing a 28 day cycle instead of 21 to my oncologist but he said its too early for those sorts of decisions yet as need to see if Trodelvy is working well enough at 3 weekly. However, when I mentioned my side effects he does want to drop down to 75% strength. Is that why your first cycle was worse. Did you have your strength reduced?  So I have been enjoying the week off although last Tuesday, I did have severe fatigue and a 100 degree temperature yet no infection.  Could that be due to the low wbc count? Anyway, cycle 2 starts this Wednesday and i have been fine.  I didn't make my wig appointment so I will have to rebook it and now that my cycle is knocked off by a week, all my plans around my cycle are knocked off kilter.  What were the signs that your treatment was becoming less effective? Where are your current affected areas? Also, has the name of a follow up drug been mentioned?

I hope you continue to feel well and have mimimal growth.  My last CT scan did show more growth under my arm and in my lungs but that was because I had no treatment from May to September before Trodelvy. no spread to bones or liver though so very relieved.

Keep in touch, I really enjoy having you to contact back and forward.

Bev

Hi Bev,  Now you mention that I do remember that is exactly what happened - after I had my infection after my first cycle they did reduce it to 75% (sorry I had totally forgotten that). I also have my day 8 infusion this Wednesday so will think of you! My cancer spread from breasts through lymph nodes and is present in my skeleton so the scans show the metastatic sites and whether they have reduced, increased, new ones etc so they use this as the basis for how effective it is continuing to be. I think my next one is likely to be paclitaxel.....the rollercoaster we all have learned to live with! Deffo keep in touch and I'm happy to share any experience I have had if it helpful  - we are all in this!! Take care x

Hi Sarah,

I just wanted to touch base with you to see how things are going with you.

Did you get moved onto Paclitaxel? How have you been and how is your spread.

I had 3 months of Trodelvy (4 cycles) at 75% dose and my December CT scan showed shrinkage of all lesions ( nodes under left arm, both lungs) I am about to start cycle 7 or 8 -I can't remember - had lots of breaks from january due to flu/picc line probs/holiday/chest infections so not so hopeful with next scan in April.

I feel like my body is breaking down.  I am picking up every infection and have weaknesses in muscles and joints.  I think the Trodelvy is taking its toll even though is have kept growth at bay.

I have now been reduce to 60% strength due to fatigue/stomach side effects but still getting 3 weekly cycles.

Sick of no hair and feeling rather sorry for myself at the moment...

Hope you are keeping well and my troubles are not nothing compared to yours. x

Hi Bev, How good to hear from you - I often wonder how you are getting on. I'm pleased that trodelvy is keeping the lesions in check but I am so sorry to hear that you are still struggling with the side effects and have been so poorly. Medication just seems a bit cruel somehow that it is helping our conditions but making us feel more poorly.  Unbelievably I had day 8 of cycle 22 this Wednesday with a scan due in a couple of weeks to have a look. I consider myself extremely lucky that my side effects are manageable (although I still miss life when every bag and worktop wasn't full of some kind of drug!)  and that trodelvy appears to still be keeping things ok (usually a mixed result but no new spreading outside of my skeleton). So - I will see in a few weeks if I will be changing or going for another 3 cycles. I agree on the no hair thing....particularly now the weather is starting (?!) to get a bit warmer hat wearing/bald head becomes more obvious and I certainly become more conscious of it and I don't like it at all. I do really try to not think too much about the treatment and condition though and try to focus my mind elsewhere. It is part of my life but it doesn't get to totally control it!!! Hang in there...maybe try and plan a small treat to look forward to? Please get in touch whenever you want to and have a good day. xx

Hi , I hope you don't mind me joining your chat.....I have just completed my first three cycles of Trodelvy for secondary lung mets following my TNBC diagnosis in 2021.

Just wondering how you girls are finding it several months on. Would love to hear from you 

Karen xx