Hi, I am reaching out to see if anyone else has commenced Trodelvy chemotherapy and if yes, what are your side effects experiences. I am only in 1st cycle, 2 weeks on/1 week off. Main reaction has been some insomnia and bad fatigue. Wondering about hair loss and at what stage, if anyone has experienced this? Does fatigue get worse? Any other lurking side effects to be aware of?

@SteffiOZ22 I suggest that you ask your oncologist about Trodelvy. Maybe he/she can get you ‘on a list.’ I found out about it last year in July and asked my onco a couple of times in 2021 and then in late Dec found that I qualified. I actually don’t know the details of what was required. I do think you have to had had previous chemo and/or hormone therapy and cancer not responding to this. But it’s worth asking. Let us know how you go, and we are sending our love.

Hi all, a quick update on symptoms. I have done one cycle / 2 injections, now in my week off. I started losing my hair quite rapidly after the 2nd injection, so my experience is that hair loss pretty much starts straight away. The fatigue is better, but I am struggling with a bit of insomnia. I feel a bit up & down with my energy levels. Nausea has been fine. I start round 2 next week. So far, it's very manageable.

Hi -Just on my week off after one round of Trodelvy ie Day 1, 8. Main concern is fatigue but usually have an afternoon nap. Constipation is my main problem but usually take oral meds for this. The week after day 8 of Trodelvy my hair started falling out which I think I will completely loose but have wig on hand to wear. I'm due back on the 24th Feb for my second round. Nil other side effects and so far coping quite well. Fingers crossed.

Hi AllI have had 5 doses ( 2 weeks on, one week off) of Trodelvy.The side effects seem to keep changing for me. The fatigue is always there but over the last week I have also had dizziness and insomnia is an ongoing problem.The week before that I suddenly got a rash over my lower legs and feet - very itchy - Initially I thought I had been attacked by mosquitos but the tiny red spots were very small and definitely a side effect. I have a constantly dry mouth and my hair fell out within two treatments.I never know how it will be so I try not to plan anything and have given up work because I feel wiped out most of the time.I started Trodelvy after a year of trying three other types of chemo - none of which worked. I think it is a prerequisite to have tried other drugs before you can access It. My oncologist calls it a 'game changer' for triple negative met patients.I had to pay for the first two doses and then the drug company decided they would pay the rest. A huge relief as it is very expensive.I try to stay positive though it's hard when you feel so wrecked. I have scans in a few weeks which will determine my fate. Thankyou very much to Arpie for posting that excellent article from the Sunday telegraph which gives me hope.Best wishes to you all

Hi all, I wanted to share my latest info. I have been on Trodelvy since mid Jan 2022 - had 4 cycles (8 infusions in total). The side effects are getting much more manageable, at least for me. I still have a bit of bloating and constipation but only the few days after the infusion - I have reduced most of my pre-meds, which seemed to be making either my constipation or my fatigue worse. I can highly recommend asking your oncologist about that; don't just take what they give you. And this drug is a 'game changer' for me. I just had pet scan last week and my 5 tumours and now inactive! Such amazing and quick results. So I encourage all to either a) try to get on Trodelvy if you have TNBC, and if you have started: b) to stick with it. I'm happy to answer any other questions. I feel incredibly lucky and blessed. PS - will do 4 more infusions and then have a break for 6+ months whilst I travel overseas.

Trodelvy - any info to share? | BCNA Online Network

29 Replies

Lispy
Member
2 years ago
Bumping to see if anyone can share their recent experience with trodelvy because I might be starting soon.
Patchworkmum
Member
3 years ago
Good evening ladies, I’ve just finished cycle 4 of trodelvy, apart from vomiting after the first dose, I’ve been relatively lucky. Yes my hair fell out, I sleep better than I have in the last 4 years since this shitty ca came back. And like others get constipated, good old coloxyl. But I’m still working as an aged care nurse two days a week. I walk at least a km every day. I go to mosaics every week and still meet with friends for coffee a couple of times a week. And most of all I’m still here. I’ve just had a scan and get the results next week, the nerves are starting. I wish every single one of us didn’t have this shitty disease but as we do, I hope we are all living the best life we can. Stay positive my beautiful ladies, hugs to all
Anonymous
3 years ago
Hi @Brondocs, I am so sorry to hear of your long ordeal with Trodelvy. 31st dose . . . I can't even begin to imagine. I guess I have just done my 18th dose. I did 6 cycles last year (Jan - Apr), which is 12 doses, and have just completed 3 cycles, and will have another 3 cycles before we scan and see what's going on. I feel like one of the lucky ones (if there is such a thing!) in that I am able to stay on full dose, and my side effects are manageable. I mainly get constipation; a bit of fatigue after the dexamethosone wears off; and I have lost all of my hair. I honestly don't know how you have managed through the 31 doses -- well done, but it does sound like you are having a very tough time of it.
My stomach tumours do give me some grief/ severe stomach cramps, if I irritate them with the wrong food. We have been trial and error with my diet to try to manage and keep the inflammation down. I am keeping my fingers crossed that Trodelvy is working its magic, and that come the end of April - I will be able to take a break.
Sending your some strength and hope Brondocs, . . . and anyone else who is on Trodelvy and/or dealing with the ups & downs of MBC. xx
Brondocs
Member
3 years ago
Thanks @arpie xx
arpie
Member
3 years ago
Hi @Brondocs

So sorry to read of your continuing side effects ... check out the Annabel Crabb Q&A on side effects later this month (in the discussions.)
https://onlinenetwork.bcna.org.au/discussion/25291/annabel-crabb-and-side-effects-of-treatment-online-q-a-feb-23rd-5-6pm#latest

Re the profile pic, I believe it should be a JPEG or even a PNG - and fairly 'small' .... so if you do a screenshot of a small pic you want to use & then save it as a jpeg, it should work. Good luck

take care xx
Brondocs
Member
3 years ago
Also - I have been trying to upload my photo to my profile but it is not working. Do you know what sort of file is acceptable - jpeg, pdf ?
Brondocs
Member
3 years ago
Hi @Jgameau and @lisa1407

Jgameau, Just saw your message and think it is wonderful that you were able to travel for 7 months. -though not so good to come back and face more chemo.

I am still on Trodelvy - 31st dose - and I'm sorry to say the side effects are still myriad and constant and seem to change all the time. I think my wheels( exhausted body) might be starting to fall off. For the last month I have had a lot of backpain so am taking morphine and other painkillers. Still very tired all the time also.

My husband forces me out for a walk most days and even though I wake feeling awful, the walk helps clear the fog and the pain.

I am still on 50% dose. My hair has grown back a bit but very strangely- last regrowth prior to Trodelvy was a sort of a loose afro. Now it is very short, dead straight and thin boyish look - a la David Bowie.It is really good to have SOME hair, though no eyebrows still.

I hope you are managing. Please let me know.

Send hugs xx
Julez1958
Member
3 years ago
Hi @jgameau
Not on this drug but sending you virtual hugs.
🌺🌺
Anonymous
3 years ago
Hello Trodelvy patients,
I am back on Trodelvy again after 7 months off (travelling). Sadly the bone Mets are growing and cancer has also spread to my stomach and a lymph node. I am on full dose at moment, just finished Cycle 1…. Feeling lots of nausea which is largely my stomach cancer mixed in there + more fatigue than before. I didn’t do any of the post-meds last year to get off the steroids & hopefully mitigate the severe fatigue. It worked, but sadly, I will take my dexies this time to help combat the nausea.
Just wanted to check back in, and see if anyone has any later news about side effects, hair loss (which I expect to have after this cycle), anything tips you have found to combat the effects? Positive news to share? Thinking of you all ….. xx
Brondocs
Member
3 years ago
HI Lisa1407

Re hair - I look like a convict which is hard as I used to have really nice thick blonde hair which I took for granted. I am getting used to it by now but it is a severe look.
It is cold in this weather without hair so I always wear a beanie. Maybe you should just keep it covered and let it grow a bit ?
I hope you are not as exhausted as me. I think I may have a covid hangover - my Oncologist gave me a couple of weeks off a month ago and I immediately caught covid from my daughter who brought it home on the last day of school term 2. I had anti virals but have really gone backwards since then in terms of fatigue.
Thanks for your message.
XX