Trodelvy - any info to share?

Bumping to see if anyone can share their recent experience with trodelvy because I might be starting soon. 

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

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 

Thanks @arpie xx

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

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 ?

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

Hi @jgameau
Not on this drug but sending you virtual hugs.
🌺🌺

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.  

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