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Trodelvy - any info to share?
Comments
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Hello @Lisa1407, @wendy55 and other Trodelvy patients.
I have triple neg mets and have just had my 19th treatment of Trodelvy after starting in February this year. I was quickly reduced to a 50% dose as it was knocking me out completely. I am still fatigued most of the time but I am functional and think the exhaustion was made worse by a Covid hangover from three weeks ago despite having got straight on to anti virals.
Anyway, so far it has reduced the size of my chest, brain and bone tumours and I'm keeping my fingers crossed that my next scans due soon will be positive.
If anyone has had more treatments than this please let me know. I feel like a bit of a guinea pig as the drug has not been in Australia for long and only on the PBS this year. I don't know where I am going. At least it has worked so far, unlike the other drugs I was on last year.
Love to hear back from anyone....1 -
Hi @Brondocs, Thanks for letting us know how you are going on Trodelvy. I can imagine how you feel like a guinea pig - as I feel the same way although I have had only 6 treatments and I am being treated in a large hospital. They don't have many patients on Trodelby and no one seems to know what to do in regard to doses and side effects etc. My third treatment cycle was lowered by 25% and I have had my week off extended to two weeks on two occasions. My main issue is diarrhoea which has seen me loose 12kg this year. My oncologist doesn't really know what else to do. I suspect they may reduce my dose by another 25%. I was also reading that cannabis oil helps with inflamed gastro intestinal systems, so I may ask my dr about that. I don't want to take it if it includes THC as this will prevent me from driving!! Congratulations on making it through 19 treatments and good luck with future doses. xx1
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Hi Lisa1407
Thanks so much for your reply.
My Oncologist was expecting me to have terrible diarrhoea too but instead I have had terrible constipation for which I take coloxil senna each night. All my hair fell out at the beginning after only two treatments but strangely now is starting to grow back a bit - perhaps due to the lower dose.
I am also being treated at a big Melbourne hospital and my oncologist now has quite a few Trodelvy patients - she says that she has had to reduce everyone's dose because people just can't get out of bed.
I have a friend on chemo who has used medicinal cannabis very successfully but to counter anxiety not gastric problems. 12 kilos is a lot to lose. I lost about 8ks last year on my first lot of chemo because it made me throw up so much but Trodelvy has not done that and I have regained that weight. It sounds like you will need another reduction. The trials showed that the reduced dose still works.
Do stay in touch and hope you can get the side effects under control.
Best wishes xx1 -
Hi @Brondocs, Thanks for sharing your experiences. I also get constipation after I have an infusion (due to the premeds). I am not sure what is worse! My hair is the same and until I read what was happening to you I didn't believe it was growing back a bit. Looks terrible so I may just shave my head! I will let you know how I go with dose reduction. xx1
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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
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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 ….. xx1 -
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 xx1 -
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 ?0
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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 xx0 -
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. xx1 -
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 all3
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Bumping to see if anyone can share their recent experience with trodelvy because I might be starting soon.0
