Trodelvy - any info to share?

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. xx

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 xx

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. xx

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....

@Lisa1407 I did Trodelvy for 4 months earlier this year, from Jan thru to early May.  I had 12 infusions/6 cycles.  I think I stayed on the full dose the whole time. Yes, I was fatigued, but it was really the initial infusions that wiped me out; it got better with later cycles.  You could also try acupuncture before an I/V. I did and found it helped.  I also was up & down with diarrhoea and constipation; just kind of got used to having to take senna col or similar to help regulate. And I lost all my hair, but it’s now growing back.  The Trodelvy workers well on my bone and skin mets. I’m currently not doing any treatment- having a break and travelling! 😃 
good luck with your side effects.  If fatigue continues, I would say yes, ask for a lower dose.   xx 

Hi @wendy55, Hopefully the eribulin will last a bit longer! Good luck with the scan. You should be able to access Trodelvy  though. PBS access as follows:

Unresectable locally advanced or metastatic triple-negative breast cancer

Treatment Phase: Initial treatment

Clinical criteria:

• Patient must have progressive disease following two or more prior systemic therapies, at least one of them in the locally advanced or metastatic setting,

AND

• The condition must be inoperable

Hi @Lisa1407,
So sorry to hear of your side effects, just a quick question who can access this drug is is soley for women with Triple Negative, I am still on eribulin, have been now since dec.21st2021, scans in two weeks then find out the results,pleased to hear that your skin lesions are diminishing,you need some good news to counter the tiredness and belly problems.

wendy55

Hi Ladies, Just wondering how you are going with Trodelvy. I have just finished my second cycle. I am sure it is working (based on size decrease of skin lesions), but the side effects are not great. I am so tired - the first couple of days after treatment I sleep constantly. I also have problems with either constipation or diarrhoea. I also have extremely low blood pressure, although they are not sure what is causing this. Has anyone had their dose lowered? xx

Hi Everyone

Thanks for your great news jgameau, I too have had good news about Trodelvy. After 8 treatments, my scans showed that my lung mets have shrunk and most of my brain mets are gone. It is not clear about my bones but I am very happy to know that the Cancer has not progressed. Also, I feel  bit better because my oncologist reduced my dose by 25 % two weeks ago to try to ease my exhaustion and this has worked. Still tired but have a bit of energy.