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Trodelvy - any info to share?

jgameaujgameau Member Posts: 17
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? 
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Comments

  • AziAzi Member Posts: 5
    Hi, I am to start Trodelvy in 10days. Will be interested in the symptoms to.
  • jgameaujgameau Member Posts: 17
    I have completed Cycle 1, eg 1st 2 weeks. What I can report: my nausea has been ok but I was pretty ok with A/C 4 years ago.  I’ve been a bit constipated but that’s due to the pre-meds.  I would suggest to either have less of those or just stay on top of treating constipation. Apparently the pre-meds are pretty critical to control the nausea and vomiting.   
    My fatigue was very bad with the 1st one, but 2nd week I was about 50% better. Not sure why?  But overall, I would say fatigue is the most prominent side effect, and it’s what others seem to experience as well.  
    My hair has just started to fall
    out. I will monitor l, but expect I will lose it completely.  
    Summary - a very rough 1st week, but got better, and it it works — it’s worth it! 
  • jgameaujgameau Member Posts: 17
    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. 
  • AziAzi Member Posts: 5
    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. 
  • arpiearpie Member Posts: 6,370
    There was an article in Sunday's Telegraph .... I've taken pics of the article ...




    All the best, ladies xx
  • SteffiOZ22SteffiOZ22 Member Posts: 6
    May I ask how you got to get Trodelvy? I got diagnosed with triple negative breast cancer two days ago which spread to chest wall, lungs and liver. Not in lymph yet but just a matter of time. I am still waiting for my oncologist appointment in Sydney, but I read a lot of Trodelvy but it’s not eligible and expensive?? Any help would be appreciated. I am 36yr with a 2 year old daughter and in a deep deep hole
  • jgameaujgameau Member Posts: 17
    @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.  
  • BrondocsBrondocs Member Posts: 18
    Hi All

    I 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
  • jgameaujgameau Member Posts: 17
    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.   
  • BrondocsBrondocs Member Posts: 18
    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.
  • noosa_blue150noosa_blue150 Member Posts: 193
    https://www.eviq.org.au/medical-oncology/breast/metastatic/4079-breast-metastatic-sacituzumab-govitecan#side-effects

    Info has made its way onto EVIQ site although showing not on PBS ( that was announced a few weeks ago so needs updating). Makes it clear that you have had to have 2 or more types of therapies /‘chemo/treatments before being eligible for it. Great news though for those that meet criteria as results have been very promising 
  • Lisa1407Lisa1407 Member Posts: 258
    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
  • wendy55wendy55 Member Posts: 744
    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
  • Lisa1407Lisa1407 Member Posts: 258
    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

  • jgameaujgameau Member Posts: 17
    @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 
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