Sacituzumab Govitecan (Trodelvy)

Hi Run4it. I was wondering if this would be offered as a clinical trial, so looked on the cancer research website as they list all the clinical trials available there, and unfortunately it isn't listed. I don't know if it will be possible  any other way until it is approved. Sorry I can't help any other way, but didn't want to leave your post unanswered.

Many thanks Chelle. I wonder how we can speed up approval or raise awareness that UK patients can't yet access this drug.  It might be my only hope to try.

I am so sorry,  I wouldn't even know where to start. Have you spoke to your oncology team about this? I know this must be very stressful for you. You can call the Macmillan support line and chat to someone there. It is a free call number and they are available 7 days a week  from 8am til 8pm on 0808 808 00 00. 

Hello RUn4it

I'm trying to find out about this trial too - for  my partner.  I think they may be going to run trials in the UK soon but don't know where. Where did you hear about it?  

My partner has metastatic bladder cancer - the main cancer in the bladder responded well to chemo and RT.  The metastasis came back and did not respond to licensed immunotherapy.  He's feeling good on his treatment break and the mets are slow growing -  but this Sacituzumab Govitecan trial was mentioned as an option recently. 

Hope you are doing OK at the moment, or have found another trial.

Hi Run4it. I today have spoken with my oncologist and she is referring me to Barts Hospital who apparently has access to it. I know Gilead the drug company are accepting referrals from oncologists on a patient case basis. All my treatment so far hasn't really worked for long, so I'm hoping I'll be accepted and start on this drug soon. 

Hi Miss Sunshine22,

Bizarre timing as my oncologist at the Beatson has started the paperwork to allow me to get Trodelvy too. Hopefully I'll get it in January. They are seeing promising things with it in America.

Lots of love & hugs

Hi Run4it

That's great news. Let's hope it works for both of us!  Do let me know how you get on. 

Xxx

Hello Miss Sunshine22 Run4it

i am hoping to start on Trodelvy next week and just wondering how you both got on with it? This will be my fourth chemo regime since November. I hope its been effective for you and the side effects haven't been too bad?

Hi fhgirl and Miss Sunshine22,

I so hope Trodelvy works for you.  I’ve been getting on pretty well on Trodelvy so far.  Been on it since 27-Jan, completed 6 cycles, so 12 doses.  I get the usual tired feeling once the steroids leave my system and I’ve had total hair loss, for the fourth time now.  I do get low white blood cell counts so have to take two Filgrastim injections a week to boost my counts.  I’ve heard some people get really bad diarrhea and vomiting but I’ve had neither of these thankfully.  I sometimes get achy inflammation around my chest.  Every few weeks I take a fever, chills and shaking with no explanation but it goes away by the following day.  I’d be interested to hear if anybody else gets this.  I also get itchy legs weirdly on my week off.  The worst side effect for me though is the cough and shortness of breath, really bad days four and five after infusion.  I’ve been able to remain active on the days I don’t have shortness of breath, going for walks and I can still manage out a slow jog on the days the steroids are still in my system.  Love the steroids!   I actually feel better on treatment weeks than on my week off, probably the steroids again.

But I’ve left the best till last.  After three cycles, so 6 doses, every single tumour had shrunk, every single one, and there are a lot.  Average overall shrinkage by 20%.  I was so pleased!  I just had another scan yesterday so hoping it’ll be ok.  Really hope it works for you x

oh wow Run4it that really is fabulous news! and i hope yesterday's scan shows the buggers have shrunk even more!

it sounds like even though the side effects are there, you are managing with them.

I really hope i will start on this next week and i will be sure to follow up on this thread with my experience. Please do also share your latest scan results if you are able. 

i have been cold capping with EC and have lost quite a bit of hair but still have quite a lot also (my hair was thick). I read somewhere the first infusion is given over 3 hours so if i continue with cold capping, that'll be a long time in hospital!

I also read one of the primary side effects is low neutrophils and I've experienced this a few times over the course of treatment.

Really very well done to you. Im struggling to find information and people's experiences on Trodelvy and so to hear this  is very heartening. Of course we all respond differently but I really am pleased for you.

x