Sacituzumab Govitecan (Trodelvy)
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Well, I am moving on from Trodelvy. After 3 cycles, my CT scans came back as growth. I have more spots on my pleural lining. The spot seen on my Jan scan on my pluera grew in size. The lymph nodes in my abdomen have remained the same more or less. They grew one way, but shrunk in the other measurement - except for one lymph node and that one grew. There a small lesion now on my T6. And then there are multiple lesions on my liver. The biggest being 2.2 x 2.2 cm that weren't there before.. or grew. Not sure. I've always had lesions on my liver, but they hadn't grown since the beginning of time. However, on the Jan scan they did say there were little hypodensities too small to measure. So maybe those are the lesions.
My oncologist is taking me off Trodelvy immediately (my next infusion was for tomorrow 4/19). He's ordered a liver biopsy now that the cancer is in an area that can be biopsied. He's putting me on doxil. Argg! But we did talk about some other treatments for down the road. While it was not what I wanted to hear, I did have a feeling Trodelvy was not working for me since my CEA numbers tripled and my other tumor markers went up past the "normal" zone. I am disappointed. Not mad, just disappointed. I worked so hard to get the chemo approved through my insurance company AND I finally am pronouncing sacituzumab correctly! HA.
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Holly so sorry to hear that I hope your next treatment works really well.
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Nicole, how was doxil? I think that is the next treatment path for me. I have a liver biopsy scheduled for Thursday. Keep me in your thoughts.
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Holly doxil was easy peasy..it didn't work for me..shame..but nothing really has yet.... I hope it works well for you. I had no side effects.
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Today was my first round of Trodlevy. I was given a Fomatidine pill, to prevent gastric problems. Paracetomol tablets, to stop back pain. A Loratidine tablet to prevent rashes. Then intravenous saline, then dexamethasone, then Aloxi [anti emetic] and finally Trodlevy, administered over 3 hours. The nurse stayed with me for the first 15 minutes. I was observed every half hour to see how I was doing , then more saline for 45 minutes before I was allowed home with Omaprazole , dexamethasone and Loratadine. Does this sound like your protocol ? It was a long day!
After my cancer switched from hr+ to triple negative and I progressed on Abraxane, then Halaven. I was found to be a suitable canditate for Trodlevy . I am in the UK and the NHS does not fund Trodlevy yet ,other than in trials. We pay for private health insurance [ it was part of my husbands employment package, but when he retired we chose to pay ourselves so I could remain with the same Oncology team ]. I feel fortunate to be able to try this drug.
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hi denny, glad you were able to access it even tho NICE is still messing with supplying it.
My premeds are ondansetron + 20mg iv dexamethasone. Then I take ondansetron again that evening and have 2 days of 4mg oral dex. I've seen people have a lot of different premed protocols but yours seems to cover all the bases.
Hope you're having a good day post infusion
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Thanks for your input, moth. I did not sleep much last night and have a bright red face from steroids. I only had 8mg of iv dex , I would be climbing walls on 20mgs. 8mgs for me for 2 more days, when I know I will be tired but wired. If otherwise I continue to feel ok, I will be in 'negotiations' with oncologist to drop the dose next infusion day . I am fascinated how we all react differently to meds.
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Denny...sorry but to be clear...arent you the person that has had breast cancer for like over 10 or 15 years stage 4 and were doing well bc you were triple positive??? If so ..bummer that you receptor flipped... sorry about that. I did receptor flip too but I was unfortunately not triple pos.
Hope you do well on Trodelvy...
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hi nicolerod, I was initially diagnosed 2007 hr+, mets 2013 hr+ ,then flipped to triple negative last year. I will try and update my info. when it becomes easier to use this site ,but have always had trouble.
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Denny...me too..I have had a hard time trying to update my info always as well.
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I had second infusion of round one today. My bloods, neutrophils etc. were better than last week. Blood pressure excellent for my age , oxygen levels 98% [I have lung mets]. All of which were a surprise, as I have been feeling such fatigue and out of sorts, like jet lag, not helped by poor sleep which I know from past experience is caused by steroids . I went out for a walk, day 6, where I usually have a sit down half way ,but I had about 4 or 5. I also had the big D that evening, otherwise I have been constipated. I have had the same protocol as last time , but less steroids for the 3 days ahead , hopefully I will sleep better. Looking forward to the long break.
Hope everyone is doing their best, hugs if you need one. x
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Round 2 , first infusion. I had problems sleeping during the days 8 to 11. I had diarrhea on day 12, but I took loperimde which stopped it after 3 episodes. I felt reasonably well with the week off treatment. I would feel energetic enough to do some decorating say , maybe an hour or 2 then a wave of fatigue would suddenly hit me. I sat down with a drink and a snack ,after about 45mins. I would be able to start again. Most days, if I was at home, I was having a 30 min nap after lunch. Day 17 serious hair loss started by day 19 I shaved off what was left of my hair and started wearing a wig. Lower steroids this time and infusion given over an hour. I have no idea if this is working, I will have a scan after 3 rounds. I may be the only person posting, but while I think this may help others who are given Trodlevy in the future, I will continue.
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Denny...I usually post a lot in the FB Trodelvy group. Glad you are doing well on it. I scan June 22nd. I shaved off my hair before I even started it...didn't want to see my hair falling out again...
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nicolerod, thanks for your reply. I dont have a face book account, my choice, so I do miss out on some information.
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Denny I hear ya..I actually HATE FB..I do...and I never even had an account until I got stage 4...but for the groups on there it has been a blessing there is way way more movement on there with every single treatment, than on here
. I love the clinical trial thread here and the Liver mets thread here but really those to me, are the only ones that really move.... I have yet to have a treatment work more than 4 months so I am not having high hopes for this...I started this Dec/Jan....I am doing unconventional treatment along side and I think that is definitely making the difference this time for me. but we will see.
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Nicolerod, I am hoping Trodlevy works for a while too, I have positive thoughts about this, which I didnt when I went on Halaven. Scan after round 3 and I will find out. Keep well and keep posting .x
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I forgot to post here. It didn't work for me I had 5 treatments, 2 cts. No doubt it's totally ignoring it. I've started sudden liver failure after finishing #5. They're trying to respond the liver or else I'll end up in hospice
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hello moth, I had read on another thread you were suffering. It's devastating when a med fails. I am no oncologist but there are a few names of meds missing from your list that you have may not have tried yet. I hope your docs find you the best one. Thinking of you everyday.x
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thank you denny10 🤗 I'm still hoping I'm turning around somehow
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Abraxane failed. I'm starting Trodelvy next week. Has anyone here continued working full-time during treatment with Trodelvy? By the list of meds at my pharmacy right now, it seems like managing side effects is going to be my new full-time job.
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Hi gr4c1e, there are not many on this thread. I gave up work about 8 years ago when diagnosed with mbc so not much help. I am of retirement age now, but I dont think I could work have worked when I was younger because of disrupted sleep, caused by the steroids. It's hard to predict how well you will cope with the treatment, we are all unique in our response. Taking meds to stop side effects can be time consuming initially. I have found fatigue which hits me suddenly is the worst side effect, but it wears off on my week off . I hope you do well on Trodlevy.
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Thank you, denny10. I'm really not looking forward to the steroids. Been there, done that - didn't sleep a wink!
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Hi gr4cle,
I have worked since I was diagnosed at 34 years old. And I have done a lot of different chemo's. I am a pharmacy technician. Like denny10 said, fatique is the worst. I am able to work because I have the intermitten fmla, when i am having bad days and cannot come in I just use my fmla and not worry about losing my job. I have my set schedule for chemo to be on Fridays, Fluids on Saturdays because I don't like to drink as a result of chemo. So, I work Monday thru Thursday, and use the weekend to recuperate. I am not a person that can sit home, that will put me in depression.
Trodelvy by God's grace has been working for me. I have been on it since August of 2021. My last 3 scans have been great! I am on a summer break now as a result. I told my onc. i will be back in August to resume.
I hope you have great results also!
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Thanks, nayda985! Had my first infusion yesterday. It was explained to me that it was going to be a long appointment because the infusion would be done slower than the usual, about 3 hrs and they would keep me for a half hour observation afterward. Lots and lots of premeds took another hour. Zofran, Benadryl, Tylenol, and Atropine to start, so I mostly slept through the first hour of the infusion. They sent me home with one Zyprexa to take before bed.
So, I just woke up and feel a little tired, but okay. It's still early so I'm waiting for the nausea, diarrhea, and cramping I was warned about, but so far I'm just thirsty as heck and drinking lots of water. They prescribed a bunch of stuff that should help if things change over the next three days, but I'm trying to stay positive and hope I won't need them. At the same time, I'm glad I have them just in case. The way the side effects read, nausea, fatigue and diarrhea are right at the top, so I just might be enjoying the calm before the storm right now!
Thanks for sharing your work experience. I, too, like to stay busy. I went on FMLA for two months in 2011 and was absolutely stir crazy by month two! I like working and I'm not mentally ready to let it go, so it's reassuring to hear your experiences.
Congratulations on your great scans!
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Nadya985 so pleased to hear you are doing well on Trodelvy, long may it keep working. Enjoy your summer break.
Gr4c1e I have lots of pre meds , but the infusion now takes an hour not like the initial 3 , the whole process takes about 4 hours. I am sent home with lots of meds to take to deal with side effects. I only occasionally have had to take anti nausea pills. I get the big D 4 days after the infusion , [TMI- usually only once but explosive, ] so no need for anti diarrheals. I have never had cramps. I only sleep for about 4 hours on the 4 [now 3] days I have steroids . The side effects are becoming quite predictable so bearable! I hope you do not get too many side effects and you can continue to enjoy working.
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Thanks, denny10! I decided to take the post-infusion meds for nausea and the big D as prescribed, just in case, but also because I have the weekend to try them out and see how I feel before work on Monday. I also scheduled next Friday off for infusion #2, so I have a short work week, followed by a long weekend. I also am happy to report that I'm not really experiencing any side effects, from Trodelvy or the steroids. They sent me home with a dose of Zyprexa to take before bed and I slept for 9 hours straight through. Last night 4.5 hours, but still feeling okay.
The nurse explained that the infusion is always slow, and longer the first time, but will get much shorter by the second round. So, next Friday will be premeds like before, but the Trodelvy infusion will speed up to 1.5 hrs, instead of three. While she said it's rare, they're watching for allergic reactions, so slow infusion is best in the beginning.
Then I get a week off. Yay!
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So, not all good feels the past two days. Hard to say if it was symptoms of dehydration? Steroids? Trodelvy? The side effects are the same for all three; fatigue, muscle weakness, dizziness. Hard to tell - who's the culprit? - I have no idea, but I'm feeling better today after downing a whole quart of hot & sour soup from the restaurant next door to my office yesterday. (dehydration for the win?) My second infusion is tomorrow and my order for hot & sour soup is locked down for next Tuesday! Strictly for medicinal purposes, of course.
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hi gr4c1e, sorry to hear you have not feeling your best. It is important to keep hydrated, the soup sounds like a win win whatever the cause.
I have a new cautionary tale . I came out in a rash around my neck, which I now think was an an allergic reaction to sunlight. It wasn't sunny, just bright and I nipped out to pick some flowers. I am usually pretty good at wearing a hat and factor 50 suncream but no so on this particular day , but the rash followed the exposed area of skin around my neck, argh ,still a bit sensitive, but clearing up now.
I have an onologist appointment on monday, to plan scans etc. let the scanxiety begin.
keep well and relax this weekend.x
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)Sziasztok én tegnap kaptam meg az elsö Trodelvy kezelésem fél évet vártam hogy megkaphassam csontomon és májamon van nekem is utolsó reményem.Ölelés nektek Budapestről.
Edited by Mods to add translation:
"Hello, I received my first Trodelvy treatment yesterday. I waited half a year to receive it on my bones and liver. I have my last hope. Hugs to you from Budapest."
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)Olvasom sokan írjátok hogy 3orat folyt nekem max 1 volt lehet hogy nem tesz jót így a szervezeteknek 😪 .
Edited by Mods to add translation:
"Many of my readers write that it took me 3 hours, max. 1, so it might not be good for the organizations"
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