Sacituzumab Govitecan (Trodelvy)
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WOW, denny10! That rash sounds uncomfortable. Also sounds like the meds or combination of, could cause sensitivity to sunlight. Definitely a good question for your oncologist.
I definitely relate to your (our) scanxiety. For me, it's one sleepless night followed by a day of lying still, deep breath, hold it, aaaannnnddd breathe, over an over and over again. I'm sending you some positive vibes!
Had infusion #2 yesterday and so far so good. It went much quicker this time. There was a bit of over crowding in the infusion rooms, I'm guessing due to the upcoming July 4th holiday, so they set me up in of the private suites alone. It was AWESOME! I had a fancy massage chair with heat controls, my own TV & remote. There was even a little bell to ring if I needed anything!
HECK YEAH, I rang it! Three nurses came running, and then I asked which one was the consierge and could they bring me a wine list!
I'm pretty sure there's a note in my chart now stating that I'm not allowed in the fancy rooms any more. Strictly general population for this one! Haha!
Stay safe and out of direct sunlight!
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The scan results are in- a mixed result. Lung and spine are stable , breast lesions diminishing but liver shows progression. My next step is an a MRI to see if ablation on my liver would be appropriate. I will continue on trodelvy while it is holding some of my cancer at bay . I am feeling sad and deflated , I wanted stable.
gr4c1e I hope you continue to deal with side effects and get a good outcome.
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Well that sucks, denny10. Kind of a good news/bad news situation. I'm right here with you! Seems like two steps forward, one step back. With me, the Trodelvy side effects are definitely manageable, but my right lung has been acting up. Some rails this last week and coughing, I'm hoping it's allergy related.
Keeping my fingers crossed for both of us!
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I have seen my oncologist today. MRI result show the progression I have in my liver: more little bits and previous mets getting bigger [although my liver function is within normal range at the moment and has improved between the last 2 infusions of trodlevy. ] The radiologist advised I was not a suitable candidate for ablation/ radiation so I am going to stay on Trodlevy , have 3 more rounds and then have another scan. In the mean time my oncologist is researching what to add into the mix. I hope there is something !?!?
gr4c1e, how are you feeling? Have you recovered from your cough? Thinking of you
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Thanks for checking in, denny10. The cough is subsiding, could have been the Trodelvy, could have been the weather for all I know. Had good breath sounds during my office visit, so the rales are gone, just an occasional cough now and then. Much like you (sorry to hear about the liver progression in your liver) I am now on the MRI fast track because of a headache that popped up last Thursday and was still present on Friday of my office visit with my MO. My first head/brain MRI since the lung mets dx. I'm a little nervous but its weeks away and I'm hoping the headache takes care of itself by then. My BP has been higher than normal and I was running a low grade fever for three weeks prior, so maybe that contributed to the pressure in my head! Right now my temp has stayed steady and normal for the past three days, so I'm hoping its just the stress of changing to Trodelvy. My MO said the infusions get easier after the third round, so she advised I stay the course. So, I will because I love a challenge! I have the second infusion of round two this Friday.
denny10, I'm keeping positive thoughts for ya! I'm hoping they come up with the right combo to keep your liver in check! Sometimes, the waiting is worse, though! My MRI isnt until the first week in August and my CT and bone scan isn't for two more months. It's frustrating waiting for the tests and then waiting for the results! Know what I mean?
I'm also a little tired of the good news/bad news. Good news, my labs & breathing were great. (Fantastic!) Bad news, new headache symptom signals we need to look more closely at your brain. (Wait, what now?)
Hang in there, and I will do the same!
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Hi gr4c1e, It's so hard not to blame 'normal ' headaches, coughs to cancer, just shows how we live permanently in fear, however low that anxiety may be on a day to day level.
Waiting for scans, then results is horrid. I will be walking beside you, one step at a time, we must keep going.
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denny10, we're sorry to hear about the progression. Sending positive thoughts and best wishes that your next treatment works well for you!
The Mods
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Just an update. Had my MRI yesterday. I have a 12mm x 9mm brain met in the right parietal lobe. So that sucks. Meeting with and RO to discuss options.
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Sucks is a polite word for a horrid situation! I hope you get some answers when you meet with your medical team.
I have been told I need another scan, sooner rather than later because of my liver activity. Enhertu has been mentioned as my next line of treatment if my liver is still not responding to Trodelvy. I seem to be rattling through various meds and it is beginning to get scary - what next?
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Sorry to hear this denny..did you have any symptoms??
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Thanks nicolerod, no signs or symptoms at the moment , just visible on scans. Bloods show liver is working within 'normal' parameters. Awaiting chat with oncologist to book scans again to see how fast things are moving.
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Denny so your MO just requested a brain MRI for no reason? Or did you have the normal PET and it showed on there?
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I had a 3 monthly CT scan to check on how I was doing after starting Trodelvy , then an MRI to get a more detailed picture of what was showing in my liver.
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Met with Neuro/RO and she seems to think this brain met is a mystery! So she's presenting my case before the Tumor Board on the 19th and I have another MRI scheduled for the end of this month. As per usual - we wait.
denny10 - think about you, and waiting right along with you! Sometimes the waiting for new information or the next course of treatment is not so bad when you're not waiting alone. Positive thoughts heading your way!
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I think of you too, gr4c1e, at least your neuro/ro isn't panicking ,so obviously whatever the brain met is they are not too worried at the moment. i like it when my onc. takes my case to discuss with colleagues. I had a video conference with another oncologist [at my usual onc.s' request] it was good to hear he would not have done anything different in my list of treatments.
i am enjoying my week off treatment, staying with my grown daughter, which is distracting for the time being. Back to lots of appointments next week.
I hope you are finding things to do that give you pleasure. Keep going!
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I spoke to my oncologist, I am going to have one more round of Trodelvy, then CT scan and MRI in 3 weeks time.
gr4c1e, have you heard anything from the tumor board?
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Hey denny10! The general consensus of the tumor board was that the lesion on my brain is MBC and not some alien intruder, just more of the same. It's small and asymptomatic, therefore, more waiting. I have a brain MRI scheduled on the 30th. Part of the problem here is there was no "before" picture, so the recommendation at this time is to gather data to make a more informed decision. We discussed SBRT as an option if the lesion goes in the wrong direction (gets bigger) but if it stays put, we'll just keep an eye on it for now. The Neuro also said there is no evidence of edema on the MRI which is a good thing. I call it my "skid mark". I'm not so sure it's worthy of tumor status just yet!
The only reason we found it in the first place was a perfect storm of coincidences. The Trodelvy has been rough for me and I had headaches, dizziness, blurry vision, difficulty walking (neuropathy) which are all ALSO symptoms of a brain tumor - so they took a picture of my head to rule it out! Then "oops" found a tumor.
BTW, I also developed pneumonitis and haven't had an infusion since July 22nd. That coughing I was complaining about turned out to be a very big deal. Spent the first week of August loaded up on antibiotics and then switched to prednisone, which I'm currently tapering off right now - started at 75mg and I'm down to 25mg now. I see my MO on Friday this week and I have no idea what happens next. I think we're going to stay with Trodelvy - but I'm not sure. Being off it for a month has been awesome. I've felt the most "back to normal" than I've felt in the last two years. Of course, being hopped up on steroids helps! I feel like I could run a marathon!
Even though I don't like the side effects, I did learn that Trodelvy does pass the blood brain barrier - so, if I'm able to continue, it could possibly rid me of my little skid mark! No intervention required. Fingers crossed there are pre-meds to fend off pneumonitis! If not, I have no idea what's happening next. My next CT & bone scans are scheduled for mid-September, so it looks like you and I are getting scanned around the same time! I'm hoping to get another cycle of Trodelvy beforehand - but I won't know until this Friday if it's safe to proceed.
So. We. Wait.
I think we're both overdue for some good news for a change.
Sending hugs!0 -
gr4....what do you mean exactly by "had trouble walking"...like your legs giving out, pain, ???
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nicolerod - no, actually the opposite. Before Trodelvy, I developed neuropathy in both feet from Abraxane. It wasn't that bad - completely manageable, mostly numb, tingly and occasional pins & needles. It bothered me at night, so my pain team prescribed a very low dose of nortriptyline to take in the evenings as needed for sleep.
Then I started Trodelvy, which seemed to excelerate the neuropathy in my feet, I developed neuropathy in my hands as well, almost immediately after the first cycle. So, as prescribed by my pain team, I can take the nortriptyline as I need it and I increased the doses from every once in a while to every night. The side effect being - my feet went completely numb. I couldn't feel them at all, so my gait changed and I started tripping A LOT! I tripped over everything and often tripped over my own two feet. I was actually afraid driving my car because I couldn't feel the pedals.
Since we've stopped the Trodelvy, I've stopped taking the nortriptyline. I find that a little pain helps me feel the floor. My brain skid mark had nothing to do with my feet. It was the Trodelvy and the norttriptyline. HEY! I just realized it has the word "trip" in the middle! LOL!
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LOL ref> trip
oh ok i understand. I hope it gets better. I have begun to feel the beginnings of Neuropathy as well...not bad but I have loaded up on B6 and Bromeline.
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So, with the help of Prednisone, Bactrim and pantoprazole for the next 30 days, we stay the Trodelvy course and hope for the best. We went ahead with the infusion on Friday last week and right now I'm not experiencing any respiratory symptoms or coughing so I remain optimistic. Next infusion, next Friday, and hopefully goes as well as the last.
MRI tomorrow - results & consult with Neuro the following day. I'm a little nervous. Not sure what to expect but I'm glad she's not making me wait a week for the results!
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gr4c1e, I hope the the MRI gives you the results you want. As you say, at least you will not have to wait and worry about the results. Good luck.
I cannot get an MRI/ CT scan until the 12th, I had hoped to get it done next week, so I will have to rearrange my oncologist appointment as I was due to see him that day. Grrhh, more waiting!.
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Well, no such luck, denny10. Unfortunately, the mets in my brain have gotten bigger, so I'm glad I didn't have to wait 3 motnhs to find that out. I have an appointment on Tuesday for the mapping before we start radiation.
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oh ****, gr4c1e, definitely not what you wanted. Are you staying on Trodelvy while you have the radiation or will that have to change too? I wish I could say something positive, but just want to swear and cuss on your behalf.
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I'm staying with Trodelvy and my radiation will be on my off week, I think. I'll know more after the mapping is done. Turns out it was a rogue chemo nurse that didn't give me ALL of my premeds before my infusion in July that probably caused the pneumonitis. I've had another cycle since without any problems and last conversation with my MO, she wants to stay the course. Scans again on 9/14. So. We. Wait.
denny10, please feel free to use all the swears. I know I have!! I keep trying to stay positive. The Neuro thinks this is something that can be fixed in 3 radiation treatments. Fingers crossed.
In the meantime, I'm feeling well and thinking of you! I hope you're feeling well, too.
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Hi gr4c1e, I hope the radiation treatment works well for you. I had some on/near my spine. The immediate side effects were horrible, but I've not had pain since. 3 zaps should not be too bad, good luck.
It's my week off, so I am enjoying catching up with friends and family and doing the more physical stuff I dont do because of the fatigue during treatment weeks. [ making and putting up new curtains at the moment].
Sending you good wishes, x.
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denny10, enjoy your week off! This week is also my week off, with the exception of getting my photo shoot done (CT/MRI) for the mapping yesterday. Nice to meet someone who actually knows how to sew! I still have my portable Singer sewing machine that I got when I was a teenager and it still runs!
In the meantime, the Neuro said 8 to 10 days to finish mapping, then they'll call me to start scheduling radiation appointments! And...........so it goes, we wait!
NOW, you've got me thinking I need to dust off my Singer! I love Victiorian style cotton nightgowns, but they don't make them anymore. Well, they make them, call them "vintage" and charge you three times what they're worth! Just found a Butterick pattern that might do the trick!
Thanks for the inspiration, denny10!
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hi gr4c1e, I love the look of victorian nightgowns [ I am a pj person] . Get some lovely, soft cotton and sewing with your Singer you will soon have an 'authentic' nightgown. I learnt to sew on a treadle Singer machine , but have my 30 year old bernina now. I find sewing and recently knitting, calming when I have the steroid rush post chemo.
I am pleased you are getting a plan in place. I find the unknown and waiting harder than bad news [almost]. Good luck with all those appointments.
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I had my scans earlier today. After, a quick unexpected telephone chat, my oncologist gave me the good news , the liver lesions are now responding to Trodelvy, but [why is there always a but!?] I have a clot in my lungs where I have cancer. Tomorrow, I am due to go to an hospital appointment for pre chemo assessment and blood tests and will start treatment to get rid of the clot. I will have a proper consultation on Thursday with the oncologist. I am hoping I will stay on Trodelvy for bit longer.
Wishing all Trodelvy Travellers well.
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