Sacituzumab Govitecan (Trodelvy)
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Thanks DoubleBloom. I will read all the posts.
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The ASCENT trial finally published. (we've had prelim reports & some data but this is the official)
https://www.nejm.org/doi/full/10.1056/NEJMoa202848...
just look at this waterfall plot!
& MEDIAN OS = 12 mos!
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I started on Trodvely last Thursday (25th April). Hope to see some positive results without my QOL going downhill or any type of reactions. I have been on low dose of Prednisone since previously I had severe skin reaction and vasculitis with Adriamycin.
I have read about everyone's experience with this drug - thanks for posting this information. On Facebook's "Trodelvy for Stage 3 and Stage 4" forum, someone had mentioned that they did not have severe side effects with the first or second infusion since it was a slow one (3 hrs and 2 hrs) but got severe stomach cramps with the third infusion since it was done over one hour. Has anyone seen this? Should I ask my MO to order a slow infusion in future? I didn't have any stomach pain with my first (3 hour) infusion.
Please continue to post any new information you may have in dealing with the side effects. This thread seems to be very slow! Not much participation.
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S3K5, no I'm not on Trodelvy atm. It's not even approved in Canada yet. We're hoping it will be soon. I'm still on first line atezolizumab + taxane right now.
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S3K5 - I was in trodelvy at 50% dose June 2020-Jan 2021. I usually did it over an 1.75 hours. The two times I sped I did 90 minutes I experienced more nausea. Maybe coincidence, maybe not.
I am back on trodelvy at 75% now. I am actually doing better with side effects at 75% dose compared to 50. I’ve been doing it over 2 hours, not sure if that’s what’s making the difference.
I did intentionally run it slower because I had seen some posts on Facebook saying that it helped. Figure I can always experiment and tey
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Hi everyone, my mom just started her 3rd cycle of trodelvy today. She has small mets in both lungs. She had a CT scan yesterday that showed stable. For those of you who had regression, how many cycles did you have before you saw the regression? I'm thankful for stable, but still hoping for regression on the next scan.
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jc73 I was on Trodelvy from mid september to the end of december last year. My scans showed NED so my onc discontinued all me chemos (including my intrathecal). Unfortunately four months later I had three new tumors in my brain. I had to go through gamma knife radiation and was restarted on Trodelvy as well as my intrathecal chemo. I just had my second dose on WEdnesday. I'll have a follow up MRI of my brain in another month to check for new tumors.
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jc73, I had 3 full cycles before my first scan which should showed regression. We lowered the dose and my next scan after 4 more cycles showed stability.
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I just had a 2 week break for radiation and my cancer thought it was vacation time and decided to throw a party. I see the doctor on Tuesday and hopefully continue Trodelvy and it gets everything back under control.
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DoubleBloom, that’s pretty amazing that you reached NED. I will be praying for you to get back there again. Trodelvy worked so well the first time I’m sure it will kick it in the butt again!
Wanderingneedle, may I ask what the reasoning was for lowering the dose? Side effects? I’ll be praying that trodelvy gets your mets back under control after your short break.
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jc73, yes the reduction was for side effects. I mainly had problems with diarrhea and fatigue and the reduction helped a lot. I had 2 blood transfusions and that also helped with the fatigue. Since going back to full dose the side effects have not been as difficult and I’m hoping to continue. I’ve had a lot of treatments, some as ER+, and I’m hoping there are some more out there that will work for a while.
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I receive IV Emend as a premed which helps incredibly with the nausea. It is also available as a tri-pack which you can take at home.
Have any of you had mouth sores? My gums are raw and inflamed. My doc px a steroid mouthwash which seems to be helping.
Hope you all are having a nice weekend.
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Doublebloom, I had requested for Emend with my second treatment since I had bad nausea last time. The nurse told me that they usually do not prescribe this but gave me script for Zofran. Today (day 3) the nausea is really bad.
Wish I had Emend since it had worked for me 10 years ago!
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SKR5 Would it help to ask your doctor (instead of the nurse) while explaining how zofran doesn't help and you are suffering? Can you request Emend?
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DoubleBloom, my MO finally sent the prescription for Emend to the pharmacy. Hopefully I should get by today evening for tomorrow's treatment.
How often do you all get the PET scan or MRI? After how many cycles did you know that Trodelvy was working or not? I completed one cycle and will start my 2nd one tomorrow (3rd infusion). I have too many liver mets and extensive bone mets too. Hoping this drug works!
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S3K5 - Emend helped me a lot with the nausea when I was on Enhertu and I continue to use it as a premed infusion with Trodelvy. I'm having my second infusion of my 3rd cycle of Trodelvy (so tomorrow will be my 6th infusion). My first scan on Trodelvy will be at the end of next week, so after 3 full cycles (~10 weeks because I took one extra week off between cycle 1 and cycle 2 to get my second Moderna vaccine). I hope that Trodelvy is effective for all of us!!!!
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sk35
I'm happy that you advocated for yourself to get the Emend and I really hope it works well for you.
On average I have a PET twice a year and Brain/Spine MRI four times a year. I have an extra MRI this month as a six week follow up since I had gamma knife on my brain in April..
I had six doses of Trodelvy in the fall and clean scans (both Pet and MRIs) at the end of December. My recurrence occurred in April and I just had my 3rd Trodelvy treatment yesterday.
I only have mets in my brain and previously my spine (which is currently controlled leptomeningeal disease).
Hope this helps!
I'm praying for all of us.
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I find that Troodelvy makes my body tremble. Arms, legs, torso. Anyone else?
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DoubleBloom, Yes! After my third infusion, I noticed trembling in my hands, legs and torso.
I also started having neuropathy in my toes for which I have been prescribed Lyrica, I started this today.
Theresa, hope your scans show that Trodelvy has worked so far and you continue on this treatment, as long as it is tolerable for you.
Tomorrow I have a MRI scan ordered by the Radiation Oncologist to ensure the spine tumors are not anywhere close to the spinal cord.
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Hi All,
Unfortunately my first CT scan after 3 cycles of Trodelvy showed progression in the liver and lungs, so I just switched to Halaven(aka eribulin). Prior to starting Trodelvy, I was on the DESTINY04 trial of Enhertu for HER2 low patients which worked for about a year. Enhertu and Trodelvy have different targets but deliver a similar chemo agent. So, I knew that there was a risk that it would nor work. A couple of hormone positive patients in my metastatic breast cancer group have a had significant and relatively long lasting responses to Trodelvy.
Wishing everyone the very best!
Theresa
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Theresa45,
So sorry to hear about the progression. I couldn’t tell from your profile whether you are still hormone positive or whether the cancer mutated to triple negative. (I’m very interested in Trodelvy because it may be something I will need in the future.
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Theresa45,
I'm saddened to hear that your three cycles didn't work. Wishing you the best with your new treatment plan.
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I am not on trodelvy anymore. It stopped working for me. I am trying a different chemo, carboplatin and gemzar. It doesn’t mean trodelvy doesn’t work, just not me, good luck and keep the faith! Sharo
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anornurse.
Sorry to hear that Trodelvy stopped working yet am happy that you have other options. There are so many effective drugs out there. How long were you on Trodelvy? Has your doc mentioned how long he / she wants you to stay on the new meds?
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10 months for trodelvy. It worked until the last couple of months. I think we will wait for the first chest cat scan in a couple of months before he makes a decision. Good luck to you! Your right, there are so many drugs of choice, we are so lucky! Life isstill good! Sharon
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I am new to this board. I'm on my fifth round of Trodelvy. It's dropped my tumor markers significantly. What's interesting is I too have noted hand trembling in both hands. I dismissed it to the tumor in my spine which received 10 rounds of radiation. Other than 1 week of diarrhea, I have had no other side-effects. Well, I guess I am wrong. The hand trembling appears to be a side-effect. Is there anything that can be done?
I have a PET/CT scan scheduled for mid-July. Thank you.
AmyQ
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AmyQ, Welcome to the group. I have trembling in my hands, torso, and thighs. My husband can feel it when he gives me a hug. I haven't found any solution to this but will be seeing a neurologist in about a week to see if there are possible treatments. Will try to remember to keep you posted. I feel as though I have short term memory loss from all of the medications. I also get once monthly intrathecal topotecan for my brain tumors and to prevent another round of leptomeningeal disease.
Anornurse, Thanks for your answers. God's speed as you move forward.
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Hello everyone, I'm new to this topic and the forum in general, I've learned so much. I just came back from MO office and he says Trodelvy now--there are numerous liver tumors on my last CT after being stable. Good to know about the fact its a long infusion and to be proactive with the GI issues. I was otherwise for 6 months on Tecentriq/Abraxane. No major side effects although he said some people do have quite a few with the immunotherapy! So reason for writing now, is he is recommending Trodelvy and I'm worried about these neurological side effects I'm reading about and to be prepared for nausea. I know everyone is different, but I also have had WBR and they are still monitoring a few spots to see if active or just immunotherapy effect. Sad to see the T/Abr. combo go, it was tolerable and was keeping bones and lungs very stable. He says Trodelvy is a breakthrough drug and would be next for TNBC. However, I'm seeing that its not all for TNBC and not necessarily super long lasting, I thought I was at the end of the line here, I did ask about the Cisplatin and he said he would prefer Trodelvy and that the platinum agents are very tough on people, but it is a choice if I want to go that route too. It almost sounds like he was selling me Trodelvy but how long of a run do you get on this, previously he thought one could be on Tecentriq for a very long time. He would like a liver biopsy, but I decided to defer for now, sounds a bit painful and potential for lung puncture, of which I have had 2 already (lung collapse) when draining fluid for the Pleural effusion last year. I'm one of those tricky subtypes, where some biopsies have said ER +, but others so low that I'm practically TNBC, hence I qualified for the Tecentriq with a 5% PDL1 , I did not do well on the CDK (Verzenio) or Xeloda--lasted less than 4 or 5 months on these with painful feet and lots of diarrhea. I guess there's a chance of finding HER 2 in having a biopsy although I doubt after so many tests, FISH included. What other options have you heard about? In Best birds guide, there's all kinds of radiation type options for the liver but he said blanket "no" to all of those.
I'm sorry to hear about the tremors, I would think the brain treatments would have something to do with that, but seems all these chemo drugs have some sort of nerve damage, particularly the Taxanes, which Abraxane is one of those and prone to neuropathy. Seeing a good neurologist probably a great idea. I recently found out there is also a type of doctor "NeuroOncologist" that deals with potential treatments for brain mets and related neurological issues, which I was surprised that he mentioned Avastin as an option now used in other cancer's with brain mets--it would be part of the infusion with the regular chemo. Thank you all again, prayers to all.
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I had a brain MRI today and had great news. The tumor (small) is completely gone and there's no new tumors. I had one round of radiation, Gamma-knife I think which worked. Trodelvy, I'm told crosses the blood brain barrier, which is too, great news.
Amy Q
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