Sacituzumab Govitecan (Trodelvy)
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BevJen, she's tnbc acc to 2019 dx
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BevJen, I was doing fine on Halaven, everything was shrinking, side effects tolerable, except the lymph nodes under my arm were larger. I had a biopsy done and it came back TNBC. The genomic testing showed PD-L1 at 2% which was enough to go forward with tecentriq. My lymph nodes got even larger and it really screwed up my thyroid. My TSH was out of control and it has taken since March to get it within normal limits. I also had radiation to to the lymph and it helped some but was only for pain.
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Dear all,
I am living in Belgium and wonder if it is possible to get Sacituzumab Govitecan (Trodelvy). There were some clinical trials but they are closed now. If necessary I can go abroad to buy it (for my sister who has TNBC).
best regards
Reginald
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Hi, I am new to this forum. I started with Trodelvy just recently. I only had two treatments. The side effects have been minor compared to all the other drugs I have used before, except for one. It is giving me a rash that is really uncomfortable, all over my trunk. The first time, it was mild, but the second time was much worst. Has anyone experienced that and have you had success in controlling the rash? I do want to continue on Trodelvy because it sounds so promising.
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Hi everyone. I just discovered this Trodelvy thread and wanted to say hi and write a quick note, then I'm off to get some sleep. I started Trodelvy in early June. I was not in good shape when I started... high liver labs, bili, etc. I developed ascites that required once a week draining from June through September. My liver was not in good shape. I'm happy to share that I am feeling so much better now. After 2 cycles of Trodelvy my scans showed that it was working. My second scan on Trodelvy showed a remarkable response, particularly in my liver, compared to before I started.
Because my liver was in such poor shape when I started Trodelvy, I started on a 50% dose. I am still on a 50% dose and seeing the great response. My ascites began dramatically improving in September and my energy, appetite, etc. is so much better. I am so thankful and grateful that Trodelvy is working for me and for so many others.
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Congratulations, thrivingmama! You are doing great! We all love this drug! I have been on Trodelvy since 5/20. My first cat scan of the lungs was good! I can't wait for the second cat scan which is 2 doses away!
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Halfway through 4th cycle. Still having difficulty adjusting to the diarrhea. Trying a dose reduction after scan showed everything is shrinking. 🎉 This is the first thing to work since I was diagnosed triple negative about a year ago so my whole family is breathing a collective sigh of relief!
I hope everyone is doing well - this thread is a bit quiet so hopefully that’s a good thing!
Libby
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Libby, This is wonderful to hear! I’m so glad the trodelvy is working for you too! I hope the diarrhea gets better with the reduced dose! I have been lucky, my occasional diarrhea has been manageable with Imodium. My first scan also showed in shrinkage in the lung lesions. My second scan is in a few weeks and I think the news will be even better! Life is good and getting better for you and your family! Sharo
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As you can see, there aren't that many responses. This is likely due to the fact that not that many patients are taking this drug since it is so new--approved by the FDA in April of 2020. I have been on several chemos since my diagnosis four years ago and they all have their different side effects. For this one, it has been terrible diarrhea. Have your oncologist give you a prescription for anti-diarrhea meds. It can start up even more than a week beyond the infusion. OTC stuff does not work! Other than that, as I go along with the treatment, the fatigue has gotten worse. I think that's the case for most chemos I have been on. Side effects aside, I wouldn't change it because the med is working. When i found out I was metastatic to my brain, they found 40 or 50 lesions. My scan last month, after taking Trodelvy since June, shows significant reduction in the size of the lesions and reduction in the number of lesions. They could only count 15 this time. Know that I am also taking a low dose of a niraparib (PARP Inhibitor) so that might be helping the meds to cross the blood brain barrier. I also had 10 whole brain radiation sessions back in March and April before starting chemo again. Best of luck and would love to hear from all of you since there aren't that many patients on this drug to ask questions of--at least not at my oncologists office.
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The dose reduction and two look transfusions have my fatigue this last cycle. Diarrhea only during second week but doubling up on meds early on helped. Also BRAT diet but I sure get tired of rice and bread. I found I can eat oatmeal on this diet and it helps with the monotony. My skin has severely dried out and flakes off all over my legs and back. It doesn’t itch and hasn’t cracked, just flakes. I already have dry skin and use lotion daily but will be trying a new lotion and maybe applying at bedtime as well morning. Anyone else suffer from dry skin? I take daily steroids and it can cause the skin to thin out but it’s a small dose so I don’t know if it affects my skin. I hope these side effects level off and not continue to worsen. Anyone else see a leveling off of side effects?
Libby
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LibrarianPatty and all the new members here, welcome to Breastcancer.org! If you go to the Search function of our main site and type in "Trodelvy" or "Sacituzumab" (without the quotes) as your search term, you'll see every time the word is mentioned in an article, and can then check it out and learn more on this drug.
We've found this among other articles, hope it helps!: Trodelvy Improves Outcomes for Previously Treated Metastatic Triple-Negative Breast Cancer
Best wishes and looking forward to hearing more from you soon!
The mods
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A hearty hello to each of you and the Moderators. I joined after my 2017 diagnosis and initially participated however I've quiet after waffling between so many setbacks and trying to regroup during remissions.
In a nutshell, I was diagnosed in 2017 with TNBC and had my double mastectomy that year after 5 months of chemo. 2018 was full of radiation and complications (radiation pneumonitis) and multiple additional surgeries due to cellulitis. In January of 2019 a routine MRI of the brain revealed 7 lesions which had probably seeded earlier. They were all obliterated with gamma knife surgery. I was well until Oct of 2019 when I experienced significant saddle anesthesia and numbness and tingling down the back of my legs into my feet. I was diagnosed with leptomeningeal disease and the docs said I'd have three months to live without any treatment at all. So of course we started radiation which I had to my lumbar and thoracic spine. In Jan 2020 I had an Ommaya port placed in my brain and started with intrathecal Topotecan and systemic Tecentriq. I did well until August of 2020 when I had four new lesions in my brain.
I continue with the IT Topotecan every four weeks however my MO changed my systemic treatment to Trodelvy. It's been tough. I was started on the recommended dosing of day one and day eight of a 21 day cycle but after the first cycle I was hospitalized for severe neutropenia ( WBC was .4 and ANC was .2), as well as low grade fever (100.2) and a nasty hive like rash that went from the back of my knees all the way up my trunk to the back of my arms. It was itchy and painful. The upside is that it never came back with future doses. I have severe constipation the first week after treatment (fiber foods and miralax helps) followed by diarrhea the second week.
Because Trodelvy shows apparent promise for TNBC patients, my doc had my continue it but changed my dosing to every 14 days. That has worked out better though I still have side effects. I am tired, have a headache and weakness. My hands shake to the point where I could not feed myself soup without spilling. I have lost my hair and have dark blue nails. My skin is dry and seems darker in my knuckles and around my face and neck. It's all okay if this helps me to get back into remission. The first week after a dose is tough and I seem to bounce back with more energy the second week.
My next set of scans are on Dec 29 so we'll see if the drug has done its job. I'm optimistic that it will.
Wishing each of you success!
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DoubleBloom,
Thank you for sharing your story and letting us know how Trodelvy is working out for you. Crossing my fingers that your scan on December 29 turn out clean.
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@NorCalS, Thank you so much!
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Libby, Good luck to you. I believe so strongly in trodelvy, that I bought some stock in Gilead Science, who bought Immunomedics, who manufactures trodelvy. I don't have dry skin, but I did lose my hair. I am not a wig person, so I have quite a collection of hats. Bless you and keep us posted! Sharon
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Doublebloom, Nice name! Good luck on your scans! It sounds like you have been through alot! Keep looking forward! I really believe in trodelvy. My oncologist started me on it in the beginning of May, 2020. It's working! I can't wait for my next scan. I have metastatic tnbc in the brain, lungs, and spine. I had tnbc 9 years ago, chemo, surgery, then radiation. It came back last February. Life is good and trodelvy is even better! God bless you! Sharon
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Thank you anornurse. I sincerely appreciate your encouragement. It helps me to get through the tougher days and to remember that I will get my energy back.
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I'm also a son of TNBC mom.
Maybe,Trodelvy trails is being worked university hospitals in İstanbul(ÇAPA,Cerrahpaşa and etc)
Allah acil şifalar versin inşallah
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Dear Ahmet_23, I'm not sure if you are asking a question. If you are interested in Trodelvy, the company who manufactures it is called Immunomedics. The company was purchased by Gilead Science this last October. Immunomedics is an American company, it also has a European office. Look it up either company on the internet you will get more information. I hope this helps. The drug really works! Anornurse
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My scans at the end of December showed no evidence of disease and my oncologists have taken me off of all chemo! I'm already feeling more energetic.
For those of you have been on Trodelvy and then taken off, how long have you been able to stay in remission?
thanks!
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Congratulations, DoubleBloom! Way to go! You give all of us still on trodelvy so much hope! This is such a great drug! I will pray you stay in remission! Feel better every day! Sharon (anornurse).
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Thank you, Sharon! I'm excited but at the same time anxious as to what the future holds. The Trodelvy clinical studies say that the average remission is 7.7 months but up to 30 months. My fingers are crossed for all of us. I hope you get to come off soon.
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Has anyone experienced hair loss on this drug? If so How much hair did you lose?
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DoubleBloom, Remember, clinical trials are exactly that! Clinical trials. You are your own person and different from all the rest! Keep up the good work! We are all rooting for you! Sharon
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Dear SammySand, Yes, I have experienced hair loss. I started trodelvy in May, 2020 and am still on it, 2 weekly treatments then one week off. I started to lose my hair maybe a month or so later. I have no hair now but I have a great collection of hats and it takes me much less time to get ready with no hair to fuss over, lol! Sharon (anornurse)
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@SammySand, Like Sharon I lost all my hair within two weeks of starting Trodelvy. I also have a great collection of hats and beanies.
@Sharon, Thanks again! The clinical trial also mentioned that patients can go up to 30 months without a recurrence. I'm optimistic and doing everything that's in my control.
Wishing you both (and everyone else) all the best.
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UPDATE: my body seems to settling in a bit. Side effects are much more tolerable and manageable. Rash didn’t even show up this week. I appreciate the encouraging comments. looking forward to my CT in a month to see how things are going.
I had my second dose last Thursday, it's Monday, now. It's dose I had horrible constipation. I usually take Mirilax the night before treatment as the anti nausea drugs are constipating. I didn't have the diarrhea until later that 1st week. I did however have a lot of fatigue and a few rashly spots, treatable with hydrocortisone cream. after the second dose I had diarrhea for days. Ended up using 10 doses of Imodium but will ask the doc if there's a stronger one OTC. Eating has been a struggle.
This is my 8th different chemo plus I was on Tecentriq for quite awhile. Been doing this for 2.5 years. Frankly I was ready to quit this one until I read all the posts about this drug and it's effectiveness. I'm a fighter but this one's tough. I'll see if we can cut the dose or maybe my body is just getting used to it. I don't have brain metastasis so I can't answer that. Mines been in the bones.Best of luck to you and your wife
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Dear MamaLynn, Todelvy is a wonderful drug! I strongly believe in it! I have been receiving it since May 2020 and its working! My brain MRI is great and my chest cat scans are improving! If you read the previous threads you will see how successful it is. I will tell you what my oncologist prescribed for trodelvy side effects. I have been very lucky, all manageable. I am on the two weekly doses and one week off protocol. Diarrhea has been manageable with imodium. I have a prescription for lomotil if I need it. The rash just appeared a few weeks ago. I take a daily zyrtec and apply aquaphor ointment, both help and I feel it's getting better. I try to eat small frequent meals, even toddler food, which is soft and slides down very easily. There are lots of fruits and veggies available which might help the initial constipation. I hope this helps. We are all in this together, it's good to talk. It's so wonderful that they found a drug just for tnbc, just for us!!! Sharon (anornurse)
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Hello MamaLynn,
I'm glad you found this thread and decided to try Trodelvy. I was on it from Sept to Dec with success. I'm currently in remission and optimistic.
Like you said, the side effects are tougher than other drugs like Tecentriq. I also had constipation the first week and diarrhea the next. Like Sharon said, the home remedies and meds help. My rash was severe covering my body from my trunk to my knees but eventually improved.
I wish you great luck. Stay in touch.
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Hello, everyone! Just checking in!
Sharon, I’m glad to see you are continuing to do well and tolerating your side effects with a smile. You’re always so happy and encouraging - were you a cheerleader in high school?
DoubleBloom, amazing how quickly this worked for you! Congratulations! Wishing you continued NED for as long as possible!
SammySand, almost all my hair fell out and I shaved off the few wispy strands that remained. I wear hats now in the cold but in the heat I go bald at home and wear a cotton hat in public. Last time I lost my hair I used a wig since I was picking up grandkids after school. Kids have enough issues and didn’t need more by their friends asking what’s wrong with your grandma.
MamaLynn, I had a horrible time getting a handle on side effects because they weren’t consistent each week. I had a dose reduction after the third cycle and it helped the most with the diarrhea and anemia. I also had two blood transfusions before the dose reduction. Using lomotil double dose at the very beginning of diarrhea helped along with Imodium pills. Both are prescription.
My scan last week showed stable disease, nothing is shrinking but nothing is growing so it seems like the dose reduction is working enough to keep it in check for now. Fingers crossed it keeps at it! I can breathe for the next three months!
Libby
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