Sacituzumab Govitecan (Trodelvy)
Hello everyone. I was wondering if anyone(s) could share any experiences they have had using sacituzumab govitecan (Trodelvy) either in a clinical trial or as recently approved by the FDA.
We are trying to determine if it's the best plan of action for my wife at this time. There are 2 key things we are trying to determine.
1) How bad are the side effects (I've read everything from "terrible" to "manageable")?
2) Has it helped with your brain metastases or other CNS metastases? This is a tough question, I know. There is next to zero clinical data on it so far. Just trying to get any anecdotal evidence I can at this point.
Thank you all for any information on this! 
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My name is Sharon. I was diagnosed with triple negative breast cancer in my left breast, negative nodes in 2011. In 2019, I was diagnosed with metastatic triple negative breast cancer in my brain, lungs, and thoracic spine. I have been on Trodelvy since May 2020. I have had 11 doses. After the 8th dose, I had a cat scan of my lungs. Both lesions shrunk considerably for the first time. My white count has been normal to low normal and diarrhea has been occasional and treated with immodium with relief. The lesions in my brain were treated with the cyber knife with good results. Any questions? Feel free to ask. I live in New Jersey.
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Hi Sharon, welcome to the board. Thanks for sharing your trodelvy experience! I hope it keeps working for you.
I also hope it gets approved in Canada so if need be I can try a different immunotherapy0 -
Hello, I started Trodelvy last week. Right now fatigue is my biggest complaint. I’ve had a few gastric issues but more nausea than anything. And food doesn’t sound good! Since turning TNBC nothing has worked, but I have a new doctor and she’s terrific
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9 years ago I had tnbc in my left breast, treated with chemo, left lumpectomy with 2 sentinel lymph nodes and radiation. I now have metastatic tnbc located in my brain, lungs, and thoracic spine. There was a lesion in my right breast that was treated with pin point radiation and no longer shows on the cat scan. I have been on trodelvy since the beginning of May. I have received 11 treatments. After the 8th treatment, I received a cat scan which showed significant changes in both lung lesions, so the trodelvy is working! For nausea, I take zofran which helps. I love my doctor too!. He has cared for me for over 9 years. This is my third treatment and it is working! The fatigue comes and goes. When I am in my off week, (2 weeks on, one week off) I feel pretty energetic. Fell free to talk anytime you like! This drug is so new, I haven't found a lot of people on it yet. It's very nice to hear from you! Sharon
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Hi, Sharon,
I had my second dose today. My red blood cells are low, measuring at 2.76 (3.9-5.2 normal range) before chemo. Do yours tank, and if they do what do you and/or your doctor do about it? Iron pills 🥴? Diet changes? Other supplements? I’d like to find things that I can do without causing more issues before I see my doctor again in two weeks. Good to hear you are tolerating it so well. I hope I stabilize and do the same as I feel a response after one dose. Amazing!
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Congratulations on your second dose! It's nice to talk to someone on the same medication. My red blood cells have been normal. We watch my white cells which have been normal to low normal. Ask your doctor if there is another reason for your low count and let me know. It is amazing how you feel the effects immediately. I think that's one of the reasons they did an accelerated approval. I don't do any special diet except for protein shakes, which I buy. I eat what tastes good to me. I hope you will tolerate the medication even better than me! Sharon
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Hello! I came on to start a thread because I didnt think one existed, glad this one exists. I too am TNBC metastatic to the bones and liver. I was originally diagnosed in 2015, had a complete pathologic response then almost 5 years later it came back to my bones and liver in Nov 2019. My first treatment worked for 5 months then I quickly blew through Xeloda and Abraxane - like within the first round. My Onc quickly moved me so I started Trodelvy August 7th after becoming critical as my liver got bad seemingly overnight. My tumors seemed to be doubling and I was in crisis mode. My Onc didn't think I would make it through the weekend, and this was it for me. My one last shot. SO I have had 4 treatments in 10 months with 2 failing. The first infusion of Trodelvy stabilized me. My liver enzymes were of course off the charts, and 5 days later from 1st infusion I responded (they didn't think I would make it through the treatments because my counts were horrible as well). My liver numbers increased less than they had been and luckily I was still here. I had the second infusion 10 days later versus on the 8th to allow for blood, platelet, and WBC transfusions/injections to increase enough for 2nd. We were in crisis mode and my Dr took chances I asked of her because really what was there to lose? I took the second infusion and I had no increase in liver enzymes. My onc looked at me in the room shocked because they had been steadily increasing. I had my third infusion, and had a slight decrease in enzymes. At that point I was 1.5 cycles in - I hadnt been able to finish a full cycle in months!. Yesterday I went in for the 4th infusion to complete the 2nd cycle and my enzymes were down 37-40%. This drug is amazing. Has literally saved my life. I still have a long road to go because of the damage from almost going to liver failure but each day I am getting better and better. I can't wait until I have a few more cycles of these. Because of how quickly and well I have responded we are doing a scan next week. This is the first time I don't dread the scan. But they say with this drug if it works, it really works. I dont know for how long but its at least given me more time and hope. I know based on the study that a number had partial responses, and if I read it right thats 50% reduction in tumors, ~3% had complete responses, elimination of tumors all together, with some even still going strong 30+ months It gives me hope I didnt have. As the first targeted treatment for us MTNBC, I am so hopeful. I wanted to share this because this is already a horrid disease and there isn't a lot of information about this new drug. It does pave the way for more options.
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wow texaslaughter, thank you for sharing your inspiring story! Fingers crossed for your scan next week. It really sounds like it's doing amazing work for you.
I'm in Canada & just keeping my fingers crossed that they approve it (& fund it!) here quickly
right now they've approved atezolizumab for mbc but the province won't fund it so getting any immunotherapy here is a bit of a struggle. Trodelvy is 16,000 USD for a 21 day cycle btw.... 😲
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Omg! What you have been through and back again to the living! Don't give up hope! You have a purpose to keep us informed of your progress. I look forward to hearing from you really soon! Sharon
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Off to my scan. First time I don't have anxiety! I've come a long way in a short time and I just pray this continues to work as well as it has.
Moth - it’s pretty expensive here as well, I’m so blessed to have insurance that didn’t give me any issue with covering it.
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Texaslaghter, Good luck with your scan, please keep us posted! I also have insurance and it is covered! Sharon
Moth, May you soon be covered! Sharon
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I follow Trodelvy closely and not only was there a big sale of it’s company that created it recently but below is an article on the recent phase 3 results. I thought I’d share.
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Shay, I follow trodelvy, but you are really good! They were bought by Gilead, so I told my husband to follow Immunomedics and Gilead. I also copied the article. I'm going to give it to my oncologist this week when I get my treatment, which will be #13. This is such a wonder drug, how lucky are we! Thank you so much for letting me know! Keep the faith! Sharon
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Hi everyone,
My mother has TNBC with mets to liver. We don't live in US. I was wondering if anyone was able to obtain trodelvy outside of US ?
Thank you
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I’m sorry to hear about your Mom and that she is a part of this group none of us want to be. I’m not sure where it is available because of its limited approval but do know that not many countries cover it yet since it just finished its clinical trial. The best action is to talk to your oncologist to see if it’s available where you are. Your mom must have also failed 2 prior treatments to be eligible for it but they are looking at it as a first line treatment in the future. Wishing you and your mom all the best.Sharon - I’m pretty obsessed with this treatment since it’s the only thing that saved my life. I did have a parp (lynparza) work for about 5 months but after failing 2 back to back quickly I was desperate. With the new data out on this drug and my current response I am so very hopeful about future treatments.
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Talk to Moth, she is from Canada and is knowledgable about trodelvy. Also you may want to contact the company who manufactures trodelvy. It's called Immunomedics. They will be bought out by Gilead. Both are American companies. Good luck to you and your Mom
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Shay, I too believe trodelvy is a major break through for tnbc. You are doing so well, you are a miracle and a great hope for other women with the same diagnosis. You wrote that the cancer is in your liver and bones. May I ask which bones? I would think the trodelvy would work in the liver more quickly because it's soft tissue. Bone is harder and may take a little longer. On a lighter note ,one of the good things about no hair, I get to wear the cutest earrings (my ears are pierced) and they are very noticeable! Sharon
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Hello all - just started cycle 3 today and decided to post my progress. The steroids have me up late tonight! One of my liver enzymes - ALT - is normal at 35 from 287. My bilirubin went from 7.2 at start of treatment to 2.1 (my eyes were so yellow! They aren’t now) and my AST went from 267 to 90. I’ve only been on the drug for 45 days and it not only stabilized me but brought me from liver failure. I rapidly had developed ascites and had to get it drained in August which contributed to digestive issues and I lost over 20 pounds. The ascites is practically nonexistent, I had 4 liters drained in august after an almost 2 month build up - did another Drain this week to get ahead of it and was minimal. I was jaundiced, swollen and unable to walk when I started Trodelvy. I now can walk short distances and have started to put on weight; the swelling is gone as well. We expect the other enzymes to follow suit, and from my scan last week my tumors shrunk to where they were in my July scan. I have had a ct scan monthly. This all within 45 days and 2 cycles. As someone who was hopeless and told this was my only shot because of how aggressive it had become, I want this to give hope to anyone out there. I’m still pushing but even when it feels like there is nothing left, things can change just as quickly. It’s been hard, but if you are a believer - continue to be so.
Shay/texaslaughter
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handeadiguzel, I agree with writing to the manufacturer directly and inquiring about the closest location for a trial. I know the drug now has a waiver in Europe so it can be used for breast cancer treatment but I don't know how easy it is to obtain it or how much it costs there
Immunomedics GmbH
Tel. +1 8622603582
E-mail: dwhiteley@immunomedics.com0 -
Shay/texaslaughter - SOOOOOOO happy for you!!! you go, girl!
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Hello Everyone! Wandering needle I hope your counts are up and that you feel better! Texaslaughter, keep up the good work! Moth, thank you for keeping us so well informed about Canada! I went for my brain MRI this past Monday. The good news is, there are no new lesions! I was cyber knifed in April 2019 and then in July 2020 for one small lesion. I have been on trodelvy since May 2020, the new miracle drug! My next chest cat scan will be in November, after I get my 16th treatment. The cat scan was good, after 8 treatments, considerable shrinkage of the lesions, both lungs. I will keep you all posted! God Bless! Sharon
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I’m due to start my third cycle on Tuesday. I haven’t had the problem with steroids keeping me awake for some reason. I take a 2-3 hour in the afternoon after treatment and still sleep all night. I do take morphine at night so maybe that helps. I take a low dose of prednisone daily for an autoimmune issue I got from tecentriq but don’t need them for two days after treatment. This last cycle was better than the first as far as the diarrhea/constipation issues but the fatigue is still hard. Does anyone notice that they “settle in” to side effects and they become easier and more predictable?
Sharon, great news on the MRI! For whatever reason, brain mets sounds really scary to me even though I know there are good treatments for them. 🤷🏻♀️ I don’t know when my next scan is since I haven’t been on this treatment or with my doctor for long.
Shay, I was wondering about how many treatments there will be after this stops working. After mutating to TNBC I had two lines of treatment that failed and made me feel like nothing would work. My oncologist did not recommend this treatment and I went for a second opinion and she recommended it and she is now my doctor. She specializes in TNBC so I’m glad I found her. She has a great team which makes it even better.
Everyone have a great weekend!
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wanderingneedle, I lurk here as I'm still hoping for Trodelvy to be avail to me if Tecentriq fails.
I put up a list of TNBC treatments a while ago on the Stage IV TNBC thread. Have you tried Keytruda (pembrolizumab) yet?
Are you mets candidates for radiation or other localized treatment?
Also have you had new mets retested? Any genomic testing or the liquid biopsies? any chance of a brca somatic mutation? I read that PARP inhibitors are starting to be used with some good effect even in non brca+ cases so maybe that's something to talk about for future. Other than that it's IV chemo for as long as they work & you tolerate it...Have been reading a bit about metronomic chemo where they do a smaller dose but for more cycles (& sometimes more frequently). Used to be a palliative only thing but now some are using it for life prolonging stage IV treatment so I'm keeping this in mind as well. Chemo can work very well on the tumors but it's so hard on the body so finding ways of being able to stay on it longer is important.
I can't figure out how to link directly to the post but it's on page 93, 4th post down, dated Aug 8 https://community.breastcancer.org/forum/8/topics/...
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Wanderingneedle, Steroids make me sleep well too! The side effects are manageable. I think you will start to see a pattern and then prepare for it. I think it does become easier, just because you know what to expect. I have been taking a daily probiotic sine I started the trodelvy. When I was on tecentriq from 4/19 to 11/19, I was hospitalized twice during the summer with side effects from what they thought was tecentriq related, but no one was really sure. The cons outweighed the pros, so they switched me to ixempra and xeloda til trodelvy was approved in April. I have been on it for about 5 months. The week off is the best I feel. I find that if I stay as active as possible even if I don't feel that well, I start to feel better. Patch Adams said, "help other people and you forget about your problems." He is right. I am a nurse by profession and it's my nature to help others, which helps me to forget about myself. This whole tnbc business is very scary! It' so wonderful that they have come out with a drug that works! The Ascent clinical trials are very impressive! You can see them online. I'm glad you went for a second opinion and that you really like this doctor and her team! I hope this drug never stops working especially for Shay and her liver! We all have to believe and never stop hoping! Sharon
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Moth, I have never tried keytruda. I developed a lesion in my right breast, about the size of a 50 cent piece, about six months ago. I received 24 sessions of pin point radiation and the lesion disappeared, the cat scan is not able to pick anything up! I have not been retested for the brca gene. I was negative 9 years ago. No PARP either. My oncologist said it's for brca positive patients, but it is definitely something to consider. I have had my new cancer retested and it is definitely tnbc just like 9 years ago. You are a fountain of knowledge, Moth! I have not heard of what you are talking about, but am definitely going to ask. Thanks for the info and the post! God bless! Sharon
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it's so great to read about all your experiences, especially Shay's!
I have had 3 treatments with pretty minimal side effects, except that my hair is falling out. Maybe it is because of my age (75), or maybe I am just in the unlucky 38%. Otherwise some diarrhea and fatigue, but very manageable.
I was really happy to receive this treatment because I thought I did not qualify. This is my first treatment for breast cancer metatasticized to thoracic spine and lungs. My doctor said my lungs sound much better which is worth whatever I have to put up with. She will have a preliminary cat scan at the end of the month just before my 3rd cycle, so we can get some idea of what is happening.
Please keep posting your findings so we can get a clearer picture of the efficacy and toxicity of this new drug! Let's hope it really is a lifesaver! TNBC is a rather depressing diagnosis. As an aside, Trodelvy has already been lucky for me. After I read about it, I bought the stock which increased nicely and then doubled when Gilead bought it for a nice windfall!
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Dear Momerath, So far I have not been able to find anyone on trodelvy as long as me! It's very good to hear from you. Congratulations on your stock increase! I lost all my hair and I mean all, lol! I get to wear pretty earrings and everyone notices them! I am 67 and have lung, spine, and brain metastasis. I believe this drug is going to do great things! Sharon
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I asked MO about trodelvy and in her limited experience, she felt that it had more side effects than keytruda or tecentriq. I had heard from my oncology nurses that keytruda and tecentriq can cause very serious side effects, so I would like to know from those that have had trodelvy and keytruda or tecentriq whether the side effects are less or worse
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NorCalS, Tecentriq did not work for me. It destroyed my thyroid and gave me an autoimmune response in my knees (Similar to rheumatoid arthritis) that I’m now on daily steroids for. Side effects for some people are not as bad as others so it’s an individual thing. There is a Facebook group for trodelvy that have members who have been on the clinical trial and still going. Lots of voices to get more info regarding side effects.
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WanderingNeedle,
Since you just posted about this, what was it that prompted your docs to put you on tecentriq? I see that you are hormone positive and HER2 negative. Did you have a specific mutation or mutations that caused your MO to think of this?
I ask because I am looking at immunotherapy clinical trials. Tecentriq showed up on my Foundation One report as a possible treatment for me.
Thanks much.
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