Posted on:
May 21, 2020 09:30AM
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Posted on:
May 21, 2020 09:30AM
Erich
wrote:
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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anornurse
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Sep 3, 2020 02:28PM
anornurse
wrote:
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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moth
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Sep 3, 2020 02:49PM
moth
wrote:
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 immunotherapy
I take weekends off Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds
Dx
12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2-
Surgery
12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
Chemotherapy
2/13/2018 AC + T (Taxol)
Radiation Therapy
8/13/2018 Whole breast: Breast
Dx
2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2-
Chemotherapy
3/18/2020 Taxol (paclitaxel)
Immunotherapy
3/18/2020 Tecentriq (atezolizumab)
Chemotherapy
11/25/2020 Abraxane (albumin-bound or nab-paclitaxel)
Radiation Therapy
12/8/2020 External
Hormonal Therapy
12/15/2020 Femara (letrozole)
Radiation Therapy
3/2/2021 External
Local Metastases
3/2/2021 Radiation therapy: Bone
Targeted Therapy
1/1/2022 Trodelvy (sacituzumab govitecan-hziy)
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Wanderingneedle
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Mar 2018
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221
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Dec 11, 2021
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Sep 6, 2020 01:15PM
Wanderingneedle
wrote:
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
Libby - Just trying to figure it all out and keep up with daily life.
Dx
11/9/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2-,
Targeted Therapy
1/22/2018 Ibrance (palbociclib)
Hormonal Therapy
1/22/2018 Femara (letrozole)
Chemotherapy
9/13/2018 Abraxane (albumin-bound or nab-paclitaxel)
Hormonal Therapy
2/11/2019 Faslodex (fulvestrant)
Chemotherapy
2/11/2019 Doxil (doxorubicin)
Chemotherapy
2/26/2019 Halaven (eribulin)
Dx
11/6/2019, IDC, Right, Stage IV, Grade 3, ER-/PR-, HER2-,
Chemotherapy
12/3/2019 Abraxane (albumin-bound or nab-paclitaxel)
Immunotherapy
12/4/2019 Tecentriq (atezolizumab)
Chemotherapy
3/16/2020 Ixempra (ixabepilone)
Chemotherapy
3/17/2020 Xeloda (capecitabine)
Chemotherapy
5/11/2020 Xeloda (capecitabine)
Targeted Therapy
8/31/2020 Trodelvy (sacituzumab govitecan-hziy)
Radiation Therapy
4/19/2021 External: Bone
Chemotherapy
8/19/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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anornurse
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Sep 6, 2020 02:24PM
anornurse
wrote:
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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Wanderingneedle
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Sep 8, 2020 07:05PM
Wanderingneedle
wrote:
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!
Libby - Just trying to figure it all out and keep up with daily life.
Dx
11/9/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2-,
Targeted Therapy
1/22/2018 Ibrance (palbociclib)
Hormonal Therapy
1/22/2018 Femara (letrozole)
Chemotherapy
9/13/2018 Abraxane (albumin-bound or nab-paclitaxel)
Hormonal Therapy
2/11/2019 Faslodex (fulvestrant)
Chemotherapy
2/11/2019 Doxil (doxorubicin)
Chemotherapy
2/26/2019 Halaven (eribulin)
Dx
11/6/2019, IDC, Right, Stage IV, Grade 3, ER-/PR-, HER2-,
Chemotherapy
12/3/2019 Abraxane (albumin-bound or nab-paclitaxel)
Immunotherapy
12/4/2019 Tecentriq (atezolizumab)
Chemotherapy
3/16/2020 Ixempra (ixabepilone)
Chemotherapy
3/17/2020 Xeloda (capecitabine)
Chemotherapy
5/11/2020 Xeloda (capecitabine)
Targeted Therapy
8/31/2020 Trodelvy (sacituzumab govitecan-hziy)
Radiation Therapy
4/19/2021 External: Bone
Chemotherapy
8/19/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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anornurse
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Jun 3, 2021
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Sep 9, 2020 08:54AM
anornurse
wrote:
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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texaslaughter
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Jun 7, 2021
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Sep 9, 2020 01:32PM
- edited
Sep 9, 2020 01:35PM
by
texaslaughter
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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moth
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Sep 9, 2020 02:31PM
moth
wrote:
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.... 😲
I take weekends off Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds
Dx
12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2-
Surgery
12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
Chemotherapy
2/13/2018 AC + T (Taxol)
Radiation Therapy
8/13/2018 Whole breast: Breast
Dx
2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2-
Chemotherapy
3/18/2020 Taxol (paclitaxel)
Immunotherapy
3/18/2020 Tecentriq (atezolizumab)
Chemotherapy
11/25/2020 Abraxane (albumin-bound or nab-paclitaxel)
Radiation Therapy
12/8/2020 External
Hormonal Therapy
12/15/2020 Femara (letrozole)
Radiation Therapy
3/2/2021 External
Local Metastases
3/2/2021 Radiation therapy: Bone
Targeted Therapy
1/1/2022 Trodelvy (sacituzumab govitecan-hziy)
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anornurse
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Jun 3, 2021
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Sep 9, 2020 04:35PM
anornurse
wrote:
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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texaslaughter
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Jun 7, 2021
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Sep 15, 2020 11:37AM
- edited
Sep 15, 2020 11:38AM
by
texaslaughter
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.