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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Oct 7, 2020 10:08AM
anornurse
wrote:
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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Wanderingneedle
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Oct 8, 2020 08:05PM
Wanderingneedle
wrote:
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!
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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moth
BC
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Dec 2017
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Jun 24, 2022
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Oct 8, 2020 09:32PM
moth
wrote:
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/...
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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Oct 9, 2020 09:58AM
anornurse
wrote:
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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anornurse
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Oct 9, 2020 10:10AM
anornurse
wrote:
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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Momerath
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Oct 12, 2020
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Oct 9, 2020 10:40AM
Momerath
wrote:
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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anornurse
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Oct 9, 2020 11:15AM
anornurse
wrote:
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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norcals
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Oct 10, 2020 02:43AM
norcals
wrote:
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
Dx
6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2-
Chemotherapy
6/23/2019 AC + T (Taxol)
Chemotherapy
4/5/2020 Xeloda (capecitabine)
Radiation Therapy
Whole breast: Breast, Lymph nodes, Chest wall
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Wanderingneedle
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221
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Dec 11, 2021
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Oct 10, 2020 07:52AM
Wanderingneedle
wrote:
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.
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)
B
bevjen
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Jun 22, 2022
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Oct 10, 2020 08:29AM
bevjen
wrote:
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.
Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Radiation Therapy for Bone Mets to Femur (Both sides) April 2021
Dx
11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2-
Dx
6/2006, ILC, Stage IV, metastasized to other, ER+, HER2-
Dx
5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2-
Surgery
7/4/2019
Targeted Therapy
7/31/2019 Ibrance (palbociclib)
Immunotherapy
Radiation Therapy
Surgery
Lymph node removal; Lymph node removal (Left): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap
Chemotherapy
TAC
Hormonal Therapy
Faslodex (fulvestrant)
Hormonal Therapy
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Surgery
Lymph node removal; Mastectomy; Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap
Hormonal Therapy
Femara (letrozole)