Topic: Sacituzumab Govitecan (Trodelvy)

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.

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

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!

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.

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

Sep 15, 2020 11:46AM anornurse wrote:

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

Sep 20, 2020 10:21AM anornurse wrote:

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

Sep 21, 2020 05:36PM texaslaughter wrote:

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.

Sep 21, 2020 06:32PM anornurse wrote:

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

Sep 28, 2020 01:37PM moth wrote:

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.com

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

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/...

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

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

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.