Trodelvy Update

[Iwasborntodothis]

I started my second cycle of Trodelvy ( 2 weeks on one week off) yesterday.

I am going to tell you that the first round was not easy because I guess this drug works so quickly to get rid of the cancer that removing all the toxins makes you very sick. I was sick and I lost five pounds. My platlets tanked but the neulasta helped.

BUT....all of my elevated liver numbers dropped back almost to normal and my CA-15 dropped by 50% after one cycle. So, I am encouraged to stick with it as I am told that it will get easier as the cancer moves out of my body. My liver "baby" (it was swollen and sore) is gone. My week off wasn't a breeze either but I was able to eat regular meals by Saturday and Sunday. Zofran is my new best friend.

So not a lot of science here just my opinion and for the record of anyone who is offered this choice of med for their next round of treatment.

Feel free to ask any questions.

Allison

[mariootsi]

Happy to hear you are doing well and experiencing good results. A shame so many terrible side effects. Take care and continued success

[Iwasborntodothis in reply to mariootsi]

Thank you!

[Aquadog]

Thanks for sharing your experience, Allison. It sounds like a rough go, but it's hard to argue with the results. I hope it gets easier AND continues to work so well. Sending hugs.

[Iwasborntodothis in reply to Aquadog]

Thank you! I just hope the info helps someone else moving forward

[Best521]

That is great news regarding your numbers. Good to hear. I find that if you can push through the less serious side effects for a new medication that is working, eventually the side effects ease, disappear or there are options to help make them tolerable. Best wishes for continued success with Trodelvy.

[Iwasborntodothis in reply to Best521]

Thank you!

[Best521 in reply to Iwasborntodothis]

Thanks for highlighting Trodelvy. According to a presentation posted by Dr. Sammons of Dana Farber approval to use Trodelvy in HR+ breast cancer is six months away. Her presentation is 4 months old. It is great to know more options on the way. She also covers everything new and in the pipeline, the results from the Elecestrant and Enhertu, trials and ADCs in development. She did a great job here. All Good stuff!

2023 Updates In Metastatic Breast Cancer Treatment:

youtu.be/Hn3oB0P6Kpo(Not working as expected?)

[Iwasborntodothis in reply to Best521]

I am not triple negative so I was surprised my insurance approved so easily. They are expanding its use and that is good news.

[Fiercefighter13]

I'm so glad to hear that you are doing well with your markers and your liver is doing better! That is very exciting and good news. I do have a question for you, does Trodelvy cause hair thinning or loss? Trodelvy is on my list, and may very well be the next line after Xeloda stops working (fingers crossed it lasts a long time). I'm curious because my doctor really didn't have an answer for me about hair. Wishing you well for a very long time on Trodelvy, and I am hoping that it lasts a very very long time and the side effects get easier and easier to deal with for you!

[Iwasborntodothis in reply to Fiercefighter13]

Thank you and sorry to say...Yes my hair fell out utterly and completely overnight one week after second dose. I only had a little regrowth after taxol but - wow...I woke up with it all over my pillow and the rest came out in the shower. My last hair loss was more gradual. My husband was thrilled because he says it shows the med is working.

[CincinnatiExperience]

Thanks for relating your experience. Mine is pretty well the opposite. Side effects have been pretty mild. I get constipated, but there are cures for that. I have some nausea, but the pills they give me keep me from actually getting sick. Don't know anything about results yet (I think that I am in my fourth or fifth cycle). I have a scan next week which should tell us something about results. And as to hair---it was gone by three weeks in, sorry.

Anne (in Cincinnati)

[Iwasborntodothis in reply to CincinnatiExperience]

Thanks - they tell me it will get easier. I feel like my "lost 8 weeks" on Carboplatin caused the bad reactions - I had more ground to make up. Things are much more settled today. I am grateful for this option for us and for the future ladies.

[Dancer1000 in reply to Iwasborntodothis]

I feel like I lost time on Carboplatin as well. Took it before starting Trodelvy and it did absolute nothing at all. The tumors continued to grow but now thankfully they are decreasing with Trodelvy.

[Iwasborntodothis in reply to Dancer1000]

Makes me wonder if they have to have us try carbo before insurance approves Trodelvy....but what a waste of time.

[Best521]

When I responded to your post a couple of weeks ago never did I think I would be starting Trodelvy myself so soon. I am ER+/HR- with progression in my liver. After a washout period I will be starting a trial which combines Trodelvy with Keytruda. Very excited to start this trial as Trodelvy was not originally available to ER+ breast cancer patients. Yes there will be side effects, yes I will loose my hair (but after 16 months on Ibrance the hair wasn’t looking so great anyway) but I am very excited to be trying one of the new ADCs combined with Immunotherapy.

[Iwasborntodothis in reply to Best521]

From another thread

I am getting used to Trodelvy and it is working very well...liver results all normal and CA15 dropped another 50% last cycle. Liver pain gone. Side effects for two weeks are rough but the week off is a dream and I eat myself back up to the lost weight (typically 4 or 5 lbs) and I can do fun things. The two weeks on I am nauseous and vary between constipation and loose stools. Can't accomplish anything and cant really get too far away from a restroom.

We are planning trips away from the awful Phoenix heat accordingly.

I think this will be one of the miracle drugs we have all been praying for so I want to document this for future "me". They say they can moderate side effects by increasing infusion time and can lower dose if necessary.

[Best521]

Thank you for sharing you experience with Trodelvy and your friend’s experience with Keytruda. This is all excellent news and I wish you continued success. You have put my mind at ease and helped to send me in this direction. I thought I would be on Xeloda next, but Xeloda can wait. It is too compelling not to try the ADC with an Immunotherapy drug first. I think you are right this could be a miracle drug. Plus the ability to travel and lead your normal life on the off week is a big bonus. Stay cool. Hope you have lots of fun on your trips.

[Iwasborntodothis]

Started fourth cycle of Trodelvy yesterday and it dropped my CA15 another 30% (it was over 6000 after Carboplatin and now its around 1300. Its not an easy 2 weeks but on the week off I feel so much better - I road my bike and played golf in the mountains. Also, after losing taste buds on previous meds (Taxol and Xeloda) I am loving salt and sugar tastes again! On my steroid high today so I am off to run some errands before I crash.

We even made some plans for a trip in December so feeling hopeful after a rough start to the year.

[Hopeful4Cure]

OMGoodness! I was so happy to hear the good news with your markers going down. I hope it continues to work for you for a long time. Did your doctor tell you anything about avoiding sugar, because it is like mircle grow on cancer? Sending good vibes

[Iwasborntodothis in reply to Hopeful4Cure]

Thank you - I had no interest in sugar for a long while because I lost my taste buds. I spent a few months this year indulging in a little pity party for the failed 8 weeks on carbo so I am back on the healthy diet with out sugar now.

[Hopeful4Cure in reply to Iwasborntodothis]

Good to hear and nothing wrong with a treat here and there. We all deserve it. My doc told me to just live my life. I do, but I cut out processed food and anything with added sugar that is not natural.

[Best521]

So glad to hear how well you are doing. It is giving me hope. Had my first round of Trodelvy and Keytruda last Monday and second round of only Trodelvy yesterday. So far dealing with the nausea, constipation and diarrhea which seems to abate by the 4th to 5th day. The hair is still holding on but I am ready with cute hats when it goes.

[Iwasborntodothis in reply to Best521]

Yep it will go sorry - it will be super itchy and then...boom...gone. There are cute hats with hair too that I have been eyeing just for fun. I am finding that the side effects of Trodelvy are lessening - the doc said it starts out bad because it is working so fast and dumping all of the bad stuff out (not the terms he used :)) also I am logging my side effects and I find it helpful for planning. Good luck sister and hang in there.

[Iwasborntodothis]

On to round 5 yesterday with more good results - CA15 down to 700 (40% drop) and liver numbers completey normal PLUS side effects are getting easier/more manageable. Trodelvy and (hopefully) Keytruda (for others as soon as it is approved) will truly be game changers for MBC and I am thrilled we have these opportunities. Saw two funny shirts yesterday: One had stick figures doing a fist bump and said "good job not dying" and the other said "my oncologist does my hair"

Have an awesome day! (I'm still riding my steroid high so I'm just trying not to bug anyone too much today)

Allison

[HbbM in reply to Iwasborntodothis]

Thank you so much for keeping us updated!!! Wish on.y the best for you!

[Hopeful4Cure]

Your post put a smile on my face. I am so happy to hear after the 5th cycle that your tm's are down. 40% is just fantastic! Plus, your blood test and liver marks are good and getting better. Thank goodness. I'll get the news end of week. Blessings and sending pos energy.