TRODELVY CHEMO TREATMENT: I have been... - SHARE Metastatic ...

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TRODELVY CHEMO TREATMENT

Klamato profile image
18 Replies

I have been on several pill treatment for my 4th stage breast cancer along with the injections of xgeva and Faladex(spelling) for 8 years and have survived with little or no advancement but on my PET scan in September showed a couple of new lesions in my liver and lymph nodes, so they started me on Doxil chemo infusions after which the RECENT PET showed progression, so I failed that after 3 treatments. I recently received and started on Trodelvy (aka: sacituzumab govitecan)! Wondering if anyone out there has received this treatment and if so, have you had success with it! I only had my second treat yesterday and feel fine but have to have Nulasta to bring up my white blood cells bc they got too low! Please let me know your experience with this chemo drug! Thanks. Kathy ( from Syracuse, NY)

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Klamato
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Saltandlight profile image
Saltandlight

Hi Kathy-I was put on Trodelvy after Xgeva but was only on for two cycles as I had extreme AEs and wound up in the hospital. I had joined the Facebook group for it prior and saw many people tolerating it with little to no issues so you might want to check that out if you’re on FB. Prayers that this may be a long term solution for you 🙏🏻!

Klamato profile image
Klamato in reply toSaltandlight

Thanks for your response! What is AE? I have had two treatments so far and the most I get is a restrictive throat and a dull headache! I have however lost most of my hair, so I guess that’s something I deal with! I do have a few good wigs, so that does help! I just wonder what you went on after coming off Trodelvy? I don’t know how many lines of treatment I have left! Sure hope I can keep going forward with these treatments! God has been good to me so far!

Saltandlight profile image
Saltandlight in reply toKlamato

AE is adverse effect. That’s not too bad after two treatments if those are the only side effects you’re experiencing! I lost all my hair after the second treatment which was the first time I had gone through that but got a couple of good wigs too which helped. I fired my oncologist as she told me there wasn’t anything else really to do and went to City of Hope where my new oncologist has me on Afinitor and Aromasin which have resulted in good PET scans. I’m due for another here in March and am hoping I can stay on this regiment. As she put it “we’re going to treat this like a chronic illness” so I would say don’t concentrate on the number of lines but keep faith in knowing that God has been good to you and there are treatment options coming out all the time. We just have to trust in His plan and timing. It is hard sometimes but know you are being prayed for and you are loved! 🥰

Klamato profile image
Klamato in reply toSaltandlight

Thank you so much for your message and insight! I really can’t complain about side effect with all the various treatments I’ve had! I have been treated for more than 8 years with 4th stage breast cancer! Mets in liver and bones, I’ve had two broken femur bones due to the meds and a stay in the Intensive Care unit at the hospital for extreme oxygen loss! So I guess if I say I haven’t had many side effects, I guess I have! Presently I’m on Tredovley (sp) and had two treatments so far! I’m hoping that I can keep going and that this treatment will kick cancer in the ass! The thing is that I’m 82 and just wonder if because of my age, these treatment won’t keep working and I’ll be lost! Is anyone out there in my age category bc I wonder how they have progressed! God knows I just want to keep living! I’m an active young 82 and no one believe how very social I am. I do believe the Good Lord has blessed me with my strength and attitude! I am VERY grateful for my devoted 4 kids and their mates and my loyal friends—it truly has made the difference! I believe that a positive attitude and living each day with grace does make ALL the difference! I can only hope and pray that these treatments keep me going bc I’m not ready to quit! Good look and God bless you on your journey! Blessings. Kathy from Syracuse, NY

Saltandlight profile image
Saltandlight in reply toKlamato

Right with you! Never give up and keep trusting in the Lord as He’s not done with you yet from what it sounds like. I have you on my prayer list and will continue to pray for you daily 🙏🏻🥰!

Praising profile image
Praising in reply toKlamato

Where were the breaks? Did they show up on scan before it happened? I have uptake in femor and iliac.

YogaGRL52 profile image
YogaGRL52

any doctor that ceases giving us hope MUST BE fired! I’m so happy you’ve found treatment and a positive place at City of Hope. Our bodies have an amazing ability to heal…. God shines upon us, draws us near, calms our fears and breathes His Spirit into us with each breath we take!

Klamato profile image
Klamato in reply toYogaGRL52

Hope is what keeps us all going and if a doctor washes his hands in us, then seek another opinion! There are many wonderful oncologists out there and if you have to travel, so be it! Life is VERY precious and you/us need to live it to the fullest! God bless us one and all! Kathy from Syracuse, NY!

Rbeth profile image
Rbeth

I am on Trodelvy. The first infusion was 70percent of the dose because I am very sensitive to the drugs. I had a very difficult time with the chemo. Uncontrollable diarrhea.

We gave me a break till the diarrhea went away. We went with 50percent and it worked fine. My cancer numbers went down 160 points. Yes!! I get chemo two weeks then a week off. I am on my week off and start chemo again next week. I hope that my chemo brings my number down again.

At 50percent I get some diarrhea and very tired. We’ll see how these two weeks go.

Reenie from Rochester, NY

Klamato profile image
Klamato in reply toRbeth

I have had two treatments so far with that drug, and basically I am tired and a little light headed, but no other symptoms are happening! I can only hope that it’s working! Thanks for your input and good luck with this journey!

Praising profile image
Praising

so blessed to hear 8 yrs on xgevia and faslodex. I’m on that but also Ibrance. I thot it was a combo with falsodex? God has been with you. I had very bad leg pain after an injection. Scan was stable so no cancer. I just restarted faslodex. I’m having some low grade pain day 3. I was wondering what would be next…. Did you have low neutrophils on if on Ibrance. God has us in His hands. Trusting him to guide us all. Hugs gennene va

Rbeth profile image
Rbeth

Hi Syracuse,

I am on Trodelvy at 50% strength. I started at 70% strength and had lots of bad side effects. At the 50% I don’t experience any side effects.

I get blood infusions and Nulasta. I get dizzy too. I went to my neurologist and he told me to get up very slowly and hold on to steady myself. At first I was falling and getting hurt. Now I have more control.

I hope this helps. My cancer numbers went down the last two treatments. I have treatments for two weeks then a week off.

I hope this helps. Reenie from Rochester NY.

Klamato profile image
Klamato in reply toRbeth

Thank you for your reply. It’s interesting that you also had balance problems too. I saw my oncologist today and he said that 10% of those receiving this treatment get dizziness. That is one in ten people, so I guess that’s where this is coming from! He wants me to have an MRI of the brain and I don’t think that is necessary! I do think this is a side effect of Trodelvy.

Klamato profile image
Klamato in reply toRbeth

how long does the dizziness last? Do you get it with every treatment?

Klamato profile image
Klamato in reply toRbeth

Mine isn’t really dizziness, but rather a balance issue when I get up and walk! Not sure if it’s an inner ear or from this Trodelvy! Wait and what the brain scan says! Praying it’s not that! Thanks for your feedback. Kathy

Rbeth profile image
Rbeth

I get lightheaded and my neurologist said to sit down until it passes. Do not hold on to a wall just sit down. One day I sat down in a parking lot until I felt better. I learned to know when it passes. My cancer numbers are going down so I like the medication.

I also lost my eye lashes and eyebrows any suggestions?

Thanks for your response

Reenie in Rochester NY

Klamato profile image
Klamato

I’m having a terrible time with my balance since starting Trodelvy! Not sure if it’s a vision disturbance or ear fluid! Has anyone had this experience with this chemo drug?

Tanyateresa profile image
Tanyateresa in reply toKlamato

Ive been on Trodelvy for about a year now. Havent noticed balance issues but yes to vision disturbance - just more out of focus. Think a brain scan would be a good idea. My lesions are stable though and the tumour markers beginning to go down after a year of going streadily up

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