Well, Carboplatin was a disaster - it did nothing at all so I have effectively had 8 weeks of no treatment and my cancer went crazy. I understand that sounds super negative but that's how I feel right now. So, having a scan to prove the cancer spread matches the blood work (for example my CA15 was in almost normal range and now its 3000) and my liver pain is liver mets exploding. Then, pending insurance approval, I will move to Trodelvy.
Can anyone share side effects or experience with me please?
I have previously been on: Ibrance/Letrozole (1 yr), Faslodex (2 months), Xeloda (1 year), Taxol (1yr), and Carbo ( 8 weeks). I am grateful that we have so many options and I honestly never "felt" the cancer until now, so it is scary .
Appreciate all of you. Allison
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I understand how you feel. Taxol did very little for me. Then I went one month without treatment while we waited for insurance to approve new drug Elacestrant.
I am concerned my tumor markers may be way up too even tho I have me on Elacestrant one month. I get blood tests today. I have not heard of Trodelvy.
I did immunotherapy for 4 months which did nothing 2 years ago I understand your concerns But I bet they have a drug that will stop this
I (and we all) can so relate to your worries about progression. (I was diagnosed last August and Ibrance didn’t do much for me plus it caused pneumonitis, so I understand how you feel about “wasted time” but there are other options!) Try not to think about the numbers and know that you have a new drug/weapon fighting for you. Sending prayers and hope for peace and that the new drug is effective.
A little while ago I listened to an update from Dana Farber on the latest drugs and if you start with slide 11, they explain how Trodelvy works. I think you might find it interesting.
Allison, I am so very sorry to read this. Sounds like you have been through a lot. I hope this new medication works for you for a long time. Sending hugs.
Golf is definitely a good distraction as well as great exercise. It increases serotonin and endorphins s which help our immune system to fight cancer and helps all of our organs, supports bone health, etc. Plus it is a good social activity. I have become addicted to golf and intend to play as much as I can until a time when it becomes too difficult. Every day I ask God for 1,000 more rounds. Let's hope we both get to do that!
All I can say is I understand your frustration. In 2021 when diagnosed MBC , my labs were at 1% PR+ which is as close to being negative as you can get. Cancer was in one site. I was put on Ibrance and Fulvestrant. When that did not work I was put on Picqray. Needless to say a year later cancer had spread to various locations. But I kept questioning why I was being treated as PR+? I have been on Capecitabine for 8 months now and stable. Ca 27-29 in normal range. Maybe if I had started on this medication, I would not have experienced progression. I try not to focus on the past. Those decisions are gone. I now focus on today and take a much more decisive role in my treatment plan.
Trodelvy for a few cycles. Side effects have been fairly managable. Of course, they give about an hour of pre-meds to start off. I did lose my hair after about two weeks. Everything else is OK. Watch out for mouthy sores and be proactive to treat them (mouith rinses).
I’ve been on trodelvy since November. I had been on Carbo for 4 months when cancer progressed to my liver( it had just been in my bones before then).I was put on Taxol for 8 weeks. It did absolutely nothing and cancer progressed to half my liver. I was feeling how you’re feeling now. I was put on Trodelvy, and have had really positive results. My cancer markers are just above normal and tumors have shrunk in my liver to just a few small spots. It was hit or miss getting the right dosage for me, and I felt like I slept the first three days after my infusion. I had extreme fatigue. My dosage is adjusted now and I am tired the day of infusion and don’t do much but sleep. The next day I’m fine. That has been my only side effect …besides losing my hair. Lol. But I’m here! I found great tattoo eyebrows that are easy to apply( Amazon) a pair last3 days , have learned to apply fake lashes, and had my wig professionally cut to my face. I’ve had more than one nurse read my chart and say. It says you have alopecia from treatment, but you don’t! Then I assure them, I’m wearing a wig. So if I can fool chemo nurses, I’m doing something right haha.It helps me feel better about myself, which in turn helps my attitude, and helps me stay positive. I believe your mindset plays a big role in your healing . We just gotta keep on keeping on! I hope Trodelvy works for you ( and keeps working for me) . Each day is a blessing ❤️
I love it - thanks so much for this information! I don't care about my hair as I haven't had any for a year and I've just retired so I don't have to wear my wig much. My hair actually started growing back during my last treatment so that should've been a clue it wasn't working - HAH!
Yes. I was actually at treatment when answering your post. The first couple of rounds without it , my wbc count was to low to receive treatment and I was sent home ( frustrating). I was put on neulasta, and no problems since. It’s in the form of a small device or on body injector you wear on the back of your arm or stomach and medicine is administered the next day, so no trip back to the hospital to get a neulasta shot. Mine was put on at 11 am this morning and I can take it off after 2 pm tomorrow.
sorry it did not work-I’m kinda on that now just 2nd cycle now -we will see.let me know how this med is . My tumor markers are 1600 now and rose past few months because I was on fulvesterant Only these awful infections hurt my hips -painful. I wish you the best with this med and treatment. Past few months I developed a spot on my liver. 🙏✝️
I hope trodelvy is your magic elixir to get you back to stable. This is such a stressful life we lead. We have lots of drugs out there, I hope all goes well with this one❤️
I am on Piqray. My next drug is Orserdu. It was approved in the US in January. Any idea what side effects accompanies this drug? Anyone on it. I will stay on Piqray until it stops working.
My MBC has two mutations. I had a blood test to determine this. How could one gal be so lucky?
I am just seeing this post now about Carbo. I was on Carbo for 7 months. I felt it wasn’t working 1/2 way thru because I had 0 symptoms. So I asked for an ultrasound 1/2 way thru. HAD TO PUSH FOR ONE. My doctors said it wasn’t necessary. I was right.:: cancer went from 1-3 lymph nodes and then tumor grew from 1.5cm-3cm.
What did they do?! They kept me on carbo another 4 months. I was so angry. At surgery they didn’t get clear margins (duh) so a resection was planned. Then they told me they removed 3 nodes. I fired that oncologist. He didn’t listen to me.
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Anyone with experience with Trodelvy side effects and cold capping to save hair? Also how long did you take Trodelvy?
Metastatic Newbie…Not Where I Want to Be🙂
