wrong. I am on Trodelvy. The first 2 months were very rough. I had nausea and fatigue. All the nausea meds made me sicker. I think my body adjusted and between Ativan and scopolimine patch it definitely got better. Unfortunately I have started to get nausea when I think about going to Chemo, when I go in to get it, the smells of the room everything. Even writing this post makes me 🤢. When I have my 13 day break it gets better. I was wondering if anyone else has this and if you had any suggestions on beating it back? I don’t think meds are the answer. I have been stable on this med so far. (5 months). I of course want to keep using this as long as it works. I really need a break from the nausea. Thanks for your help.
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Ticket123
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Hey there - I am on my 9th round of Trodelvy. I use ginger chews or peppermint gum as first defense against nausea because the prescription meds give me constipation. I would give those a try. It seems odd but eating little tiny snacks seems to help as well - I think an empty stomach might make it worse. Hope this helps because this med is really working for me and I hope to stay on it.
One last thing - ask them to have your dose over 90 minutes at least. When they cut mine to an hour the side effects were worse.
Thanks so much for responding! The ginger chews help me a bit too. The problem with food is that it all tastes terrible for a few days. Cold water is the only thing I can tolerate. Eventually it all clears up but the first 3 days are rough. I’m going to try hypnotherapy and maybe acupuncture. The meds constipate me also. I try to walk and drink water. After 3 days I try and eat lots of fruit and veggies. Fingers crossed the med is working!!
Just started round ten yesterday and all good labs. CA15 down to 110 and the other marker number is normal. Liver numbers all normal too. So much hope. Doc is attending the San Antonio conference that is coming up and he is excited for the new drugs and protocals they will be reporting about. He is a data nerd so I am so grateful for him. We still have several options after this med and that is something we couldn't say when I was diagnosed in 2019.
Yes the smell and taste of the nausea premedication that they infuse prior to giving Trodelvy made me nauseous. I would smell it several days later. Thinking about it before infusion made me nauseous. The nurse told me other patients have told the nurses the same. The last two cycles they gave me a lifesaver mint so the taste doesn’t overwhelm my mouth while they are infusing the nausea medication. I also hold my nose while they are giving it and continue to hold for five minutes after. It has worked! No taste, no smell, no problem. Agree so far this drug is working very well for me and I don’t want to give it up despite side effects which are manageable. My first scans all showed decreases in tumors. My next scan is in a couple of weeks and can’t wait to see if Trodelvy is working it’s wonders🤞. I started my sixth cycle this week.
Also I extended my infusion time to three hours which helped a great deal with side effects and at my next infusion I will drop back to two hours. Heard the hour infusions can be rough with side effects.
Oh I'm so sorry that you are experiencing this. This unfortunately is more common than you would think as about 1/3 of patients develop it and it is more common in patients with metastatic disease. It actually has an acronym in the medical community and is referred to an ANV. The usual class of drugs used to help this is the Benzodiazepines . Typically the drug of choice is Lorazepam(Ativan) which I see you have already taken. Another drug that has been shown to be very affective is Alprazolam (Xanax). Have you tried that? If not it might be worth a try. As typically chemotherapy for us MBC patients is long term it is best to try and develop strategies that help as it is a learned behavior and will continue usually unless you can find a strategy that gets ahead of it.
Some people find that relaxation techniques such as visualization help and/or a guided meditation for preventing nausea helpful. Others have found hypnotherapy and acupuncture helpful. Your cancer center probably has resources that can help. Good luck.
I finished 2 cycles of Trodelvy, and it's been tough. I bring mints with me to disguise the bad taste of that anti-nausea med. Ginger chews and ginger tea help me with nausea when the premeds wear off. I try to drink a bottle of water during the infusion, and ask for miso soup if they have it. Any extra hydration helps me with side effects. Also exercise, but the post-infusion cloud of fatigue is so hard to break through. I have to remind myself that I'm basically Superwoman because of all the steroids they give me.
Hi lovely yea I get it mine started when I first went for iv chemo last November through till march all the anti sickness meds made me worse then I had a 2 month break and started blockers which didn’t work so I’m now on oral chemo capecitabine I have 10 tablets a day I’m currently in my 2nd cycle and if it works been told il be on this till it stops working a very long time I have awful anticipation sickness they said they could give me anxiety medication but I don’t think this is a good idea so instead I’m trying to manage I’m same as you smells antibacterial wipes masks gloves toy name it even just thinking about it makes me feel so sick the only way I mange it is to smell things I like like lavender and eat with my medication suck a sweet ect it’s horrid and I know exactly how you feel if you have any suggestions please let me know if anything that works for you as it is really miserable
I’m sorry you are experiencing this, I too get the same feeling when I think of having to get chemo. I’ve had a nice break with being able to take pill forms of chemo but will have to start back with IV at the end of the month, I already feel nauseous. I’m going to try some of the suggestions people have left for you. I will say that I take 1/2 a Xanax pill when the anxiety gets to be too much, it works much better for me than Ativan. I have been listening to the Monday Meditations on the podcast Our MBC Life (on Spotify or directly from the website), those have been helpful so I’m hoping they will help me through chemo. Smelling lavender has always calmed me down as well.
I did five months of infusion chemo and I found that eating like a hobbit helped. Like combatting sea sickness, try to always have a little something in your stomach. Eat several very small meals throughout the day avoiding fatty things and foods that trigger nausea or stay in your stomach a long time. Even a couple crackers or handful of nuts worked. I also found the Doterra brand digestive candies with ginger in them to help keep nausea from spiking especially in the chemo room. Try a handkerchief doused with essential oils to sniff in for combating smells in the chemo room, peppermint was the most helpful for me. Since I had my chemo in the thick of COVID lockdown I just added a few drops directly onto a face mask. On a side note, I recommend avoiding your favorite foods while on infusion. I have a hard time having potato chips or chocolate because they trigger nausea from the association and am totally unable to handle sodas. Just the sound of a family member rustling a chip bag would make me feel sick even after a year later. Try to eat only fresh healthy things. The silver lining for me was that the whole experience helped me to reset my diet with healthier choices and eliminate or reduce the amounts and frequency of bad habits that I would probably never have been able to do on my own. Also, don’t underestimate the power of your body to function so drink lots and lots of water and walk walk walk to assist it in circulating the drugs out of your system as fast as possible so side effects are not as severe or long lasting. As a former middle school life science teacher, the biggest factors effecting your body’s ability to fight off illnesses are sleep, good nutrition, exercise, and reducing stress (stress is often the trigger that allows an illness to take hold, and most certainly amplifies situations making it harder to fight things off. ) You are in a very stressful situation so focus on what YOU can control. I got advice from a person who changed her outlook to endure the infusions who said to look at the drugs in a more positive manner by visualizing the iv bag as a “power pack” that you have an opportunity to receive to help your body. Even a subtle shift in mindset can help you get through more than you would think you are able to handle. It’s like when I cut my beautiful waist length hair in a power move before chemo to feel more in control. I had a cute pixie cut I never would have tried before it all fell out and somehow it gave me a boost to endure the first few infusions.
Hi Ticjet 123 I actually use Zofran for Nausea.it dissolve under your tongue, age it tastes good and works best for me. Keep Fighting, I know it's not easy. I'm going on 3 years with Metastatic Breast cancer. I Was on so many different medications. My last one was a an oral chemo pill, but unfortunately I had a major allergic reaction and was in the Hospital for 2 weeks, plus I got an awful Bacterial infection while in the Hospital. I'm home now trying to get my strength back. I have port surgery on Tuesday and start Liquid iv chemo on Nov 13th. I'm a bit scared. Praying for you 🙏 Stay Strong God Bless 🙌 🙏
Hi Ticket123. Dropped infusion time down to 2 hours yesterday and so far so good. My infusion unit has private rooms with hospital beds and a door that can be closed located behind the Nursing stations. People prefer the other option which are the stations with windows separated by two side walls and a curtain. You can hear and smell everything in the stations. The last two cycles I choose the private room. It was actually lovely. Turned out the lights, snuggled up in my heated blankets, listened to some podcasts, had a nice nap, and woke up with the energy to pick up a few needed things at the grocery store on the way home. Still doing my mint and holding my nose which works wonders for that awful smell and taste of the sickening infused nausea medication. Also steroids have been added which have been a help with rash, muscle weakness, and diarrhea. Yesterday the nurse reiterated the importance of staying well hydrated to combat the fatigue. She told me being dehydrated contributes to fatigue. The nurse said they have patients who come in fatigued, looking like wilted daisies and when they rehydrate them they spring back to life with energy.
An oncologist at MD Anderson gave another highly supportive interview regarding ADCs and Trodelvy. Like you, I want to stay on this medication as long as possible since it is working for me.
Per another seminar I attended there are currently 12 FDA approved ADCs, 11 ADCs denied by the FDA and 106 ADCs in the pipeline. Truly amazing. We have a lot of good life ahead of us. As they say it is the ADC era. 😄
Hi Ticket123, Just wanted to give you and Iwasborntothis a quick Trodelvy update since I have been following each of your journeys with Trodelvy. Started 7th cycle Monday. This month’s scans showed stable disease. However the best news is there has been a 25% decrease in existing tumor size since the start. These results are better than I had with Ibrance. Still using peppermints and holding my nose when they infuse the anti nausea drug. Managing side effects smoothly with 1 Imodium a day on the days I need it. Fingers crossed Trodelvy works for a long time.
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