Ixempra
After failing Kisqali/aromasin, abraxane and halaven, I’ve now begun my journey with Ixempra. I get treatments once every 3 weeks.
Tuesday was my first tx - in between meltdowns (due to report of progression), I slept a lot. Until that night. I was up all night long. I’m sure it was the steroids in the premeds.
Wednesday was a good day. Again, I slept a lot, but felt pretty good when I was awake.
Thursday I woke up with the “I think a train hit me” muscle aches. Other than that and a slight headache, all was okay.
Today - we’ll, the muscle aches seem better, still have a headache, feeling some discomfort in my hip joints, but worse than that is my throat is sore and I have achiness in my ears.
I realize this isn’t a common chemo (according to lack of topic on this forum), but I would love to hear from anyone who has, is or will be experienced/ing Ixempra
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Hi Shelia, this link is to a thread that just started this week and in it, Daniel has a link to an older one. Maybe there's something helpful to you.
https://community.breastcancer.org/forum/8/topics/866909?page=1#idx_2
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Thanks, muddling. I read through all of those. One hasn’t had activity in over a year, and the other is regarding skin mets so I was hoping to attract newer and more generalized activity. It just doesn’t seem right to have so few of us on this particular chemo 😕
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Just wanted to make sure you read what was there. I had never heard of it before. I really hope it works for you and that others who are on this will chime in here.
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Second dose of ixempra today. Hair has been falling out in large quantities. I didn’t even know I had that much! It hasn’t been growing out for long. Oh, well. Let’s see how this cycle goes..
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I had my second ixempra infusion Tuesday. Not sure how I’ve felt this far though. Yesterday CVS refused to fill my pain rx. They said it was too soon and I should have plenty. WTH do they know?? I was so embarrassed, and PISSED. I've never dreamed I would be labeled a "seeker". But there you have it. Of course my onc nurse called them and had it pushed through, but the emotional draining was real. I laid down for a nap at 430 yesterday afternoon and woke up at 735 this morning. Hoping today is a better day.
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Thank you for sharing and chronicling your experience with this drug. It might not be largely used but some might benefit from reading this in the future.
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I hope to be able to help someone in the future. I wish there were more of us now, though. Support systems are help so much
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How are things on Ixempra? Hope you haven't run into any more problems with CVS.
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After a call from my onc RN, no more issues
After the steroid high and then crash on days 2 & 3, the flu like aches started again on day 4. This time I had an awful headache along with the generalized achiness, sore throat and earache. Not severe, but constant and sharp more so than dull. I’m wondering if it was the neulasta that caused the headache? It hasn’t completely resolved yet. But overall today (day 8) has been a good day.
On good days I think “I can do this and have a decent life”, but on bad days I think “I can’t live like this! This is no life!” So I guess I keep taking it day by day. Right this moment I really want to march into the kitchen and whapmy husband. He’s so LOUD. And he never listens to anything! But that’s another topic. Thank you for checking.
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hi, i have been on lxempra now for my 4th infusion. My onco says it is fairly new. I am continuing on witn xeloda which cleared mets to my liver. Hoping this drug works to clear or improve my bone mets
Glad to see someone else on the drug, my side effects are some nausea mostly
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I started on Ixempra 2 weeks ago, my SE’s were very similar to SheilaMarie’s. I still have hair, but read that may start falling out after next dose. My dr said he was starting me on lower dose. I have been having mild h/a, ears full of fluid, sore throat & tongue pain. My hips hurt more than before & my liver is in pain. I sleep 12 hrs at a time. I use a fentanyl patch, which helps keep pain under control. Sue
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Oh, sue, the hip pain! I’ve “gotten used to” my back pain (as much as one can!), but the hip pain is new. I had my third treatment last week and this time I continued steroids for 5 days and added in a muscle relaxer so I was a bit more able to participate in life. I still had the sore throat, sore tongue, ear ache, fatigue and general yuckiness though. So glad to finally see someone else on this treatment! I hope we can be helpful and supportive of each other throughout
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Unfortunately I’m moving in. Ixempra kept my lymph nodes and spine stable, but now I have two spots in my left lung. Time to try Xeloda.
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sorry to hear that SheliaMarie. If its of any consolation, everything I have read so far about Xeloda and its effect on cancer is way better than Ixempra.
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I had 3 rd dose of Ixempra, which was 2nd full dose. Hair is gone, muscles ache a lot. Left foot going numb, which is throwing off my balance. Tongue hurts & throat is sore, ear issues have resolved. Brian fog is present. White counts ok, Hgb down to 8.5. Asking for blood transfusion from family member is like jumping thru hoops. I am requesting transfusion because I get short of breath & dizzy w/exertion. No lung mets, just liver. Sue
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Well TM’s going up, stopping this terrible drug. Losing hope that anything else will work. Short of breath just walking to bathroom. Sue
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This has been a pretty quiet thread, hoping for others out there who are on this treatment and can share their experience. I will be starting Ixempra with Xeloda after I complete a short course of rads. I'm coming off Halaven, which gave me trouble at the start but ultimately settled down into a very doable treatment. It's always hard starting a new treatment and dealing with the emotional toll of progression. Finding others dealing with the same issues is really a comfort.
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Even though I don't see others on Ixempra at present, I'll try to post my experiences in case it helps someone else down the road. Had my first infusion today. The only premeds I got were Zyrtec, which I took at home, and Pepsid, which was administered through the IV. The infusion itself is long - 3 hours. The nurse went over the possible SE's. Nausea, fatigue, and muscle aches, especially in the first week. Hair loss (already gone, so no biggie for me.) Constipation/diarrhea. Neuropathy. Mouth sores. You get the idea.
I'm also taking this with Xeloda. I'm starting at a high dose, 3500mg, which is 3 pills in the morning and 4 in the evening. I start taking them tonight, for 14 days, then 7 days off until next chemo. Biggest issues from what I can tell are HFS and diarrhea. So between the two I think I've got all the possible SE's covered. Maybe somehow they'll cancel each other out!
Right now I'm feeling sort of ok, a little nausea and that stripped feeling in my throat and esophagus. Tongue is a little sore. I'm not loving the thought of taking even more chemo tonight, but I told MO I'd be a good soldier and give it a try. But I'm on a short leash - if the SE's become too rough I'm stopping the Xeloda and we'll see what goes from there.
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Hi Jaylea. thanks for sharing your experience. I hope it goes as smoothly as possible for you and that the side effects are as minimal as possible... and of course that it is super effective!
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Almost 2 weeks into my first infusion, and thought I'd update on SE's. I took Xeloda for the first 8 days but stopped when I developed severe esophagitis. We think it's from the course of rads I had to sternum right before starting this tx. MO said daily use of Xeloda was preventing any healing from going on, so she stopped it so I can heal up. She did say she would dose Ixempra as a monotherapy if Xeloda is too much.
The main SE right now is chills and body aches. I'm surprised at how strong they still are here at day 12. Earlier what controlled them was 2 Tylenol plus a tramadol. Now I've eased off the tramadol but if I miss a Tylenol dose I pay for it. Fatigue is an ongoing issue (what else is new) and last night I developed mouth sores but they've calmed down considerably today.
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Reporting in on day 9 of 2nd dose of Ixempra. I had a lull in activity as I skipped a dose to allow the esophagitis to heal. I also had a heart-to-heart with MO. That first course of Ixempra plus 8 days of Xeloda, I had no good days up to the time I would have taken that second dose. I can take a lot of bad days if there are some good days at the end, but to have no good days (and by that I mean good enough to get dressed and get out of the house) is no way to live. So we decided to drop the Xeloda entirely, and try Ixempra on a 4 week schedule. If that's too much, we'll drop the dosage. Whether it's the absence of Xeloda or that my body adjusted, this second dose hasn't been nearly as bad as the first. Still chills, very mild nausea, and body aches, but a good 50% better than last time. I took Tramadol for a few days, just one in the evening so I could sleep. And occasional Tylenol during the day.
My goal is to stay on this dose and schedule until the end of April when I scan. That's 2 more tx. I think I can do it. Sending love to all future Ixemprians.
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Jaylea, we meet again! 🤗
I’m scheduled to start Ixempra and Xeloda as soon as it’s approved by my insurance. The abraxane/tecentriq didn’t work at all. My lymph nodes that were swollen from possible pseudo-progression was actually the cancer growing. I went to a surgeon to see if they could be removed because of pain but it it is now a large mass with chest wall, ribs, muscle and vein involvement. I also got a new oncologist.
I’m sorry you’ve had a hard time with the Xeloda but I remember you had esophageal issues before. My doctor said we’d do just the opposite - stop the Ixempra if I started having issues. I didn’t realize there was hair loss involved (!) but when has there not been hair loss involved? I just cut my hair (it was finally growing) so I’ll start again from scratch! 😂
I hope your new schedule works well for you! Thanks for sharing!
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Wandering, what a lovely voice to hear in these lonely woods! I think I'm the only person in the infusion clinic on Ixempra. My MO, who is head of the department, is known for outside-the-box regimens. She also teaches at UCSF, so maybe that broadens her horizons. Sounds like your new MO is in that camp.
So sorry to hear the abraxane/tecentriq didn't work. I hope you have the pain under control. Better still that this new combo does a number to reduce the mass. Let me know how you're doing and if you have any questions. Sending prayers and hugs, JL.
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Oh, Jaylea,the side effects! 🥴
I started last week on Tuesday with the Ixempra infusion and Xeloda pills and by Sunday morning I quit taking them and called my MO because I couldn’t handle the side effects! I was doing my best to deal with fatigue and stomach pain but the dizziness got to me so I am off for now. We talked about decreasing the dosage but since I’m going to be doing some radiation we decided to stop until that is finished. The RO said that 10 visits should work so it will not be a long wait but I’m waiting for the insurance to approve the scan so we can start. 🤷🏻♀️ All this waiting, you’d think we have all the time in the world. In the mean time I’m hoping to get my thyroid issues under control that was caused by the immunotherapy. The fun just never ends, does it?
I hope you’re continuing to do well on this treatment.
Hugs to you!
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Wandering, stopping the chemo as you prepare to go for rads is a good plan. I hope your pain is under control for now. The Ixempra + Xeloda is a tough road, no doubt. Keep me posted as you continue this path.
My MO actually postponed my Ixempra due to covid concerns. I'll get the next infusion in a couple of weeks.
Big hugs from JL.
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I would like to let everyone know that Joy is in hospice now. My name is Cormac, I would like to thank everyone that has helped my love over the years. She is my one and only and the love of my life.
L
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Cormac, Thank you for letting us know about Joy.We have noticed her absence on the threads. She is a treasured contributor. My thoughts are with you and Joy.
Hugs and prayers from, Lynne
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Cormac,
Our thoughts and prayers are with you and Joy. May she finally have peace from her disease, and may you find comfort in your love for her.
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Cormac, my thanks too, for informing us about Joy. She has been missed on the threads and we have been wondering. My thoughts are with Joy, you, her family and friends. Hugs.
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Jaylea. you are not alone in this next chapter. We are holding you in our arms.
Thank you Cormac for letting us know. That had to have been very difficult to send us the message.
Jaylea must have had hard time with her chemo since March. She supported so many of us in our treatments. We never really meet our BCO friends, but we get a great sense of who they are and she is a beautiful person.
S
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