Posted on: Aug 31, 2018 01:43PM
Posted on: Aug 31, 2018 01:43PM
SheliaMarie wrote:
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
Oct 15, 2018 08:16PM Sue2009 wrote:
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
Oct 16, 2018 11:47AM SheliaMarie wrote:
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 
Oct 31, 2018 04:31PM SheliaMarie wrote:
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.
Oct 31, 2018 04:42PM Daniel86 wrote:
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.
Nov 26, 2018 04:01PM Sue2009 wrote:
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
Dec 15, 2018 10:25PM Sue2009 wrote:
Well TM’s going up, stopping this terrible drug. Losing hope that anything else will work. Short of breath just walking to bathroom. Sue
Dec 19, 2019 02:06PM - edited Jan 13, 2020 03:47PM by Jaylea
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.
Jan 13, 2020 04:00PM Jaylea wrote:
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.
Jan 14, 2020 10:30PM thrivingmama wrote:
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!
Jan 24, 2020 12:31PM Jaylea wrote:
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.
