Ixempra-My experience
Comments
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TooYoung,
Soory to hear about your pain that has to be a drag, hopefully this drug will be worth the SE's kicking cancer butt. I have no experience with the drug you are on, but it is good mental notes to have should mom need it at some point in the future. Where in the Bay Area are you?? Are you being treated at UCSF, that is where my mom goes. I will keep you in my thoughts and hope that you get over this soon.Hugs Michelle
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Go on the Wagons/Moving On Thread/ Community Afghan to find out about making "squares" for blankets of comfort.
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Has anyone's onc suggested a lower dose of Ixempra to reduce SE's ?? I am seeing mine tomorrow and think I want to have that conversation. I have been thinking maybe this tough treatment will get me to NED but not sure I can take this a whole lot longer.
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slc
you are reading my mind. I have my infusion next week and see doc at same time. Am going to talk to him about reduced dosage cuz I feel the same as you. They normally base dosage on clinical trials and so sometimes they cannot deviate if drug is new and was approved based on those trials (thus the 3 hour drip) but am going to see what he says.
today i feel a bit better. Still wake up EVERY night several times but mostly at 3 or 4am. So I get up and read or work on something and then go back to bed and wait for alarm to go off. Have decided to take July-Sept off from work to get thru this. Can't wait!
Mimi: I live in Oakland but go to Kaiser in SF for treatment. They use a lot of the same protocols as UCSF and as MD Anderson as well.
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Too Young
I will let you know what my onc says. I think I might have had the ixempra reduced once already now that I think of if. My first dose tanked my blood counts and I think he reduced it then but not since. I am also having scans so I am hoping for more positive news ! I am so glad you are taking time off work - I just can't even imagine working....also glad you are feeling better - are you taking any pain meds ? they have helped me sleep- I still wake up several times a nite but can get back to sleep relatively easily. Take care0 -
Bad news at onc today. Scans show some growth of the liver tumors that had previously been shrinking. Good news I get two weeks off to rest up and then move on to Gemzar which my doc says is much better SE wise. I think I am also going to call Dana Farber and see about getting another opinion with them. I am not as upset about this as I thought. I don't think I could have gone forward with this treatment for too much longer. I wish everyone the best on this chemo - it seems to be working for a lot of you !!!!
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slc,
So sorry you have a progression on this drug.
But like you said, if the drug itself degraded your quality of life that much, maybe it's not for you anyway.
I'm crossing my fingers for you that Gemzar will be easier to tolerate. And better yet, that Gemzar could shrink your tumors!!!
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I, too, am sorry to hear about your progression.
I came off Gemzar to go Ixempra. Had 1st infusion.
When I was on Gemzar, I forgot I was on chemo. It is a very doable chemo! And you don't lose your hair!!!
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thanks for your support Pinehouse and Lori - too think I could grow my hair back !!! Yeah !! I am happy to hear about your good experience on gemzar - I will keep you posted !! SL
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slc, sorry about the liver growth. Hope gemzar works.
Good news! My onc finally replied and is going to lower my ixempra dosage next infusion to help lessen the SEs. I hope it works! Will keep you guys posted. Treatment is next thursday.
still not sleeping over here...think i am officially a ZOMBIE now. Didn't know zombies got BC
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hi everyone i had my 2 treatment friday the 30 of may kinda worried here, i had no side effects this time like last time im also on xeloda i had yucky mouth and mild fatigued and waiting for the pain well our regular pharmacist was on vacation with my treatment so they were mixing upstairs with new interns so im worried i didnt get right stuff if any i was extremely sick and pain was terrible last time cant beleive i would go from extreme to nothing so i seen nurse and asked to check if i received correct treatment she said youre chart will say you did butshe would check with doctor and i didnt hear nothing so i take it i got what i was suppose to buti cant beleive it.
god bless and hugs and prayers to all
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Gearing up for infusion 3 on Thur. Dosage of ixempra will be lower...YEAH...and because I have not slept for more than 4 hours straight for the last 7 weeks, I also asked Doc to lower steriods too and he agreed. I took Temazepam to sleep last night and it did NOT work. Man I am hurting for some sleep for sure. I can't even nap.
Here is hoping #3 is better than the rest!
How are the rest of you gals doing?
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Infusion #2 is on Tuesday and I must admit that sleeping has been a little problem, too. I fall asleep just fine but I wake up wide awake after 4 hours and have difficulty going back to sleep. So I haven't had a full nights sleep in a while. Other than that, all is okay.
I have curbed my activities tremendously. But I don't know if it's from the chemo or the cancer.
I just want it to work!!
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Hi all,
I just had my scan this week after being on Avastin+Ixempra for 3 cycles.
The result showed "stable". Basically there's no new nodules, the largest tumor's new measurement is slightly larger and the 2nd largest is slightly smaller, both are within the margin of error in measuring non-perfect shapes. (Mets are in the lungs)
So, it's actually good news and bad news. Good news because the drug was able to slow or control tumor growth. But bad news because the drug didn't make the huge impact that oncologist and I were hoping for. Although many ER+ ladies may stay stable for years on one same regimen, that is not so with triple negatives. We are not known to be stable for a long time.
So the oncologist suggested that I consult with a thoracic surgeon for possibility of getting tissue sample for molecular profiling (hoping that the result can better direct next treatment option).
He also offered that if I wanted to change treatment right now he would use Tarceva (since I have not tried EGF inhibitor). He felt that giving me other chemos will be ineffective since my tumors appear to have developed resistance to many drugs. I have similar thoughts myself.
Lots of things to digest...
Well, I pray for good night sleeps and no pains for each and every one of you here...
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Hi Ladies,
Just discovered your thread and I have just had my 1st Ixempra treatment today. Please allow me to acquaint you with my background.
I live in eastern PA in the Lehigh Valley. I am soon to turn 50 in February. I was first diagnosed in November 1999. Due to a high family history, removed both breasts with saline implant reconstruction in December 1999. Only one lymph node out of 19 removed was involved and was very tiny. Followed surgery with 6 month regimen of AC/Taxol, then went to Tamoxifen for the 5-yr plan.
Two months shy of the 5 year mark (late spring/early summer of 05), very small mets occurred to the lungs. Left side was inactive, right side had issues with fluid being generated from the pleura lining as a result of the cancer thickening the lining. Had to undergo a pleuradesis to resolve the fluid issue. Since the bc was 90% ER+ and 10-20% PR+, I was first placed on oral Femara (hormonol drug) for 4 months, then on to injections of Faslodex (another stronger hormonol drug). Both were unsuccessful. Then I went on to low-dose Taxotere and was good to go and continued to work full-time with minor side effects (eye tearing and fatigue) for another 16 months. My CA27-29 tumor marker readings went down remarkably from over 1000 down to the mid-50's during that time frame. Normal range is 0-38.
Then fluid developed again, this time between the pericardial lining and the heart. Went to a thorasic surgeon in early August 07 to do a pericardial window procedure. All testing on the fluid and pericardial tissue came back negative for cancer, so it was decided that it was a remote side-effect of the Taxotere. Went back on the Taxotere, but my CA27-29 tumor marker was back on the rise. We learned that at the same time the fluid developed in my chest, the cancer was becoming resistant to the Taxotere.
My next Pet CT showed a new spot on my liver that was growing very rapidly. It grew to over 10cm in just a couple of months time. This past March, needed to undergo chemo embolization to get that bad boy under control. It knocked me on my back for 3 weeks (YIKES!). While I was on the table for that, other small mets on the liver were detected that were too small to appear on the Pet CT. SOOOOOoooooo, I then went on to Epirubicin/Cytoxan/5-FU. After 3 cycles of that, did another Cat Scan - showed the cancer was slightly increasing, not decreasing.
So here I am, now TX/AC resistant, beginning the Ixempra regimen in combination with Xeloda. Haven't started the Xeloda yet (waiting for insurance approval). I've read all the literature with side-effects, but wanted to dialog with people on the regimen to get real life feedback on their experiences.
Tooyoung - I feel for ya - I really do!!! I pray that you will find great success with this treatment and what you have had to endure will be all worth it. My healing thoughts and prayers are with you.
May God bless all of you fighting this battle with intimately special blessings as you forge ahead in your continued quests for life.
Keep the faith and remain encouraged!
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I forgot to mention that I am also HER2 negative and, therefore, not a candidate for Herceptin.
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My hair has started falling out! It is day 15 after my first infusion. Has anyone else lost their hair?
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Bald here! Started falling out in clumps day 17...just like good ol AC. Waited as long as I could and then shaved it. It was messy.
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Hey kids - I'm in the Ixempra gang. I had my first hit on June 2nd. I had the leg pains bad but I did something that helped. Hot tub!! Shooting jets right on my leg pains for about 30 minutes did the trick. Next week is my 3rd week and I am taking my girls to Padre Island. I wont have to be on my Xeloda and I should be feeling good. I haven't lost my hair yet - that would be a yucky time to loose it - so I will be praying for hair staying power. I just found out this week that I have positive cancer cells in between the lining and my lung. This makes me chronic. I'm not sure what it all means except that it is not good news. So I am going to choose not to believe it - I think that my doctor my have some kind of strange obsession with me and he can't stand the thought of me not coming back every 3 weeks. For crying out loud - come by the house. It would make my life simpler. Sleeping time with this Xempra is done more effectively with a little codone. 2 pills at lights out and your lights will be out for the night. Well thanks for your info "Too Young". Don't feel alone. I'm right here with ya! - kateva17
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I lost my hair on the Epirucin/Cytoxan/5-FU regimen. I've been bald as a baby's bottom for a couple of months now. It's great in the hot weather. LOL! I just wear fun, light hats during the spring & summer months and I use my wigs in the fall and winter. At least, it keeps me stylish and diversified!
As for side effects after yesterday's treatment, I am good to go at this writing - no issues to speak of - YET! I'll keep y'all posted...
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I have been hanging out in my pool each evening for relaxation. Maybe it is my body telling me the water is good for me!
I am feeling pretty good other wise.....
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Another update. Had 3rd infusion on Thur 6/12. Doc lowered Ixempra, but nurses would not lower steroid. So I had a fit and next time I don't have to do the steroid at all...so there!
Friday: i felt kind of drunk again. And my feet are killing me! Took 1.5 ativan that night hoping to sleep. Took advil for feet pain.
Saturday:Did sleep 8 hours, but feel tired ALL day. But I did get stuff done around house and took dog for walk. Feet still hurt.
Sunday: Feet pain subsides and no other pain yet. It is weird. Could the lower dosage have worked or maybe it is just going to be delayed? Whatever it is..I will take it! Am tired today cuz the 1 ativan I took didn't work and I was up around 3am.
ok stay tuned and cross your fingers that the pain never comes...
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Still no PAIN!!! foot pain subsided completely and no other pain anywhere else. Few twitchs in knees and wrists but no pain. I think the lower dosage worked...at least for now. YEAH!!!! Talk to your docs if you are having pain. Get the dosage lowered.
Still fighting for sleep though....
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Sounds like the lower dose is the answer! Glad to hear all is good!
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I had my dec. dose lowered today. But I am still handling the Ixempra ok.
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Hi Girls,
Too Young, I'm very happy to hear that the lower dosage helped to reduce your pain level. As for me, it is now 1 week & 2 days after my first infusion and I seem to be doing ok - just very slight neuropathy in 2 toes and my tastebuds have flattened. BUMMER! I really like to ENJOY my food! LOL! But I have no issues with nausea. YAY! I was even able to work part-time for a couple of days without any issues.
I was only just approved on Thursday by my insurance to start taking Xeloda - to begin on my next cycle which is July 3rd. I'll be taking 2000mg twice a day (that's four 500mg pills taken in the morning & evening). That sounds like a lot to me, but I imagine that's the normal protocol. Can anyone advise if they are on the same dosage? If so, any side effects to anticipate? It's my understanding that Xeloda becomes, in effect, 5-FU as it's absorbed into the body. I'd really appreciate any further feedback on Xeloda.
Best wishes for a nice weekend, everyone!
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You are going to be taking Xeloda with Ixempra?
Xeloda doses are calculated by your body weight. And your dose sounds prettyaverage. I was on Xeloda for a little more than a year. It is a realtively easy chemo to do. Just be on the look out for hand/foot syndrome. I used Bath and Body Works Spa collection on my feet and that helped alot!!
My tastes are very flat and I have a bit of a sore throat. Anyone else feeling a sore throat? Day 3 and 4 seem to the lowest for me.....total fatigue!
Just keeping my fingers crossed that this is working!
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You are going to be taking Xeloda with Ixempra?
Xeloda doses are calculated by your body weight. And your dose sounds prettyaverage. I was on Xeloda for a little more than a year. It is a realtively easy chemo to do. Just be on the look out for hand/foot syndrome. I used Bath and Body Works Spa collection on my feet and that helped alot!!
My tastes are very flat and I have a bit of a sore throat. Anyone else feeling a sore throat? Day 3 and 4 seem to the lowest for me.....total fatigue!
Just keeping my fingers crossed that this is working!
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Hi LoriFL - so sorry for the delay in responding. Yes, I start Xeloda on July 3rd at the beginning of my 2nd treatment of Ixempra. According to my doctor, the stats show that Ixempra taken in combination with Xeloda works better together than if taken alone. Thanks so much for your feedback on Xeloda. I am going to try to take it with food so it absorbs more gently into my system than if on an empty stomach.
My doctor also warned me about the hand/foot syndrome. If I develop an issue, I'll try your suggestion with the Bath & Body Works Spa collection. Thanks for that tip.
I did have a slight sore throat on the Epirubicin/Cytoxin/5-FU regimen, but not experiencing that at the present time since changing to Ixempra. Once I start taking the Xeloda next Thursday, that may change.
Be well and be blessed!
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I am on Ixempra and Zometa. I find being on Ixempra very depressing even on prozac.
I was not this "low" with the other chemos. Does anyone one else have the same problem?0
