Ok so I just cannot find a lot of information on Ixempra since it is new and not a lot of women have taken. So I am starting this thread and am going to update it with my response to the treatment so that others can access if they have to go down this path.

What got me here: Am Stage 4 and triple positive and was most recently taking Tykerb/Xeloda combo. Seemed to be working for a few months but most recently developed skin mets so doc wanted to switch to Ixempra.

First dose of Ixempra on 5/2: Whole process took 5 hours. Premeds and then the drip of Ixempra itself is 3 hours long.

Day one after: Feel taste buds changing a little, tongue getting rough and feel a bit tired.

Day 2: Day started off ok, but started feeling shooting pains all over my body. By mid day was very uncomfortable and hard to sit still. Only had advil to take (just emailed Doc for some Vicodin). Got about 4 hours of solid sleep due to intermittent pain when advil stopped working.

Taste buds changing more, but no nausea at all.

Day 3: Stay tuned

Thanks for the info.  I'm not sure which medication they will try for my next chemo (seeing the onc tomorrow), but in case it's Ixempra, it is always helpful to hear from someone who's been down the path before.  We sure do learn a lot from each other, don't we?  Most of the time when it comes to side effects of treatment we know way more the the medical community.

Day 3: So today a little better than yesterday. Still have a lot of pain though. Random pains all over body. No nausea (i normally don't get that) and no heartburn which is a bloody miracle. So small blessing I guess. This pain has got to go though!

Also feeling some pins and needles in some fingers and balls of feet. Just randomly at this point.

Hot baths are helping a lot!

I am on my third round of Ixempra. I am taking it with Xeloda. I am triple negative and this is my second chemo treatment in the metastic setting. It has worked extremely well for me - my tumor markers dropped by 100 points and my liver mets showed significant shrinkage.

I am having a lot of pain also - weird. The nurses seemed surprized by this so I am glad to hear it is not just me. I am taking oxycodone several times a day and it pretty much takes care of the pain. I also developed a blood clot in my upper arm. Onc says this chemo can cause blood clots but forgot to ask which - Ixempra or Xeloda.

Hope you have similar success with the treatment - be sure to get on some pain meds - they really seem to help.

Ok so another night of barely any sleep. Took some strong ibuprofen and ativan but was up every hour with pain and what I would call restless leg syndrome. Just felt like I could not keep my legs or my whole body still. Took 3 baths yesterday including one at 3am.

Woke up this morning and the shooting pains are almost gone. Still no nausea or heartburn. Body just feels heavy and I think it is because I have not slept in a few nights.

Arm yourself with vicodin if you go on this stuff...just in case.

I will have my fourth Ixempra this week, I get it every three weeks.  I have some pretty bad bone pain and also take Oxycodone for it.  I will get scanned before my fifth infusion.  Slc, its good to hear it is working well for you.

Hugs,

Kasey

Hi tooyoung and those of you who have pain on Ixempra,

Do you get Neulasta or Neupogen shot?  Is it possible that you're getting the pain from Neulasta/Neupogen instead?  A metastatic friend of mine and my oncologist independently suggested taking Claritin (yes, the allergy medication) for bone pain due to Neulasta/Neupogen.

I just had my 2nd infusion of Avastin+Ixempra today.  I still don't have any side effects other than hair loss, a little tingly/numbness on tip of fingers that lasted about a week, and an almost unnoticable fatigue.  Now I'm worried why other people on Ixempra had so much pain and I don't.

A lady in my support group is also on Ixempra monotherapy and she started about mid April.  She also had a hard time with pain.

Just curious too, does anyone take vitamin B's (especially B6)? 

Tooyoung, in regards to your taste buds... my integrative doctor told me to suck on ice chips/cubes during infusion.  The idea is to discourage blood flow (blood-carrying-chemo) to the sensitive area, therefore your tounge doesn't get the drug as much.

Hope everyone finds an acceptable resolution to their side effects.

up another night without being able to sleep more than a few hours. Pain has subsided but I still wake up with leg or foot jerking and just hard to stay still. Toss and turn all night long. Also had some nausea today (minimal really).

Pine: thanks for you input. I did not have Neulasta/Neu shot. And you are so lucky to have no side effects.

Ok another sleepless night...or little sleep. Legs/feet still so restless that I toss and turn all night long. Took some meds to help sleep and they did not even do the trick. Frustrating. Oh and my tykerb zits are back with a frenzy too so I look tired and zitty..Nice huh. Too bad I am not bald yet or I would be looking real good!

So are you guys bored with my posts yet??

Starting to feel some numbness and tingling in my feet. Other pain is gone though....thank goodness. Throat a little sore and again a bit of nausea at night.

Tooyoung, I'm not bored. Your posts could be very helpful to many in the future since there's not a lot of info on Ixempra being its a fairly new drug.

Hope you don't mind that some of us are posting our experiences on your thread.

Has anyone had a reaction to Ixempra?  I did during the first two chemos but the third and fourth went well with different premeds.  One of the bad parts is the Infusion itself takes three hours, that's not counting the premeds.  The good thing is I only get it every three weeks.

Good Luck,

Kasey

Hi Kasey,

Glad someone is not bored with me yet! And I appreciate the input so hope others will post their experiences as well. Not sure many are doing Ixempra yet so maybe that is why so few are posting. Or they are lucky and have not had the SEs.

And today I actually have good news.

I FINALLY SLEPT A FULL 8 HOURS UNINTERRUPTED LAST NIGHT!!! This is the first time all week. I feel so much better today. I wonder if it was the vicodin that I took.

Yay, a breakthrough!

Boy, it has certainly been a long week for you, tooyoung.  I'm glad things start to turn around.

I agree with Kasey.  You're providing some valueable info for some future Ixempra wannabees.

By the way, love those kitties... aren't they different kitties from the other pix?  I tried to take some picture of my kitty last year (supposed to be for xmas) but she's just not photogenic :(

Hope everyone is getting an easier time on Ixempra.

I am meeting w/my onc about Ixempra on Tuesday. Thank you for sharing your info w/us!

Howdy,

Thanks for the feedback all. Glad this info is helpful. that was the goal since I could almost find nothing on ixempra except the "official" guidelines etc.

Today woke up feeling good. Went for a long walk and the balls of my feet starting hurting about 30 mins into it ( and we walk a few times a week normally with no problems) so got home and have blisters. Why do I get this blasted hand feet stuff...had it with taxotere too.

still getting nausea too which seems to be getting worse. Only have it later in the day though. So get your compazine on if you do ixempra. Luckily the nurse hooked me up even though I told her I normally don't have nausea.

and PineHouse: kitties in pic are the same (rocky: black kitty and Napoleon (polie) is the tabby. love these guys!

Man the nausea continues. I have not had this SE with other chemos...a bit with xeloda but not much. Now I have nausea daily. Today I thought I was going to toss my cookies. Tummy is also got lots of other movement. Oh the fun just doesn't stop!  

Hope you are doing alright today, tooyoungtohavebc.

What a help to those starting a relatively new drug, the epothilone Ixempra.It is an anti-tubule agent, like the taxane family, so bone pain, numbness, fatigue seem similar to that of docetaxol (which I had) and taxol.

I'm hoping your nausea has abated, and you are feeling better.
Tender

This is so unbelievably helpful, hope you are doing better, sweetie!

{{{{tooyoung}}}}

please keep writing....i am anxious to hear more about ixempra

please keep writing....i am anxious to hear more about ixempra

Tooyoung,

I hope you are feeling better and getting more sleep.  I haven't had nausea on Ixempra.  The bone pain seems to be getting worse with each infusion.  Pinehouse, I am not getting Neupogen or Neulasta, my counts are bouncing back up there ok without it. 

Kasey

thanks gang for the words of encouragement! Guess what??? Today NO nausea!!! yeah first day of no sick stomach. I slept better last night too. Just made sure I took an alleve before bedtime.

Felt pretty tired today though and I took a nap, but this is the first day I have had fatigue really. Def have more energy than I did on Xeloda. That junk made me TIRED!

Am sure I will feel back to normal just in time for my infusion next week. Woo hoo!

How long was it  after you began Ixempra that your hair started falling out?

LoriFL,

My hair started to fall out on day 9.  Chemo hair loss generally happens on week 2 or week 3.  Seems the same with Ixempra.  I didn't lose it all completely and I purposely didn't shave (I still like to have side burns so that when I wear bandana there's some hair peeking out).

Tooyoung,

Enjoy the rest of the week!  Sure it's been a long two weeks for you.

Kasey,

Yes, I just learned that a lot of you have pain even without the Neupogen/Neulasta.  I guess the pain must be from Ixempra.  I hope it's manageable for you and I hope you at least have lots of painless days.

Wish you all the best.

I appreciate so much that all this info is being shared. I was up all night (really) thinking about starting Ixempra. I had it in my mind that it was the last chance chemo and if it didn't work, what should I do? Panicky? You bet! Does anyone know how long the average woman stays on Ixempra?

Hi gang,

ok hair is starting to come out. Not too much but def notice a difference. Am 13 days from first treatment. when i did AC/TX it was on day 17 i think that it came out a LOT. Man I cried back then. But this time I am mentally ready for being BALD.

Lori: I feel the same way as you. thinking what's next if this does not work, but i have had one treatment and I think the tumors are shrinking. My arm, which was bothering me a lot, feels much better. I think the tumor under my arm was pressing on nerves and now it has shrunk a bit so arm feels better.

Not sure how long I will be on ixempra. I asked the question and doc said he was not sure. Depends how it works.

Good luck with your first treatment Lori. IM me if you need to talk.

Pinehouse: thanks for your input! You guys are the best!