Ixempra-My experience

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  • kenzie57
    kenzie57 Member Posts: 207
    edited June 2009

    Hi Denisela:

    We shared posts last wk as we both just started this drug.  My sister took over and called the onc this morning and got another script of perc and a script of oxy for me.  I didn't get the oxy filled yet.  My reg pharmacy didn't have any and when we found one that did, my insurance didn't want to pay for it.  But, having the additional percs helps a lot, because I can now take them when I need them.  Of course, the constipation is awful but the pain was worse.  There is no way the onc will give me a full dose next time.  I agree with too young ... This shit is brutal.  I don't know how to pm on this board but am willing to learn so we can stay in touch.  I am glad you seem to be handling this stuff O.K.  Here's to our success!!

    Take care,

    Linda

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  • tooyoungtohavebc
    tooyoungtohavebc Member Posts: 779
    edited August 2009

    just wanted to bump this thread as I noticed a few are starting Ixempra. Good luck gals.

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  • kenzie57
    kenzie57 Member Posts: 207
    edited September 2009

    Bumping again for Ixempra Info for Kathy

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  • Duffymom
    Duffymom Member Posts: 179
    edited September 2009

    Thanks for the bump - guess I've got some reading to doWink

    Kathy

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  • Duffymom
    Duffymom Member Posts: 179
    edited September 2009

    Just wondering how the ladies are doing who started in the beginning of this thread over 1 year ago.  Still on Ixempra? Doing well?  On something else?  Hoping and praying that everyone is feeling good.

    Kathy

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  • tooyoungtohavebc
    tooyoungtohavebc Member Posts: 779
    edited September 2009

    hiya duffy,

    I finished ixempra in Sept 08. It eliminated my skin mets and shrunk the tumor under my arm. However literally 2 weeks after stopping it, my skin mets started growing again. I felt like I had spent 6 months in ixempra hell for nothing!

    So then I went on herceptin for several months and then in March of this year I was invited to participate in a clinical trial of a drug that is a new version of herceptin. So far it is keeping me stable...makes me tired as heck though and is affecting me eyes a lot....but stable is better than progression so I will take it!

    Hope you are doing well on Ixempra. It was my toughest chemo so far and my feet are still messed up from it.

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  • Duffymom
    Duffymom Member Posts: 179
    edited September 2009

    Thanks tooyoung for your update.  I've read from others that as soon as they stopped Ixempra the cancer comes back like gangbusters.  I'm a TN so I don't think Herceptin would do me any good.  I haven't actually started Ixempra yet. Just gathering info for when I see my dr next.  PET scan on 9-8 and dr/treatment on 9-15. Thank you so much for this thread. I've read it twice now and have a list of stuff to talk to my dr about. Not alot of options for TNers out there, so I'll do whatever I have to.  I hope you continue to remain stable. - Kathy

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  • lifeline59
    lifeline59 Member Posts: 37
    edited September 2009

    Hi Girls,

    I've been following the thread though I have not posted for a few months.  So many of you have been experiencing more severe SE's, and since mine have been comparatively minimal, I felt I had nothing to share that would offer you encouragement and comfort.  So I stayed quiet.  I am about to do my 22nd cycle of Ixempra next Thursday.  My last CA27.29 three weeks ago was very slightly elevated.  I had been running stable at between 200-210.  My last reading went to 221.5.  It's very slight, but it did cause me some concern.  We're hoping it's just a wiggle or lab fluctuation.  Yesterday, I did a new round of bloodwork, including the CA27.29.  I'm hoping for another decline.  If it rises again, even slightly, a new CT scan will be ordered, and if it shows that the cancer is starting to advance, we will change to another chemo regimen.  I only have a couple of options of established protocols left to try, then it's on to clinical trials (if my insurance will approve them).

    I'm just asking for prayer that God's peace will dominate in my heart no matter what I may be facing in the continued battle against this illness.  I also have several other personal issues going on causing great stress to both my husband and me.  It's just more difficult on me emotionally to fight the cancer in the midst of these other issues that we must work through.

    To those of you who believe and have a personal relationship with Jesus Christ, I covet your prayers and deeply thank you for standing in the gap on my behalf.

    May God richly & intimately bless each of you.

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  • Duffymom
    Duffymom Member Posts: 179
    edited September 2009

    Lifeline - I am so glad you finally decided to post. I am encouraged that you have had little SE from Ixempra and have been on it for many treatments. You prove to me that I may not have the awful SEs others have had. I start treatment on Ixempra in about 1 week. I'm thinking positive thoughts that your CA27.29 will go back down.  Also sending prayers your way for the personal issues you are dealing with.  I know that cancer is enough to deal with on it's own. I find I don't handle other added stress very well like I used to.

    Hang in there!  God bless you and watch over you!  Keep on posting to let me know how you're doing.

    Kathy

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  • rdrake0
    rdrake0 Member Posts: 180
    edited September 2009

    Hi, everyone.  I'm on a clinical trial of Ixempra and Avastin.  I'm on the 3 weeks on, 1 off with Avastin every 2 weeks.  I have BC mets to my liver.  I'm halfway through the second cycle (started July 30).

    I didn't have SE during the first cycle.  But this second cycle is getting to me.  I still have my hair.  But I'd gladdly trade it for less nausia and abdominal pain.  On top of that my liver enzymes are going up.  I'm guessing that isn't good.  I had 14 lesions in my liver.  The surgeon took two for a biopsy.  Have an MRI on Monday.  Could use some good news.

    I just thought I'd chime in...

    Ruth

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  • lifeline59
    lifeline59 Member Posts: 37
    edited September 2009

    Hi Kathy,

    Thanks for your encouragement - it's appreciated! Laughing  And for the prayers!  My last CA27.29 was 229 - not much of a jump from the previous 221.5 reading.  My oncologist is not too concerned and feels we should stay the course for at least another cycle.  I've already passed the first week of that next cycle (had chemo last Thursday).  Next Thursday, will be my next CA27.29 reading.

    Since the tumor marker is non-specific, it could be reflecting something else, like a bug of some sort that may be trying to get into my system.  My hubby has been sick with the flu for the past 6 days.  Also, 4 members of the staff from the infusion center where I receive treatment were down & out with confirmed swine flu.  So we certainly have our share of viruses floating around.

    I pray that God will be gracious to your body as well concerning SE's as you start the Ixempra regimen and that it will prove effective against your cancer.

    Thanks again so much for your prayer support.  

    May God bless you & keep you.

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  • rdrake0
    rdrake0 Member Posts: 180
    edited September 2009

    Ixempra failed me, the onc said.  I am officially off it.  My liver lesion grew significally during the past two months and there are several more now.  What a waste of time and pain! 

    Ruth

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  • Duffymom
    Duffymom Member Posts: 179
    edited October 2009

    Turns out I'm getting a reprieve from having to start Ixempra.  I've been on Gemzar/Carbo/Avastin since Dec and have developed an allergic reaction to Carbo.  Instead of switching to Ixempra, oncologist wants me to try just Gemzar/Avastin.  My PET scan in Sept. shows cancer is stable.  I'll try this for awhile and if it doesn't work, then will either switch to Ixempra or Xeloda.  I did a Happy Dance that I don't have to change, will get to keep my hair, and continue with minimal side effects.

     Ruth, I'm sorry Ixempra failed you.  Are you trying something else?

    Kathy

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  • rdrake0
    rdrake0 Member Posts: 180
    edited October 2009

    My onc wants to get other onc opinions before deciding on a new chemo.  I just saw one last Friday who thinks now that what is in my liver is not bc.  He called in an endocra-something or other.  I asked where it would have started from, and he said the liver, but it isn't liver cancer.  Now I'm really confused!  But I have been having diarrhea since March and before that serious constipation issues.  He said that this is a sign of that endo cancer!  Maybe he's onto something!

    It's been 3 weeks since my last Ixempra infusion and I'm still having abdominal se.  Feels like rat poison in my gut.  Might be the IBS a GI doc said I had a year ago that is being seriously affected.  All I know is I'm really glad to be off Ixempra.  It was aweful!!! 

    Ruth

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  • lifeline59
    lifeline59 Member Posts: 37
    edited October 2009

    Hi Gang!

    Just wanted to let you all know that after 23 cycles of being on Ixempra/Xeloda, I will be moving on to the Avastin/Abraxane regimen as this regimen is no longer effective & my cancer is back on the move.  I just wanted to say how much I've appreciated the discussions on this thread and it's been a privilege to be part of a topic that gives hope to so many other women. I'm grateful for the 15 months it gave me.  So now, I will continue sharing on the threads involving Avastin & Abraxane.

    Continued best wishes to you all in your continued fight!  Smile

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  • TiderInsider
    TiderInsider Member Posts: 7
    edited December 2009

    My mom starts Ixempra Tuesday. It is our last option. She was diagnosed with bone mets in Jan 2008. She now has mets in her liver and acities in her abdomen.

     I'm not sure she is strong enough to handle this drug. Most recently she was on Xeloda, but she couldn't stay well enough to take the treatment. Another concern is that her platelets are below 30k. She's been going in to get platelet infusions, but they haven't helped much. Her bone mets are keeping her body from making the platelets she needs to keep from bleeding.

     It seems like the treatment has knocked others down who were in much better shape than my mom. I've asked her if she was sure we wanted to do this...but a few months of hospice care isn't an option she's willing to consider.

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  • alancer
    alancer Member Posts: 53
    edited December 2009

    I was just going to post a thread about this as I have been suffering since tuesday started ixempra and have been in so much body pain, my onc said it was probably gas, but theres no way, now that i read the posts, a relief to see that i am not imagining this.  i dont think i can go thru this every three weeks unless it wears off.

    angela

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  • NOTaStatistic
    NOTaStatistic Member Posts: 7
    edited December 2009

    My last cycle of Ixabepilone(Ixempra) was six months ago and my taste and smell have still not recovered.

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  • Bmarie
    Bmarie Member Posts: 129
    edited January 2010

    May be starting Ixempra...for those on it currently, how are you doing?

    Thx so much!

    Barb

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  • Duffymom
    Duffymom Member Posts: 179
    edited January 2010

    Good to hear how ladies are doing with Ixempra.  My dr was deciding between Ixembra and Xeloda.  I am pleased that she decided to try Xeloda as I've read terrible stuff about Ixembra on this forum.  I hope some of you are tolerating it and doing well.

    Kathy

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited January 2010

    bumping for wingsofhope :>

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  • WingsofHope
    WingsofHope Member Posts: 497
    edited January 2010

    Thank you!.......  

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  • WingsofHope
    WingsofHope Member Posts: 497
    edited January 2010

    Where are all the ladies who posted on this thread...   Or should I even ask? Cry

    I am dealing with the bone pain myself ... wish I had others to help me with this treatment.  

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  • rdrake0
    rdrake0 Member Posts: 180
    edited January 2010

    In Oct I had a TACE (adriamycin directly into the liver, then blocked to stay there) and in Dec scans showed two lesions doubled in size!  Now I'm seeing another onc who we hope will know which chemo will work.

    Ruth

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  • kenzie57
    kenzie57 Member Posts: 207
    edited January 2010

    Hi Barb:

     I have been on Ixempra since Feb or 2009.  After my first full dose, I got my onc to reduce my dose.  The first dose was the worse.  It's still bad, but with lots of pain pills I get through it.  My last scans show little improvement in my lung mets and other cancer showing up in my bones.  I started rads last week for a spot in my spine.  I am back to a full dose of Ixempra on Monday.  My onc wants to increase my dose back to the full dose because he said my scans showed improvement when I was on full throttle.  Even though I find this the most brutal chemo ever, my Onc tells me that the other women in his office have very few side effects.  If you do start this, maybe you won't get the side effects.  For me they are lots of pain and nausea.  The pain goes all the way through my legs up through my head for about 7-10 days.  This thread helped me a great deal in getting through this treatment.  If you get put on it, just take the time to read through here and I think it will help you also....

    Best of luck,

    Linda

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  • Bmarie
    Bmarie Member Posts: 129
    edited February 2010

    Ok, so I started Ixempra last Monday. Today is day 6. So far, little shooting painsin different parts of my body, but not enough to bother me too much. My question is....how long did it take to notice a difference or to know that it's working. I am soooo impatient, having skin mets and lymphedema..My shoulder and arm hurt like h---!..I am in that kind of pain! Have to take 2 Oxycodone or Hydrocodone to help. Pain just takes over!!!!!!!!!!

    Please tell me that I will get some relief soon!

    ~Barb in AZ

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  • tooyoungtohavebc
    tooyoungtohavebc Member Posts: 779
    edited February 2010

    Bumping for those just starting ixempra.

    Marie hope your pain has subsided. I also had a lot of pain from ixempra. lower dosage of it did help but it never went away.

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  • tooyoungtohavebc
    tooyoungtohavebc Member Posts: 779
    edited March 2010

    bumping again

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  • Bmarie
    Bmarie Member Posts: 129
    edited March 2010

    Well, been thru 2 infusions of Ixempra (once every 3 wks) and all and all, I am doing pretty well. RELIEF!!!! :)! Tomorrow will be 5 weeks since I began and my skin is looking much better...slowly, but does look better! I will have a scan at the end of the month to see how my liver is. I have lots of energy and feel soooo much better than I did 5 weeks ago. I didn't have the little shooting pains after the 2nd infusion....just a little loss of energy. I just made up my mind to take it really easy for the first week or so. Soooooo, for me, Ixempra has been an Ok drug. I was so scared to start it, but as of now, I am glad I did.

    ~Barb

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited April 2010

    bumping thread for X3sMom :>

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