Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Ixempra-My experience

1…789101113»

Comments

  • ana
    ana Member Posts: 3
    edited May 2010

    Hi everybody!  I am new for this forum, stage IV for 2 years, was originally diagnosed in 2005, mets in my bones

    I had Taxol/Avastin, Gemzar, Ixempra, Ixempra with Xeloda and now on Navebeline, and stil my cancer not controlled.

    4 weeks ago I developed feet weakness, foot drop, very funny walk, I can't walk, I can't work.

    I was wondering if anyone had same side effects

    I also have compression fracture in my spine and now I am not sure if it is my back or medicine.  Neurosx look at my MRI and said that I need sx, but I am thinking that it may be side effect of medicine.

    Love you everybody, ANA

  • SeanE
    SeanE Member Posts: 16
    edited July 2010

    tooyoung - Thank you so much for taking the time to record your experiences with Ixempra!  This is truly an invaluable resource for me and my wife, who is starting Ixempra as a single agent in about a month as "mop-up" chemo after her radiation (she has IBC Stage IV, mets to bone - humerus and skull).

    Chainsawz - thank you for referring me to this thread!

    Sincerely,

    Sean E.

  • tooyoungtohavebc
    tooyoungtohavebc Member Posts: 65
    edited July 2010

    Hi Sean,

    Hoping the Ixempra kicks the crap outta your wife's cancer! 

  • Lckygrl13
    Lckygrl13 Member Posts: 2
    edited August 2010

    tooyoungtohavebc,

    I am so very inspired by your story.  I do hope you are feeling good now.

    My mom has had stage IV breast ca mets to the bones, brain, parada gland,

    and now the liver.  She was diagnosed with stage 4 breast ca mets to the bone in

    May 2006. She started ixempra today in the hospital where I brought her

    6 days ago when she felt she couldnt get up anymore.  I hope she has a positive

    response although very worried about her liver condition.  Brubilin(sp) is 11 down from 13

    and she is distended. I do have more hope now after reading your blog...

  • SeanE
    SeanE Member Posts: 16
    edited August 2010

    Mymommy - prayers for your mom.  Where is she getting treated?

    Tooyoung - we take the plunge this Friday - 6 Ixempra treatments, once every 3 weeks, as a "mop-up" for any of those suckers that might be left.  I will be consulting your journal more closely - thanks!

  • KasSha
    KasSha Member Posts: 7
    edited September 2010

    I just started Ixempra last week....7 days ago. The first day after I really thought this was going to be very doable...maybe that was because of the steroids. It has been downhill since then. Day 2 started feeling bad. By day 3 I had pain across my back and in my joints..same for day 4. Have trouble sleeping even tho very fatigued...so aggravating. I have also had a bad headache with this drug. Nothing tastes good except ice cream which I have been eating a lot of! ive lost 5 pounds in 7 days. Ive missed 6 days of work so far and I just cant afford to do that. Feeling very stressed about it all. I meet with my onc sep 14 right before next infusion to see if ...hoping he will make some adjustments. Anyone know when taste buds get back to normal?

    KasSha

  • Lckygrl13
    Lckygrl13 Member Posts: 2
    edited September 2010

    To Sean...My mommy was treated with Dr Joseph and Dr Chatham..the last dose of chemo that basically in my opinion killed her was at Henry Mayo.  She passed Friday August 13, I am still devastated.  My stepdad her husband of 30 years took his own life 2 days later.  Its been tough.  I hope you do okay..positive thoughts are with you.  And make sure you ask questions of your oncologists who tend to keep the bad stuff to themselves...in our case.

  • simba
    simba Member Posts: 3
    edited September 2010

    Hi,

    A supplement called Glutamine was recommended by my onc for the hand and foot pain while I was on Taxol. I would imagine it would also work with Ixempra. You can get it at GNC. It comes in powder or capsules. I took one capsule in AM and one in PM with food. It really helped and when I missed a dose I could really feel it.

    I don't understand why any one should have to put up with nausea. Ask to get Emend in your pre med IV and then two pills for each of the next two days. The stuff is a God send.

    Thanks for the SE info. Love, Simba

  • dfleaman
    dfleaman Member Posts: 4
    edited September 2010

    kassha, I have been on ixempra since May.  I am doing it every week.  It has been the worst chemo I have done.  I never seem to recover for the next dose.  Started out with 30mg went to 27mg now I am on 25mgs.  I have lost weight no appetite.  I am on pain meds never had to take pain meds with other chemo.  I do not due well on pain meds always feel sick nausea.  I also had headaches when I started. I had a brain mri just in case.  I was clear.  Dr. took me off aloxi (nausea meds IV) and started on katrol.  The headaches stopped completely. Dr. believes this drug will put me in remission.  I have to wait until Nov for a pet scan.  I am still working Thrusday and Friday a tough.  I usally go home on Fridays.  I hope dr lowers your dose and you feel better.

    Take Care Donna

  • chainsawz
    chainsawz Member Posts: 113
    edited August 2013
  • sranjanm2002
    sranjanm2002 Member Posts: 1
    edited December 2011

    Bump

  • MaggiBr
    MaggiBr Member Posts: 1
    edited April 2012

    I am triple negative and cancer has recurred in both breasts and chest wall.  Have had my first infusion of ixempra. A few mouth sores, fatigue, and lots of bone pain the 1st week.  My oncology nurse suggested benedryl to sleep and help with some side effects.

    Am supposed to have another tomorrow and start xeloda.  The ixempra has faded some of the redness on my chest and breasts.  I have heard horror stories about xeloda, and am not sure I want to take it. 

    I shaved my head because doc said hair would fall out with ixempra.  So far, it is growing back in - it's been 3 weeks and I thought it would be gone.  :)  I had AD-T as first round and it fell out immediately that time.

    Any  input on taking zeloda with ixempra appreciated!

  • rse22
    rse22 Member Posts: 1
    edited May 2012

    I've never used a forum before so I'm not exactly sure what the proper etiquette is but I've been trying to find out more information about Ixempra from people who have experienced it first hand. My mom is 54 and has stage 4 metastatic breast cancer to the bones, liver, and brain. The doctor is about to start her on Ixempra this upcoming week. I was trying to find out peoples quality of life while taking it. I'm so thankful I've stumbled across this forum. She will be taking the Ixempra as a monotherapy because of her liver involvement. Any information would be wonderful! thank you.

  • moderators
    moderators Posts: 8,633
    edited May 2012

    rse22, welcome to BCO. Although this thread hasn't been very active recently, this wonderful community is a great source of first-hand information for you. The main Breastcancer.org site lists the side effects that can occur with Ixempra, and what those potential side effects can mean.

    The Mods

  • rada
    rada Member Posts: 2
    edited January 2013

    Подскажите пожалуйста. что изменилось после химиотерапии этим лекарством в ваших исследованиях на КТ или МРТ или может других исследованиях.Насколько эффективно действовал препаратЯ решила написать по русски . так как может переводчик гугл лучше переведет его на английский

  • rada
    rada Member Posts: 2
    edited January 2013

    Здравствуйте,мне бы хотелось узнать ,как изменились показания исследований после применения химией этого лекарства, насколько оно эффективно пищу по русски .так как думаю перевод с гугла так будет лучшим

  • AdrienneK
    AdrienneK Member Posts: 2
    edited January 2013

    rada

    I'm so sorry your message is in a language most of us do not understand or

    read.  Adriennek

  • Dayzeroze
    Dayzeroze Member Posts: 10
    edited January 2017

    I just had my first treatment. I have been looking for a thread like this for a week now. Thank yo

  • AnnieIam
    AnnieIam Member Posts: 10
    edited February 2017

    I should be starting this chemo by next week Monday/Tuesday and must be honest, I'm a bit scared. Why are so few on it? Side effects perhaps too severe?

  • Dayzeroze
    Dayzeroze Member Posts: 10
    edited February 2017

    I'm so scared with so few on this.

  • Dayzeroze
    Dayzeroze Member Posts: 10
    edited February 2017

    I just would like some up to date info on personal experiences. After My first infusion January 26 2017. That day and the week after I was very shaky from the pre meds ( steroid, Prilosec, Benadryl) I have major bone pain like stabbing pains, very bad heartburn, tired, bad taste in mouth, mouth felt burnt!!! Im on day 14 Out from first infusion and still have bone pain. Nothing tastes right. Very thirsty. I still have my hair. Not sure if I will loose it or not. I will try and update here so there is new info for anyone that may be starting Ixempra 💚💖

  • momallthetime
    momallthetime Member Posts: 1,375
    edited February 2017

    Dayzeroze so glad someone decided to write on Ixempra - my daughter has been on it for 3 mos., it's been a bit difficult, but the last few weeks it brought down her blood counts very much, so she had to skip it, so she is not happy about that, actually doc is reevaluating. I just read the posts above, Glutamine is sounding pretty good, maybe you give it a try. I will certainly tell her about it.

    I commented someplace else for you, what about taking Herceptin along, it showed Ixempra with Herceptin as being a good match. She is on it. Thought it's worth a mention. Feel better.

  • stagefree
    stagefree Member Posts: 360
    edited July 2017

    bump

  • Dayzeroze
    Dayzeroze Member Posts: 10
    edited July 2017

    I am switching from Ixempra to gemzar starting on the 31st of July. All though side effects of Ixempra for me have been horrid. It worked it got rid of my ascites shrunk some cancer and stabilized some almost totally cleaned up my liver. I have had spine progression but I can live with that as long as we are still working towards getting that stable as well but I can't live without a liver.

    Side effect from Ixempra

    Hair loss at first

    Nauseousness

    Weight gain

    Bad taste in mouth

    Severe body pain

    Migraines

    Severe tiredness and sleepless night.

    And the deciding factor in switching chemo is the

    neuropathy in my feet.

    Would I do this Chemo again? You bet! Life and being here for my children out weighs the side effects

  • thrivingmama
    thrivingmama Member Posts: 133
    edited December 2019

    thanks to all who have contributed to this thread. curious if there is anyone currently on this treatment? we are considering it for liver mets

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.