done w/ A/C- I start ABRAXANE any info on side effects

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MarifromPA
MarifromPA Member Posts: 12
done w/ A/C- I start ABRAXANE any info on side effects

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  • MarifromPA
    MarifromPA Member Posts: 12
    edited September 2014

    Just did 4 bi weekly A/C chemos, now I start ABRAXANE ( can't take taxol - premed allergy and bad reactions) any info on side effects etc ?

    It's not usually first line but due to sensitivities I am starting on that 125mg/mm2  weekly for 3 weeks on then one off ..... heard good and bad ... any info appreciated ESPECIALLY what PRE MEDS worked best ... amt of steroid 4mg or 8 mg ...... Emend or ALoxi??? or??/ any help THANK YOU  MQ

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    For me, Emend works 100% and I need nothing else during the week.  I really don't know enough about the steroids to comment.

    Side effects for me on my second time through Abraxane:  fatigue over time, bearable neuropathy in fingertips and toes (but not enough that I can't play the piano), purpling toenails.  I guess that's about it.: 

    Side effects for me on my first time through Abraxane:  strange shooting pains through legs for a couple of weeks, taste buds changed so most things tasted like sawdust (not enough that I lost any weight though), about the same amount of neuropathy and purple toenails, fatigue.  

    The second time through was definitely easier.  

    I found it bearable, especially if it works for you. 

  • MarifromPA
    MarifromPA Member Posts: 12
    edited September 2014

    Thank you  for letting me know, I feel better when I can kind of know what to expect and well it's a lot less scary for me , so THANK YOU for sharing :)  ... can I ask if you are on just Abraxane or on it plus something else?? and are you getting the 125mg weekly for three  weeks on  and one  week off or are you getting it once every three weeks ???  and did you use the ice mittons and booties to avoid neuropathy or do you think that wont work??  how about B6/// B12 ??  Do you think they help avoid neuropathy ?? 

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    Dear Mari,

    I forgot to mention hair loss, that happened both times.  It's funny how it was SO traumatic the first time, then ho-hum, been through this before, the second time.  

    The first Abraxane time was with Avastin.  The second Abraxane time was just Abraxane.

    Both times, it was 3 weeks on and one week off.  

    I didn't do anything with the B vitamins, mainly because I didn't think of it nor did my onc bring it up.  Sorry, I'm no help with that, except to say that my B levels must have been fine because they're testing every week before chemo infusion.  Oh, by the way, my blood levels were always ok, not even marginal, so I kind of got in the habit of just assuming all that was fine.  

    Now, the neuropathy prevention.  I didn't use anything to prevent it, and looking back, I would say that was the right decision for me.  I certainly didn't have even moderate neuropathy, and it seemed to completely disappear after chemo (not immediately but over time).  I can't say whether the icing works or not, but it doesn't sound all that pleasant to sit there with your hands and feet freezing.  But if you had severe neuropathy, it would probably be worth it.  

    In general, I would say that I am in the group of women who don't have much in the way of side effects which is lucky for me.  Even the needle sticks aren't a problem.  Do you have a port?

  • MarifromPA
    MarifromPA Member Posts: 12
    edited September 2014

    YEs I have a port :) I hope that makes it easier ... I also am TERRIFIED of neuropathy ... My Gramma had it and she was miserable ( hers didn't go away but this has been years ) ... I just remember her pain ..... constant .... how long did it take to get yourself back to 100 % ??? and how was the nausea... on the A/C I was miserable for 5 days even with Aloxi and Emend  and Decadron ... sometimes couldnt even drink for the first 4 days ... I pray this is better less awful ... I also  wax told it could cause irregular heartbeat etc etc ... nothing like that for you ?? I Hope not ..

    OH I also see you had the ovary removal ... I was asking for this since I felt it would help me have more years clear ... was it a bad or painful operation or someone said laproscopic ??

  • oddducklady
    oddducklady Member Posts: 58
    edited September 2014

    Mari- My husband has BC-he had his last of 9 weekly Abraxane just Sept 1 after completing AC. (He started on TAC in March but that was switched after the first infusion d/t drop in WBC's).  He had problems with low WBC's with Abraxane which is not usual and used Neupogen successfully to keep his counts up. He did not receive any antiemetics nor any steroids prior to any of the infusions and he had no nausea or insomnia. He did have changes in taste, and fatigue. He begin to develop mild neuropathy in his fingers and feet after the 5th dose. No pain-just mild tingling and numbness.  I gave him B6 but don't think it made much difference.  Already the neuropathy is starting to fade and it is getting better every day.  Fatigue is getting better too, but we are getting ready to start radiation and I imagine it will return.  For him (and me) having the MO use Abraxane was wonderful. Hope this is the way it is for you. Good luck! Oh, and let me add by the time he started Abraxane he had hair growing in-they said he would lose it but he did not.

  • Wilsie2
    Wilsie2 Member Posts: 441
    edited September 2014

    I chose to skip the steriods, they made me jump out of my skin.  I guess the worst se was losing my hair and being tired all the time .  Wilsie

  • linzer
    linzer Member Posts: 164
    edited September 2014

    I would try the abraxane without the anti-nausea since most don't have issues with nausea on taxol or related chemos. The ant-nausea side effects (headache, constipation etc) are probably worse. I was on Taxol and experienced heartburn (needed to use Prilosec) and did not get neuropathy, but did use a B complex and L-glutamine religiously. You may find that your nose dries out too. I used a bit of a natural Aquaphor like jelly that kept my nose moist inside. Good luck!

  • linzer
    linzer Member Posts: 164
    edited September 2014

    As for the steroids, you probably can wean off of them quickly, especially since Abraxane has a much lower incidence of infusion reaction. Ask your MO about that. I started on a higher dose and dropped a tablet every week until I was off them by about week 4. 

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    Dear Mari--

    I'm glad you have a port.  I've had a port since day one on chemo which makes the whole infusion thing easy.  

    I'm sorry about your grandmother's neuropathy and now I understand why you're so terrified of that particular side effect.  Does that mean that you'll have the same reaction?  I don't know what the odds are of mild neuropathy versus a severe case, but it's worth finding out, I would think.  My neuropathy was so mild that it was only on occasion that I even noticed it and I would not have said it was painful.  I would say I am fully recovered now (last chemo was end of August).  

    I never did AC, so I can't compare the nausea from those drugs to Abraxane.  There were a couple of infusions where they couldn't use Emend and I did get sick, so I'm fairly sure that it was Emend that kept my nausea at bay.  I'm sorry that they didn't find the right drugs for you.  Have you ever tried Sancuso?  That also worked for me.  It's a patch.  Expensive, I understand.  

    How could I forget the thing that probably bothered me the most--the runny nose.  I never found any way to stop that, so I just carried around a ton of kleenex.  It doesn't hurt or anything, but is just an irritation and kind of embarrassing, seeming like a kid who always has a snotty nose.  That's completely gone now.  

    Actually, now that it's 9 weeks since the last Abraxane, I would say I feel like a different, younger, more healthy person.  Not that I don't love Abraxane since it made me NED, I can love life without it too. 

  • M360
    M360 Member Posts: 356
    edited September 2014

    Reading all of the above post I was wondering why you were given steriods with Abraxane?  My Oncologist never mentioned anything of the sort with me.  I have neuropathy from other medications and have been on Lyrica for such so I'm sure it will keep any new symptoms in check.  I'm praying that this will work for me, I spent the last year on Xeloda and the Doxil and it did nothing for me my tumors tripled, have new ones in liver and kidneys, now all of my spine is with cancer along with both femurs.  I had to go to using oxygen at all times for my left lung has dropped to about 30% of functioning.  I'm doing three weeks on and one week off, for as long as we see any results after three months.  I know I will not be cured or NED, but I would like to just get  stabilized .

  • MarifromPA
    MarifromPA Member Posts: 12
    edited September 2014

    Thank you for sharing info :) it makes it easier for me to know that this med wasn't too bad on most folks :):)  ... I hate switching medications.... I ALWAYS react to things and I am hoping this time is a charm and I don't :)....

  • cp418
    cp418 Member Posts: 7,079
    edited September 2014

    http://www.drugs.com/pro/taxol.html

    http://www.drugs.com/pro/abraxane.html

    It's been a while since I had researched Taxol versus Abraxane.  However, my understanding is that they are a VERY similar chemo drug  (paclitaxel) - the difference is in the carrier solution.  Abraxane uses an albumin carrier and Taxol uses a castor oil/alcohol solution.   If I recall Smile Taxol caused more side effect problems due to this carrier where as albumin causes less issues in patients.  I remember asking my Oncologist if I could receive Abraxane over Taxol  for this reason.  However, it was only approved for metastatic patients or others special patients.  Also, in regards to neuropathy - do some GOOGLE searches because it has been linked to a specific group of patients with a certain genetic profile.  So maybe 25% of patients might experience neuropathy who have this gene combo and other patients will be fine.  Do some searches to confirm but these are some facts I recalled from previously reading - but can't rely on memory.

  • MarifromPA
    MarifromPA Member Posts: 12
    edited September 2014

    THANK YOU GOOGLING LIKE MAD :) (

     RE:: linked to a specific group of patients with a certain genetic profile. So maybe 25% of patients might experience neuropathy)  THANK YOU for telling me :) really appreciate any and ALL info :):)

  • M360
    M360 Member Posts: 356
    edited October 2014

    I'm doing a happy dance for the first time in over a year and a half, with just two treatments of Abraxane and my cancer markers have come down 100points.  My lungs are just aching these days with a lot of pain, plus liver tests are all over the top with so much cancer in liver, but this is the first positive test result in such a long time.  

    Hope this is helping everyone else who is taking such.

  • MarifromPA
    MarifromPA Member Posts: 12
    edited October 2014

    What tests do I ask for for cancer markers??/ Basically they just keep to some template kind of program and I never really "know" much unless I really ask and ask ... also my B-12 test in my blood was like over 3000 wayyy too high and someone told me that means LEukemia ??? like the A/C chemo could have given me the risk really high risk of leukemia??

  • M360
    M360 Member Posts: 356
    edited October 2014

    Mari,  Many times tumor markers doesn't mean much, but will tell when Cancer is growing I had normal cancer markers for four years while having cancer as it started to metastasized then my markers went up and up.  While taking Xeloda and Doxil my markers would double or triple every month.  I has blood test for markers CA15, CA27-29, CA125 and Circulating Tumor Cells.  After the past 18months of markers going up, after 2 treatments of Abraxane and the became lower.  Which shows that the medicine is working, how well it's working I won't know until my next PET Scan but for me seeing my markers starting to finally become lower is a breath of fresh air.  

    I don't know about leukemia with A/C are you taking Cytoxan along with Adriamycin?  

  • MarifromPA
    MarifromPA Member Posts: 12
    edited October 2014

    OK follow up info :):) Just had second week of ABRAXANE and oh my LORD ... its like heaven compared to A/C .....  No  bad side effects so far .... ( its early but man I am hopeful)  just a few twinges of things .... like a tightness near the throat ..swallowing but not bad....or hot flashes ..but those are saving money on the cost of heating the house, and some twinges of pain here and there....I am keeping my  feet cold and hands cold just in case( for the neuropathy) ..and I am feeling  pretty ok so far...... 

    WEEK 1  treatment day I had some issues with feeling loopy and chalked it up to the ativan 0.5 i took ( even thought I had been taking 1mg with treatments ... this was less but well things happen I assumed) ....... then

     WEEK 2  treatment day we figured out what caused the loopy  feeling ... because this time we skipped the ativan until we saw what was what ... well the minute the pepcid iv went in it was like  I had had 5 shots of tequila  in a row ...I was non compliant  fuzzy loopy confused and couldnt add 2+2 or 10+10 and it was from  the  PEPCID iv push !!!! A lot of folks dont know but some people ( me included) get averse reactions from PEPCID IV .. I didnt think I needed  all the premeds with this , but to be safe the docs gave me IV push pepcid, 4mg decadron and emend and zofran 12mg ... and man oh man it was like  well.. I felt like what i remember drunk felt like years ago..... loopy confused etcetc etc .. and we know it was the PEPCID because THAT and saline were all that were in when the party started lolol.....  so I look up pepcid insert online  and LOW and behold there it is ..... confusion etc etc etc .....  called the company and yes it happens ..MY NIRSES AND DOCS said oh we never heard of this ... and then another BELL went off in my head

    SO my question is now about NEUPOGEN ..... since JULY everytime I got a neupogen shot I got fast speedy heart rates sweaty and short of breath... I would complain at the cancer center over and over but the nurses and doc swere always saying "oh I never heard of that " so today i called AMGEN who makes the drug and not only have THEY heard of it its in the INSERT warnings..... anyone else get the speedy from neupogen ??

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