Taxol Chemotherapy

Options
12728303233

Comments

  • lostinmo
    lostinmo Member Posts: 922
    edited May 2012

    Thanks for the input on taste.  Sweets are one thing that does still taste good.  Even though I had almost stopped eating any before this.  Oh well, donuts are my friend right now.  I do find myself adding salt where I never did before also.

    I think I spoke too soon, having pain in my hips and legs something awful as of the last 24 hrs.  I just want to cry, but I do have my big girl panties on so I won't.

    Januaryice- you did you tx a day before me, please let me know when the pain stops.  I may have to break down and call the Dr if it doesn't stop soon. And I HATE taking any kind of pills, I didn't even take any pain med after I had my c-section.

    Nancy-yippee for being done! I can't wait.  I think I'll have a big pizza party...when I can taste it of course. lol

    Andi-enjoy the inside, I avoid the outside here right now. Hot, humid, and buggy. Yuck 

  • NancyHB
    NancyHB Member Posts: 1,512
    edited May 2012

    lost - if you're in pain, don't wait too long to call your dr.  I have struggled with severe bone and joint pain from the first Taxol.  My MO thinks is a combination of the dose-dense nature of my treatments coupled with the Neulasta shot after each one.  I spend a few days each cycle taking pain meds (sparingly); my lower body hurts like crazy, the joints just don't work, I have severe weakness, and my whole body feels like it's going to collapse.  My MO was a little hesitant at first to give me meds (no one warned me of the pain SE and I was so suprised!) but relented, and they've been a godsend. 

    It's okay to take those big girl panties off sometimes and let yourself feel whatever it is you're feeling.  This is tough stuff; we're entitled to feel like crap whenever it happens.  

  • lostinmo
    lostinmo Member Posts: 922
    edited May 2012

    Nancy, My MO did warn me that this one caused more pain I just didn't think it would be this bad. You described it to a tee. I may give in and call when they open. I just get overwhelmed with all the stupid little pills I have to take. Two months ago I never took anything other than maybe 2 alieve for cramps once a month. Now it's 5 different pills a day. But the end is near!

  • Januaryice
    Januaryice Member Posts: 120
    edited May 2012

    Lostinmo- tx was last Thursday and I still had pains in feet right up to hips yesterday (Tues). It was a little less intense so I'm hoping each day will get better. I'm scared that this will last right up until my next tx!!! I also have tried not to take anything stronger than Tylenol. The other meds constipate me and that has its own issues ( hemorrhoids).

    This journey is a real bitch!! The only thing good about the taxol is at least I have no nausea but with the AC I knew that by my 4th day the worst was over. Taxol I have no idea how long this will last. They're both are so evil and beat your body down. It just better be killing all the cancer also!!!!

    Always a thanks to my dear sisters that post and help to keep us from thinking it's only our own bodies that are rebelling.

    The support has helped me get though this terrible time in my life.

    Thanks and best wises to all!!

  • lostinmo
    lostinmo Member Posts: 922
    edited May 2012

    Januaryice-I'm glad your starting to feel better! my pain is letting up some now (Thurs).  I woke up with my lower back still hurting, but that may have been partly because my cat decided he needed the whole bed. lol  I struggled through this week, but when I go back for my next tx, I'm going to grill the Dr. about it.  Something has to help make it bearable. 

    I feel like the little enginge that could.."I think I can, I think I can." 

  • cmassa44
    cmassa44 Member Posts: 9
    edited May 2012

    I had my first treatment of Taxol, last Friday. We are going to do my treatment every week in hopes that Taxol works as wellas AC and Doxel. So far, I have some tingeling in my feet, and some body pain from the Hip down; But there are times my fingures will stiff up on me and I had noticed  twice my toes have done the same. I am a bit fatgue; but I also accoiciate my fatguie, with My 15 treatments of radiation to the whole brain; (treatments end  two weeks ago.) I am hoping my OC, is right about doing Taxol every week will be easier on my system, then if we did every three weeks. If what I have been going through so far with taxol; is what I am going to have to deal with...then I can take it and move on with my life.

  • Andimom03
    Andimom03 Member Posts: 162
    edited May 2012

    My days on Taxol were hard and even though overall easier than AC, I never had the inbetween upswing like I did with AC. My leg and joint pain lasted for 4-5 days, starting on day 3, and then I ached the rest of the time. Movement did help. I am still dealing with some toe neuropathy and hope that fades.  It hurts! My leg weakness was weird. Never felt anything like it. I had Taxol every 2 weeks, like the AC. I have heard that the weekly is easier for many!

    Hang in there, everyone. Food will taste normal again, eventually. Nails grow out, hair comes back (mine is fuzzy and slow in coming, but it's there!). I am finding myself more emotional now that I have time to process it all and not just get through it.

    Here's to an easy SE day.

    Andi 

  • Januaryice
    Januaryice Member Posts: 120
    edited June 2012

    Lostinmo- please let me know what feedback you get from your ONC and I'll do the same. Our reactions seemed very similar. Lucky us!!!!! Yes, I also am still feeling much better but have some lingering pains but I thought maybe it was just old age;)))



    Andi - thanks for the info. That's the only thing that makes us all "march" on is that this ordeal will be over at some point and we can celebrate our lives .

  • lostinmo
    lostinmo Member Posts: 922
    edited June 2012

    Januaryice-glad your feeling better.  Today is much better on me, thank goodness! I'll let you know what I find out from my MO.  Hopefully I won't forget to ask.  I refuse to admit I'm getting old. 

  • scaredycatwoman
    scaredycatwoman Member Posts: 77
    edited June 2012

    Hi  I have heard that icing the feet and hands during taxol helps with nail changes but does it also help with neuropathy??  Does anyone know if the icing also needs to be done during DD AC treatments X4?  Thanks

    any other tips on what to do for DD AC X4 --i start in 2 days...Thanks

  • Momof2inME
    Momof2inME Member Posts: 683
    edited June 2012

    I just finished taxol last week. I iced my fingers and toes. I had no nail problems at all and no neuropathy. I think it works and would do it again. Good luck!!

  • scaredycatwoman
    scaredycatwoman Member Posts: 77
    edited June 2012

    hi I am glad you had such success with the icing of finders and toes   May I ask how you iced tyhem exactly??  Thanks

  • chapter4
    chapter4 Member Posts: 155
    edited June 2012

    Hi Ladies



    I just found your thread. I just finished 4 AC treatments and get my first taxol June 6. I had already planned a vacation to cape cod two days after treatment,....just relaxing on the beach under an umbrella of course...am I making a mistake?



    Is the joint pain manageable? Do you have to be on steroids with taxol? My eye lashes have thinned out, will I lose them now?



    AC sucked....this is better right?

  • Januaryice
    Januaryice Member Posts: 120
    edited June 2012

    Chapter4 - are you DD or are you going each week?

  • lostinmo
    lostinmo Member Posts: 922
    edited June 2012

    Chapter4-It does seem to make a big difference if your doing Taxol weekly or DD. I do have to still do the steroids on the DD, even though I tried to get out of it. Everyone is different, so it might not be as bad for you.  For me Taxol sucks and I would pick the A/C over it. But I didn't have very many issues with the A/C.

    I might try to ice this next round..wonder if my DH would hold my hands in the ice while I sleep..

    Hope everyone is having a good weekend. 

  • chapter4
    chapter4 Member Posts: 155
    edited June 2012

    Januaryice....I'm on a DD schedule....first treatment on Wednesday.

  • cmassa44
    cmassa44 Member Posts: 9
    edited June 2012

    week two white blood cell count went down,and blood platelets. My OC. Nurse said, I  could have my taxol, but If it goes down any more I might have to take a week break.  Doing great on Taxol... Just a Little muscel pain, but not enough to have to have any pain meds. A little numness in the toes and a little fatgue; but all in all Doing well on the weekly Taxol. I just have to get my white blood cell count up... I Prob. going to have to go on Nuelasta to help,white blood cells count.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited June 2012

    cmassa44 -  Just finished Taxol and never needed Neulasta or transfusion.  When my blood platelets went way low, I started eating spinach and greens.  They went right back up.    I ate alot of beans to get my WBC up and it worked.

    The lowest it got was 2.8 for one week, then after all the beans, it went up to 4.0.    Good luck to you!!!

    scaredycatw - I, too, iced my hands and feet all through Taxol and never had any nail problems or neuropathy.  My chemo nurses are now telling others to do the same as they saw the positive results I had.  To me it is so worth it!!

  • babysammy
    babysammy Member Posts: 74
    edited June 2012

    Glad I found this.  One more FEC then on o DD taxol.  The pain doesnt sound like fun.  I too am curious about the ice and nails.  How long do you keep them in ice?  That sounds painful to me.

    I will be lurkingSmile

  • Rose_d
    Rose_d Member Posts: 144
    edited June 2012

    Hi all, I finished my A/C last week and will start my DD Taxol next week. I think the cumulative fatigue is setting in, I haven't bounced back yet this time, although last week's treatment was Tues instead of Mon because of the holiday. There is a part of my thats wondering if it's a bit of depression too (never had that before). I just feel like laying in bed! I completely overslept getting my kids off to school this morning. Oops!



    I'm really hoping the taxol is easier. I'm very worried about the steroids, have to take 5 10 hours before and 5 4 hours before. Ugh.



    Rose

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    For those of you wondering about icing, search this thread using "nails" and you'll find out how to do it.

    As for neuropathy, you can search that word too, in this thread. The icing does NOT keep you protected from neuropathy; for that you need to take particular supplements. All info has been discussed already on this thread, but should be easy to find.

    Claire in AZ

    finished Taxol 3/21 finished rads 5/29!

  • Januaryice
    Januaryice Member Posts: 120
    edited June 2012

    Chapter4- it seems as if anyone that is doing the DD is also the ones that are having really a tough number of days after the treatment. I only had one so far and that tx was on Thursday and by Sunday the pain on my feet to my hips was so bad I could hardly walk. Now remember everyone is different and we don't all react in the same manner. Check out thread - March 2012 chemo. There was a discussion about why some had problems with Taxol and some did not seem to mind it.

  • Jennt28
    Jennt28 Member Posts: 2,021
    edited June 2012

    I was a fit healthy active 46yr old in January before I started chemo. FEC sucked but left me with no permanent problems. The Taxol was not fun for me at all and I found it harder than FEC. With the FEC at least the SEs were temporary, while they are potentially permanent from Taxol.



    NAILS - I iced my hands and feet during each infusion. My centre had gloves and "socks" that I could use. They usually only use them for people doing Taxotere but they were OK with me using them. My nails are OK. They still feel sensitive and my left big toenail has some weird black spots so I think I might lose that one...



    PERIPHERAL NEUROPATHY - I took 30g of L-Glutamine powder each day (15g day and night in water), Acetyl L-Carnitine tablets, and vit B to try and prevent the peripheral neuropathy. This seemed to work because the numbness and tingling in my fingers was mild and went away a couple of days before the next weekly infusion. Problem is that my last infusion was 1.5 weeks ago and the tingling and numbness has NOT yet gone away after that one. I'm still taking the supplements but am beginning to suspect that this is not going away and this may be the new normal.



    CATARACTS - PLEASE be very careful (as much as possible) with the steroid amounts. My MO prescribed IV dexmethasone (8mg) prior to each infusion. It wasn't until infusion number 7 that the nurse commented about me "still getting this much" and I discovered that most people were only getting a reduced dose or none after the first 3 weeks. I asked my MO and she downed the dose to 4mg for the last weeks.



    Last Friday I took myself off to get my eyes tested because they were "weird" and it turns out that I have developed cataracts in both eyes at the age of 47yrs. They are a listed SE of dexmethasone (corticosteroids - up to 10% of people will develop them)... Once you have them they don't go away and they will progress so I will need surgery to replace the lens' in both of my eyes! At the moment everything is just mildly foggy like my glasses just need a bit of a clean, but no-one can tell me how fast they will progress since they are drug caused :-(



    PNEUMONITIS - I got a bad cold and cough at about week 7 (was still working full time). It just would not go away and I got more and more tired and breathless and finally at week 10 I started to feel so bad I could no longer work. After testing that week it turned out that my cold had turned into serious pneumonitis. This is very rare side-effect of Taxol that seems to be more common in those getting Taxol and Herceptin at the same time. The Taxol was stopped after infusion 11 (that I had before the test result came in) and I've now been off work for 2.5weeks and on medication to try and clear my lungs. I may end up with permanent lung damage so am being rescanned in just over a week to see. The treatment to clear it is prednisone which is another steroid that can cause cataracts but I have no choice but to take it for a few weeks.



    So, Taxol for me turned out to be a mess. I am no longer a fit healthy active person. I get breathless just walking up our internal stairs at home. I find holding a conversation makes me breathless. I drop or spill things because of the numb fingers. I can't see very well in the dark and am holding my husbands hand if we are walking in the dark, especially on a slope. My husband has been doing any night driving. It's winter here so naturally a bit darker during the day and I now have the lights all turned on during the day so I can see clearer.



    Having said all that - chemo was not really a choice for me. I would have been stupid to turn it down with the type of cancer (triple positive) I had... As everyone says, you can DO this. You may be lucky and come out with no permanent problems, but the reality is that you may not come out the same.



    Jenn


    PS : didn't mention bone/muscle pain. In the scheme of things it wasn't too bad. I took a couple of Panadeine Forte a few times...


  • septembersong
    septembersong Member Posts: 287
    edited June 2012

    Jennt28,

    I feel for you--I have permanent neuropathy from my 12 Taxol infusions. I began to feel it after the second treatment, and was optimistic that it would be temporary, as it is for most people. It's been 4 years since my diagnosis, and it's no better--depending on how active I am, it sometimes feels more intense. My oncologist brushed off my concerns during treatment. I tried acupuncture (12 weekly sessions) when treatmen ended, with no improvement. 

    I hope you are like most women and find that the symptoms diminish. I've been told that it can take up to two years to resolve, so don't assume that it's permanent yet!

    Taxol has given you a rough go. I'm sorry. You have a great attidude, though, and that will help you so much moving forward. Best of luck and good health to you!

  • chapter4
    chapter4 Member Posts: 155
    edited June 2012

    Januaryice.....thanks, I will check out that thread!

  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited June 2012

    Jenn - Sorry Taxol hit you so hard.  For me, I thought I did very well but my the last 2 Txs really did a number on my WBCs.  What type of symptoms did you notice with your eyes?  I feel like mine definitely degraded during Taxol.  There was one point when my WBCs were next to nothing I'd have a white squiggly streak flash for a second.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    For a bit of a happy story about taxol...so the newbies aren't scared off:

    I had no problems other than low WBC, which delayed tx by one week.  A series of neupogen shots helped dramatically with that problem.  

    My nausea, smell issues, and loss of appetite that I had with AC went away. I hiked after every weekly Taxol.  I took the acetyl carnitine (make sure it's this kind) and the glutamine as described above, and had no neuropathy.  I iced with frozen bags of peas on each foot and hand for each taxol infusion and did not lose one nail.  

    My avatar photo was taken immediately after my final #12 taxol.

    My MO stepped down my steroid gradually after I showed no allergic reaction.  She had me taking it the night before as well, but I wound up modifying that on my own after I saw I'd have no problem with it.

    In short, I did great with Taxol and for those of you just starting, I hope you do too.

    Jenn, I'm sorry you had such an awful time and I hope that eventually most or all of those problems can be reversed.

    Claire

  • Jennt28
    Jennt28 Member Posts: 2,021
    edited June 2012

    faithopenlove - I too got these weird flashes at one stage a few weeks ago! What I noticed to start with my eyes was that my prescription changed suddenly. I started having to hold my glasses out from my nose to be able to see things clearly. At the same time I started finding myself cleaning my glasses frequently thinking they were getting grubby quickly - it actually turned out the blur is my eyes not my glasses but my script has indeed changed rapidly as well.



    Jenn

  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited June 2012

    Thanks Jenn, I hope it can be corrected for you and doesn't come back again.  I will be making an apt to have my eyes checked sometime after my surgery.  I find myself doing that w my phone, thinking I need to clean it.  My other issue is the complete lack of eye lashes makes my eyes feel goopy sometimes, if I blink a bit I can clear up the blur.  Congrats on being done with the rough stuff!  Let the healing and hair growth begin!

  • Jennt28
    Jennt28 Member Posts: 2,021
    edited June 2012

    Thanks faith... They can tell me it will get worse but not at what rate :-/ The only "fix" is to have surgery to replace my lenses in each eye.



    Jenn

Categories