Taxotere is a nightmare

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  • hopefortomorrow
    hopefortomorrow Member Posts: 193
    edited June 2011

    My nails are pretty bad and I am about 4 weeks out from chemo. I have a wedding this weekend and I am thinking I will have to paint them, they look so terrible. I hope it won't hurt anything? I haven't worried about them because I haven't had anything social, I have been home.... but this is kind of throwing me. (The wedding) I want to look nice!

  • lago
    lago Member Posts: 17,186
    edited June 2011
    Hopefortomorrow I painted mine for the wedding I went to on the 15th. They looked better painted than not painted. I did remove the polish afterwards. 6 of my nail beds are still tender and a little lifted. I try not to put pressure on them. Removing polish does that so I recommend using a light color and not too many coats. If your nails didn't lift then removing the polish shouldn't be an issue.
  • pejkug3
    pejkug3 Member Posts: 902
    edited June 2011

    My nails are starting to look weird.  Kinda grayish and "dead".  They're all flaky, too.

    I didn't ice through TCH.  I know, I was warned on BCO to ice.  I'm hoping it's not chemo related and has something to do with using nail gels the last time I had my nails painted at the salon.  They seemed to be really harsh on my nails and were difficult to remove.  I'm not usually one to get my nails painted so I had no idea what I was in for with those gels.

    The nails seem firmly attached to the nail beds.  Maybe I didged a bullet and it's not chemo related at all?  (TCH #6 next week)

  • lago
    lago Member Posts: 17,186
    edited June 2011

    Nail lifting is one of the more rare SE. Many folks do get the discoloration and brittle nails.

  • ma111
    ma111 Member Posts: 1,376
    edited June 2011

    AKA; Taxoterabile. I hated it. I had problems walking, weak legs that I could not control, couldn't tell if my feet where on the ground. Hours of not being able to get out of bed. Scared to walk down 1 flight of steps to get into car. Pain in spine and skull. Asked to have reduced dose and was told, "take a week break than decide", doc refused to reduce last dose, so I refused the crap. Sometimes it takes going to the ER for the doc to realize there is a problem.

    Then my surgical and radiation onc asked why I was not on Neurotin to help with the neuropathy. I don't understand wht medical oncs don't treat it.

  • hopefortomorrow
    hopefortomorrow Member Posts: 193
    edited June 2011

    Thank you Lago for the advice! I wondered about removing the polish.

    It's hard to tell if they are getting better or worse at this point!

  • sandymess
    sandymess Member Posts: 299
    edited June 2011
    I kept clear polish on my fingernails all through treatment. The nurses suggested that it would help. Now, 3 3/4 months PFC, I am left with 6 ridges/bumps across each fingernail, and random white lines and bumps on my toenails. When I clipped my toenails last time, I cut into one of the lines and there is a big pocket there where it lifted from the nail bed! My MO said they would eventually grow out and get back to normal. I still have polish on, too. I do my own nails every 2-3 weeks and I'm very gentle when removing the polish.
  • marjie
    marjie Member Posts: 1,134
    edited June 2011

    My nails came through pretty much ok.  They are a bit discoloured and have big horizontal ridges (you can actual see at what stage chemo stopped) and I have to keep them cut very short or they just split and peel.

  • Katarina
    Katarina Member Posts: 386
    edited June 2011

    Hi Ladies, after my first round of Taxotere and Cytoxan I spent 2 weeks feeling body aches and fatigue until finally it went full bore into an inflammatory infection that sent me to the Hospital ER then to ICU and finally day 4 I was allowed to go home. I'm experiencing same SE's as you have described but have to say that Sepsis SE was the "gotcha" experience.

    Be really careful with exposure to germs. I was really careful and had neulasta but still I was hit by an infection. 

    I only got the ER because I remembered my Taxotere instructions - if you have a fever of 100.4 or greater get to the Dr. asap. I did and it saved my life.  

    Hope this help but doesn't cause any unnecessary angst. I just wanted to share what I think might be worst case SE. 

  • Carola32
    Carola32 Member Posts: 206
    edited June 2011

    I ice my hands and feet on Taxotere, put on two layers of silicium clear nailpolish as recommended by my clinic, then an opaque polish (to avoid UV reactions). I change it all every four days or so with a non-acetone, soft remover. I hydrate my hands and feet constantly and also use vitamine A on my cuticles (hands and feet) for them to be in top shape. Staying hydrated helps too. I have my last T in a couple of weeks and still no problems with my nails. Yet.

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited June 2011

    ma111, there has just been a study released that showed neurontin (gabapentin) no better than placebo for chemotherapy induced neuropathy.  I am currently working with a clinical toxicologist who has suggested a topical preparation, but she and my PCP have not yet discussed it so I am waiting on a final decision.  Not sure the insurance will cover it - but there was a clinical trial using a combination of topical amitriptyline/baclofen/ketamine that seemed to be helpful for hands and feet sensory stymptoms without having systemic effects.  Not sure it helped with the motor symptoms, though.  I am pretty frustrated with symptoms for the past  6 months, asking for help and relief, and getting brushed off with "it will take a while" and finally "it will probably never get back to normal." GRRRR!!!!  Wish they had told me that before.  I have asked that my MO report this as an adverse effect to the FDA so they can track how many women have problems after taking this awful drug.  I would have asked for different type of drug had I known this could occur and be permanent.  I applaud you for refusing the drug if you are having symptoms!  Apparently, as the toxicologist explained, there is a period of "coasting" where you think things are OK, but there is actually damage occurring, which is why sometimes things get much worse AFTER treatment than DURING treatment. Again, GRRRR! My patience is beginning to wear out!

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2011

    Just checking in and wanted to share where I am at and wondering if anyone else is experiencing similar effects. My final dose of taxotere was 4 weeks ago as of this Friday. I am still housebound as my legs will only take me about 20 steps before I become short of breath and the legs get weak and tight and ready to give out. If I sit for 5 or 10 minutes I can go again for 20 steps or so. I am totally winded and legs ready to give out by the time I get to the top of my stairs. My taste buds are still bad and it's a struggle to eat anything starchy or meat. Oddly enough vegetables and fruits taste normal as do milk products. Eyes are still tearing and most of my eyelashes are gone. Eyebrows are thinner but still there. I see my oncologist Friday so will see what she says about the legs.

  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2011

    I'll just add that the neuropathy spread from the bottom of my toes on both feet to the entire soles of both feet. They feel numb but I can feel every tiny crumb or dirt if I step on anything. Also my left arm started to swell about 2 weeks ago..lumpectomy side. Ankles and lower legs swell as the day wears on but had this before to a lesser degree.

  • marjie
    marjie Member Posts: 1,134
    edited June 2011
    EmilyInOntario - I didn't have any neuropathy but the legs being so sore and weak - YEP!  It does eventually get better.  I seem to remember being out of breath as well. My taste buds were not too bad, I liked anything sweet like fruit (or chocolate!!), but veggies were very bitter to me.  My eyes teared non-stop for weeks then just suddenly stopped one day and now that my lashes are back (mostly) my eyes seem ok.  One of the most frustrating things was being so glad to be done, but then realizing that you had to put up with the SE's for a bit yet.
  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited June 2011

    Emily, hang in there.  The SEs can continue for a LONG time - my MO said some people get better soon (as in a few months) and others take a while longer (a few years).  There is also "coasting" where you think things are better or at least not getting worse, yet the damage done by the drugs just shows up a little later rather than immediately.  My best hopes and prayers for you to regain strength.  I still have problems just making my body move to get out of bed each day, but once I get past the painful part, I seem to be able to work more consistently with less shortness of breath.  It has been over 6 months, but I AM improving in many ways - I just have to remember that 6 months is "just a while" to some people and an eternity to me.

    Also, be sure to check about lymphedema treatment and get on that ASAP so you don't get into longer term difficulty with that! If you get into treatment early, you have a much better chance of it not becoming worse and to improve greatly. I did not have that, but I know some physical therapists and massage therapists who are certified specialists in lymphedema treatment - they have quite a intensive training for this in addition to their usual training.  Good luck!

  • sewingnut
    sewingnut Member Posts: 1,129
    edited June 2011

     I sailed thru TCH X6 them wham! So glad to hear that my newly acquired "gumby" legs will get better.

  • lago
    lago Member Posts: 17,186
    edited June 2011

    I second the gummy stiff legs getting better. I think I started to notice a difference on week 5. I still have nail lifting issues but not as bad as before. I think it's going to take a long time for that to get better especially on my toes. 6 of my fingernail beds are still tender. My left heel is still numb but worse on very cold or hot or humid days. At times it does reach to the pad of my foot and maybe a little in the other heel but overall not bad. It is something I can live with.

    I'm slowly trying to ween off the diuretic but I'm still retaining fluid. I'm trying to convince myself it's getting better but I don't think it is.

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited June 2011

    Lago, I know what you mean.  I am trying to convince myself that I am getting stronger and more energetic, but just can't seem to shake it.  Still have feelings of never going to get back to even 50% normal life.... but I am going on vacation to VT and hoping to enjoy some little pleasures there. Will check in when I am able!

  • DebRox
    DebRox Member Posts: 437
    edited June 2011

    Just reading the last few pages of this thread. Sounds like recovery is still taking place 6 months PFC.



    I have received 1 infusion so far and worry about long term effects. My mo blew me off when I discussed this with her. She stated 4 doses isn't enough to give me long term effects. Ok well if that's the case, why not take 4 in solidarity with me.



    Anyways, sounds like there are cumulative effects from tc. Hopefully somehow I can keep my body in good health between treatments and hope long term effects aren't too bad.



    I did ask my mo, since this is an insurance policy, why not lower taxotere dosage to reduce overall long term effects. She wouldn't hear of it.

  • Survivor2Be
    Survivor2Be Member Posts: 109
    edited June 2011

    Hello ladies,

    I finished my last Taxol treatment on May 2nd. Now, here it is a month later and I have just lost all my eyelashes again (last time that happened was after my last AC treatment).  No top of head hair loss, but pretty much everywhere else.  Has this happened to anyone else? 

  • lago
    lago Member Posts: 17,186
    edited June 2011

    DebRox I will admit that my SE got much worse with tx 5 & 6. I do think I would have had less issues if I could have stopped at 4tx and not had 6. Either way most if not all the SE do eventually go away for most of us. It's been 6 months now and I can't say that the SE's from chemo that are still with me bother me much… the fluid retention is annoying but I do really feel it is better, certainly much better than 5 months ago. As much as we hate these SE I'll take them over cancer. Sometimes we have to remind ourselves that the SE from cancer are much harder to live with than the SE of chemo.

    Survivor2Be. I kept most of my lashes and brows through chemo… 5 weeks later the lashes all fell out and many of by brows. The brows grew back quickly. Eyelashes slowly. It's now 5 months later and some have started to fall out again (lashes and brows) but only noticeable to me. It takes a while for the hair to stagger it's falling out pattern. My hair came in on the sides before the top of my head. Front top was really bald for a while. I can't say how much I had at 1 month because I didn't bother to look. I was told it would start to s how around 4-6 weeks. You should check out the hair hair hair another question thread.

    I have posted a link to my transition on page 315. I posted my first hair photo (without scarf) at the 6-7 week PCT

  • MaggieMc2
    MaggieMc2 Member Posts: 54
    edited June 2011

    My last taxotere was on March 15. It was definitely a nightmare and I am so glad that part of treatment is over, despite the ongoing SE's associated with it.

    My eyelashes and brows are starting a comeback, the eyebrows are winning by a hair (sorry, I couldn't help myself). My toenails are dark gray and lifting off. Eight of my fingernails split off half way down, and are now growing back. I paint them all a lovely shade of pink called " Enchantress", which is just how a bald, breast-less women w/o eyelashes feels! Actually my hair is growing in a bit, sort of a Marine recruit look right now. On the bright side, I still do not have to shave under my arms, and barely have to shave my legs.

    Now the not so good stuff. I still have Neuropathy in my fingers and toes. My CO asked me "if I could live with it?" that coupled with the still growing back nails makes simple buttons and zip-lock bags a real challenge. And the icing on the cake...despite getting a Shingles shot about 3 years ago, I developed Shingles about a week ago as a result of a weakened immune system due to cancer/chemo.

    I am almost finished with radiation and I still have reconstruction in a few months. Aside from the lingering SE's from Taxotere, I am starting to think that my life is finally being given back to me.

  • supersally
    supersally Member Posts: 351
    edited June 2011

    It sounds like this is the place I need to be asking my questions about swelling in my ankles and feet.  I had my last chemo, Taxotere and Cytoxan, on May 18th.  The swelling just started Sunday, almost 4 weeks out!  I didn't realize that could even be a side effect and now I have it - ahhhhhh!  I saw the MO yesterday and he sent me over for a Doppler scan to rule out blood clots.  Other than that, he didn't have any advice other than stay away from salt, elevate, avoid caffeine and alcolhol.  OK, I already knew all that.  He also gave me a diuretic which I will start tonight.  Any advice? It sounds like others have experienced this also?  It helps to know I'm not alone...

  • dragonfly1
    dragonfly1 Member Posts: 766
    edited June 2011
    Supersally I've had noticeable swelling in my ankles, legs and abdomen from Taxotere. The swelling for me has been worse since #5 and #6. I'm 2 weeks PFC and my weight still fluctuates several pounds every day from the fluid. I'm a little better in the morning after sleeping but my ankles are always swollen when I get home at night. My MO doesn't want me to take a diuretic yet and keeps telling me to wait it out because she tells me it should resolve 6 weeks PFC...
  • EmilyInOntario
    EmilyInOntario Member Posts: 626
    edited June 2011

    It's almost 5 weeks post taxotere for me and I too have terrible swelling in feet ankles and lower legs. Prior to chemo I had some issues with swelling, usually in hot weather but now the legs get shiny and very tight and the tops of my feet are always puffy. The onco told me a diuretic probably wouldn't help and that this could resolve suddenly on it's own.

    The worst of the post taxotere SE's for me has been the leg weakness. I still can't walk far before my legs want to give out. I don't go shopping unless it's a short walk through the store leaning on a cart. I need a wheelchair to get to the radiation department as the hospital hallways are just too far for me. Both soles of my feet are still numb from neuropathy. Mt taste buds have only started to improve the past few days. I think that has been the worst misery..not enjoying eating. Despite that I put on weight which can't be from eating as I have eaten so little so must be fluid.

    I have one eyelash left on each eye..pretty bizarre ...but have some peach fuzz on my head...can't see it but I FEEL it...yay!  My nails are slightly discoloured with some ridges but haven't loosened..yet. I am starting to feel less tired but now into the second week of rads so that may be short lived. Taxotere definitely seems to be cumulative and it's a very nasty beast. I long for all these SE's to be behind me.

    How is everyone else doing?

  • thegood5
    thegood5 Member Posts: 478
    edited June 2011

    So sorry to hear that you are having swelling, but also glad to hear that I'm not alone!  I haven't been on Taxotere since the end of Jan, but still get Herceptin every 3 weeks.  The past 3 days my feet have been killing me, and yesterday my ankles started to swell.  By this evening they were both huge...I've got some lovely cankles going on.  Reading all of the things about swollen ankles can really freak a person out...it could be as simple as too much salt, or scary heart problems...looks like I may be going for an ECHO soon.  Have to call my onc tomorrow morning about the swelling...hoping it's nothing to be concerned about...I just got the news a week and a half ago that my PET showed NED, I want to keep celebrating and not have to worry about swelling now!  Take care everyone!

  • dragonfly1
    dragonfly1 Member Posts: 766
    edited June 2011

    thegood5 Congratulations on the PET scan results-that's awesome!!!

    emilyinontario I'm 3 weeks out from my last chemo and I still have the swelling as well but I think it has improved just a little bit. I know all my extra weight is from fluid because I was unable to eat much during chemo as well...everyone keeps telling me the weight will drop off eventually. I hope they are right! If your swelling stays bad for much longer, you may want to ask for a diuretic to help drop some fluid.

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2011

    the good5, wonderful news about your NED results

  • lago
    lago Member Posts: 17,186
    edited June 2011

    Just popping in here. I too am still retaining fluid but not as bad. Now about 3-5 lbs instead of 5-8. I'm still on the diuretic for another month. Will try again too ween of it after that.

    The sore legs just started to get better for me after 5 weeks. I did do stretching too. I'm still having sore feet though. When I walk all day the pads/heels of me feet are so sore. Anybody have this issue? Any good suggestions as to what I can put in my sandals that might work. Anyone gellin?

    My legs did start to get stiff again but I think it's either from all the walking or the Anastrozole. Not stiff like on Taxotere though. I can shake it out in a few minutes.

  • thegood5
    thegood5 Member Posts: 478
    edited June 2011

    lago, you sound just like me!  my feet get so sore on the bottom, usually after my Herceptin.  But the past few days my ankles have turned into cankles.  When I woke up this morning the swelling wasn't quite as bad.  So many things have been going on the past couple weeks, walked 15 miles in a relay for life, on my feet a lot over the weekend, weather is humid...any one of those things could be the contributing factor, but it could also be something serious...you know with Herceptin and your heart and all...hoping it's not anything like that.  Hope your feet are feeling better soon!

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