taxol/aches/help?

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  • Jane108
    Jane108 Member Posts: 36
    edited November 2009

    Kimmer51,

    I had a raspy voice all through my Taxol treatments.  The raspy voice ended up to be severe laryngitis and my onco doc said he never heard of a raspy voice with Taxol.  I took it upon myself to see an ENT specialist who told me he has had quite a few chemo patients with raspy voices.  What relief to hear that because I thought I had lost my voice for good.  I had the raspy voice from July 16 to Sept 13.  ENT doc said it would go away about 4-8 wks. after my last taxol.  Well, my last one was Aug. 12!  When I went to him he put me on Prilosec and it certainly worked.  If you still have it, be patient but see an ENT doc just to rule out a more serious problem.

    I, too, had a blistery rash during Taxol.  My onco doc again said he never heard of it but took me off Taxol for a week and during that week the rash went away.  The rash was only on my hands, looked like poison ivy, but it wasn't.

  • Kimmer51
    Kimmer51 Member Posts: 26
    edited November 2009

    When I first had the rash (just on my arms) the oncology nurse said it looked like a Taxol rash.  She had my oncologist come see me and he said no, it was a reaction to the Z-Pak I was on.  A couple of weeks later the rash was back and the nurse had a different oncologist see me.  He said it was a Taxol rash and held my treatment.  This week they had me see my oncologist again and he still doesn't admit it is a Taxol rash.  He wanted to know if I had been working in the yard - like I have the energy for that!  He had me go ahead and get the treatment, but put me on a Medrol Dose-Pak.  The rash has finally gone away. 

    I talked to the oncology nurse about the raspy voice and she said raspy voice did go along with Taxol.  I really think you get more info from the nurses than the docs.

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited November 2009

    I'm sorry that so many of you have been having a rough time on taxol but I'm glad to hear AC wasn't as bad.  I start AC in a couple of weeks.  So I'm on week 10 of taxol and had some of the SE that have been mentioned.  Raspy voice, indigestion, rash, low wbc, low rbc, mild neuropathy.

    Just had a rash show up on my face and hands today that was worse than before.  Called the onc and he said take some benadryl.  First pill reduced it a lot.  Just took another and I figure that should take care of it for now. 

    Got the raspy voice and bad indigestion the first week.  Onc added a daily Zyrtec and daily Prilosec.  Both have been doing the trick.  When the raspy voice comes back I just add a second Zyrtex in the evening.

    I also take Sutent which gave me acne.

    But the worse SEs for me has been the taste change and the fog I get on the days 3&4.  Really hard to eat on those days cause the nausea is worse, my mood is glum and nothing tastes right.

    So my morning meds are: Zyrtex, Prilosec, 1 Ginger tab, 3 B6, 1 Vit D, Miconcyclene, Sutent

    Afternoons: Neupogen shots on days 2-4

    Evening: Miconcylene, Ginger tab

    Started using Zofran a couple of weeks ago most days.

    No aches or pains though.  And the neuropathy hasn't been too bad.  Don't know if the B6 has kept this at bay or if I'm not as susceptible.

    Had to have a transfusion last week to get the my rbc back up.  Hard to believe some of these oncs are saying taxol shouldn't affect the blood counts.  Mine have trended downward from the first infusion.

    If this is a walk in the park then I want to go to a different park!!

  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2009

    I'm chiming in because I'm feeling the "is it just me" feeling.  I finished DD AC which was tough on me and started 12 weekly Taxol, which is easier in a lot of ways with the exception of the muscle and bone pain.  I've become extremely sensitive to touch on my shoulders and back, have sharp muscle pains in my back and thighs and the bottom of my feet hurt when I'm on them for any length of time. 

    From what I can see, it's not just me and Taxol does cause this kind of pain.  I guess the good news is that after this week I'll be at the halfway mark.....................

  • BlessedOne2
    BlessedOne2 Member Posts: 106
    edited November 2009

    Hi, this is the first time of this forum, but based on my readings so far, I hoping that there will be many helpful comments.  I've had 4/12 weekly Taxols and have experienced the body aches from shoulders to feet.  I occasionally take hydrocodone or darvon to help me relax enough and go to sleep.  The knee.pain is felt mostly when I am getting up after sitting or laying for a while.

    My newest experiences  are a cough I have had since early September. I thought it was allergies which I've had before but the cough is usually gone within 30 days.  It just won't go away.  The second is acute shortness of breath with sudden onset.  I've had several tests and they are all negative for any cardiology problems.  All of my stats are in the normal ranges.

    Has anyone experienced either of these conditions while in treatment????   What tests did you go through?  What results and treatments?   These two things are beginning to wear me down.

    Hugs,

    Wanda    

  • Kimmer51
    Kimmer51 Member Posts: 26
    edited November 2009

    I have #9 of #12 Taxol this Friday.  It seems to me that most of the side effects are temporary.  I had to take a one week break due to my rash.  I felt better for a week.  Started the Taxol again and started the aching that I had the first few weeks, just not as bad.  I have some numbness in 2 of my toes, but not my fingers now - had a little in my fingers during first few weeks.  Have a constant runny nose.  Raspy voice went away after a few weeks.  Rash went away with Medrol Dosepak.  Have been doing radiation at same time.  Not as much fatigue as I thought.  A lot of breast soreness underneath my breast.  FYI - I was told to use Neosporin which I did for a week and then when I asked about putting something over the sore spot so the skin didn't stick together they suggested handkerchief or sock.  If they had thought to mention this to me when I first got sore I don't think it would have been nearly as bad. 

     I think for each treatment there needs to be a complete list of every possible side effect and what can be done for it - take out some of the surprise.

  • cmharris59
    cmharris59 Member Posts: 496
    edited November 2009

    Oh how right you are Kimmer! It would be wonderful if they gave us a list, instead we have to find out through bitter surprises.

    I am nearly 18 mths out from my last Herceptin treatment and even longer for my last Taxol. I did A/C first over 2 years ago. I am still suffering from the neuropathic pain in my legs and have a constant tingling in my hands. My oncologist insists that they should have been temporary and have subsided by now. NOT! 

    I had lots of side effects from the Taxol and my shortness of breath was finally attributed to Congestive Heart Failure from the A/C, Herceptin and the Neurontin that I was prescribed for the neuropathic pain. I am now taking Methadone and Lorcet or Vicodin for the pain in my legs.  Believe me, if I miss a dose, I am an invalid. 

    My symptoms for the neuropathic pain consisted of tingling, numbness, aches, hypersensitivity to touch, and cramping pains.  My symptoms for the Congestive Heart Failure consisted of swelling in the and the abdomen with an increase in the left leg, shortness of breath, and lack of energy.

    My treatment for the neuropathy consists of Methadone, Lorcet, Neurontin, B6, and physical therapy to help desensitize my skin. My treatment for the CHF was to stop all treatment. It was discovered with a MUGA scan. I was tested again one year after the treatments stopped and my heart function had only raised a few points. This is not common, but it has been the case for me.  

    If I can be of assistance, please let me know. Hugs to all of you,

    C

  • BlessedOne2
    BlessedOne2 Member Posts: 106
    edited November 2009

    C,

    You said that your shortness of breath was finally attributed to Congestive Heart Failure.  How long did it take to get to this diagnposis?  What tests did you have?  I have had an acute shortness of breath episode that landed me in the emergency one time in the last two months.  The first time I experienced it, I was out of town and just waited through it. The next day I felt so much better.  Once a month for the past threee months - something is going on so I'm trying to find all possibilities so that I can be much more proactive with my doctors.

    Wanda 

  • joyce1938
    joyce1938 Member Posts: 1
    edited November 2009

    Hi Everyone

     I have not been on this site for a long time. I am on Taxol and Avastin ( Beva) and I have been on it for 6 months. I have no idea when I will be off it for I have matastisized breast cancer. I do have some numbness in my feet, especially the toes and back pain and mild nausea and the worse for me is the taste of food. I have lost 45 lbs since April because everything I put in my mouth tastes like aluminem. Horrible. Fruit and milk products are the only thing that doesn't have that taste.

     The Beva causes it's own s/e such as I had bleeding from the rectum,constipation,decrease in how much and how often I urinate, dry mouth,chills, shortness of breath, hair loss and tiredness

     Are all of you in lower stages? They gave me 18 mo to live and that was 2 years ago and I am doing fine right now.  I just take each day as it comes and go on with my life as if nothing is wrong.

     I get treatment every week x 3, one off and then one more then start over again and after that cycle, I have scans.

     God Bless everyone of you

         Joyce

  • celtic
    celtic Member Posts: 59
    edited November 2009

    I am sorry you are having such a hard time on taxol, I was on taxol few years ago and had to stop after three treatments of four, due to severe nerve pains in my feet.

    As to the voice, try eating ice and or drinking slowly cold liquids with ice while getting treatments... it was suggested by my nurse since after my first treatment I was in pain when talking or eating , it worked like a charm, no raspy or pain when trying to talk or eat.

    Unfortunately, I am still having pain in my legs years later... but not complaining :o)

  • kari412
    kari412 Member Posts: 1
    edited November 2009

    Hi, everybody:     I've enjoyed reading your Taxol posts tonight ----- my onc told me I would maybe have toe numbness for a year, doesn't last longer --- etc. etc.   that was 7 years ago!  I guess Taxol was still in a trial at that time, as was the sentinel node test and the Herceptin.  All this time later, I feel very blessed that my cancer developed at the same time that the trials were all going on and I was able to be in them.    I just wanted to say that I hated taxol but aside from fatigue, only the toe numbness really bothered me.   Last year, for an unrelated reason, I was prescribed the generic for neurontin, Gabapentin, and while it didn't do a lot for what it had been prescribed for, it definitely has helped my toes, so much!!  I'd been on it for a few months and one day I suddenly realized that my toes weren't tingling and didn't feel as numb.    Good luck to you all -- and I hope that the rest of your chemo time passes quickly and easier.        Karen

  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited November 2009

    I've been off Taxol for 7 weeks (and have since had my surgery as well).  In case anyone's still reading, most of the Taxol SE's have gone away for me.  My fingers are fine; my toes are still a little numb but they don't hurt any more and are getting better; most (but not all) of my taste is back; and except for some post-surgery fatigue, I'm not really tired -- certainly nothing like what I experienced during chemo!  So things do get better... it's just hard to hold on to that when you're down in the trenches!  Best wishes and hugs to all...

    Carol

    PS  Oh, yes, and my hair is growing in nicely and nearly an inch or so long now!  Spiky hair style, here I come! :)

  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2009

    I am on Taxol now, just finshed #7 of 12 treatments.  Last week the neuropathy pains in my hands and feet really starting showing up more, but what has become really frustrating is the pain in my back and legs and the nerve pain that was described by Kat of "don't touch me".  At times when I'm walking I feel like my legs want to give out......  My sister used to come over and give me back massages for pain relief and relaxation, but now I can't stand to be touched.  I too am on Avastin/Placebo and on the weeks I have the Avastin/Placebo I terrible catus butt, intensified pain in my bi-lat insisions and bloody sinuses.  I guess what I find frustrating is that my mind feels clearer and I do I feel better than when I was on AC with the exception of the terrible Taxol pain.  So am I really feeling better or dealing with different pain? 

  • Kimmer51
    Kimmer51 Member Posts: 26
    edited November 2009

    Last Taxol today.  I always "crash" the day before chemo and then have energy chemo day and 4 days afterwards.  Any suggestions as to how to get more energy now that I won't get my steroid boost on chemo day or the day afterwards?  The oncology nurse suggested B complex vitamin.  She said it would take about a month to start getting my energy back.  Does anyone know anythying else that helps?  Change in diet?

  • SharaD
    SharaD Member Posts: 100
    edited December 2009

    Yes, Bcomplex vitamin for energy! Has your Vitamin D level been checked, too? Supposedly we're all low in Vitamin D unless we're in a "sunshine state".



    I don't know how the hell they know that TAXOL is the drug that's giving us aches, instead of one of the other half a million things that they inject into our veins or drop down our throats.



    Try Aloe Vera gel for your feet and rub well into the joints. CVS has a tube product called "After Sun" that I use because it has no fragrance and won't irritate a rash. It is clear and $2.99 a tube.

    Aloe Vera JUICE is supposed to fight cancer and eliminate constipation, but don't take too much because if overused it can mess with Decadron/steroids.



    Also someone recommended CVS Fragrance Free "Advance Healing Lotion" for my hands and it seems to be working great, $1.49 a tube!

  • Kimmer51
    Kimmer51 Member Posts: 26
    edited December 2009

    Haven't had vitamin D checked.  I'm in Ohio and there is absolutely no sunshine today.  I'm seeing my oncologist tomorrow.  I'll mention that to him. I'll probably be starting on Tamoxifen tomorrow.  We'll see what fun side-effects I have from that.

  • tamlyn110
    tamlyn110 Member Posts: 195
    edited December 2009

    I had my first Taxol today and it has been awful. I am so tired and sore. My whole body hurts and I am really pale. My daughter told me I look terrible. I thought this was suppossed to be easier than AC so far it is not.

  • gogo_xago
    gogo_xago Member Posts: 131
    edited December 2009

    Tamlyn how many Taxols will have? My mom had 3 (I think this combination is heavier than x12).

    She had some neuropathy in hands and feet. Hot water in plastic bottles helped her. She was pale too. But after Taxol ends, she is OK. Some women feel that taxol is easier bur others not. I hope to cope with it. 

    god bless you all. 

  • Kimmer51
    Kimmer51 Member Posts: 26
    edited December 2009

    tamlyn - I had 12 weekly Taxol.  I was tired and sore and achy after the first one, less so after the second.  It seemed that with every treatment my side-effects were different.  I breezed through AC and was told Taxol would be easier.  I've learned not to believe everything the medical community tells you.  Are you going to have radiation too?  I had radiation along with my Taxol, which is another animal to deal with.

  • tamlyn110
    tamlyn110 Member Posts: 195
    edited December 2009

    Gogo- Thanks for youe reply. I am having 12 weekly taxols

    Kimmer51- I am having radiation after I am done with the taxol. Did you have it at the same time? I wish I could do that & just get it over with.

  • Kimmer51
    Kimmer51 Member Posts: 26
    edited December 2009

    Tamlyn - I had a few Taxol treatments until they saw how I would handle it and then started on the radiation.  I wanted everything done by the end of the year so I didn't have to start over with my insurance deductible.  I finished up with radiation the week before Thanksgiving and finished the Taxol the week after.  Last Sunday I got sick (that would have been the 6th).  I knew I would feel tired since it would normally have been time for chemo and a steroid boost and I was done so I thought I'd just have to push through the tiredness.  I started having chest pressure, cough, so weak I couldn't go up the stairs on my feet, I had to crawl.  I had a followup appt with my oncologist on Wednesday.  He sent me for a chest x-ray.  I had radiation pneumonitis and did Z-Pak and Medrol Dosepak.  I felt better by the following Sunday, but through the night last night started having the chest pain again.  I'm going for CT this afternoon, being put on another antibiotic and, since I finished my Prednisone taper today, going on twice a day Prednisone for awhile.  I did some research and found that you are more likely to develop radiation pneumonitis if you do Taxol and radiation at the same time - nice to find out after the fact. 

    I think you are smart to wait and have the radiation after the chemo.

  • tamlyn110
    tamlyn110 Member Posts: 195
    edited December 2009

    Kimmer51- I hope you feel better soon. That is awful. I think I will just hold off on the radiation until I am done with the taxol. It seems to be hard enough right now.

    I am having really bad leg pains and I managed to get a cold so I feel awful and it is time for taxol again. I am not looking forward to this at all.

  • seaofhope
    seaofhope Member Posts: 66
    edited December 2009

    Tamlyn, I found an electric blanket at night very helpful.  My legs throb and the blanket relaxes the muscles and reduces the pain. I use it only on my legs so I don't sweat while I'm sleeping, which would wake me up!  I have the most pain about 3 days after treatment and it lasts about 3 or 4 days.

  • Kimmer51
    Kimmer51 Member Posts: 26
    edited December 2009

     I had the aching too, but it seemed to get better after the first few treatments.  I would still get a little bit of aching a day or two before my next treatment, but not as bad.  Dr. gave me Vicodin.  I just took it when Tylenol didn't help and it did relieve the pain.

  • SharaD
    SharaD Member Posts: 100
    edited December 2009

    Don't take EMEND for nausea if you're getting TAXOL.

    Tell your doctor to prescribe something else as the interaction of these two drugs is considered a MAJOR concern.

    See drugstore.com, click on "Pharmacy" an then "drug interaction checker"

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