Taxol Treatment

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Last week I had my 6th (of 8 straight weeks) Taxol treatments.  The first 5 treatments I tolerated extremely well.  I just had what I referred to as a travelling pain.  All of a sudden I would have a jolt of major pain that could come anywhere in my body, in a joint, muscle, in the middle of my shin - just about anywhere.  Then last week I had the absolute worst week.  I have my treatments on Fridays.  By Sunday the pains started.  My entire body hurt.  Then by Monday the shooting pains were here and my body was in excruciating pain until the end of the day on Wednesday.  I had Vicodan to take and did take, but as soon as I woke up the pains were still there.  It was absolutely horrible.  So, when I went for my treatment today I just couldn't do it.  Now after reading some of the other discussion boards and other people's reaction to the Taxol I think I probably made a mistake and just ended up extending my treatment by another week.  The dr. said I could decide next week if I wanted to do the last 2 treatments.  I really want to finish the recommended dosing because I don't want to regret anything later.  Also, seems most people talk about constipation but I am the total opposite.  I have extreme diarrhea.  This was through the AC treatments too, which I have 4 over 8 weeks.  Took Iodium several times a day to no avail.  Dr. prescribed lomodal (sp??) - same thing.  I end up taking the maximum every day and actually went through the pills they gave me for a month in just two weeks.  Any advice?

Comments

  • Makratz
    Makratz Member Posts: 12,678
    edited July 2009

    I know people will be along to offer advice soon.  I have never had Taxol, therefore I cannot.  I just wanted to offer you a hug!  I hope you are felling better soon.

    ((((((((((HUGS))))))))))))))

  • judy20000
    judy20000 Member Posts: 5
    edited July 2009

    Thanks Makraz.  I need all the hugs I can get!!!  Here's some back to you.  (((((((((HUGS)))))))))

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

    Judy, I don't know that I have any help... but here's what I'm doing, FWIW.  I'm getting 12 weekly taxols, just had my 3rd Wed.  After my first two I got pounded by pain.  I'm having to combine what my dr. gave me (hydrocodone) with my own treatment plan because I can't take heavy drugs during the day and function, so I'm walking daily and trying a bit of yoga, one dose of hydrocodone at night with an ativan, and one or two tylenols during the day.  It's way less drugs than the dr. prescribed but I'm hoping it works for me.  I'll really find out this weekend, tomorrow is my normal get-pounded day.  I guess my point is that if you want to continue the treatment, see if you and your oncol. can come up with something that helps, and think about what *you* think might help as well as what your dr. suggests. I don't think there's any reason you have to suffer so much!

    Of all the side effects I expected from Taxol, pain was not even on the list!

    I'm not having diahhrea, although that was one I *was* expecting.  Go figure.  Sorry I can't help with that.  I know my oncol. wants to know if I have more than 4 diahhrea movements in 24 hours (I assume it's a dehydration thing).  I'm sure someone else will be able to help...

    and I sure wish you the best!  Sending lots of hugs...

    Carol

  • LRM216
    LRM216 Member Posts: 2,115
    edited July 2009

    Hey Judy, I wish I could offer words of wisdom; however, I am in the same boat as you.  I had my first taxol two weeks ago (DD Taxol x 4 -every two weeks). Had it on Thursday, and by Saturday thought I was going to die - Sunday, felt as if I did die and had to miss work on Monday due to all the bone aches and pain I was still experiencing.  Everyone said this was so much easier than the AC - can't prove it by me.  I felt it was much worse. Also got neuropathy in all my fingertips and being a legal asst to a partner in a large law firm, type I must.  Also got it in my feet, they felt as if I were walking on hot coals, then began to tingle and get numb.  During the past two weeks, feet are back to normal but not the fingertips.  When I went this past Thursday for my 2nd taxol, onc refused to give it to me due to the fingertips still being numb and postponed me another week, which I hated.  She is also insisting that I be switched to the taxotere as she said it too does cause some neuropathy, but not as bad as Taxol.  I don't know if this is true or not as alot of the gals on Taxotere are suffering neuropathy as well, but she insists on the switch as she said if she keeps me on the Taxol, it may permanently disable my hands.  Just what I need.  I am triple neg so it is important that I get to finish one of these dang Taxanes - just hope I can.  Keep me posted on how you make out - and again, I wish I had a great answer to your situation, but as you can see by mine, I'm in a stinky position too.  Best of luck with it.

    Linda

  • cmharris59
    cmharris59 Member Posts: 496
    edited July 2009

    Hello ladies,

    I had Taxol last year and what you are feeling sounds very much to me like neuropathy. The oncologists do not tell you that pain is also a symptom not just numbness and tingling.  Talk to your doctors about it. I developed it with the first infusion of Taxol and it has caused permanent nerve damage in my legs and hands. My doctor told me that only 1-3% get permanent nerve damage but you need tot talk to them just the same. I am now taking B-complex, methadone, percocet, and neurontin for the pain every day.

    Neurontin should help and you should ask for it. It is designed for pain from neuropathy.

    Hope that helps

    C

  • judy20000
    judy20000 Member Posts: 5
    edited July 2009

    Thank you everyone for your advice.  I wish I had gone through with the treatment yesterday.  It sounds like I'm having all the same problems as everyone else.  The doctor did tell me my problems were common with the Taxol, but it seemed so bad that I didn't think he was right.  Having this week off of treatment I should feel better by the time my next Taxol is scheduled, which is Friday.  I'm going to do my best to do the last 2 treatments just to complete the recommended dosages.  I've come this far and I want to finish!!!  I will ask for the Neurontin cmharris59 because the Vicadin I have doesn't quite do the trick.  Hopefully that will work better.  Again, thank you to everyone and I hope your journey through this hell goes as smoothly as possible and cancer-free isn't too far away.

  • LRM216
    LRM216 Member Posts: 2,115
    edited July 2009

    I hear you, Judy - May we all get through this in one piece!

    Linda

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

    Hang in there, Judy... and do the best you can.  Different pain meds work better/worse for different people so if one doesn't work, keep asking until you find one that does.  No reason you have to suffer!! 

    Today is my get-pounded day and I am feeling some aches and TONS of fatigue, but not as much pain as the first two weeks.  I'm making myself go for a short walk later in case that part is really helping.

    Hang in there, everyone... and hugs to all.

  • judy20000
    judy20000 Member Posts: 5
    edited July 2009

    Has anyone tried physical therapy or massage therapy for the neuropathy?  My kids gave me a body massage for mother's day.  At the time I couldn't really use my left arm since my surgery for the biopsy and taking out a few lymph nodes.  The nerve was really tight and I didn't have any strength and it hurt to even just turn it.  After I had my massage and she worked on the arm it didn't hurt anymore.  I have just about complete range of motion with it.

    I was thinking of trying that or asking the doctor to order physical therapy.  Also, do you think the amount of stress you are under has anything to do with the severity of side effects?

  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    I also had the really bad pain with the taxol. The only thng that helped was percocet.

    I didn't take anything for the diarrhea, but I spent so much time in the bathroom I think my kids went to the neighbors when they needed to go!

    My last taxol was April 30 but the tips of my fingers are slightly numb still, though less than they were. The bottoms of my feet remain just as numb as they were immediately after the treatment.

    Leah

  • cmharris59
    cmharris59 Member Posts: 496
    edited July 2009

    Judy,

    I have physical therapy twice a week for my neuropathy. I was given a free massage on my biirthday. It was a full body massage, but she couldn't do my legs. I had horrible sores from a rash ( a complication that I get periodically from the methadone) and because of the intense pain and sensitivity to touch. I have  thought about going back and trying again, but right now I can't afford the massage.

    C

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

    Judy, I do believe stress has an impact on symptoms, absolutely; I've thought that for years and there's lots of research on it.  Stress impacts every part of our bodies/physical, mental, emotional... anything that helps alleviate stress is going to help you feel better to at least some degree.

    Stress relief for me includes:  I meditate as often as I can (which is not as often as I'd like -- when I'm tired, I have trouble meditating).  Walking in the woods and yoga/stretching also serve as meditation for me, and stress relief (and physical therapy).  Reading, knitting, music. Oh, and it sounds silly, but crying is hugely cathartic for me.  But the physical component is the piece that seems to be helping me most with pain right now.  Whether that will help with neuropathy is yet to be seen, but this treatment has been considerably less painful than my first two so I think it is helping reduce the overall aches and pain and I'm sticking with it. 

    Good idea to ask your dr. to recommend pt or mt so your insurance covers it.  Good luck!

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