Taxotere girls: I need some info

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Sunflower64
Sunflower64 Member Posts: 166

Hi everyone and Happy New Year!

I posted this similiar question last week. Again, I finished my chemo on October 22nd. My first 4 rounds

were  A/C and last 4 were Taxotere. 2 weeks ago I started coming off of Cymbalta (antidepressant) because it will interfere with Tamoxifen. I haven't started my Tamoxifen yet because I am now doing radiation. Anyway I am experiencing so much more pain now in my joints and bones!  It is horrible!

I'm thinking the only thing I'm doing different is coming off of the Cymbalta so that is why I am having more pain.  I called my onco today and the nurse just got back to me and said my onco said that the pain would not be from the Taxotere.  That it is probably a neuropathy or a fibromyalgia!  And, my onco said that the Cymbalta was probably helping with the pain that is why I am having more now.  So my question is does Taxotere cause fibromyalgia?  I know it causes neuropathy but I didn't have it through my treatments. My onco wants me to see a pain specialist to see where the pain is coming from and how to treat it.  From what I read on the boards and elsewhere joint and bone pain could last months after chemo is finished. I'm just really shocked that my onco would say it is not related. I don't get it! 

I'm tired of taking Advil. Too much of it is not good for you.  Do any of you have any suggestions of what to take?  My Radiology Onco gave me a Rx for Darvacet but I really don't want to take that.

I'm really scared that it could be something else to deal with.  I feel like I just got through so much and now I have to deal with something else. Any advice would be appreciated.

Thanks for listening,

Diane

Comments

  • chainsawz
    chainsawz Member Posts: 3,473
    edited December 2009

    Geez louise!  It seems like these docs like to deny the existence of SE....like if they deny them they don't exist?  Everytime I mention a SE, they scratch their heads and say hmmmmm - I haven't heard of that....that why this board is such an amazing gift :>

    The taxotere website even lists joint pain as a SE (http://www.taxotere.com/consumer/taxotere_treatment/side_effects.aspx) so you are not going crazy :>  I still have some joint pain a year later.

    Are you getting a neulasta shot the day after your taxotere?  That's a standard, but you may not.  If so, that causes awful joint pain for some, too.  Taking a claritin and aleve together helps with that pain.  It's a weird combo that really works. 

    When my onc tells me something is not caused by my chemo, I print out stuff from the drug companies and insist he read.  He does and is open to listening to me...otherwise I'd give him the boot!  

     I wish you the best!!

  • carol1949
    carol1949 Member Posts: 562
    edited December 2009

    Diane,  I am sorry you are struggling with discomfort.  I, too had some aches and pains, and had the same tx as you.  22 weeks of chemo!

    Now, I have gone holistic with the blessing of my oncologist who says knowing me, she understands and feels that the least medical intervention, the better.  She did recommend for me to take Femara, and I tried it for a few months, but it was not for me.  I felt like a 90 year old lady w/ aches and pains and told myself that is no quality of life.

    I have been going for Reiki therapy and for me it has been profound.  I also take Lugol's iodine which acts as an estrogen blocker without the bad side effects.  

    I highly suggest for you to do some research and listen to what speaks to your heart.

    I have a friend who is now a 12 year b/c survivor who did it holistically and she has been inspirational to me in this journey.  Any help I can offer others makes me feel like I am paying her back,

    To heal from bc is body, mind and spirit.  Medicine alone, can't do it!

    Listen to healing tapes, Andrew Weil, Bernie Siegel, Deepak Chopra, Anyone who speaks to your heart.

  • Sunflower64
    Sunflower64 Member Posts: 166
    edited December 2009

    Hi Lisa,

    Thanks for the reply.  I did have Neulasta shots the day after but it has been two months since my last chemo and shot. I will have to talk to my onco.  I have an appt in 3 weeks. She did say when I was doing the taxotere that I will experience bone pain. Now, she says I shouldn't have the bone/joint pain 2 months later. I question sometimes if the nurse really talks to my onco.  Did you ever get that feeling?

    I am really surprised my onco said this.

    Happy New Year,

    Diane

  • Sunflower64
    Sunflower64 Member Posts: 166
    edited December 2009

    Hi Carol,

    thanks for the reply.  i would love to try holistic things once i get through radiation. thanks for the support.

    happy new year,

    diane

  • chainsawz
    chainsawz Member Posts: 3,473
    edited January 2010

    Diane,  I do get that feeling sometimes :>  I told the nurse practitioner at my onc office that I had a sore thoat and a very swollen uvula - probably caused by dehydration because I took too much immodium with my tykerb.  She told me I had too much time on my hands....like I was looking all over my body to find stuff?  My uvula was so swollen it would flop out to my tongue....like 6 times its normal size...and it gagged me.  I think I didn't have to work to find that.  When I showed my friends and family, they all recoiled and said "ahhhh!".  The NP thought it was all in my head.

    The next visit I asked to see the onc and not her.  My throat happened to be swollen again that day, so I showed my onc and he said "wow, it is swollen.  I have never heard of this, but if it happens again lets see an ENT".  I hope your onc is a little more supportive of you than the nurse.  Even if they can't help us with our SE, it is nice to know it's not all in our minds :>

    You might look thru the chemotherapy, before, during and after forum and see if there are others experiencing the same issue and how they deal with it.  I hope you have a wonderful new year and get some relief from your joint pain!

  • otter
    otter Member Posts: 6,099
    edited January 2010

    Diane, I had 4 rounds of Taxotere & Cytoxan, with a Neulasta shot after each infusion.  I had bone/muscle pain throughout chemo, but it was worst 3 days or so after each Neulasta shot (and especially after the first one).  My onco had warned me about the bone & muscle pain.  She said the pain from Taxotere could get pretty bad, and it might be hard to distinguish that pain from the Neulasta pain.  In any case, she recommended ibuprofen and exercise (walking, mostly).

    Once I finished chemo, she put me on Arimidex, which causes its own wonderful aches and pains.  I expected the joint pain from Arimidex, but my onco said there was also likely to be arthritis-like joint pain that was an after-effect of chemo.  The way she explained it was, chemo is a powerful anti-inflammatory agent.  It often suppresses the pain from pre-existing arthritis (I have/had osteoarthritis), but we don't detect that benefit because of the bone/muscle/joint pain that the Taxotere causes. However, once the chemo drugs are out of our system and the anti-inflammatory effects are gone, our old, pre-chemo problems resurface.  In my case, she said the aches and pains of my osteoarthritis would probably reappear a few months after ending chemo, and be more severe than they had been pre-chemo.  That would continue for, oh, 6 months or so (I think she said).  It's sort of a rebound effect after the chemo is gone.

    I was once dx'd with fibromyalgia, many years ago.  I don't know if I really have it, and I've never taken anything for it because the characteristic aches are infrequent now.  But, since finishing chemo, I've noticed I have days of generalized muscle/joint aches (myalgia) that seem to be more frequent and more persistent than before chemo.  I don't know if it's fibromylagia, or osteoarthritis, or something else; or maybe it's just due to Arimidex (which in my case would be most likely).

    This rambling answer is meant to tell you that you are not alone, and your pains are not unusual; but I'm not sure we know what's causing them. 

    This is going to sound strange, but, is your Vitamin D3 intake adequate?  There is some evidence that low Vitamin D levels in the blood are associated with greater perception of pain.  That is, people who have low Vitamin D levels are more likely to feel pain and sometimes need greater amounts of pain-relieving medication (analgesics), than people with high levels of Vitamin D.  My onco told me that, too.  She's really good.

    otter 

  • carol1949
    carol1949 Member Posts: 562
    edited January 2010

    I was so fortunate that my oncologist was a personal friend of mine for 6 years prior to my needing her medical services.  Therefore, I never felt like we had a lack of communication.  One week, I wasn't even scheduled to see her, but she noticed I was in the chemo room and asked to have me brought back to her!

    One of radiologists was also very open to holistic approaches and told me he had seen miracles when he nothing left to offer the patient. 

    I don't think I do anything extreme, therefore, I really feel what I am doing is complimentary to the traditional things.  I basically take vitamin E, which has been shown to reverse nerve damage in stroke patients, vitamin  d3, B complex, (which my oncologist suggested to take 2 a day for the aches and neuropathy) , and the Lugol's iodine, (6 drops per day). 

    Find what you are comfortable with and go forth with assurance from whoever or whatever is your source of strength.  For  me, I am a Christian, and the Lord is my strength.  

  • LeggyJ
    LeggyJ Member Posts: 726
    edited January 2010

    Your not alone. I did 8 rounds of TAC, and had 5 to 7 neulasta shots, after each round.  There were days, when I could barely walk, and I have dog.  Once I got two blocks, and thought I would have to call the police, to give me a ride back home.  I made it home, eventually.  Now it's been just over a year, since treatments, and had to have a bone scan, because of wide spread pain.  I must have lit up like a Christmas tree.  Multi focal degenerative arthretic changes, from head to toe, since my first scan, prior to chemo.  But no cancer!!!  I'm also, getting older(53yrs.old), and they just had to say age related arthritis...it also, runs in the family. But, I think the chemo. really jump started the arthritis. Walking helps me.  Hope you feel better, soon.

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