6 months post chemo. and alot of pain

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  • jnl
    jnl Member Posts: 3,869 Member
    #22
    Heatherbelle said:

    im looking for a new oncologist i think..
    Thank you all so much for sharing your experiences with me, or for just caring. This pain really intensified, so much so that I was in to see my oncologist on tuesday, and was calling them back yesterday. I was crying, I hurt all over. I called my oncologist to tell them that the pain was unbearable, and that the ibuprofen + tylenol combination he suggested was not controlling or even lessening the pain. When the nurse called me back, after talking to my oncologist, she said that he told her "I dont know what is causing the pain, I can't help you with it. You need to see a pain management specialist." The nurse said she could set up an appt for me & would call me back today. Well, this morning I got the call that they have an appt set up for me with this specialist-more than a MONTH away. So I'm supposed to suffer until then? I will NOT accept this. I've asked my dr twice about tamoxifen being the cause & was shot down right away - no, that doesn't cause this. Well, I'm 35, I was the youngest person in the infusion center, probably one of the youngest patients my doctor has had. Perhaps I'm just not tolerating this drug very well?
    Yesterday I had my nipple reconstruction done. I had to take a sleeping pill last night because I haven't been able to sleep well at all, and with my breasts being sore & tender I knew I wouldn't sleep, so I took one of my sleeping pills. I fell asleep without taking my tamoxifen. And I woke up this morning feeling at LEAST a 50% improvement in my pain. I noticed it the moment I got out of bed. I don't think it's a coincidence. So, today I'm getting recommendations for another oncologist. Preferably a younger, female one. Definately a more open-minded one who will give me the respect and recognition that I deserve. I have specific questions regarding tamoxifen, it's side effects, what exactly are the odds that it's giving me regarding a reoccurence, will i have the same odds if I have my ovaries removed? I've already had my tubes tied -im not having any more kids, I'd rather just have them out anyway, my tumor was ER positive (VERY slightly, 1-4%). So I have quite a task ahead of me, thank you all again for your advice, and support, and your experiences. I will keep you updated on my progress :)
    *hugs*
    Heather

    I wonder if tamox is doing
    I wonder if tamox is doing this to you, since you already felt better by not taking it. Good luck Heather with a new oncologist.


    Hugs, Leeza
  • NCaliNHLWarrior
    NCaliNHLWarrior Member Posts: 8
    #23
    @Heather-6 mths Post Chemo and alot of pain

    Heather-I just wanted you to know you are not alone! Im two mths out of Chemo and have been experiencing the same thing.Im 43 feeling 83.I just recently told my primary Im not going to debate this any longer.My body was completely devistated.As they all have no idea whats causeing this and look at me as if Im crazy.Im not crazy.Just worn out.There are just too many of us anyway.I keep reading the same thing over and over.Keep smileing! Sending Love n Light

  • jerseygirl231
    jerseygirl231 Member Posts: 178
    #24
    I am sorry about your pain

    I have pain also very bad . I been told it not the chemo or meds of AI`s. I been to two pain management doc both were jokes. I have not in this much pain before the treatment i been through for this beast. I found that turmeric has help me a bit in dealing with the pain but i still feel it I wish I would have a pain free day. I hope you can an answer to your problem.

  • GwenJ0113
    GwenJ0113 Member Posts: 1
    #25
    Pain post Chemo

    Heatherbelle, I totally feel your pain. And hope everything is much improved for you now.  I am 7 months outside of chemo (taxotere) and am having so much pain. On that pain scale, I am a 5 though I have a high tolerance for pain. This pain, which is so similar to yours, started about 3-4 months outside of chemo. I've been told carpal tunnel then later chemo-induced arthritis. And I have recently made an educated guess at DeQuervain's tenosynovitis (if the doctors can guess, so can I). I can't make a tight fist and my thumbs does not bend without help. Pain had been so intense at times, especially at night and when I get up in morning. I agree with you in that I am not going to just accept this is the new way it's going to be. I didn't have this problem before. I have gone through different treatments Rx and OTC which were either temporary fixes (as long as I was medicated) or I stopped taking because I feared the SE. I am now trying to wrap my hand and arm at night (learned from the lymphodema treatment) and splints in the day. Also using the exercise (stress) ball (actually the heart shaped stress ball works better) to keep my hand and fingers somewhat flexible. The pain has decrease but it's still too early to tell if this is a fix. Also, I am not on tamoxifen or any other after-chemo medication. Also note-this is my second battle with breast cancer and I did not react to AC like this, even though I was over 10 years younger then. 

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