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Posted 8/25/2012 10:20 PM (GMT 0)
  

   I had bilateral mastectomy Oct. 2011. Stage 1 cancer with no lymph node involvement.One test was er pos. and the oncotype DX was neg. Made it through 3 chemo treatments and could not do the 4th. Took arimidex for 2mo. and had lots of bone pain, esp in hips and chest area. Stopped that and was on tamoxafin from June 2012 till Aug. 4th 2012. stopped that also because of chest pain and also hip pain. Saw my surgeon last week and was told she never heard of anyone having this kind of pain. She did say, "cutaneous sensory nerve pain". I googled it and found articles on Post Breast Therapy Pain. I cannot believe that my surgeon never heard of this. My oncology nurse also told me I should not be having this kind of pain! I see my oncologist in two weeks and am trying to find out about this syndrome. Since stopping tamoxifin I have decreased pain pills to 1/2 a pill at bedtime. Taking advil to somewhat control the pain. Any help will be greatly appreciated.

sam10   

Posted 8/26/2012 8:04 AM (GMT 0)
Just a quick question do you have ay other illnesses ... I have fibromyalgia and chostocondritis in my chest. have had 11 ops over the last 20 years and after every op my nerves around the op go into over drive can't stand anything touching the area .. Nightmare unless you are a naturist... Am in chronic pain for weeks and my scars don't Heal well my gallbladder scar is 7 years old and is still raised purple andlumpy and still I have days when it is sore to touch. I have to have a biopsy for breast cancer on Tuesday. If I get a positive result for bc am dreading treatment more than the cancer as I am super sensitive to many meds and if I have to have op I know the pain will be horrendous for me. Hope you find out what your pain is and get something for it good luck xx
Posted 8/26/2012 4:14 PM (GMT 0)
thank you for your reply. yes, I have neuropathe in both feet, but am not diabetic. from what I have found in articles online I have cutaneous sensory nerve pain syndrome which translates into nerve damage from the mastectomys.
My prayers are with you and hope you can find relief. also that the biopsy will be neg. for bc. I also get reactions to lots of meds and a lot of drs. don't really believe that. Having a good day so far, the worst part of the day is early evening .

good luck to you
Posted 8/31/2012 11:45 PM (GMT 0)
I didn't tolerate any of the anti-hormone meds either, tried all 3 aromatase inhibitors and tamoxifen. I felt like I was 110 because of the arthritis-like pain. Docs all the time say they have never heard of it, but it's not true. It's well known. Univeristy of Pittsburgh has a study going on now. It's worse in older women.

I'm "going bare" now, getting blood tests at least twice a year, mammo annually.

I didn't need chemo, radiation left me with cooked lymphatics on one side. I needed physical therapy to break them up. It did help!
Posted 9/1/2012 1:22 AM (GMT 0)
thank you for your input. I live in the pittsburgh area and my onco is from pittsburgh.I will be sure and tell him about the study at the university of Pittsburgh. See if he knows anyhting about it !ha

sam10
Posted 9/2/2012 12:21 AM (GMT 0)
The doc doing the study is Josie Van Londen. I don't know if she's at MaGee or Presby. I went as a patient to give input at a meeting last May at the Kaufman Building.

My doc is with AGH. Actually, he retired and I have yet to meet his replacement, but he's supposed to be very good.
Posted 9/3/2012 12:51 AM (GMT 0)
 

        alci, thank you for the doc's name and where she is affiliated with.I tried the capzian ointment that was recommended in one article, now i'm itching plus the pain. I should have known better than to try it !

I see you are a veteran member. when were you first dx. when do you see your new doc? hope you are doing well.

sam10

Posted 9/15/2012 1:33 AM (GMT 0)
 

        saw my oncology doc yesterday.He increased the neurotin to 1600mg.per day. also I read somewhere on this forum about gradually buiding up the tamoxifen. starting 1/2 dose for a week and then gradually getting up to the 20mg. At first he said that would not work, but then he told me I could try that! I also asked him if he new Dr. Josie Van London and he said yes and she would be someone I should see.He also said he has never seen bone pain in anyone taking tamoxifen before ! I am feeling so much bette rsince stopping that drug. Really didn't get very positive vibes from my visit. I'm praying for each of you out there and hope that somehow we can help each other and get on with our lives,. I hate it that I can't wear a bra or the prothesis because I too cannot stand clothing touching my skin. Have been using biofreeze and that helps too.

God Bless to all

sam10 turn

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