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    Topazcat wrote on Tallgrass69's wall

    I have stage 4 Inflammatory Lobular Breast cancer. Found out a month ago that it has spread to the bones. It is now in my entire spine, back of the skull, left leg, pelvic bones, and ribs on left side. Please do not give up. Let's fight this together! I am also scared and trying to keep my life as normal as I can while I continue to fight this cancer. Please keep in touch and we can be there for each other!!

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    • Tallgrass69's Avatar
      Tallgrass69

      Hi Topazcat Nice of you to write me I really mean that. Today I went to Sarasota=425miles forth and back my onco sent me there cuz the cancer is growing back I am ER+ & PR + He has a new drug that helps patients with this He thinks I'm too far gone to participate plus I would have to drive 425 everyday . He also said I need chemo. I have been fighting since 2008 first dx BC stage 3/4. He adviced me that I hadn't got the right Tx from the begining. It was awful at first because u no nothing and they know that so mybe not all but my Dr's din't educate me at all. They would just say It's up t you Debbie. Now I'm told to go back to my latest Onco and get on chemo again. I'm sorry to hear about you're situation And I do think we need and can benifit from each other. This was a reall trying day but I' glad that you took the time to write me. Good Night my friend

      almost 4 years ago
    • Blue's Avatar
      Blue

      How are you managing the pain from the cancer spread to your bones? Do you have pain in your spine? I do and it's getting worse. Good luck with whatever meds you are taking. Please let us know if you land on a good one.

      almost 4 years ago
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    Topazcat asked a questionBreast Cancer

    METS to discs in spine, pelvic bones, and suspicious lesions in abdomen. What should I do next?

    • carm's Avatar
      carm

      Topazcat,
      Hello, I am an oncology nurse and I think there is a good reason for you to go and get copies of thos PET scans and see for yourself if they are showing a malignancy or not prior to that MRI. Normally mets to the bone clear very easily. I am here all the time should you need any help with reading those PETs or with any questions you may have. Best of luck to you, Carm RN.

      almost 4 years ago
    • ArleneB's Avatar
      ArleneB

      I too have breat cancer that has metasticized to my bones - two broken hips, six broken ribs and four broken vertebrae. By the time I was diagnosed in June 2012, it was in my bones. I too had scans and X-rays for months and was told there was nothing wrong with me. I changed docs and she found my cancer on the first visit. I know how bad your pain is - I have a Fetanyl patch, take oxycontin and oxicodone. I have had six rounds of chemo and take a once a month infusion of Aridia to strengthen my bones. I am still angry at the first doctors who missed all my signs and finally told me I was a "drug seeker and crazy". My back pain is sometimes unbearable! I don't know how long we can live with these mets but I hope it is a long time. Is your pain under control now? Make sure you let your doctor know how your pain is as there are plenty of meds out there. Good luck. You will be in my prayers. How old are you? I am fifty nine and live in Austin, TX.

      almost 4 years ago
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    Topazcat shared an experience

    Oh No (Cancer is back/Recurred ): In October 2011 I was told there was know evidence of cancer. I continued to get PET SCANS every 6 months. In October 2012 I started getting hip pain and low back pain. My onc had an X-Ray done and said it was mild arthritis. In January I had another PET SCAN and it showed some uptake in low back and hip consistent with mild arthritis. By April the pain in my hip was so bad that I could not sleep until I was exhausted. The onc put me on oxycodone and said he would do PET SCAN in July. On may 28th I went to my primary doctor's CNP and she scheduled an MRI with contrast for the next day. It showed numerous lesions in the spine. I just came back from Mayo Clinic in Rochester. They did a biopsy and it is cancer metastasized from The Inflammatory, Lobular Breast Cancer I was diagnosed with in Nov 2010. Mayo also did Ct Scans and found lesions in the pelvic bones, possible lesions in the abdomen and multiple lesions in the discs of the lumber, sacrum, and thoracic spine. They told me that not all cancer shows up on PET SCANS and that the mets has been there for months. Plan is to do monthly IV infusion, take me off the Armidex and put me on med like Arimadex and give me something to strengthen bones. Also had cortisone injected into hip area and will be getting it also in lower back. They said more Chemo would be saved for later. I will be doing my infusions in the small city I live in but following up with the onc at Mayo Clinic. I am confused, scared, and so angry that my onc did not listen to me in Oct, Jan, or April! Anyone have any advice as to what I should do? What has worked for others? How long can I lives with mets to the spine and pelvis? Help, please.

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    Question: Skull metasteses

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    Topazcat wrote on Roo's wall

    Hi, I am glad you found this site. It is very informative and also uplifting. The people on here are great. I also have IBC and was diagnosed November 2010 with stage IIIB. Ley me know if I can be of any help to you. It is so much easier to deal with when you have others to talk to.