Autoimmune Disease and Breast Cancer

bbarna
bbarna Member Posts: 12
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I have Lupus,Sjogrens and Fibromalagia. Had a masectomay and chemo and am finished with chemo as of Feb 2011. My hair is starting to come back. However, I have had such terrible joint pain and bone pain along with terrible bouts of fatigue. I have elected to not take either the Arimedex or the Tamoxifen now as the Arimedex gav me this terrible pain and was to subside after getting off of this drug. It has not. My radiologist put me on Lyrica which seemed to help a bit but I am still having alot of pain. I take only tylenol extra strength or Advil. Does anyone else have these symptoms. I was diagonoised with Invasive Lobular Cancer. Had 5 lymph nodes removed and am having alot of pain and numbness in two of my fingers.Would love to hear from others going through breast cancer and dealing with autoimmune diseases too.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    bbarna:

    I have had 2 - 3 autoimmune issues in my life.  The first was tuberculosis in 1963 - 1964.  I've had a lifelong one with psoriasis - was treated at Johns Hopkins for more than 20 years and I also have osteoarthritis.

    As you can see, I'm stage IV.  I usually know when the chemo I'm on has reached the end of the line before scans or TM's because the psoriasis starts to come back.  If I'm on a good chemo that's working, it totally goes away.

    Generally, psoriasis results in the body producing too many cells that are (usually) non-invasive.  Cancer produces too many cells that are invasive.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2011

    nurse-ann, I find your comment about the psoriasis quite interesting. I have eczema, and had not had a break out with it since my lumpectomy, radiation, and chemo till till about 2 months ago. I am on Femara still but that is all.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    Kira:

    I'm not as familiar with eczema but for me the psoriasis is a barometer.  I've had three Onc's - the first one was really interested in this - the other two totally ignore me when I talk about this.  In your case, the chemo may have kept it at bay for a while.

    At Hopkins, I was on PUVA treatments.  It's a pretty old treatment.  You take a plant based drug called Oxyoralen Ultra 1 hour before treatment and you have an ultra violet treatment for a very brief time and this managed the psoriasis.  Once under control, I only had to go once a month in the summer and maybe twice a month in the winter.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2011

    nurse-ann, Interesting treatment. I've been on Triamcinolone Acetonide for about 9 years now. I only use it when I have a break out. What I find interesting is it's always the same places I break out. When it first hit me I was completely covered with it. I don't quite know how to explane it, but when I am about to break out I get huge black and blue markes all over my body. My Dr's have never understood they just look at me like I'm nuts.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    There are a lot of theories about psoriasis just like BC.  One of the theories on psoriasis is that it occurs in areas that suffered trauma and/or injury.  That doesn't seem to be the case with me and I've never believed this theory.

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  • navygirl
    navygirl Member Posts: 886
    edited June 2011

    bbarna, I've not been diagnosed with an auto-immune issue, but I can tell you I've had symptoms since I finished chemo in November of 2008! They tested me for everything under the sun, some of the tests showed signs of Lupus, but not enough things showed for a diagnosis. It's been an ongoing battle ever since I finished treatment. The only time I've had a total absence of pain, was when I was put on 2 courses of steroids about a year and a half ago for another problem. About 3 days into the steroids, my joint pain was gone. It stayed gone for about 3 weeks. My Dr.'s basically scratch their heads and say "don't know". I hate living in the land of the unknown, but I don't know that they will ever figure out what the treatments triggered with my system.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2011

    nurse-ann, I agree mine has nothing to do with an area that had trauma. As far as the black and blue marks, have no idea why I get them a few days before they just pop up no trauma. I think the Dr's think my DH hits me, which is so far from the case.

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  • NJMarilyn
    NJMarilyn Member Posts: 37
    edited June 2011

    bbama:

    I have DCIS and I also have systemic lupus and psoriasis.  I elected to have a mastectomy instead of a lumpectomy with radiation since radiation is contra-indicated in someone with lupus.  I have not decided if I will take an estrogen blocker.  I don't think that I will.  I have read that they can cause clots and I have tested positive for the lupus anticoagulant and the antiphospholipid antibody syndrome, which can cause clots.  Wishing you well......Marilyn

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    I think that the worst thing about autoimmune disorders (in my area at least) is that these doctors are Allergist/Autoimmune doc's.  You go into one of these offices and people are there for allergy shots.  It makes me feel like it's just a "sideline.

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  • bbarna
    bbarna Member Posts: 12
    edited June 2011

    Navygirl, I myself have been having alot of joint pain in every joint possible,more painful then before I had the chemo. I asked the doctors and they too just scratch their heads. They tell me that the chemo could not have done that to me. I do Not want to go on any more steroids, if I can help it.I also have elected not to take the hormorne inhibitors. I was on the Arimedex for 39 days and that is when the joint pain really started. The doctor told me that those symptons would go away in a couple of weeks. they haven't then I was put on Lyrica by my rheumatologist and I haven't seen any change, maybe it has gotten worse. Are you still experiencing pain in your joints? Are you considering trying another hormone inhibitor? Have the doctors tested you for Sjogrens or Fibromayalia? I wish you well!

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  • bbarna
    bbarna Member Posts: 12
    edited June 2011

    Marilyn, I am not sure what DCIS is. I too have had concerns to go back on any hormone inhibitors. I had a reaction to Arimedex and was only on it for 39 days. It gave me tremendous joint and bone pain, which has still not gone away and it has been months. I am currently on Lyrica from my rheumatologist which felt this would help and so far it has not. The pain can be so severe that I cry at times and have to crawl up the stairs. I do notice some relief if I exercise but it is only short term. I was also tested for blood clots and was told that I was a little higher then normal but it would be okay for me to take the Tamoxifin. I don't think I will. Good luck to you and I wish you well!

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  • RealtorJackie
    RealtorJackie Member Posts: 91
    edited August 2011

       I have recently been diagnosed with Sarcoidosis.  It is a rare autoimmune disease.  I was thought to have mets to the lung, because it lights up on the PET/CAT scans the same way. 

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  • donnad333
    donnad333 Member Posts: 16
    edited September 2011

    I was diagnosed with SLE at age 18 (1978) and with ILC 8/11. MRI showed wacky stuff on opposite breast. The range of opinions among the very best rad onc docs re radiation to lupus patientes blew my mind ... from NEVER, NO WAY, to NO PROBLEM.  (I work in academic medicine so I have great access.) I therefore decided on a B MIIBR, which is scheduled for 9/29.

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  • bbarna
    bbarna Member Posts: 12
    edited September 2011

    Hi all, wanting to know if any one else has experienced hot sweats after chemo and or surgery that also has autoimmune diseases. These are not hot flashes but more like sweats that come and last about 10 minutes or more. They can come and go repeatedly during the day and night or sometimes they are only a few times a day. The doctors do not really confirm this for me and I had them really bad when I was going through chemo and then I just had reconstructive surgery and they have come back again like a vegence. Any advise would be helpful. Health to you all.

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  • MrsMom2
    MrsMom2 Member Posts: 13
    edited November 2011

    Hello, I have to say I have undiagnosed Sjogrens for last 7 years and this year I have been diagnosed with invasive lobular cancer.   Wondering what the oncologist is going to say when I tell her its undiagnosed!!!  Shouldn't the chemo be different with auto immune disease??

    Hope you are all doing well...

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  • toomuch
    toomuch Member Posts: 901
    edited November 2011

    I was diagnosed with ulcerative colitis at 19yo.  I had a very bad flare 3 years prior to BC that did not respond to steroids so I was put on 6-MP for 2 years. I will always wonder if it lowered my bodies ability to keep my LCIS in check. My 0.9 cm ILC tumor extended from the LCIS. Chemo positively effected my UC and the effect lasted for almost a year. It was the best chemo SE!

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  • leaf
    leaf Member Posts: 8,188
    edited November 2011

    According to this 2004 website, the CDC estimates that about 8% of the general population has autoimmune diseases; 78% of this group are women.

    Autoimmune diseases are the third most common category of disease in the United States after cancer and heart disease; they affect approximately 5%–8% of the population or 14–22 million persons (1). Autoimmune diseases can affect virtually every site in the body, including the endocrine system, connective tissue, gastrointestinal tract, heart, skin, and kidneys. At least 15 diseases are known to be the direct result of an autoimmune response, while circumstantial evidence implicates >80 conditions with autoimmunity (2) http://wwwnc.cdc.gov/eid/article/10/11/04-0367_article.htm  (emphasis mine)

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  • bbarna
    bbarna Member Posts: 12
    edited November 2011

    Mrs Mom 2 read your post and it was very interesting to me. I too have sjogrens along with lupus and have been treated for invasive lobular cancer. Having these diseases did not seem to have any change in the way they treated the cancer. However I do feel that the chemo did create more problems and adverse reactions because of the autoimmune diseases I have. My oncologist didn't care about them and was only happy that the cancer was being destroyed even though I had alot of adverse reactions and I am still going through some now and my last chemo was Feb11. Please keep me informed how your doctor handles it. Good luck to you.

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  • Bonseye
    Bonseye Member Posts: 193
    edited November 2011

    I have Rheumatoid Arthritis and Celiac Disease...not just had a bilateral mastectomy. I haven't had my medications for two months....they slow healing and going on to chemo you need to get off the meds. I am in so much pain and they tell me that the chemo will help my RA symptoms. Praying they help as I am in so much pain at this point. 3 days until I get my first treatment and getting very nervous. I know so many people who had chemo....I shall get through this too....one step at a time......

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