Breast Cancer and TNF blockers

SurvivorX2
SurvivorX2 Member Posts: 1
edited March 2014 in Breast Cancer #1
I am a two time breast cancer survivor (2003 and 2010) facing a difficult decision. In 2008 I was diagnosed with a rare and particularly aggressive form of rheumatoid arthritis, Palindromic Rheumatism that persists today.

Unlike regular RA, this one does not cause joint damage but the attacks are more frequent and more severe. Without medication I am in extreme pain and nearly invalid. I've tried every medicine we can find but nothing works, so now I'm down to the new biologics. Because the bioogics can cause lymphoma, I am really struggling with this decision.

To summarize, biologics work with "...TNF blockers that target and neutralize tumor necrosis factor-alpha (TNF-α), a protein that, when overproduced in the body due to chronic inflammatory diseases, can cause inflammation and damage to bones, cartilage and tissue. The drugs in this class include Remicade (infliximab), Enbrel (etancercept), Humira (adalimumab), Cimzia (certolizumab pegol) and Simponi (golimumab)...An analysis of U.S. reports of cancer in children and adolescents treated with TNF-blockers showed an increased risk of cancer, occurring after 30 months of treatment on average. About half of the cancers were lymphomas, a type of cancer involving cells of the immune system. Some of the reported cancers were fatal." This was taken from an FDA website warning and there is no real data for adults--or breast cancer survivors--since the drugs are so new, so we must assume the risk is present for us as well.

My question: has anyone else faced this problem? Does anyone have any information or personal history they can share with me? I could really use some additional information to consider.

Comments

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #2
    Welcome
    I don't have any experience with these drugs or RA, but just wanted to welcome you here, say how sorry I am that you're facing such pain and difficult decisions, and bump up this post for others -- has anyone else out there taken Enbrel, Humira, Simponi, Remicade, or Cimzia?

    Traci
  • Sher43009
    Sher43009 Member Posts: 602 Member
    #3
    Sister
    My sister has RA (not sure which kind, but has joint disfigurement). She was dx when she was 35 years old, she's now 53. She's had 5 joint replacements, been on Enbrel, that didn't work too well, then switched to Humira. She's been on that since it's been approved and it is helping but has not put it into remission. She's on full disability as she can't work, and on heavy pain meds. Pain meds effect those with cronic pain differently then those who don't so she can still function. Thankfully so far she has not had any cancer. As you know there is no cure for RA and her feeling is life quality vs. quantity. She's a real inspiration to me for she doesn't let this stop her. She is a wonderful cook, volunteers at her church and library.

    I hope this helps
    Sher
  • heidijez
    heidijez Member Posts: 441
    #4
    diagnosed over10 years ago with RA and 6 soft tissue and muscle
    was diagnosed over 10 years ago with RA and 6 soft tissue and muscle diseases. have been on enbrel for more than 9 years - it truly was a miracle drug for me, gave me my life back. was on remicade for a while, but that drug almost killed me.

    when i found the swollen lymph nodes last november, my mind immediately went to lymphoma (one of the possible side effects of enbrel) according to my team of doctors there is no connection to my rheumatoid arthritis and the cancer i am currently dealing with (inflammatory breast cancer and triple negative)

    not sure what other information i could offer, but am certainly willing to share MY experiences. good luck to you and remember, i am here for you if you need me.
  • Kelly K
    Kelly K Member Posts: 1
    #5
    TNF blocker not recommended by my rheumatologist
    I just returned from an appointment with my rheumatologist yesterday... she is treating me for rheumatoid arthritis, Sjogren's Syndrome and fibromyalgia. Last month I had a lumpectomy which showed precancerous cells in the breast tissue. My rheumatologist was going to put me on a TNF blocker but, because of the results of my lumpectomy, she would not go that direction. She is very concerned with the risk of malignancy associated with TNF blockers (as am I). I certainly understand the pain associated with RA and the hope for potential relief from a TNF blocker (I was a bit discouraged knowing that isn't a path I can travel down at this point). I have great respect for my rheumatologist and trust her lead in this. So, for now I continue on with my current (less effective) medications... trusting my rheumatologist's caution and pressing on...
  • insen
    insen Member Posts: 1
    #6
    Kelly K said:

    TNF blocker not recommended by my rheumatologist
    I just returned from an appointment with my rheumatologist yesterday... she is treating me for rheumatoid arthritis, Sjogren's Syndrome and fibromyalgia. Last month I had a lumpectomy which showed precancerous cells in the breast tissue. My rheumatologist was going to put me on a TNF blocker but, because of the results of my lumpectomy, she would not go that direction. She is very concerned with the risk of malignancy associated with TNF blockers (as am I). I certainly understand the pain associated with RA and the hope for potential relief from a TNF blocker (I was a bit discouraged knowing that isn't a path I can travel down at this point). I have great respect for my rheumatologist and trust her lead in this. So, for now I continue on with my current (less effective) medications... trusting my rheumatologist's caution and pressing on...

    breast cancer and enbrel

    Dear Kelly,

    I know what you are going through. I have a fairly healthy lifestyle and no family history of breast cancer, yet was recently diagnosed with Stage I breast cancer.  Had to go through lumpectomy, 12 rounds of chemo and radiation, and now Ihave couple of rounds of herceptin chemo to go through.  Also I just started tamoxofin.  It is physically and emotionally draining.  I have  RA, and for the last 7 years been on enbrel.  I did feel great, but now I feel and my oncologist thinks that perhaps enbrel had a role, as Enbrel is a drug where the immune system is compromised.

    I am glad that you have such a wonderful rheumatologist.  Yes, do follow her advice.  My rheumatologist also wants to be in an another drug possibly plaquinil..but he told me that this will not be that effective.  What medicine are you on?  While I think I am incredibly lucky that I accidently found this small lump,sometimes  I do have the 'why me syndrome'!!!  I was hoping that one could control RA by just diet and exercise.  My rheumatologist shared with me that there is no such thing.  It could work for some time, but then will not work for after a while..so hoping for the best for the coming years. 

    When you have a chance, please let me know what medication you are in for your RA.

    Take care.

    IS

     

     

  • mcfallsa
    mcfallsa Member Posts: 1
    #7
    Humira and Breast Cancer

    I started Humira August 2010 for Ulcerative Colitis.  In October 2012 I was diagnosed with Triple Negative Breast Cancer, with absolutely no cancer in my family.  I was told by my gyn and my gastro doctor to immediately stop taking the Humira. I underwent 16 rounds of chemo, a partial mascectomy and 7 weeks (35 days) of radiation. Can anyone share a similar situation? 

     

     

  • LisaGW
    LisaGW Member Posts: 1
    #8
    newly diagnosed and took humira

    I took humira for 12 years which put my RA in remission. I was diagnosed with breast cancer last week. Have not met with my rheumatologist yet. My surgeon thinks I can continue to take the humira but I am afraid to. 

  • DaraB
    DaraB Member Posts: 5
    #9
    Psoriatic Arthritis

    I have psoriatic arthritis and delayed taking a biologic because I have such extensive cancer in my family.  Finally last year, my doctor prescribed Otezla.  From my research, I don't think it's a TNF bloocker, but does change the cellular structure of cells.  The day I got my breast cancer diagnosis, I stopped taking the drug.  It has been a miracle drug for me, but I just worry about the cancer effect, especially since it is so new.  I've had 5 joint replacements, including a foot reconstruction that has now fallen apart again.  It's so frustrating to have to deal with conflicting treatments!  If anyone has other suggestions, they are appreciated!

  • SDCA76
    SDCA76 Member Posts: 5
    edited July 2016 #10
    Humira and Breast Cancer

    I was on Humira for many years (over 10?), starting as a study patient, for psoriasis.  The drug was extremely effective.  After being diagnosed with breast cancer a year ago, I stopped taking Humira on my own because of the TNF blocking effect and effects on the immune system.  While no one has said there is a definite connection, my limited knowledge makes me curious. My cancer treatment included immunotherapy.  My doctors cannot give me a definitive answer as to what to do or if I should resume Humira, but they seem resistant to the idea.  Meanwhile, my psoriasis has flared after no systemic treatment for a year.  Topical treatments are not very effective.  I look forward to hearing any solutions others may have discovered for this difficult problem and decision.  I just recently heard about Otezla but have not asked my physician about it. My cancer therapy will be finished within this month. 

  • MeToo2
    MeToo2 Member Posts: 3
    #11
    LisaGW said:

    newly diagnosed and took humira

    I took humira for 12 years which put my RA in remission. I was diagnosed with breast cancer last week. Have not met with my rheumatologist yet. My surgeon thinks I can continue to take the humira but I am afraid to. 

    Cimzia - cancer

    Hi There, I'm also a newly diagnosed breast cancer patient who also has been on an autoimmune drug Cimzia for my Crohn's disease. It has been GREAT for giving me back a 'normal life' again about 5 yrs now. But I have now been told I have breast cancer. The Doctors, GI & Oncologist will NOT take a stand on whether I should continue taking Cimzia! I'm terrified of continuing Cancer risk, yet don't want the diarrhea, to come back with a vengeance! HOW are you doing? What are you taking now?

  • MeToo2
    MeToo2 Member Posts: 3
    #12
    mcfallsa said:

    Humira and Breast Cancer

    I started Humira August 2010 for Ulcerative Colitis.  In October 2012 I was diagnosed with Triple Negative Breast Cancer, with absolutely no cancer in my family.  I was told by my gyn and my gastro doctor to immediately stop taking the Humira. I underwent 16 rounds of chemo, a partial mascectomy and 7 weeks (35 days) of radiation. Can anyone share a similar situation? 

     

     

    Cimzia - like Humera- for Crohn's disease

    NOW I'm also dealing with breast cancer! What DID you decide to do about your meds? MY Doctors are hesitant to SAY to stay on Cimzia or to go off now! Very frustrating!! It's as if they want me to choose my worst enemy ... yet I already have BOTH!!!

  • MeToo2
    MeToo2 Member Posts: 3
    edited October 2016 #13
    SDCA76 said:

    Humira and Breast Cancer

    I was on Humira for many years (over 10?), starting as a study patient, for psoriasis.  The drug was extremely effective.  After being diagnosed with breast cancer a year ago, I stopped taking Humira on my own because of the TNF blocking effect and effects on the immune system.  While no one has said there is a definite connection, my limited knowledge makes me curious. My cancer treatment included immunotherapy.  My doctors cannot give me a definitive answer as to what to do or if I should resume Humira, but they seem resistant to the idea.  Meanwhile, my psoriasis has flared after no systemic treatment for a year.  Topical treatments are not very effective.  I look forward to hearing any solutions others may have discovered for this difficult problem and decision.  I just recently heard about Otezla but have not asked my physician about it. My cancer therapy will be finished within this month. 

    Brave of you to take yourself off the Humira !

    I'm hoping your cancer treatments are ending well for you!?  Any more worsening autoimmune symptoms since you went off Humira drug? I'm very afraid of doing that, because the diarrheal consequences of doing that make daily life horrible! I already have both diseases but suppose the cancer getting worse or spreading is worse than diarrhea all the time!?! Life ceases to be fun either way!

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