Enbrel, Remicade, Humira

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Hi Ladies,

I know there are some of you out there with rhuematoid arthritis, psoriatic arthritis and perhaps also Crohns.  I need some input regarding the above TNF blockers.  Sorry this is long.

I have psoriatic arthritis (diagnosed at the same time as my breast cancer in 2004).  I have been on TNF blockers for almost one year.  I started on Remicade and I am now taking Humira. Although I am not totally pain free, I am the best I have been in a long time.

My problem is that I have moved interstate for the second time in two years and I have a new rheumatologist.  She is quite concerned that I have been started on these medications because of my breast cancer history.  I know the TNF stands for tumour necrosis factor.  So basically these medications block that part of the immune system that kills tumours.  

My rheumatologist in Perth did not start me on these drugs but said he would consider it down the track.  My rheumatologist in Hobart started me on Remicade and explained that there was a "theoretical" but "unproven" risk to people with a history of cancer.  I thought the risk was small and the potential for improved QOL was large.  

My new rhuematologist in Brisbane said if I was "her sister" she wouldn't have me on these drugs.  She said the risk is "not small".  She also so kindly (NOT) told me that breast cancer is one of the worst cancers you can have for it "coming back" and that if mine came back while I was on these drugs it would probably go beserk. GEE!!  That's great to know.

I am not a prolific poster here, but I visit often.  This issue has been bugging me for about six weeks.  I see my new oncologist for the first time in about 10 days for my six montly checkup.  I spoke to my oncologist in Hobart when I first started Remicade and she didn't seem too concerned (she is a bit dipsy though).   

I know some of you take these medications.  What have your rheumatologist and oncologist said on this matter?  I am so frustrated and worried about this.  I am not so much worried about the cancer coming back but more worrried that I will lose access to these drugs.  They are very expensive and tightly administered by the government.  I am lucky that I have them.

I am not being flippant about my cancer history.  I have twin boys aged nine and I would never forgive myself if I had put myself at risk.  However psoriatic arthritis is a miserable disease also and this goes to the quality of my life.  If the risk is real I will stop, but I need to know that is a real and significant risk.

Just to add another complication into the mix, I am soon to undergo surgery for possible thyroid cancer.  Sorry that was a whinge, I am here for information not to whinge.

Any advice greatly appreciated.

Thanks 

Sandy 

Comments

  • M360
    M360 Member Posts: 356
    edited December 2009

    SandyAust,  I found your post by accident looking to research the same worry.  I was wheelchair bound and had 10 surgeries down to the bone.  I couldn't button a button or zip a zipper.  Four years ago after trying everything else, I was put on Enbrel 50mg injections every third day.  I got my life back.  No longer need wheelchair and have not needed another surgery since.  It has gave me my life back and now I drive.  I am a single mom with teenage daughters.  Many years ago I had a pituitary tumor that went away somehow and left and empy cella.  I also had tumors that we not cancer in my uterus.  But no one in my family on either side had ever had cancer.  They died from heart problems and clotting problems from anticardiolipin disease.  Which I also have.  My doctors and I weighed the situation and I wanted to give Enbrel a try.  I'm allergic to all Sulfa Drugs so Remicade was out, as were so others.  I love my Enbrel.  However, I was recently diagnosed with IDC, breast cancer.  They said surgery to remove breast.  But I chimed in what about my Enbrel, doctors just looked at me so I called my rheumatologist.  She called and said stop the Enbrel immediately, so that I could have surgery.  I said I don't want to stop my Enbrel.  She said what you said above the cancer will go beserk, out of control.  Do you know that for sure.  She paused and said no, but that is what is the guidelines.  She said she would talk with researchers at the hospital and oncologist and decide.  I said I won't go back to the way I was living.  I prefer quality to quantity at this point.  Tissue tearing and not able to get up from a toilet etc, is something I don't want to go back to.  So I'm at the stage of what to do?  How will me staying on my Enbrel, effect the cancer, truthfully.  I want the data and reality not just an opinion. If I choose the Enbrel path,  what is my prognosis?  My doctors told me I would have to sign a medical treatment plan saying that I know that this is against the parameters of the medication.  But they would allow me to stay on it.  Also that I would not sue the hospital if my cancer got worse.  So here I am.  Going off my Enbrel mean bedridden.  I wouldn't be able to move my ankles or foot from the brake to gas, so it would mean no more driving.  My fingers are all almost nonfunctionable they don't bend and are frozen straight out.  I have had surgery on four of them but they don't function at all.  However no one notices.  I would need someone to dress me and brush my teeth and hair.  My wrist, arms would hardly move and the pain that's a whole other story.  I won't take pain killers they just make you out of it but pain still there.  I have morphine but if I have to take in more than 5 days in a year, I ask what is wrong, what needs to change.  So what's worse Autoimmune vs. Cancer.  I think it's at what level each indiviual is at.

    The cancer isn't painful immediately.  So I don't know.  I was looking for someone, anyone who has had to make the same decision.  Or if they were able to continue their Enbrel and treat the cancer.  But no one replied.  

    If you have had any success on your treatment or found answers please let me know.  

    I hope you are better and things worked out for you. 

  • twotall2hide
    twotall2hide Member Posts: 2
    edited July 2013

    Hi Sandy~

    I will have to agree with you. I was on Enbrel for 10 + years and diagnosed with breast cancer in January 2012. Stage2b 2 Nodes involved and a lumpectomy performed. If you need to contact me, please feel free at twotall2hide@gmail.com

  • Lizardbeth1968
    Lizardbeth1968 Member Posts: 21
    edited August 2013

    Yep, on enbrel for two years and now triple negative BC with no family history. Getting by w a prednisone pack every 3 months or so.

  • Sharon1942
    Sharon1942 Member Posts: 272
    edited August 2013

    I have been on Enbrel 10+ years. I was diagnosed with ILC in my left breast in 2011. Had a unilateral mastectomy on 8/11 & DIEP reconstruction on 9/12, with stage 2 on 4/13. My Enbrel has always been prescribed by a dermatologist for skin psoriasis. It was also found to greatly relieve my psoriatic arthritis. A new dermatologist this spring brought to my attention that Enbrel is not recommended for cancer patients. However, when I got off of it during cancer treatments, my body totally broke out in psoriasis so badly I couldn't even shave my legs or wear short sleeved shirts. Plus, my body feels 100 years old without Enbrel. My medical oncologist said that because of the progression of my psoriasis & psoriatic arthritis, the benefits outweigh the chance it might keep my body from fighting off a future cancer. It is a quality of life over a quantity of life choice. I had clear margins & no node involvement so I am praying for no recurrence.

  • stillgrieving
    stillgrieving Member Posts: 1
    edited March 2014

    To all those debating whether or not to take Remicade with a history of cancer...DONT DO IT! My mom had a history of leukoplakia and oral cancer on her tongue. She was told that it was ok for her to take Remicade for her Psoriatric arthritis. The cancer exploded and she endured 2 horrific surgeries but the cancer was so aggressive she died anyways. Her doctors felt certain that the remicade caused her cancer to go "beserk".

  • kriserts
    kriserts Member Posts: 224
    edited March 2014

    I was diagnosed with RA and delayed going on Enbrel because my oncologist was worried about the risk of cancer recurrence. Then we finally connected and she clarified that she was worried about the cancers that Enbrel is known to cause, mainly the blood cancer. She indicated that I shouldn't be as worried about the breast cancer recurrence. Very confusing. I decided to go on it and yes, got my life back. However, I'm looking at the board now because there's something on my lung that "may" be a scar, but may be worse, I have to get a PET scan. If it comes up positive for cancer, who knows if there's a connection to the Enbrel? I don't think there's any way to tell, women in their 50's get both breast cancer and rheumatoid arthritis, who's to know if there's a connection.

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited March 2014

    there is an increased risk of lymphoma in people with RA; there have been papers also linking RA, and other autoimmune diseases, with other cancers.  However, after adjusting for the risks of cancer and the disease process, there has been very little evidence of risk of cancer from the drugs themselves.  The exception is non-melenoma skin cancer, which is easily treatable.  Most physicians are beginning to believe the risk of cancers is due to the underlying condition and not the treatments.  The main worry with biologics is infection, as simple infections can be exacerbated because of the suppressed immune function when taking these treatments.  These drugs have been studied/used for over 10 years now.

     For me, I am more worried about disability from my disease (PsA) than I am future cancer ... But just as with cancer diagnoses, we all have different risk, and pain, tolerances.  I am grateful that for now, Enbrel works well for me with very few obvious side-effects (except bruising at my injection site).    Good luck everyone.

     www.rheumatology.org/ACR/publications/dsq/dsq_2012...

  • Dacamcfly
    Dacamcfly Member Posts: 1
    edited July 2014

    I was on Humira for 2 years and 2 months then dx with Triple Negative Breast Cancer.  No family history of any cancer.  I do not think there are enough warnings regarding malignancies.  The black box warning:

    Malignancy

    lymphoma and other malignancies, some fatal, reported in children and adolescents treated w/ TNF blockers; post-marketing cases of fatal hepatosplenic T-cell lymphoma (HSTCL) also reported in Crohn dz or ulcerative colitis pts, mostly adolescent and young adult males receiving concomitant azathioprine or mercaptopurine; uncertain whether HSTCL related to TNF-blocker monotherapy or in combo w/ other immunosuppressants


     

  • tanyarocks30
    tanyarocks30 Member Posts: 68
    edited January 2016

    i have been on enbrel for 10 yrs+ and was just diagnosed with atypical HYPERPLASIA with high risk dcis. Having bmx/diep feb 18 and stopped taking enbrel mid dec. And so starts the stiffness etc.

    Neither my surgeons nor my rheumatologist have mentioned the enbrel causing any of this or insinuating that my cells will go crazy if i stay on enbrel. I meet with my rheumatologist jan 25 to discuss my upcoming surgery......and my possible return to enbrel. I will see rheumy after full pathology comes back.


  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited January 2016

    The only malignancies that are included in the black box warning are non-melanoma skin cancer and lymphoma and these are very rare. There have been many studies showing correlations with a multitude of malignancies and the autoimmune diseases -- because cancer cells thrive in a background of inflammation (risk for colon cancer in people with ulcerative colitis and crohns is very high). Reducing the inflammatory response (which is what these drugs do) actually should reduce risk of many malignancies. http://www.discoverymedicine.com/Sasha-Bernatsky/2...


    I am on Cimzia now, and don't feel worried at all about it increasing my risk of recurrence, or new cancer (http://www.medscape.com/viewarticle/832427)

    However, it is necessary to stop TNFa treatment before any surgeries, because you don't want to risk an opportunistic infection.


    Best of luck to you, for both of your diseases :(

  • tanyarocks30
    tanyarocks30 Member Posts: 68
    edited January 2016

    I broke down and shot my last Enbrel prior to surgery. I have been off since mid December as we thought my bmx/diep would be in January (not till feb 18). I couldn't stand it anymore. i asked my rheumatologist about Enbrel post surgery and she said i will be fine to go back on it. my chance of recurrence/new is the same as someone who is NOT on Enbrel. i look at it like people still get lung cancer who don't smoke.

  • dtad
    dtad Member Posts: 2,323
    edited January 2016

    Hi everyone. Not sure if there is a connection between these drugs but.... there is definitely a connection between inflammatory disease and breast cancer. Would love to know how many of us also have autoimmune disease. I have an autoimmune peripheral neuropathy caused by Celiac disease which is also autoimmune. Diagnosed with bc 15 years after.....

  • atd99et
    atd99et Member Posts: 1
    edited August 2017

    Hello all,


    I am 35 with triple negative breast cancer, stage 2A no lymph node involement. I had a double mastectomy and chemotherapy, no radiation.

    I also have AS, autoimmune arthritis of my spine. Enbrel was my life before and I had to be off for cancer treatment. Talking with my Rheumatologist about getting back on now for quality of life.Curious of updates to your stories?

  • TJKountouris
    TJKountouris Member Posts: 2
    edited October 2017

    Dear Sandy I am thyroid cancer survivor 2014 was my operation I was using Enbrel weekly since 2002 I found the thyroid cancer myself was 5 cm on the left love with extrarthyroid spreding I undergo iodine 131 radiation and high thyroxine 150 weekly plus 200 on weekend , I do have ankylosing spondylitis since 1984 when I was 24years , they are no safe the TNF blockers after cancer they stop those for 5 years , my doctor wrote me Enbrel is not safe , I use sulphazaline ams Celebrex 100 but I do also miss the contr out of ENBREL , If you will undergo operation for thyroid cancer stop using TNF blockers many Professors tell me this, thins medicine can cause trouble cancer is d

  • TJKountouris
    TJKountouris Member Posts: 2
    edited January 2018

    they are all dangerous and none of this drugs shouldn’t be on the market FDA is aware of the harm they cause but still are out there , stay out of them , cancer they cause yes they do are no safe in my case I notice double Prostate PSA enlarged from 2.25 to 5 in two weeks of treatment with Enbrel, HUMIRA is also same , it is hard to have those disorders and i do best look for other alternative try capsule turmeric some supher medications methotrexate is very toxic but ask your doctor , if possible no use any of them

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