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Lymphoma from Remicade?

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Posted 12/4/2016 11:15 PM (GMT 0)
I was on these forums when I had a crazy flare 3 years back. I started Remicade which got me under control. Now I have recently been diagnosed with lymphoma (the cancer which Remicade increase your chances of getting). Sucks, considering I'm 26. Starting chemo in a week or two. But hey I'm still in remission after having stopped Remicade of at least 10 weeks (I used to have it every 6). Any similar stories? Also is there a cancer forum here for me I only saw breast and prostate.
Posted 12/4/2016 11:34 PM (GMT 0)
I'm really sorry to hear that, it reminded me of a post from a few years ago that was very similar; the member had a good outcome.

She might be subscribed to the thread so maybe you could post there and she'll get an email. Her email address is not listed.

www.healingwell.com/community/default.aspx?f=38&m=3165683
Posted 12/5/2016 1:38 AM (GMT 0)
I remember you. I am so sorry to hear this shakehead. Is it HSTCL? I haven't seen anyone here with this since the person ks posted a link to. She wasn't a regular member, so she probably dropped off the forum & would be difficult to reach :(

I wish this wasn't happening to you.

There really isn't a general cancer forum here.

Reading this makes me feel very uneasy about telling people the risk is low. As low as the risk is, it's there, and the low risk means nothing if you're the person it happens to. I had surgery, and while it was the scariest thing I could possibly imagine, I am starting to think that surgery is the better option for more people. Especially after seeing your post.
Posted 12/5/2016 2:23 AM (GMT 0)
Even tho the chances of lymphoma are extremely rare, unfortunately there are some individuals who are more susceptible to it and I am so so sorry you are among them.

May I ask how you came to this diagnosis? What were your symptoms?
Posted 12/5/2016 4:13 AM (GMT 0)
I'm so sorry to hear this. The Lord be with you
Posted 12/5/2016 5:07 AM (GMT 0)
I have never been on biologics and I too was recently diagnosed with lymphoma. Specifically Cutaneous T-Cell Lymphoma which is a variant of Non Hodgkins that primarily resides in the skin (it is a blood cancer though, not a skin cancer). I am currently undergoing my staging tests.

I'm a bit older, in my 40s, but I believe that those of us with immune disfunction are more susceptible.

I believe the occurrence for lymphoma in the general population is 2.6 per 100,000.

Those who take biologics like Remicade have nearly double the risk at 4.0 per 100,000 but that has proven hard to separate from people who are generally sick with IBD as I recall.

Good luck to you, the treatments appear to be getting better all the time.
Posted 12/5/2016 12:29 PM (GMT 0)
Yikes, scary stuff. I wish you well and hope they're quickly able to place it in remission.
Posted 12/5/2016 3:41 PM (GMT 0)
Have you seen this?
/csn.cancer.org/node/288840
Posted 12/6/2016 9:23 PM (GMT 0)
Hi Madcat, I remember when you were on here often and I'm sorry to hear about the latest news. Hoping for a good outcome and know that you're healing well friends are here for you.
Posted 12/6/2016 9:43 PM (GMT 0)
i'm so sorry to hear but i've read that there's been a breakthrough in the treatment of lymphoma and the new generation meds allow patients to live up to the old age
Posted 12/7/2016 12:43 AM (GMT 0)
God how awful for you!! I told my husband last night and he couldn't believe it!..fortunately your young and I think you will beat this, let us know how you are getting on and I'm thinking of you. x
Posted 12/8/2016 6:30 PM (GMT 0)
Thanks guys. I was told it was diffuse B cell lymphoma. It's located behind my eye. Was also told there's high chances I'll make it. Starting chemo Monday.
Posted 12/8/2016 8:04 PM (GMT 0)
Madcat,
Sending you good thoughts for Monday. Is there anything special your hw friends can do for you (is that a silly question?) Please continue to let us know how you are doing.
B
Posted 12/8/2016 10:03 PM (GMT 0)
I'm glad your prognosis looks good, that's great news. Good luck, let us know how it goes :-)
Posted 12/12/2016 1:55 AM (GMT 0)
Good luck tomorrow. I am happy the prognosis is positive. Please update us when you can.
Posted 12/12/2016 8:17 AM (GMT 0)
Best wishes to you. Good that that this is treatable and the prognosis looks good!
Posted 12/13/2016 1:25 AM (GMT 0)
Thinking of you cat. I hope your first chemo went OK.
Posted 12/13/2016 2:36 PM (GMT 0)
Aww man!! Ibd puts us at catch 22. Not treating and letting inflammation increase risk of cancer cuz that's what inflammation does. Treating it also increases risks. This is why we need to find the roots/cures for disease like this.

I'm so sorry. Hoping that the treatment is not hard on you and is very successful at eradicating the cancer.
Will be praying

Best
Posted 12/13/2016 3:31 PM (GMT 0)
My Accountant is also a lymphoma survivor from taking Remicade. She was treated 7 years ago for it and is doing fine.

Sue
Posted 3/12/2017 1:08 AM (GMT 0)
I just saw an old post by you in another thread Madcat and I was wondering how you're doing. Thought about you a few times recently. I hope you're well.
Posted 3/13/2017 2:17 AM (GMT 0)
I am curious how you are doing and how you were diagnosed, madcat. I had some routine bloodwork done by my PCP and then she ordered a bunch of other tests. A few things turned up and she told me I had to make an appointment with this one doctor. Turns out he is an oncologist and hematologist at the cancer center and now I am really worried. I looked up some of my results and they all show up under lymphoma/myeloma.

I am praying that you are in good hands and everything has been going as planned.
Posted 3/13/2017 2:37 AM (GMT 0)
hey B girl !

i know it can be hard, but try not to be overly concerned at this point -

those results probably show up under prostate issues too wink

hope you get it cleared up soon -



ditto Cat - hope things are going well !
Posted 3/13/2017 5:03 AM (GMT 0)
I am sorry that you're stressed J. i had some really poor blood work in the past and I was sent to a hematologist/oncologist. luckily, my odd results were temporary and casued from the medications I was on. Everything went back to normal with a break from the drugs. i hope your situation is something similar. He had the tool to do a bone marrow biopsy on the table and I freaked. I was totally unprepared to deal with anything of that sort. I said I would prefer to wait, and within weeks, things bounced back.
Posted 3/13/2017 5:13 AM (GMT 0)
Hope everything goes well Bacon Girl. I wish the side effects for biologics were so scary sometimes. I know for the most part they give people their lives back but it's still not foolproof.
Posted 3/13/2017 12:04 PM (GMT 0)
Yeah, wishing you good luck Bacon Girl. Hoping the results are an anomaly which turn out to be nothing serious. It doesn't exactly help but just having IBD raises the risk of getting lymphoma - it isn't always the meds which cause it. But yeah, hopefully it isn't that anyway.

Madcat: Don't think you know me and I don't really know you. But I'm wishing you good luck as well. I hope your treatment is going okay.

Post Edited (NiceCupOfTea) : 3/13/2017 6:51:33 AM (GMT-6)

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