Hello, I've had Behcet's for 27 yrs but in the last 2 years it has gone out of control. Also, I found out last year I have a rare bone cancer. They removed the tumor last February 2012 and started me on remicade infusions 6 months after the surgery. Well, this April, the tumor returned and even larger. During the surgery to remove the tumor, one of the nerves in my leg was damaged and I've lost all feeling in my right foot. I have what is called foot drop. I now walk with a specialized brace on my leg. Anyway, since the cancer returned the doctors took me off the remicade infusions and now my Behcet's is all out of control. I'm in so much daily pain, fevers, ulcers, and sever GI issues. According to the doctors my esophagus, stomach and colon look like hamburger meat. They have been covered in ulcers and I've even had to have my esophagus dilated due to strictures for scar tissue.
My question is this... One of my doctors said its ok to restart the remicade infusions but every other doctor says its not safe. Have any one of you been dealing with any type of cancer with your Behcet's and if so what has been your treatment to keep the Behcet's under control. Also, I need to mention, I was also told through genetic testing they have found I have Magic syndrome. It's a combination of Behcet's and inflammation of cartilage. This may explain why I'm getting the bone cancer but I'm still learning about Magic syndrome. Any help would be so appreciative. Thanks so much.
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Haley111
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It may be best avoiding the biologicals like Remicade as TNF inhibitors do carry a cancer risk. How about asking your doctor if you could have any of: prednisolone, imuran, cellcept, methotrexate.
Hey, thank you for the response. Imuran is off the table too according to my doctor, Yusuf Yazici. I'm allergic to prednisone so that's off too. One doctor I saw 2 weeks ago at UAB KIRKLAND CLINIC in Birmingham Alabama said he was the expert in imunsprrssant drugs and he said that remicade had a zero chance of causing cancer. The fight now is none of my other doctors agree with him. They are not wiling to take a chance on making the cancer grow back faster. He said he knows his field, which is research on imunsprrssant drugs and they know theirs which is Behcet's. also, getting blue cross to approve it again while I have cancer is a fight. I'm just lost as to what to do. I'm in so much pain right now I'm in bed all the time. I have one doctor assigned to address my pain but its getting so bad we are not sure which way to go. If you take something it stops working and you have to move on to something more powerful. That scares me to death.
Zebra, thank you so much for responding. That was very sweet of you to take the time. Hopefully, my oncologist can suggest something to address my Behcet's without upsetting the cancer. Behcet's, magic syndrome and bone cancer are not a good mix. All three disease cause great pain.
Someone just mentioned to me taking vitamine B17. I've never heard of it but he told me to look it up. He said doctors will not tell you about it but its suppose to help if you have any kind of cancer.
I am glad you are under Dr Y as he is reckoned to be the best in the States. Hoping they soon come up with just the right treatment for you. It is hard to have conflicting advice.
Im a nurse and I hope this doesnt come across as abrupt or blunt but you need to focus as much as you can on the bone cancer. We know there is no "real" cure for BD, we basically end up just treating symptoms unless you are onevof the lucky ones who actually achieve remission. I think you need to make sure your pain is addressed and adequately controlled and move forward with trying to conquer this bone cancer. I know Dr.Y is "the best BD expert" but he isn't an oncologist. Have you considered arranging a trip to The Mayo Clinic, John Hopkins, or the Cleveland Clinic? Thats what I did. One doctor headed up the team and they all worked together to come up with a treatment plan. Or even an Osteopath Medical Doctor.They believe in treating the WHOLE body not just 1 symptom at a time. I know you must be so very frustrated and confused and if I were you I wouldn't know where to go or who to listen too. Its scary, I know butvi wish you the very best of luck!
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