Behcet's Leukemia

I would like to know if any one with Behcet's has ever developed T-cell Leukemia.

My son who was diagnosed with Behcet's at about six months old has now developed Leukemia, he also has very bad headaches and no matter what pain tablets he takes nothing seems to work.

At the moment he is having blood transfusions almost every week .

If any one has any knowledge I would like to know

7 Replies

  • I am so sorry to hear this news...although I have never developed leukemia, I am someone with Behcet's who struggles with many hematology symptoms and underwent a bone marrow biopsy to rule out blood disorders/diseases. For some reason, even before they started treating the Behcet's (and even now after years of treatment) I run very low white blood cell counts and low absolute neutrophil counts. I get infections often but have a very concerning reaction to antibiotics. No matter what type of antibiotic I take since I got Behcet's in middle 30's, both my ANC and WBC drop dangerously low very fast to the point they have considered neupogen (usually given to cancer patients undergoing chemotherapy). I never had any hematology issues or trouble with antibiotics prior to the Behcet's. They've never figured it out and so perhaps might not be related but seems too coincidental to me not to have some sort of cause/effect relationship of some kind. I also have chronic anemia (low ferritin and hemoglobin) despite taking supplements and eating an iron rich diet. Like your son, I have the same issues with migraines and pain control. The only thing that has worked for me in the slightest is vicodin. I've tried at least 8 other migraine medications but none have helped. You and your son are in my thoughts and prayers - I hope things get better very soon.

  • Thank you for your reply , My son is now 32 and has also had bone morrow biopsy tests. He is now taking Cyclophimide chemotherapy drug to see if this can help sort, he has low red cells so need a transfusion once a week.

    The doctors believe his BD is attacking his bone morrow but it seems they are in the dark on this one.

  • hi, I hope your son gets well soon - and thx for the reply back - I've always wondered if anyone else had bone marrow function issues triggered by BD. I'm now 41 years old and the BD symptoms started for me in my mid 30's. It is hard being in the dark but as my mom always tells me, "the light shines brightest in the darkness". Tell him not to give up hope, keep trying and have a fierce sense of faith that things can/will somehow work out. He is lucky to have such a loving mom...I'm sure this is very hard on you as well. Take care and keep the faith.

  • Hi,

    I'm so sorry to hear about your son :-(

    I found an article on T-cell leukemia and Behcet's, but there's no article summary online. You'd need to go to a medical library for the article or ask your doctor to get it...I don't know what the article says.

    Here's the reference for your son's doctor:

    All the best,

    Joanne Z.

  • Hi Jzeis Thank you giving me the link to that article ,I will take this to his doctor and his Oncology team

  • I have the opposite with two myeloproleferative disorders one being polycythemia. I can't find anything other than hypothesis since Behcet's is such a rare animal. I would say that it is feasible given the nature of Behcet's attacking the source of where blood is made. But that also would be a guess.

  • Hi Andy , I did write hear to do with my son who has BD . since the last time I wrote he has now been very well it looks like the Cyclophimide chemotherapy drug has done its stuff. He has not had any blood transfusions for about 3 months and this week has stopped Cyclophimade as well as it seems you can't take it for longer than 6 months. But at the moment all looks good ,he is still going to oncology for checks but now we have to see if it stays away .

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