Can you help? I was not diagnosed for years and even left my own country to seek help. I found it, eventually, and now have had treatment according. ( IVIG and prednisone so far) just as I thought I was on the road to some kind of better health ( long over due) I was diagnosed with kidney cancer. I am wondering if anyone else has had cancer with behcets? I also have Hyper IGM syndrome and CVID, 50% basilar artery blockage, acquired nystagmus, I have had one stroke and quite a few partial strokes. I get giant blood blisters internally, they are so large they block the airway and throat, they fill will blood and have to be pierced with a needle to prevent obstruction, I have not seen this with other behcets survivors and wonder if anyone gets those. I have them constantly although not always so large. I have no blister externally. I have some major internal damage and eating is a nightmare. I am so hoping to find someone to relate to. Thank you!
Behcets and cancer.: Can you help? I was not... - Behçet's UK
Behcets and cancer.
It sounds like you have been and are going through a lot. You must be a very strong person to deal with all of that. I hope things gets better.
You are so kind. I was beginning think that no one would reply. Thank you for your good words. Do you have Behects too?
Yes I was diagnosed about 4-5 years ago. I was lucky to have a fast diagnosis. Not long after, I went to Mayo in Florida to see a specialist who had many other patients with BD. If I ever question my DR, I go back to mayo. I think the key, is finding a DR you trust. I live in rural Arkansas so no one knows about BD. You only have one life, its worth it to find a good DR and keep you support team by your side.
What a blessing for you to have found all you need, a good start indeed. Good Doctors are a must, it has taken me many year to find such excellent support. My oncologist did mention I should attend the mayo but I am not sure what insurance they take. I will look into it. May I ask what regime of treatments you receive and how do they help? My BD is not being treated fully as the treatments can increase the growth of cancer. Once surgery is over I am to start, possibly, Humira. There will always be risks but as you stated, we have this one precious life. Thank you very much for your comments.
I take Cellcept (mycophenolate) I started at 2g (4 pills daily) I've gone as low as 1g (two pills daily) it really depends on my condition. If I am stuck in a flair I slowing inch it up. I'm currently at 1.5g daily. If I need fast relief I have prednisoe. Which has long term and short term side effects. I try to avoid it and only use it in a "I can't take it anymore" case. Which doesn't happen much anymore. I want to take as little of this poison as possible. I've had 4 doctors tell me that there is no evidence of long term issues with this medication due to its age. I've been told that my level of illness is at a 4/10 so I feel like I am lucky compared to many here. I usually keep quiet. Mayo took my insurance and is actually cheaper than my local DRs for me. You just have to get there.
I just wanted to chime in that my 24 year old had CML Leukemia (the adult form), had a bone marrow transplant, then relapsed and since my son (as most of you) is an Enigma. I am sure there are others out there that have had/have cancer with Behcet's. I thought we are the only one. We are in the united states. long story short he had a bone marrow transplant was supossed to cure him but he relapsed 6 months after transplant. they didn't get extra cells like they should have from the donor to infuse in him so he got none. great news is since he was young with adult cancer (he had not been diagnosed with behects yet) they didn't know what to do so we waited. six months later everything was undetectable with pcr test and has been cancer free for 10 years. He is not able to take ANY of the meds like humera. Yes there is like a 50% rate of getting cancer if you have had it in the past and the doctors office we go to have seen this happen (getting cancer after humera (family of meds) and they got cancer again. so guess what my (grown) kid and the doctor have both said no for him as there is the 50% cancer rate that is real and the meds only have a 50% chance of helping him. not good enough odds for him. he is so not getting cancer again that he cant go that route. He has tried colchocine several times and he just cant tolerate it. He is not able to take steroids because it makes his mouth ulcers worse or makes them come. He is on ivig. he had three good months of no mouth ulcers (which he has never been free of them for a day in 10 years). then it didn't work anymore. they upped the dose etc. nothing good. then with the ivig he has such horrible side effects with the blood vessels in his neck cant take the thickness of the blood going thru the back of his neck going to his head. if he moves his head it is awful awful. then he is nausous on top of this (no meds help that for him). then he throws up bile (cause he cant eat so that is all that is left) and when he does his head hurts past horrendously (because it moved while he was throwing up) and the mouth ulcers get dunked in bile while he throws up and that is beyond painful. My kid had great pain meds (again in the United States) but it touches NONE of that. sometimes in the episodes we have to go check into the hospital to get the pain under control. he just got out of the hospital for infected mouth ulcers and pain control. they have him iv antibiotics for 10 days and THEN sent him home on a antibiotic by mouth which makes him feel terrible and nauseas. Now he has a big what I call lesion (he says it is not a lesion). it is big and looks bad and is painful. it will eventually fill with pus and he will have to get it out and that is another terrible thing. we have cultured him mouth and the "lesions" on his face on more than one occasion and they cant seem to gain anything when they test them. the test say it is nothing. well it is something a big awful spot that is the size of a nickel. I dont know if any of this helps but it sucks here.
HI !
Just tuned in to this conversation by chance this morning !
For the record and your statistics, i had cervix and uterus, surface and glandular CIN4 back when i was 28 years old. For those that dont know, they avoided the word cancer as much as possible as it was thought to make patients panic more back in those days. Lol I am now 58 and didnt get diagnosed with Behcets until 12 years ago but i always knew there was something very wrong with me but just didnt know what it was ! Lol thankfully i have had no reoccurence of the cancer in the last thirty years so please take some comfort in that.
Anyway, i ended up with a full hysterectomy and also lost my ovaries at the same time except a very small piece of the right one to produce enough oestrogen to keep me going to stop bone deterioration. They also found three of those nasty big blood blisters (which are actually called Chocolate Cysts because of the really dark brown colour of the contents inside them,) one about the size of a tennis ball and two smaller about the size of golf balls. Removing those without them bursting was apparantly a major issue. My Gynacologist said i had the worst case of endometriosis he had ever seen and said i was very lucky indeed that things hadnt turned septic and killed me before he got in there to remove it all. He also told me that they had a really bad time trying to stop me bleeding and warned me that if i ever had further surgery i needed to make the doctor aware that i bleed like a stuck pig and they may have similar problems stopping me bleeding to death which i understand was a distinct possibility.
I knew i was very sick but had no idea what was going on inside of me at all and things like MRIs were not freely available then as they are today. I had frequently seen my GP who dismissed all my 'so called problems' as my wanting time off of work or simply made up in my head. Grrrr ! He was extremely red faced after this lot came out of the woodwork.😳
The first major clue after that was when i was driving around the M25 one busy morning and my left eye ball decided to pop inside 😳 My left eye went black and the right eye went into spasm dancing all over the place and i was lucky to get off of the mototrway without killing myself and everyone else in the close proximity ! My right eye thankfully settled down again okay but i never did regain most of the sight in my left eye which was found to be a Central Retinal Vein Occlusion where there was a sudden blockage of the main vein.
After that happened i was off work for over a year and consequently could no longer work as my joints started to creak and groan furiously and i just couldnt stay awake or make it further than a few yards before having to lay down again. My life just stopped so suddenly and i got very depressed about it all and contemplated that life wasnt worth living anymore. I had gone through a recent nasty divorce which really didnt help things as you can imagine. I was 40 years old.
I now have Behcets, Psoriasis, Psoriatic Arthritis, Diabetes and have just been diagnosed with Cirrhosis of the liver even though i dont drink at all. I have had recent gastroscopys that have found that my stomach is badly inflammed with gastritis and i have multiple ulcers in my digestive tract. I am awaiting an appointment with the hand surgeon following a diagnosis of carpal tunnel syndrome and have had so much dentistry done recently that it feels like all of my remaining teeth are disintegrating at a rapid rate of knots ! In the past couple of years i have lost over 8.5 stone and my weight is still dropping steadily. My skin conditions are multiple and ever changing and i have around 10 different creams to spread in different places each day which takes hours ! Lol
Please dont see this post as a sob story .... It is purely a factual record for your reference okay ? 👀
Take care all and i really hope you find answers to your questions soon.
Gentle hugs,
X xx
What incredible responses. I admire you all for caring and daring to open up about such raw facts. I relate to all that was wrote, I really do. I certainly helps to know what there is some-others out there that understand. I pray you all get the help you need and I am so sorry for the immense suffering you endure though, it pains me because I know with such impact how painful these conditions (Behcets is vicious, alone) are to life with. Getting cancer on top of everything else seems a little overwhelming but I think we all become quite resilient over time and have to deal with things head on, choice is a luxury we cannot afford. I also have been unable to eat normally for years, the bleeding, the giant blisters are aggressive to say the least, they extend all the way through and have caused scare tissues that narrowed the intestines. My teeth too have been disintegrating over the last year and now even when I see the dentist's it sets off such reaction the dentists refuse to help me further. A mouth full of infection does little to minimize the oral behcets. Do any of you also have a constantly raised (very) Hyper IGM immune response? Just wondering. We are all unique I know and get affected in different ways but still have these weird autoimmune responses.
Thank you for sharing, for the hope and the kindness.
Hi; I've been struggling with a strange melange of symptoms for the past 20 years without diagnosis. Just getting DNA & other testing now; internest said I had Vasculitis - I looked up symptoms and it has to be BS - took diagnostic quiz the Japanese have on a site and scored so high there is no question I have it.
3 years ago I had terrible headaches with eyes & ears being horribly over sensitive to light & sound, at same time was having horrible time swallowing food & water, things would get stuck - could feel pieces of food sticking in throat - it was nightmare feeling - then I choked on pudding - totally freaked me out - Dr. ordered a "swallow test" but by then (weeks & weeks later) everything was fine. Have read that ulcers can cause this kind of grief in the throat, but it also sounds like blood blisters - (large and/or burst) could cause it also.
Recently I've had months of "sudden blood blisters just popping up inside my mouth on tongue and cheeks - they come on in a matter of seconds - I can feel them growing - they get as big as small finger nail. Can't stand them so I pop them - they heal quickly. I've also had sudden nose bleeds, talk to someone one minute & blood pouring out of my nose really fast in a stream the next - wonder if that's also a burst blister or whatever.
I'm in Canada - is everyone on this site in Britain?
I really relate to your symptoms. I get the whole array of difficulty swallowing, that awful sensation that food is stuck, I drink water to ease it but it is very frightening, scary, and those vicious blisters they come up when I least expect them. Yes, you can feel them growing, nasty! I live on a bland diet, nothing sharp/spicy/hot/cold, etc, to trigger them, even brushing teeth can start them off with the bristles from the brush, I use extra soft. One learns to find alternative ways to accommodate the brunt of the condition. It is like living on a knife edge. I am from the UK but moved to the USA several years ago. The NHS were terrible to me ( long story of misdiagnosis) and so I took the leap of faith to move here. I am glad I did, eventually I found the specialists/diagnosis I needed, although I miss home. I get dreadful nosebleeds too, they are all related the this vascular disease. Just like you, mine suddenly come out of nowhere. Bleeding tends to be everywhere, the vessels just get so inflamed. The light and sounds sensitivity, oh gosh, yes, it is unbearable, I believe that is from the Neuro behcets. Have you had a brain scan or other diagnostic tests. I feel for you, I do, I hope and pray you get all you need to become stable.
Hi i have behcets disease. Been diagnosed 9 years . Am on methertrexate injection and infliximab infusion . The only thing that takes my sickness away and the alows me to eat is vaporising (not smoking) or eating if pos, a small of canabiss . It allows me to eat wich inturn help me feel better. It also help me to relax .
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