Behcets and blood cancer: A brief summary of my... - Behçet's UK

Behçet's UK

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Behcets and blood cancer

Aerobobcat profile image
19 Replies

A brief summary of my Behcets history. I am a 73 year old UK male and have suffered from Behcets since the age of eight starting with the usual symptoms of repeated mouth ulcers.

In my teens I started to develop genital ulcers as well and at their worst I would not be free from any ulcers for more than a week between flare ups.

This was followed in my late teens with deep vein clots in both legs followed by leg ulcers for which I have remained on permanent anticoagulation.

Throughout this time I continued to suffer from headaches, diarrhoea plus other less troublesome symptoms.

In the late 70s as my ulcer symptoms were diminishing I started to suffering more with joint pain’s eventually affecting all my joints.

I have in fact been a member of the Behcets Syndrome society since 1988.

The question I now ask is, have any other Behcets sufferers been diagnosed with a blood cancer? And if so what specific cancer were they diagnosed with and was it ever suggested that it could be related to their Behcets?

19 Replies
SCMW profile image
SCMW

I’m in my forties & recently diagnosed with breast cancer (DCIS & small T1A). I found some research around blood clotting abnormalities & a link to breast cancer. I had none of the usual risk factors and no genetic links that I know of. There is a potential link between tissue density and fibroblasts which were found in my pathology. Here is a link in case anyone finds it of interest. preventbreastcancer.org.uk/...

Aerobobcat profile image
Aerobobcat in reply to SCMW

Many thanks for your message and the link, I hope all goes well for you.

Digger58 profile image
Digger58

I also have had all of this at the age of 28 now 64 and now they have found protein in urine and my blood they Take blood tests every year to see if it will turn into myloma I'm border line at this stage no treatment of yet but don't know if it's related to Bechet syndrome

Aerobobcat profile image
Aerobobcat in reply to Digger58

Hi Digger many thanks for your reply I will keep an eye out for any future developments.

gillianTS profile image
gillianTS

Hi Aerobobcat

I have found the following articles after a little search, more shown, not sure if this is helpful:

The following link Myelodysplastic syndrome (MDS) in children is often associated with chromosomal anomalies and trisomy 8 is a characteristic karyotypic feature in up to 20% of the cases. Behçet disease is a rare multisystem inflammatory disorder characterized by recurrent mouth and genital ulcers. MDS with trisomy 8 has been observed in adult patients with Behçet syndrome:

pubmed.ncbi.nlm.nih.gov/170...

medicaljournals.se/acta/con...

researchgate.net/publicatio...

europepmc.org/article/med/1...

Aerobobcat profile image
Aerobobcat

Hi GillianTS, many thanks for your reply and for the links, which I very much appreciate. Certainly it would seem from what I have gleaned from a quick look at the links that there is some kind of involvement blood cancer and Behcets.

However, my own blood cancer is chronic lymphocytic leukaemia. It’s not curable but treatable. It was one of the haematology clinicians who suggested that there might be a link but so far I’ve not been able to establish such.

Again many thanks for your interest

gillianTS profile image
gillianTS in reply to Aerobobcat

You may wish to read the following article, Patterns of autoimmunity and subsequent chronic lymphocytic leukemia in Nordic countries:

ncbi.nlm.nih.gov/pmc/articl...

All the best with your treatment

Gillian

duke22 profile image
duke22 in reply to Aerobobcat

my son who is 29 has behcets. He was diagnosed at 11 with cml leukemia. We r in the US and he was so yiung he was able ro get a bone marrow transplant. They dont offer it to older people because it is so bad they would die. The cml is completely cured. I know we did the right thing but that treatment was so horrendous thst me as his mother has ptsd because of it. So thsnk god he doesnt hsve to take gleevec or other meds for it

Aerobobcat profile image
Aerobobcat in reply to duke22

Hi duke22, Yes, you did the right thing. I am pleased to know your son has been cured and I wish you every good fortune for the future.

duke22 profile image
duke22 in reply to Aerobobcat

and you as well.

Aerobobcat profile image
Aerobobcat

Hi again gilianTS, thanks for the latest link. I have had a quick scan and it’s clear from what I have read that autoimmune disease, of which I note Behcets is shown has some bearing on blood cancer. I need to study the data but I do hope that a Behcets sufferer can confirm that they too are being treated for CLL.

gillianTS profile image
gillianTS in reply to Aerobobcat

I searched this Behcet's UK threads on here and did not find anything.

Aerobobcat profile image
Aerobobcat

Many thanks for the message. It may well be that there is no real link between the two conditions.

gillianTS profile image
gillianTS in reply to Aerobobcat

I do think after reading links exists with several associated conditions of Behcet's, Rheumatoid arthritis is mentioned as are others, found this also, lots of papers written:

ard.bmj.com/content/75/Supp...

journals.lww.com/jclinrheum...

ard.bmj.com/content/60/9/892

Gillian

Aerobobcat profile image
Aerobobcat in reply to gillianTS

Yes, I do agree that there are so many conditions related to Behcets especially arthritis. I was once told when I had an appointed at the London COE that if you were to open up a Behcets patients joint you would not see any physical damage. This in some respects explains a statement made by an ortherpedic surgeon after he performed a procedure on a damaged knee of mine. I had been suffering from a locking knee joint after a driving accident and it went on for some years but because I had a long history of DVTs and on long term anticoagulants they were reluctant to perform any kind of surgery.

In the end they relented the outcome being the joint was in tact but was highly inflamed at the time of the procedure that they concluded that the problem was Behcets related.

For me this was even more troubling as it cost me the loss of an insurance claim against the other driver as the hospital report said that I was suffering from a condition which would include joint problems.

As for the link with my Leukaemia I would have expected some credible response from Behcets sufferer’s if there were a positive association.

gillianTS profile image
gillianTS

I also just searched the Behcets Syndrome Facebook page which has over 5,700 members and very little noted about leukemia:

m.facebook.com/groups/50948...

Aerobobcat profile image
Aerobobcat in reply to gillianTS

Gillian I really must thank you for all the effort you have gone to in providing me with some interesting data. It really shows the value of a forum such as this one in providing help to fellow sufferers, so again my sincere thanks.

gillianTS profile image
gillianTS in reply to Aerobobcat

You are welcome, I have received lots of help and advice from this forum it is good to be able to help fellow members trying to seek out information on our condition, it certainly throws lots of things at us and knowing we have the forum helps.

Aerobobcat profile image
Aerobobcat in reply to gillianTS

Yes, I do agree and again I thank you for going the extra mile. I will keep an eye out and may well contact you again sometime.

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