To Susie.... - Lymphomas Message Board

*Nicola · 06-07-2007, 12:16 AM

I know that you are in the hospital and hopefully they will answer all of the questions you have, but in case they don't I found out what your biopsy found. Sinus histiocytosis also known as Destombes-Rosai-Dorfman syndrome is...

"Benign, non-Langerhans-cell, histiocytic proliferative disorder that primarily affects the lymph nodes. It is often referred to as sinus histiocytosis with massive lymphadenopathy."

-Massive painless bilateral lymph node enlargement in neck, of unknown etiology
-Rare; 25% involve extranodal sites (skin, upper respiratory tract, bone), but massive lymphadenopathy is usually also present
-Associated with fever, leukocytosis, anemia, elevated sedimentation rate, polyclonal hypergammaglobulinemia
-Usually age 20 years or less, but can affect any age
-Initial cases from South Africa; now from US, Western Europe, Africa and Caribbean
-May spontaneously resolve; extranodal cases may persist for decades
-May cause death due to amyloidosis, involvement of a vital organ, or immunologic abnormalities
-May coexist with lymphoma in same node

I hope this helps! Let us know how everything is going. I am worried about you!

~Nicola

fairy-lights · 06-07-2007, 11:01 AM

Thank you very much Nicola

Taking the time to write all that for me, I really appreciate it.

I still don't really know what it means I am not really up to it right now. Had your friend heard of this, do you know why this happens, and has it got anything to do with cancer

Sorry for all the questions you've been a great help.

Thank you also for your support, any news on your diagnosis yet.?

lots of love Susie xx

*Nicola · 06-07-2007, 11:30 AM

No problem, I am glad I can help!

Yes, my friend has heard of it, but he said it is extremely rare and most doctors probably don't have very much, if any knowledge about it. He said that it can occur with lymphoma, although most cases are benign. I don't think they know why it happens. I wil try to get more info out of him.

~Nicola

fairy-lights · 06-08-2007, 06:35 AM

Thanks again,

Lion, said he had the same diagnosis

If it is so rare what causes it? and why is my doctor fobbing me off for?

Lion said it looks very similar to lymphoma, could they have made a mistake

Sorry for all the questions.

How are you? any answers yet? I hope you are feeling better.

Thanks

for your support, it means a lot.

xx

*Nicola · 06-08-2007, 10:39 PM

I am still catching up with everyones posts too, LOL! Yes, it really does sound like your doctor is "fobbing" you off. I love you and Ail's wonderful english words like "fobbing" and "naff"! Sorry, went off course for a moment there. Umm where was I, okay right, unfortunetly researchers don't know what causes Sinus Histiocytosis. Maybe I can explain it a little bit better. It is a rare disorder characterized by over-production of a certain kind of white blood cell (histiocyte) in the lymph nodes of the body (causing swollen lymph nodes) which usually occur in the neck (cervical lymphadenopathy). (The histiocytes also contain inflammatory cells.) However, the over production of the histiocytes can also happen in other parts of the body besides the lymph nodes, such as the skin, nervous symstem, bone lesions and unfortunetly the internal organs.

I have been researching this and so far I have not found much info on treatment except that in exceptional cases with obstructive complications, surgery, radiation therapy, and chemotherapy have been used to treat the disease and that there are histiocytosis treatment centers that are located inside cancer centers. Almost all of the medical reports that I have found, state that the disease very commonly goes into spontaneous remmision. This means that one day you could wake up and all your symptoms could vanish, so don't give up.

In the meantime though, I would get a different doctor, because if he is telling you that it is common, it is not. Sinus Histiocytosis is even listed in the National Organization for Rare Diseases. Your doctor really does seem to not care; you deserve to get a doctor who wants to get to the bottom of this.

Well, anyway, I just had my appointment with my oncologist/hematologist and we were going to do the wait and watch kind of thing while doing the IVIG. Well, he did a urine test and some more blood tests. My lymphocytes (I think thats what is was) came back 120 and the normal is 100-190 so they were low-normal but my urine came back with blood in it and white blood cells. I guess they are going to do more tests and wanted me to come back on Monday but I am going up north with my boyfriend Sunday thru Friday. (I just wanted some peace without doctor appointments) and then the dr is gone that next week so I dont' know what we are going to do.

What does blood and white blood cells mean in a urine test. I think I will probably post this in a new thread because this is so long.

Sorry its so long, susie (and everyone else) I just really wanted to give you all the info I had. I hope this will help, and dont hesitate if you need anything else!

~Nicola