NHL - How many types of B cell r there in NHL

welshsue · Regular Joined: 18 Sep 2009 Posts: 11

Hi everyone,

I am new to this site, although I have been reading all the posts every single night since last week. I hope that someone can help me please?

My mum who is 58 has been going back to ENT since Nov 2008. She noticed a lump on the left side of her neck which was a lymph node. At first they told mum she had Warthins Tumours with Cystemic changes but then wanted her to have a FNB on the left and one on a smaller lump on the right side, the lump is just under her ear not in same place as the left.

At this stage she did not have any blood taken but had a CT scan done for another problem, she has aching joints, the CT scan from what they scanned di not show up anything then and that was in April of this year.

To begin with she was told not to worry that it was not NHL. She was then told that all the FNB were inconclusive and that she need an ultra sound guided biopsy as they were not sure if it was NHL.

The results had to be sent to a Lymphoma Panel as they were still unsure if it was Lymphoma. She waited another 3 weeks for the results and was told last Tuesday that the Lymphoma Panel would not say either way if it was Lymphoma. I asked the Dr at ENT why didn't they know, firstly he said that they won't just say it is if they can't be 100% sure it is exactly Lymphoma. Secondly he said that they did fin some B cells in the biopsy but that was not unusal, he said that lymphatic tissue is like B cells so could not call it either way!!! - Very confused, what does this mean B cell like our tissue? he also said the ultra sound guided biposy was not a big enough sample but in the sample did show SOME b cells?

They have now arranged for mum to go in next Tuesday to have it removed, there are however worries about the operation. I saw on the screen that the node which they are removing is 7.3cm by whatever but it is near the facial nerve or some nerve to do with the face movements, firstly they are worried that mum may not come round after her op as she has Sarcoid which has affected her lungs and skin. Sarcoid i think scares the lungs and other organs but it has stablised, she does have breathing difficulties which is why they have warned us!

The other thing is this facial nerve, will she be paralysed? Doc said 1 in 1000 have side of the face and 1 in 10 have temp paralysis? that we have spoken about and can deal with but he confusion over the B cells like our tissue and this long for a diagnosis is alarming as she really does have symptoms.

That said and done, she will be ok, can anyone help me please?

I want to know if this (what we believe is NHL) how many types of B cell NHL are there?
I have it in my head the she has large Cell b because he mentioned B cell Lymphoma - do you think this may be the case?
He said he wanted to get a prgonosis for her, what does that mean?
Will the Sarcoid interfer with Chemo?

Mum has night sweats, rash at the begining of the year but it has since gone, however she gets really tingly skin in the bath and dry mouth.

We are just so worried, any advice would be really appreciated. This forum seems to have some fantastic support and advice, thank you in anticipation for your help!

Best wishes and support to you all xxx

ChemoMan

Hi welshsue

So sorry to hear of your mothers problems. The first thing you must do is relax as Lymphoma is treatable and there is a very good chance you mother will be in remission at the end of treatment. Rule 1 is Don't panic Smile

To answer your question there are about 14 different kinds of B cell lymphomas, some are indolent, or slow and others aggressive or fast. As the understanding of genetics improves they are finding that there are more types so that number of 14 will probably get bigger in time.

Once you get a definitive diagnosis get back to us and we may be able to help you, at the moment without knowing exactly what your mother has this is difficult a s the treatment varies according to what type she may have.

Good luck and don't worry it will be OK. Oh by the way we have a rule number 2 which is Don't forget rule number 1 Smile

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

welshsue · Regular Joined: 18 Sep 2009 Posts: 11

Hello ChemoMan

Thank you. I have been reading all your replies to people and have found alot of information and comfort so thank you.

Is it correct that B cells are like our lymphatic tissue which is why it is so difficult to diagnose? Why do you think even they Lymphatic Panel Specialists in their field still could not tell?

I thought that if there were B cells there than it would definitely be B cell NHL, it so difficult not knowing the terminology that they use. Can you shed any light on my questions above please ChemoMan?

Thank you

Sue Smile

ChemoMan

Hi welshsue

Your immune system has B cells and T cells. Its very complicated to explain best to do some reading for yourself. Basically B cells make all the antibodies that your body uses to fight infections.

You can read about B cells and T cells here but its not easy going:
http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/B/B_and_Tcells.html

You can look here for more info on B cell lymphomas:
http://en.wikipedia.org/wiki/B-cell_lymphoma
This small article contains links to each type....click the links for more info

You can also look here:
http://www.lymphomainfo.net/nhl/b-cell.html
Once again click the links for each type.

Don't go into it too much at the moment, once you have a definite diagnosis you can narrow your reading down.

Your Mother has Sarcoidosis from what I have read, this is also due to a problem with the B cells and predisposes to Lymphoma. In my case I had Rheumatoid Arthritis also caused by a problem with the B cells which predisposed me to Lymphoma. All people who have autoimmune diseases are at greater risk of developing Lymphoma, the risk is not huge but it is there.

Good luck and keep us posted and remember this can be treated successfully.
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

welshsue · Regular Joined: 18 Sep 2009 Posts: 11

Hi again,

Thank you ChemoMan, I will read the links you have given me.

I will try to get some sleep now (3.10am)

I will let you know next week what information I have.

Have a nice day!

Sue Smile

ChemoMan

Hi welshsue

Laughing

I'm from Australia...we have good days here Laughing

its the Americans who have nice days Laughing

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

aisha1

ChemoMan, that one was funny!

G'day to you all,

Again and again, I see stories of people finding it hard to get a diagnosis, with failed biopsies etc. I know how frustrating this can actually be, and I really want you and your mum to get some answers soon.

Again, your thread has shown me that it is not only the patient who is deeply involved in this, but sometimes, more so, the families of the patient. You can find it difficult to understand the diagnosis and what it is all about, and if you don't have proper explanations, this could be even worse (as in your confusion!).

I wanted to know how your mother was dignosed with sarcoidosis? Did they biopsy it? When was she diagnosed? They also told me that on my CT scan, it looks like either lymphoma or sarcoidosis, but they couldn't tell. That's why I was wondering.

I used to watch this video when I was wondering what kind of lymphoma I had, there is also one for Hodgkins. It is quite basic, but informative. Just the thing you need at this stage! It's only short, so reading up may be able to assist you after this.

http://video.about.com/lymphoma/Non-Hodgkin-s-Lymphoma.htm

Hoping you have some answers soon. This stage of waiting, is so hard.

Aisha.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

welshsue · Regular Joined: 18 Sep 2009 Posts: 11

Thank you ChemoMan that was funy - It brought a smile to my face at a worrying time.

Hi Aisha

Thank you also for replying to my message. Mum was diagnoised with sarcoid a couple of years ago, she has it on her skin, she had a biopsy done of the area and it was confirmed she has sarcoid. She also has it in her lungs, they found a mass there about 18 months ago and it was confirmed that was also sarcoid.

She suffers with really really bad joint pain and hot flushes, I am not sure if this a symptom of sarcoid. She also has a very dry cough and sees a Chest specialist for her sarcoid every 6 months at the moment. The problem is that some of these symptoms she has I believe are also symptoms of NHL whch is worrying Sad

At first (Nov 2008) they were saying it was the sacoid but they wanted to do FNB anyway, they all came back inconlusive so they wanted to do scan biopsy. They problem is she also has lumps inside her neck on the left side about 5 in total, they cannot be felt from outside, we did not know they were there. They have said that their not worried about them but I am?

ChemoMan said something interesting that Lymphoma affects the immune system just like sarcoid, so i was wondering could this be sarcoid even though they say it has abnormal cells, I am sure sarcoid has abnormal cells too - I am hoping to convince myself this!!!!!

I know nobody apart from the doc can say either way but just wondered what your thoughts were. I have read all your thread and you seem to have alot of knowledge just like ChemoMan.

Your thoughts would be very valued at this moment in time.

I hope you are well on the road to recovery, some of your threads made me laugh about your Adam's family!

Take care of yourself and thank you again to you and ChemoMan. Thank you for the link too!

Sue

aisha1

Thanks for the reply.

I had wondered if your Mum had been diagnosed just through a CT scan, and had been told it was sacroid, when in fact that could have been the lymphoma starting, but as you said - it was biopsied on her skin, so that makes everything clearer.

It's so confusing, trying to gather information about something when you don't even know what you are narrowing it down to! It seems like you are lost at sea!

Hope you are able to know what you are dealing with soon. Good luck to you and to your Mum.

Aisha. x
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

welshsue · Regular Joined: 18 Sep 2009 Posts: 11

Hi

Can anyone tell me about the drain the surgeon says mum will have in her neck please? Does it drain the blood or poison away from where the node was and how long will she possibly need it in for?

Thanks

Sue

havefaith

hi
u ask about the drain, i did have a sternotomy, a surgery that they open my chest and they put after the surgery a drain . the drain is for prevent infection or for a faster wound healing is for draining pus and blood or other fluid.
when i weak up from the surgery i didnt feel the drain and it wasnt botering me in anyway, but for going to the bathroom sorry is another story you can t go with drain iv, morphine iv.. so that is all. the doctor will come to remove it after a few days, depend. he removeit, it was strange, but no pain and u dont need any drugs for that. if u have any question ask me.
good luck for your mum, god bless you.
_________________
28 y f
thyroid cancer (28-09-09)

thyrodoctomy total+ sternotomy median 2009

what is worth the price always worth the fight.
stay strong and live strong.
january 2010 treatement radio iodine
february 2010 total remission

welshsue · Regular Joined: 18 Sep 2009 Posts: 11

Thank you havefaith, I understand what you have said and feel alot better now!

Sue x

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