Help with Recent CLL/SLL and lack of information from hospital

[Hippy16]

Hello,

I am looking for some guidance please. I have now been informed after a lymph node biopsy in March 17 that I have low grade CLL/SLL by my hematologist. It started with an enlarged lymph node to the side of my chest in Feb 17.

I had a biopsy undertaken 21st March 17.

20th April I was informed it was abnormal and was sent for further testing

24th April CT Scan

17th May finally told I had low grade CLL/SLL. ( a long wait to be finally told and confirmed my condition)

Since first noticing the swollen lymph node at the beginning of Feb the CT scan in April showed that I then had swollen lymph nodes above and below the diaphragm.

I had a bone marrow biopsy undertaken on the 9th June, arranged by my hematologist on the 17th May.

I did not receive to much information on my first visit, only to be told my condition and that the final test would be the bone marrow biopsy.

After the biopsy I meet with him again on the 22nd June. I had a concern I had raised previously about the dull ache I have had for a while to the flank of my right side. This is when I was informed about the extent of the swollen lymph nodes in my system. I have given a urine sample although I have no problems with passing urine etc

My confusion is that on both occasions I have never been told, or should I have been

1. What my blood counts are for white and red blood cells other than they are ok

2. The bone marrow biopsy was what to be expected

3. What are my markers "B" "T"

4. I did have to ask what stage was I at and the reply was 3

My lymph nodes are developing in different areas rapidly and the older ones are getting bigger. Another CT scan has been requested for the end of July to assess this. My fatigue is getting worse and my forearms are sore to touch when slightly pressed.

I guess I am looking for some assistance on how I should approach this when I next go back to see him at the start of August with some questions to help me get a better understanding of where I am at with it.

I am currently on watch and wait.

Age 49 male

thank you in advance,

[Cllcanada Top Poster CURE Hero]

CLL/SLL is not a diagnosis... its one or the other. In the U.S. it might be written like that at diagnosis for insurance reasons to cover both bases, until, it is clear which it actually is...

Do you know whar system they are staging on on, Rai or Ann Arbor?

Here is a good Patient Guide, covers many topics

nccn.org/patients/guideline...

~chris

[Hippy16 in reply to Cllcanada]

Thanks for the reply Chris,

I am in the UK under the NHS. The information sheet he gave me says this word for word.

At your consultation today you were given the diagnoses of/you were told that your condition had changed in that:

"Chronic Lymphatic Leukaemia / Small lymphatic Lymphoma"

A summary of your consultation is;

"Lymph node biopsy - low grade non hodgkin lymphoma type of a concern. CT scan shows enlarged lymph nodes both above and below the diaphragm. Does have some subtle B symptoms"

Goes on to say Chemo will be used for treatment and this would be if B symptoms occur more rapidly increasing lymphadenopathy or worsening blood count.

Binet system I think so "c"

[Cllcanada Top Poster CURE Hero in reply to Hippy16]

Is your white blood cell count [WBC], or better still your absolute lymphocyte count [ALC] elevated? That would indicate CLL. Since they reference the diaphram, it sounds like SLL.

If your B lymphocyte counts are normal, then it would be SLL, or perhaps Monoclonal B Lymphocytosis (MBL).

Here are the iwCLL 2008 guidelines for diagnosis. Its currently under revision

bloodjournal.org/content/bl...

...

Binet Staging

stage A

fewer than three areas of enlarged lymphoid tissue

no anaemia

no thrombocytopaenia

* lymphadenopathy in the neck, axiallary, inguinal as well as the splenic invovement, are each considered as "one group," whether unilateral (one-sided) or bilateral (on both sides)

stage B

three or more areas of enlarged lymphoid tissue

no anaemia

no thrombocytopaenia

stage C

patients have anaemia and/or thrombocytopaenia regardless of lymphadenopathy

[Bubnojay]

Hi Hippy 16

Welcome to our community fortunately CLLcanada is far more knowledgeable than most of us so I will leave interpretation to him.

However as you are in the UK and under the NHS thought I might help by getting you to ring your haematologist, (they have specialist nurses to deal with queries) and ask for a copy of your blood results to be emailed or sent to you.

These will give you information which will be helpful to Chris and others who would try to help you understand more.

You will find a list and the readings and see which are outside of normal range. In the NHS if you don't ask you don't get, they seem to work on the idea that we don't want to understand this disease, we have to show them we do, at least most folk here want to.

Lymphocyte count which we call ALC (absolute lymphocyte count) is a strong indicator for us, and this will be one of the readings.

Best wishes

Bubnjay1

[Hippy16]

Thank you Bubnjay1

I will give the nurse a call and ask for them. After CLLCanada replied it does seem to be more SLL. When I meet with him he said that the two were inter changeable and that reference would be made to them both. Confusing to say the least. As regards your comments it does appear that on both occasions when I have seen him I have to ask for information but detail is always lacking, very frustrating. I am the type of person that likes to be informed and thats not to go overboard with information but to just know where I am at so life planning can be considered for, such as work, holidays etc as fatigue is an issue for me at the moment, and if treatment is approaching.

My lymph nodes appear to be growing and more developing very quickly hence the CT scan at the end of July to compare to April.

regards

Hippy16