Non Hodgkin Lymphoma and Cll

[deb1610]

JERRY was diagnosed with CLL CLA about 3 years ago. On Imbruvica for 7 mos.

Dr filling in for orig cancer dr ordered another pet scan showing diagnosis as N-Hodgkin lymphoma on the order sheet???

anyone ever hear of this? thanks

Deb

[Newdawn Administrator]

CLL is classed as a Non-Hodgkin Lymphoma Deb so no need to panic. It isn't a different condition. This explains;

'Chronic lymphocytic leukaemia (CLL) is a type of blood cancer that develops from blood cells called lymphocytes. It is called a ‘leukaemia’ because the cancerous lymphocytes (or ‘CLL cells’) are found in the blood and in the bone marrow. It is described as ‘chronic’ because it lasts for a long time.

Technically speaking, CLL is actually a type of low-grade non-Hodgkin lymphoma and in some people the CLL cells are not found in the blood in large numbers, but rather they are found mainly in lymph nodes. This is then called small lymphocytic lymphoma or SLL because the abnormal lymphocytes are small in size and found in the lymph nodes rather than the blood. CLL and SLL are two forms of the same illness and they are treated in the same way.'

lymphomas.org.uk/about-lymp...

Best wishes,

Newdawn

[deb1610 in reply to Newdawn]

Wow that was a great explanation Newdawn👍🙂. The last pet scan showed him lit up like a xmas tree per his dr. He was on Imbruvica at that time.

[ezabella in reply to Newdawn]

Thanks Dawn for explaining SLL, which was found in my liver. I have CLL in my blood, and a mixture of CLL + SLL in liver.

Ezabella

[Cindy1462 in reply to ezabella]

I didn't know you could get it in your liver? I have to have a liver ultra sound on Thursday as my recent blood test showed my liver function was deranged. I wonder if this is the same as yours? What is the treatment if you have it in your liver? Thank you.

[ezabella in reply to Cindy1462]

My liver function test has been always showing increase in 2 enzymes since I was diagnosed with CLL, but following some pain in my abdomin area, an us scan showed lesions in my liver, then CT and MRI done. Later a biopsy in liver was the only method to know what are these lesions, which proved CLL & SLL in liver. So far no treatment just monitoring LFT closely. I am tetrified always.

Ezabella

[greygirl in reply to ezabella]

Ezabella, we all feel anxiety like you because of our diagnosis and the problems we may have to face! But I try to put it in perspective like any problem, say, for instance can`t keep up with the bills, can`t find a job or family problems that don`t go away. The anxiety for these issues is just as real as ours. If you can focus on others and help them it can alleviate some of the anxiety and you will feel better emotionally. This has helped me. I also have shown little lesions on my liver and kidneys but the centimeter is so small no one is alarmed. In fact one on kidney went away. Yours may eventually go away with treatment also. Our bodies are wonderfully made and have the capacity to deal and heal without our knowledge of it! Everyone here will help you through this apprehension.

[ezabella in reply to greygirl]

Thank you for the comforting words. Life bring us lot of challenges to live with, but when it comes to health it can be the most difficult challenges. I am trying to manage anxiety by exercising, shopping, and being physically active; changed my diet, I also set up a regular donation since diagnosed. I think the first two years after diagnosis brought me high level of anxiety, but made be strong as well.

Ezabella

[fish61 in reply to Newdawn]

I will bet the ranch that people with CLL will always say that they have CLL.. not SLL/Cll..

Damn , Newdawn I was diagnosed with SLL /CLL 5 years ago and have never heard it explained the way you did... it gives me a better insight into the problem.. at MD Anderson I was visiting a Lymphoma specialist and a leukemia specialist... It never dawned on me that either on could treat me....I ended up with the leukemia MD .... when asked what disease I have I always say CLL .. I thought the SLL took a back seat.. but your explanation is the one that we non-med people need...

[Newdawn Administrator in reply to fish61]

I can't take credit for it fish, it's from the link I posted. However, I'm keen to source explanations that are more easily understood because the one thing about CLL or SLL, it can have you adrift in a sea of technical complexities!

Regards,

Newdawn

[MichelleM61 in reply to Newdawn]

Still you found it-Thanks 😊

[greygirl in reply to Newdawn]

I guess its described as I read once as "Aleukemia" in which you can already have CLL but doesn`t show up on blood test but you can look back now on some of the strange symptoms that you would in a thousand years not attribute to cancer!

[MichelleM61 in reply to Newdawn]

Thank you Newdawn for explaining this. I've often wondered and you explained so well!

[greygirl in reply to Newdawn]

I happened to be researching the difference between CLL and NHL{my cousin on mom`s side has NHL) my question isn`t the treatment for NHL different from CLL? And if they do, what happens if one is misdiagnosed as having CLL but really has NHL? I`m asking this because when I was looking over a checklist of the differences between the two I fit more into the NHL list than CLL! Especially a swollen abdomen has always been an earmark for knowing my cancer is growing without looking at a blood test. Yet, on the checklist swollen abdomen is not checked on CLL column. do people who have NHL suffer bleeding, low RBC`S etc. I am not suffering night sweats, fevers, or bleeding either and right now my lymphocyte count is 299.000. Only indication of trouble is swollen lymph nodes, 02 issues on exercising and tiredness to do it. Any ideas on this?

[AussieNeil Partner Administrator in reply to greygirl]

CLL is one of the many Non Hodgkin's Lymphomas. NHLs have many symptoms in common and as you'll have read from what members report, CLL symptoms vary incredibly from individual to individual. Hence the importance of a Flow Cytometry test, which looks at the cell surface 'fingerprint' of the lymphoma to determine which NHL we have. Sometimes the result can be difficult to interpret and very rarely, it is possible to have two different NHLs at the same time.

Yes, treatment does depend on the NHL type.

Neil

[cook4650]

I ditto everyone's gratitude at the very articulate explanation of CLL vs. SLL/NHL. So here's my question, more about the "fine tuning" of the matter. If your cancerous lymphocytes appear in BOTH your blood AND your lymph nodes, would it be correct to say you have both CLL and NHL? It almost sounds to me as if it doesn't really matter, except perhaps to whichever specialist you are talking to at the time!

[Newdawn Administrator in reply to cook4650]

Hi Cook,

SLL/CLL are amongst many of the Non Hodgkin Lymphomas, with SLL the lymphoma (or solid tumour) manifestation and CLL the leukaemic (peripheral blood) manifestation. Often the cut off point for a SLL diagnosis instead of CLL is a presentation on flow cytometry of under 5 (or 5,000 in the US). However people with SLL may begin to present with higher absolute lymphocyte counts and it's questionable at that point whether it's then classified as CLL. A proportion of CLL'ers also go on to be classified as having SLL when the main manifestation is in the nodes etc. So many of us have a bit of both but maintain the CLL classification when the levels are higher in the peripheral blood.

NHL is the over-arching condition for both according to the World Health Organisation. So it is correct to say you always have NHL if you have CLL. To some extent its academic because the approach to them is the same but it's known that some treatments are better than others at clearing out the bone marrow and reducing bulky node size.

Hope that helps to explain.

Newdawn

[greygirl in reply to Newdawn]

can a person only have NHL-and I`m guessing they don`t have high abnormal lymphocytes circulating in their blood? I just know my cousin has been in remission for years and I just keep going along waiting for the next treatment!

[Cllcanada Top Poster CURE Hero in reply to cook4650]

CLL and SLL are the same cancer, but they appear differently. Both are a subtype of NHL.

CLL is on one side of the coin... it appears primirily in the blood, nodes, spleen and bone marrow.

SLL is the other side of the coin, it appears in the nodes primarily, the spleen and bone marrow... it does not appear in the blood, initially.

So, they are treated exactly the same, however they are staged differently. CLL is staged by Rai or Binet staging, SLL is stage by Ann Arbor staging, used in lymphomas...

Many patients first diagnosed see it refered to as CLL/SLL and think they have two cancers... in fact they have one or the other, and early on it sometimes difficult to know which way it will go.

Ultimately.. if your absolute lymphocyte count [ALC] is raised then you have CLL... normal blood and enlarged nodes or spleen...SLL.

~chris

[Cllcanada Top Poster CURE Hero in reply to Cllcanada]

Pete and repeat! 😜

[kreale]

My husband is taking Imbruvica for N-Hodgkin lymphoma and it's a higher dose than the CLL dose....