The one thing I am finding with this site is that no one ever states what stage they are in. 1, 2, 3 or 4. They only talk about their symptoms. That's good, but it would help me a lot to have both. I was diagnosed one year ago and was then at stage "0" with no symptoms, feeling good. This past Jan, 2018, I am now at stage "1" and I feel tired and run down pretty much all the time. Don't know if this is normal or not. I am a 72 year old female.
A. Theriot
Hi altheriot,
You are correct, we rarely talk about staging.
With CLL the staging is nothing like other Cancers. In other cancers treatment starts immediately to keep you from reaching stage 4, by Stage 4 most cancers are then incurable and fatal.
For us with CLL - treatment is only started when symptoms have reached a certain point, often stage 4 or stage C. They refer to the Rai system (USA) and Binet system (Europe)
lls.org/leukemia/chronic-ly...
SNIP "Staging systems consider certain factors such as:
The elevation of your blood and marrow leukemic lymphocyte counts
Your lymph nodes' size and distribution
Your spleen's size
The extent of your decreased blood platelet counts
The degree of anemia"
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But treatment is delayed until symptoms reach a certain level - see paragraph 4 and Table 2 at this link: bloodjournal.org/content/11...
Len
altheriot:
Please 'lock your posts' or likely few members will reply.
healthunlocked.com/cllsuppo...
caven
CLL staging on the Rai scale used particularly in the USA;
•Rai stage 0: Lymphocytosis and no enlargement of the lymph nodes, spleen, or liver, and with near normal red blood cell and platelet counts.
•Rai stage I: Lymphocytosis plus enlarged lymph nodes. The spleen and liver are not enlarged and the red blood cell and platelet counts are near normal.
•Rai stage II: Lymphocytosis plus an enlarged spleen (and possibly an enlarged liver), with or without enlarged lymph nodes. The red blood cell and platelet counts are near normal.
•Rai stage III: Lymphocytosis plus anemia (too few red blood cells), with or without enlarged lymph nodes, spleen, or liver. Platelet counts are near normal.
•Rai stage IV: Lymphocytosis plus thrombocytopenia (too few blood platelets), with or without anemia, enlarged lymph nodes, spleen, or liver.
Binet Staging system (U.K. & Europe);
In the Binet staging system, CLL is classified by the number of affected lymphoid tissue groups (neck lymph nodes, groin lymph nodes, underarm lymph nodes, spleen, and liver) and by whether or not the patient has anemia (too few red blood cells) or thrombocytopenia (too few blood platelets).
•Binet stage A: Fewer than 3 areas of lymphoid tissue are enlarged, with no anemia or thrombocytopenia.
•Binet stage B: 3 or more areas of lymphoid tissue are enlarged, with no anemia or thrombocytopenia.
•Binet stage C: Anemia and/or thrombocytopenia are present.
I think that whilst people’s staging is important and has clinical implications altheriot, it doesn’t always tell the full story and different systems don’t make instant comparison easy. The added complication is SLL where people can actually be diagnosed and immediately staged at 4 or 5 but not actually be in need of imminent treatment or feel any worse than someone still at Stage 1.
I suspect that’s why people concentrate more on how they’re feeling and their symptoms. After nearly 6 yrs, I am still at Stage A on the Binet scale (dropping platelets could change that next consult) but arguably would be Stage 1V on the Rai scale because I satisfy all the criteria there. It’s quite curious and somewhat puzzling. It’s not always comparable to me.
I’m sorry you’re starting to feel very fatigued but there’s little recognition in the staging levels for that. Many CLL’s can experience extreme tiredness very early in their disease progression and find inadequate medical recognition of its impact.
Best wishes,
Newdawn
Thanks, Newdawn, for the USA staging guidelines. You gave me more information which I will share with all my hemotologist, immunologist, and PCP. I am sure they know it already, but now I know a bit more so I can ask more questions.
SMS
When I was first diagnosed fatigue was a real issue. However, as I also have an autoimmune disease, I didn't quite know what to blame it on. Once I began treatment with ibrutinib my fatigue level became noticeably better.
Some of us are atypical and don't fit any of the staging systems. I made myself crazy going over and over everything I could find about staging. Having a worthless oncologist didn't help. I just don't fit any of the categories.
Late stage 2 early stage 3
Stage 4
Just for completion, the SLL staging uses the Lugano Classification:
Stage I: Either of these conditions applies:
The cancer is found in 1 lymph node region (stage I).
The cancer has invaded 1 extralymphatic organ or site (identified using the letter “E”) but not any lymph node regions (stage IE).
Stage II: Either of these conditions:
The cancer is in 2 or more lymph node regions on the same side of the diaphragm (stage II).
The cancer involves 1 organ and its regional lymph nodes, with or without cancer in other lymph node regions on the same side of the diaphragm (stage IIE).
Stage III-IV: There is cancer in lymph node areas on both sides of the diaphragm (stage III), or the cancer has spread throughout the body beyond the lymph nodes (stage IV). Lymphoma most often spreads to the liver, bone marrow, or lungs. Stage III-IV lymphomas are common, still very treatable, and often curable, depending on the NHL subtype. Stage III and stage IV are now considered a single category because they have the same treatment and prognosis.
I was originally diagnosed as Stage 4 and felt fine even though a CT scan and BMB showed many enlarged lymph nodes throughout my body and significant infiltration of my bone marrow.
On my first relapse I felt exhausted and discovered my lymph nodes were nearly all within the normal range but to quote my consultant my bone marrow was stuffed which was why I was severely anaemic, neutropenic and thromocyctopenic.
Your comments brought to mind a question I've had. I've seen several references to a person's bone marrow being "packed" or "stuffed." What exactly does that mean? I know that the bone marrow is where our blood is produced, and that CLL blood cells are immature (malformed?) to the point that they don't function properly. Can someone explain this to me?
There is a good explanation on the CLL Society website:
"The leukemia cells in CLL reside in the marrow space and this is where they multiply, which can result in “crowding out” of the normal stem cells and cause other blood cell counts, like red cells and platelets, to drop, since they are unable to grow."
cllsociety.org/2017/01/basi...
When someone has a high percentage of CLL cells in the bone marrow, they start to have issues like anemia.
I was diagnosed 9/16 at age 70. I was stage 0. As of January this year I’m stage 3. I will be starting treatment in a few weeks.
That is a good point, before I started taking Ibrutinib, they told me I was stage 4. After more than a year on the medication and lessening of symptoms....really not sure what my stage is now. Just going with 'I feel better' and I am doing everything in my power to thrive and survive.
I don’t know what stage I’m at?’
It usually says at the top of the consult letter your haematologist sends to your GP. I always get a copy sent to me.
Newdawn
Do you? I have no idea what my consultant sends to my gp
It should be standard protocol to copy you into the result of the consult hammy.
You may need to be a more assertive patient and ask these questions particularly in relation to your staging. Do you have an idea as to your blood results and levels?
Regards,
Newdawn ,
Hi: Yes, that is something I never really hear talked about much in regards to CLL. I remember when I was first diagnosed I was anxious to hear that "marker." I think I was in stage 1, due to the fact that I had enlarged nodes but still in w&w with no other symptoms. Over time, in addition to the fact it doesn't have the same importance when you are talking about CLL, I didn't really even want or need to know. I was far more interested in keeping track of my various blood values. They have the most meaning.
USA scale I think I’m stage 0, uk Scale I’m not sure but I have got thrombocytopenia
Since FCR, I find I don’t feel hungry ever. Anyone else get this? Sounds great but I sometimes forget to eat and feel incredibly tired until I have ‘carbed up’.
My experience of CLL at stage 1 is that I feel physically fatigued (like after a really hard training session and 'achy' (like you feel with a really bad does of the flu). What I still find astonishing is my Consultant Haematologist refuses to acknowledge these symptoms and insists there must be another reason. Unsurprisingly, an exhaustive battery of tests have not found anything (else) wrong and there is an absolute litany of CLL Stage 1 patients confirming that they are suffering these self same symptoms.
Go to a CLL specialist who will indeed confirm that this debilitating symptom of fatigue is most certainly from CLL and cytokines produced.
The whole staging schemes are diverse and a mess. Doctors tend not to tell you your stage either. I think what mutation you are and your symptoms matter the most. Plus your monoclonal absolute lymphocyte count and how fast it doubles. I couldn’t even tell you what stage I am. I think it’s stage 1 or 2. Doctor never told me.
No symptoms
My Autoimmune (AIHA) experience so far...and significance of a Coombs test showing positive DAT
No Symptoms Yet...
Richter Transformation possible? 
A bit ignorant!
