ANN ARBOR STAGE 3

[wizzard166]

I'm looking for input from anyone who has gone through CT Scans with respect to Lymph Node results. In ten days I'll get the full low down from my highly regarded Specialist at Dana Farber in Boston, but I've been reading through the five or six dozen different tests that were done five weeks ago, and wondering how one thing makes sense.

I think from a blood and bone marrow standpoint I'm not yet highly active, but I'm on my way. I think the results I'm reading will likely lead to advice from my Specialist that I can still be on Watch and Wait. But the CT Scan results, and what I am absolutely certain leads to an Ann Arbor Staging of level 3, is worrying and confusing me. If I'm still relatively low WBC, and the Bone Marrow is Moderately Cellularized (44% Lymphocytes), why would I be Stage 3 on Ann Arbor.

The Ann Arbor staging system is basically almost all lymph node involve ment. If a person has enlarged lymph nodes both above and below the diaphram, they are Stage 3. I have them on both sides of the diaphram in multiple areas, and many are between 1.5 and a little over 2 centimeters. I've read that over 1 CM is not good, and mutliple areas is not good, and above and below the Diaphram is not good. It is bad enough to call it Stage 3.

So my total confusion and increasing worries are now building up. Maybe I shouldnt have done all this reading. To any of you with alot of knowledge, does it make sense that my white count can be so low (40,000), my Bone Marrow Biopsy is only 44% Lymphocytes (30% is where they want it according to what I've read), but my lymph nodes seem to be having a huge party on their own.

I know I'll get some input from some of you, and I appreciate it ahead of its delivery.

Carl

[wizzard166]

Oh I guess I should add I had 82% Trisomy 12, and IvGH Non Mutated

[wizzard166 in reply to wizzard166]

And Beta Microglobulin 3.4 (normal is 0 - 2.2)

[AussieNeil Partner Administrator]

Hi Carl,

Why are you using a staging system for lymphomas, (which you have acknowledged), when we have two staging systems specifically designed for use with CLL, the Rai and Binet staging systems? As you apparently appreciate, with CLL/SLL, Ann Arbor really is only useful if you have the Small Lymphocytic Lymphoma form of CLL/SLL, but as you have a WBC of 40,000, you most definitely have the CLL presentation of CLL/SLL.

Incidentally, at diagnosis, I was told I had CLL/SLL, but my Lymphocyte count was under 5,000, so I could validly use the Ann Arbor staging system, better fitting with the SLL presentation of CLL/SLL. My bone marrow infiltration was considerable and I had pancytonenia (more than one blood count falling below the relevant reference ranges) and an enlarged spleen. I met the criteria for Rai stage 4 according to my specialist and Ann Arbor stage 4 by my reckoning. Both staging systems predicted very similar dire survival times, yet here I am, doing well over 11 years later, having commenced my first treatment just 3 months ago.

Neil

[wizzard166 in reply to AussieNeil]

I was using the Ann Arbor because it was the only one that addressed Lymph Nodes, and actually some of the tests I can read reports from say this: consistent with involvement by the patient's

chronic lymphocytic leukemia/small lymphocytic lymphoma.

So unless I'm misunderstanding what they say above, maybe I have both small cell lyphocytic lymphoma and CLL. I don't know, but that is what it reads in numerous test results.

Other than that what I'm saying is that I have enlarged Lymph Nodes above my diaphram, below my diaphram, in my abdominal area near the pancreas, and a load of them in my neck. In all areas they have sizes above 2 CM, but also alot just over 1 cm. From what you are saying about staging and CLL the large lymph nodes would be meaningless; however, with respect to Non Hodgkins Lymphoma or Small Cell Lymphoma, my lymph node situation would seem to be a very clear Stage 3. Thats why I'm so worried and confused. What do I have CLL or Small Lymphocytic Lymphoma, or maybe both?

[cllady01 Former Volunteer in reply to wizzard166]

Wizzard, I have CLL/SLL---we ALL have the leukemia called CLL/ SLL, with the designations being as Neil has said in regard to the lymphocytes count.

When this leukemia was first designated they were treated as 2 different diseases until it was determined to see them as one type leukemia.

[AussieNeil Partner Administrator in reply to wizzard166]

You can't have two separate diseases of CLL and SLL, because they are the same Non Hodgkins Lymphoma. It's just that CLL/SLL has a very heterogeneous expression. Historically, if it was diagnosed by a haematologist from a blood sample, it was called CLL and if by a pathologist doing a node biopsy, SLL. In 1994, the World Health Organization merged both of these B cell haematological malignancies into the one CLL/SLL designation. Treatment is the same.

Importantly, don't worry overly about your lymph node sizes. The relevant criteria for starting treatment is when they exceed 10cm in their largest dimension.

Neil

[wizzard166 in reply to AussieNeil]

Thank you once again Neil.

[Hidden]

I would spend my time researching what CLL drug trials are being run by Dana Farber that have open enrollment. If you should get the unexpected news that they want to start treatment, then you are prepared to discuss different trials with knowledge and make an informed decision.

[wizzard166 in reply to Hidden]

Hey Greenblue thank you for that input. With your info, and Neil saying 10cm is a size just before treatment sometimes, It adds to my comfort level prior to seeing my Specialist at Dana Farber. One of the other members on this site just advised me that Mass General and Brigham Women's just suggested all non urgent appointments be re scheduled. If that includes Dana Farber, which it might, I'm a bid down wilth this news. I really can't wait to hear the full analysis from Dr. Brown.

[HopeME in reply to wizzard166]

Wizzard: You are correct that non-essential appointments in the Boston hospital system have been rescheduled or moved to a phone call format. However, I’m pretty sure that isn't the case with Dana Farber. The show must go on as they say. I did receive a note from Dana Farber stating that only patients will be allowed into the hospital with very few exceptions.

Good luck with your upcoming appointment.

Mark

[wizzard166 in reply to HopeME]

Hey Mark. It was another Dana patient who got a message on Patient Gateway that Mass Gen and Brigham Women's appointment are cancelled, except for urgent visits. I did not get the same message on my Patient Gateway, and the appointment section of Patient Gateway still shows my Blood Work followed by Dr. Brown on March 31. So I'm hoping that because I'm in Dana Farber and not Brigham Women's right now, that I'm still scheduled. Very weird that he got the message about cancellation on Gateway and I didnt. I did read that a number of Staff in the Nursing Department at Brigham Women's were diagnosed the other day with the Corona.

[HopeME in reply to wizzard166]

My primary care doctor is located at MGH and I’m treated at Dana Farber for my SLL in Dr. Brown’s group so I straddle both systems. A nonessential appointment I had scheduled this coming week at MGH was cancelled. My appointments in April at Dana Farber haven’t been cancelled. I think you will be OK. The medical industry is trying to open up capacity for CV in Boston ahead of the expected sharp increase but Dana Farber is trying to keep its services operating as normal as possible for obvious reasons.

Good luck on your trip up from Florida.

Mark

[Nikki4470]

My mom has SLL, Trisomy 12 and mutated IVGH. She was Stage 1 at diagnosis two years ago. She went for a MRI recently and they found lots of lymph nodes from her chest all the way down to her groin. The MRI suggested a “restaging”. Her primary care and Onc at Dana Farber suggested treatment solely based on the extent of number of lymph nodes. I think the biggest one was 4 cm. She is hesitant to start treatment because she feels fine. So, we are sort of in the same position as you are right now wondering where she really stands and if she should treat just based on the extend of nodes.

[wizzard166 in reply to Nikki4470]

Nikki I think the doctors are going on the proliferation of the lymph nodes and the size, with the call they are making. Please understand I am not a medical professional, but I read alot and my major was biology (but I graduated 52 years ago from university). From what I gather, and this is why I was so worked up about the mass of large lymph nodes (and locations), the danger with so many cancerous lymph nodes becomes spreading to other organs. In particular those in the lower abdomen around the pancreas and or liver are more likely to spread. I learned back in 2016 when I was hospitalized for double pneumonia and they took CT Scans of the chest, thant any growth over 1 cm was suspicious, and over 2.5 cm had a high liklihood to be cancer. If they are suggesting that your Mom start treatment, even though she otherwise fits the description of a typical Watch and Wait, my guess is they are worried about potential of spread to organs. Don't bet on what I'm saying, its just a logical and somewhat educated guess.

That is why I have been getting a bit worked up. Neil relieves me somewhat with the comment about nodes getting to 10 CM, but I would imagine the oncologist who was still waiting for starting treament when over 5 CM should have been more concerned before it reached 10. What has me more than a little preturbed is the number of locations, not only above and below the diaphram but also left and right. I would think that is a pretty good red flag, but I'm not a doctor. I'll listen to Dr. Brown; afterall, that is why I wanted her as my Quarterback. Tom Brady had a conditional requirement for where he landed recently, that he had to be the one who called the plays. I'm going to rely on my QB to call the plays too, and probably your Mom should listen to the Doctor.

[AussieNeil Partner Administrator in reply to wizzard166]

Blood cancers are different to solid tumours, which is why we get better care and statistically live longer under the care of a CLL specialist or at least a haematologist secialising in blood cancers rather than an oncologist. You are in good hands with Dr Brown.

The only place CLL/SLL cells can't be found is in our corneas. That's why we can't donate blood or organs. Metastasising cancer is hence a meaningless term when it comes to CLL/SLL (though the extent of nodal involvement can be used in staging).

CLL cells sometimes do build up in different parts of our body besides the usual nodes, spleen (which can be considered a specialised large lymph node) and bone marrow. The liver is not infrequently involved, but our kidneys can also have some involvement, with it rarer elsewhere. Treatment with the regular drugs resolves this, although with SLL, if the concentration is limited to a few locations, radiation therapy can be effective. It can even be curative if SLL is limited to no more than a few closely clustered nodes before bone marrow involvement occurs.

Incidentally, CLL cells don't live forever. Some clever experiments by Nicholas Chiorazzi with heavy water determined that they just live longer than health B cells and hence accumulate. CLL cells are more vulnerable in the peripheral blood and readily break when a blood sample is taken, because they have a weaker cell membrane. That's why we often see the lab comment "Smudge cells present" on our blood test results. They also can be killed easily in in vitro experiments, which is one of the reasons behind lots of claims for alternative treatments. Unfortunately in their nodal environment, they readily survive due to the way they cocoon themselves within a protective microenvironment. That's a big reason why in vivio results are often disappointing.

Neil

[wizzard166 in reply to AussieNeil]

Thank you so much Neil, your knowledge and way of sharing it reminds me much of a good physician. I wouldnt be shocked if you actually are one. Having my Brother around over the years has helped me, at times when I let myself get overly excited about things I'm feeling or going through. He is an Opthalmologist, but I never cease to be amazed at how he knows so much about areas outside his specialty. It really helps someone like me who knows a little more than average, will try to read medical articles and studies, and then gets all worked up; however, having truly knowledgeable people like you to calm me down is a blessing. Thanks again.

[Ironj]

I have SLL AnnArbor stage 4 at diagnosis with zero symptoms I’ve been on watch and monitor for about 2 years. No treatment my bloods are all normal other then my alt/ ast are slightly elevated. You automatically are stage 4 when it’s in your bone marrow.

I had an ultrasound a few weeks ago and my spleen is slightly enlarged and my liver is also slightly enlarged. My Dr thinks it’s diet related because all blood work is normal. So I’ve been on a very strict diet. I’m also diabetic so I’m wondering if that has anything to do with both organs being enlarged.

Again I was told by my specialist and local oncologist that staging means nothing. But then I say why do they do staging then. It’s not the same as solid tumor staging.

[wizzard166 in reply to Ironj]

Hey Iron Man

Good to hear from you again, and thank you for sharing. It does lower my anxiety to hear you were Ann Arbor Stage 4 upon diagnosis and still are on Watch and Wait. I really don't want to start treatment, and if I live another twenty years with no treatment ever I'll be thrilled. I was really nervous when I realized I was without a doubt Stage 3 (I suppose I could be 4 but hope I'm not). My large nodes are both sides of the diaphragm, which alone puts you in 3, and on top of that they are in multiple area including around the pancreas and liver. My Spleen is slightly enlarged, but sigh of relief the CT Scan didnt see any Liver damage.

It is highly unlikely that your diet has anything to do with the enlarged Spleen. That is a very common sympton in almost every CLL patient, because dead red blood cells are recycled in the Spleen and Platelets and White Blood Cells are stored there. Our over supply of White cells that don't die (the mutated CLL White Cells) causes the Spleen to enlarge. In some cases it enlarges too much and has to be removed. The Spleen plays a function in the Immune system too, so losing it isnt a good thing.

[Ironj in reply to wizzard166]

Good evening Wizard

I’m going back in 3 months to see if the liver and spleen has gone down, hopefully it has.

I agree with you regarding that an enlarged spleen can be and does happen with CLL.

The Local oncologist said with my blood counts being in normal range and that both my liver and sleep are both enlarged he doesn’t think it’s SLL related. I said you really believe it could be diet. He said yes you a diabetic and it’s common to have an enlarged fatty liver with diabetes and sometimes the spleen will also get enlarged. I was shocked. I came home and seen Dr Google and it did say the same. It went into say sugar intake as well as salt intake is just as bad for your liver as alcohol again shocked me to read that.

Regarding staging again. When I was diagnosed the only enlarged lymph nodes were just a few above and behind my pancreas. I had several ct scans, 1 MRI and a pet scan and the only enlarged nodes we on one side of my abdomen and a BMB showed 5 % involvement. So just because the BMB showed involvement put me in a stage 4. When I seen that on my report I freaked out and called my specialist and said what do you mean I’m stage 4 ? He said it means nothing other then it’s in your bone marrow. He said it doesn’t change the out look on the pace of your SLL OR LIFE EXPERIENCE. I also asked my local oncologist. My local oncologist said Ann Arbor staging is proper with all but he went onto say this. I don’t think your specialist should say your stage 4 but stage 1. He said everyone with SLL or CLL has bone marrow involvement because that’s where your cells are made. So if your specialist is going to say just because it’s in your bone marrow everyone with cll or sll is stage 4. So that being said I’m still confused on this staging and why it’s used if it’s of no consequence.

[country76]

I am no expert however you can have more lymph node involvment, SLL. My blood count highest 138k had more involvment, Cll/Sll. I had lymph nodes in several places and extremely enlarged spleen, 4x normal.

After one year on Ibrutinib my CT was normal and WBC hovers around 11-12.

My doctor said most people are both Cll/Sll.

[wizzard166 in reply to country76]

Hey Doggers, thanks for the additional input. I'm too early in this game to know how significant alot of these readings are. As long as my appointment doesnt get cancelled in Boston eight days from now, I'll get a full and concise low down on where I am. Sometimes I can read too much, and research too much, and then begin to get anxious when I shouldnt be. It is great to have a fabulous place like this site, with a wonderful group of people travelling on the same boat and river.

[country76 in reply to wizzard166]

I did the same thing when I found out in 2012. My doctor said I would live to see a cure and probably within 10 years. Knowledge is power. Everyones flavor of Cll is different. The research doctors are finding newer therapies every year. Hopefully a cure is around the corner. Stay healthy