I’m told I have a slow growing form of sll ,I’m 46. I had a flow blood test it starts with a C I can’t remember the name. My understanding is that this test says if your white blood out needs to be over 5000 my number is 3% so it’s 64 a long way from 5000. My Dr said we a splitting hairs to even say you have sll even though my FNB cam back saying I have sll , I’m very confused. That being said my dr says I could go decades if never without symptoms. How long do people live with the cancer ? Any help would be appreciated.
Sll lymphoma small B cell : I’m told I have a... - CLL Support
Sll lymphoma small B cell
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Ironj
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AussieNeilPartnerAdministrator
Given about 30% of us never need treatment, it sounds like you may fit within that group, given you have a slow growing form of SLL. But if you don't have any swollen nodes, you may actually have Monoclonal B-cell Lymphocytosis (MBL), which is a precursor condition to CLL/SLL and a much better diagnosis! This pinned post on the difference between CLL and SLL may help you appreciate your possible diagnosis: healthunlocked.com/cllsuppo...
As you'll read, SLL/CLL are caused by the same clonal B-Lymphocytes, but 'SLL' cells prefer to collect in lymph nodes and not in the blood. MBL is quite common in older people. Only a few percent of those with MBL go on to develop CLL. The test you probably had was Flow Cytometry, which looks for clonal B-Lymphocyte markers. That can show positive for MBL/CLL/SLL even with small amounts of clonal cells in your blood.
I recommend that now you are armed with more knowledge, you make an appointment with haematologist specialising in blood cancers, or preferably a CLL specialist. You may find that appointment will put your mind at rest.
Neil
Sorry I failed to mention that I do have 2 swollen lymph nodes 3.2cm by 0.9 and the other 1.7 cm by ? Behind my stomach area. How long do people my age live with this on average ?
Welcome , though this is the club none of us wants to join. First rule for newcomers is stay away from Dr. Google until you have a pretty good understanding of which resources to trust. When I was diagnosed I was very ill and everything I found said I'd be dead in 5 years. That was in 2003, April, in fact, so I'm almost at 15 years and doing well.
There is a good explanation of MBL on clltopics.org Type MBL in the search box, skip the abstract, and go down to Chaya's explanation in plain English. Chaya has a gift for making the complicated understandable.
She also has a good explanation of flow cytometry and the other main tests - Three Important Blood Tests. You probably won't need the other two now, but it's helpful, when others talk about them, to know what they are talking about. The site is no longer active, so information about treatment is totally dated, but the basic information is very good.
The one link to have handy is cllsociety.org In addition to having good basic information, as well as up to date about treatments, trials, etc., the home page includes a list of links to reliable, CLL specific resources. Don't get in too deep. You may never need more than the most basic information. The site also has a list of patient recommended doctors, with links to two other lists.
The Patient Power link includes great videos done by Dr. Susan LeClair about understanding your blood work. She, also, has a gift for making complex issues understandable.
The best thing I did for my memory is to record appointments. It really helps to be able to go home and listen to what was said more than once.
Keep us posted and keep breathing. It sounds like you will be around for a very long time.
Very well said, I have been recording my appointments Because I forget what we talked about.
I have seen oncologist he is telling me not to worry but I’m freaking out. You correct about the flow test name. My # is 64 he said until it gets to 5000 they really don’t consider it sll unless I’m misunderstanding him. He said you have a long way to go to get to 5000. I haven’t had a pet scan done yet he said 4 months and I will get one. So I’m wondering how he came up with stage 1. He said I could live for decades with this without any symptoms or never have a symptom. I’m rambling on because I’m a wreck over this. I’m getting a second opinion in 4 weeks at sloan Kettering as well.
I'm glad to hear you are getting a second opinion at Sloan Kettering, not just because it's an excellent idea with any cancer diagnosis, but because PET scans don't work well with CLL/SLL. It is too slow growing to show up - and yours appears to be very slow. CAT scans work much better, but even these are seldom used nowadays by CLL specialists.
Thank you for the reply, I’ve been googling like a mad man. The googling is driving me nuts. I’m so happy I found this site so I can get very helpful answers from people that know. Everything I read says it’s a 5 year life expectancy and my dr is telling me otherwise.
STOP GOOGLING!!!! You are finding the same stuff I found 15 years ago. Dr. Google lies!!! LOL!
I agree this is the site I’m staying with , no more googling for me
Can I ask how old you were when you found out ?
PM (chat) sent with personal information, as the post is not locked.
Pet scans are not very informative in CLL, even CT are not recommended at diagnosis now, but Flow Cytometry is definitely the right diagnostical tool. We have Absolute lymphocyte numbers in thousands in US, so not quite sure where the number 64 comes from?
Excellent you are going to see CLL specialist at Sloan, they will give you a comprehensive picture for sure.
Meanwhile try not to spoil your today worrying about tomorrow/ know it is very hard/. Best of all, G.
Thank you , the 64 # came from the Dr he said 5000 is the number for that test is what they use as a base line and my % of that 5000 was only 3%. I don’t understand what he was really saying but he said it was extremely low. I agree Sloan-Kettering should put my mind more at rest.
MsLockYourPostsPassed Volunteer
Start now collecting copies of all of your tests - labs and any others done and start a file. You will start to see patterns, and the numbers will start to make sense, but don't worry that they don't right now, today. Your flow report is excellent and you are doing exactly what all of us advise and getting yourself to a specialist. NYC has some of the top specialists in the world!
Correct I’m keeping all my files. Also sloan Kettering is linked to my hospital and they already have cats scans , MRI, blood test flow test and biopsy tissue. This all started with a diverticulitis attack that started the cat scans that seen the swollen lymph nodes. My Endocrinologist told me that if I didn’t have a biopsy done and just did the flow test , he would have just called it swollen lymph nodes ( the flow test called it a different name but means swollen lymph nodes ). And said I’ll see you in a year as a check up. People are telling me Sloan Kettering Is a great place for answers.
Anthony Mato just moved to Sloan. He is a well known name in the CLL world. The one complaint about Sloan that I have seen in the past is that once you start with a doctor you can't change. Worth asking about. I would work to see Dr. Mato if I were in your position and considering Sloan. I know some of his former patients and they love him. One plus is that he just moved there, so he probably won't be looking at moving again any time soon.
Anthony Mato is the director and is the Dr I’m seeing
I’ve heard great thing about Dr Mato
Ironj, deep breaths, it is alarming to hear the c word. You have made a good start coming to this forum, plenty of friends, wisdom and support. As has been said research carefully focusing on recognised sites. Not sure where you live in the world but sites such as patient power, leukaemia care and the CLLSA are terrific sources of fact.
Stay strong
UK Sparky
I agree I love this site I have felt so alone for 2 weeks , I have a wife and little girl that I’ve been hiding my anxiety from . I don’t won’t to worry them , I haven’t told my little girl I don’t want to scare her.
I can understand the wanting to care and protect my family. I am blessed with a strong wife who I decided to share with straight away. I read all I could before telling my children and their partners, all in their twenties at the time. I then gave them links to info on CLLSA. My best buddy is my four year old grandson has enough to contend with so we share hugs and love and fun, that is enough.
Thoughts and prayers
UK Sparky
Thank you for sharing your story. I told my wife as well, but not my daughter at this time. If my second opinion is as positive as my first I think I’ll tell her in time. She’s early teen with a lot of emotions going on lol at her age. I’m hoping and praying this sll doesn’t cut my life short. I want to be around for a long time.
In the US lls.org would be the resource. They have a good booklet for patients and another for caregivers and family members. I sat and compared the two page by page once during a long infusion. They are essentially the same. The booklet for patients is a little more detailed. Neither is really written for a young teen.
It sounds like you are an officially boring patient - boring is my favorite word in medicine! You may never have to deal with more than periodic monitoring, in which case the decision about whether to tell your daughter, and if you decide to - when, will be a personal one.
Children often pick up on the fact that something is different. I taught elementary for 34 years, and I often had students either come to me to express fears about something going on at home or just generally fall apart behavior wise for no obvious reason. If you feel like your daughter is picking up on your stress it might be better to say something.
You could start a post here about how parents talked to their children. There have been some good comments about it in the past. At this point something very low key about the doctors checking to make sure that everything is alright might be good and would also not leave her feeling that you are keeping secrets from her about important issues.
Thank you , I hope I’m a boring patient. The Dr said he will monitor me every 3 months for a period then move it to 6 months apart . is it true in your opinion that sll may never become sympathetic and if so in what percentage of people ?
You know your daughter better than anyone else so you’ll know when the time is right to tell her. I did not tell my then teen sons at initial diagnosis as I was still trying to wrap my head around it - once I felt ‘comfortable’with the disease (about 6 mos later) I told my sons - since my outlook was now more positive they did not take it badly and were more curious than unhappy. I told them as much as they wanted to know...I’m sure they googled the rest. I’m still on watch and wait 8 yrs later - looks like I have an extremely indolent form for which I’m grateful.
Take care hope this helps in some way -
It has helped thank you for taking the time telling me your approach. Question you have been on wait and watch for 8 years. My Dr is telling me I could be on wait and watch for decades and my never have a symptom. Do you think that’s reality or him just saying that to calm my anxiety ?
Given 30% of us don't need treatment and you have an indolent form of CLL, your Doctor's comments is quite likely to be your reality. Some of us get to lymphocyte counts in the high 200 (thousands) or into the 300 (thousands) before needing treatment. I was diagnosed with stage 4 CLL/SLL over 9 years ago and am still in watch and wait.
The post below is about the challenges of predicting survival time at end of life and you are far from this. Relaxing and enjoying life is the best thing you can do right now to ensure you fall into the 30% category. Many of us find that our CLL diagnosis is a wake up call to improve our quality of life and that it can also improve our quantity of life. Don't let your diagnosis steal the pleasure of life from you when you have so much to live for!
healthunlocked.com/cllsuppo...
Neil
Thank you Neil , I didn’t know the # could go that high. Your advise is well taken and I do appreciate it. I will focus on the positives in my life rather then letting my anxiety over sll keep me down.
This is an assumption only and the Sloan Kettering follow up is definitely needed to put your mind at rest - most doctors I know are extremely straight forward about their proclamations and they usually have good prognostic indicators for back-up; so he probably means what he says - Studies say that approximately 30% of us will never need treatment for CLL - that being said - please ask Sloan Kettering if you have MBL, CLL or SLL - CLL and SLL are treated much the same - one is found more in the blood and one hangs out in the lymph nodes (SLL).
This is the best place to look for any information. I think some of the people here know a bit more than most doctors. But still listen to your doc and ask questions. Wishing you the very best.
Thank you, I feel a peace that I have people to chat with that know what I’m going through.
Ironj, I would not put much stock in to what you read unless it is very , very current. The treatment landscape is changing so much. Especially within the last few years or so. There are numerous amount of clinical trials going on with new drugs for the treatment of CLL. As for the markers and such, I have seen ones with bad markers go for years without treatment. But when treatment does come , there are so many more options than in the past. Even though CLL is a complex disease, the disease is being will more managed. I know it is easier said than done. But try to find a sense of calm. I have been where you are at and thought I was losing my mind. With me, it was faith that carried me through. Almost everyone diagnosed has been where you are at. They have found calm in one thing or another. It will come for you as well. It is a great thing that you are going to Sloan Kettering for a second opinion. Just as a foot note - the father of immunotherapy was a doctor associated with Sloan Kettering. He was a early pioneer in the way cancer treatments are progressing today. His name was Dr. William Coley. So, I will say to stay positive, try to find a sense of calm, and try not to let this become a big part of you. You are still who you are. STAY STRONG AND REMEMBER THAT A CURE IS COMING SOONER THAN LATER J.R.
I am considered SLL and have been actually HOPING for my blood to reach CLL levels (5000 threshold) so I can be accepted into the latest trial at OSU.
CLL is tough. It is a hard thing to grasp with, having a form of cancer that isn't immediately life threatening. Should we think about it every day? Should we live our lives like we are healthy?
The way I have been coping with it, we are all almost in the pefect place for the disease we have. We have options to take pills instead of doing chemo for our therapy. Remember in the 80's and 90's when HIV/AIDS was life threatening? I sure don't, I was born in '92. But from what I hear, HIV/AIDS at this point is about taking medication to keep the disease in check.
I am 26 with this disease, and I have a lot of hope for the future. I feel envious of others who are 20+ years older than me who have lived their lives and are diagnosed with this disease. What pulls me back from those feelings is the understanding about the drugs we have today and in the future that will make this disease obsolete. I'll say this, don't let this worry you. You undoubtedly have experienced more than I have in life, so you will be fine. Life is always throwing curve balls, but it takes a lot of time in the cage to learn to recognize the drop, and be able to smash it.
Best,
CptN.
Hi Ironj -
Your story feels so similar to mine. I was diagnosed with SLL at 46 yo last July after a biopsy on a node under my arm. The doctor called me at 4:45 on a Friday afternoon to tell me I have cancer . . . and of course I hopped on the internetz for medical advice (good idea, right?). I was so freaked out! Everyone in my family lives to 80s or 90s, and here I was learning that my diagnosis gave me 5, maybe 10 years at best. It was a really dark time . . . obsessing, not being able to sleep, constantly worried, not being able to concentrate on anything, and everything seeming meaningless.
I found this site sometime that weekend and it has helped a lot. First, I learned that (as you've heard here) the internet info is really outdated. As my oncologist said "You're not even in that group of people they're reporting statistics on" because the treatment landscape has changed so much. In fact, there's a really good chance that by the time we need treatment (if ever) that there will be a short dose of something likely to produce a long-term or permanent remission. Second, I learned that this disease plays out very differently in different people ("highly heterogeneous"). So yes, it could get bad but it also could be pretty irrelevant in the long run. It led me to think that the diagnosis didn't give me much info I didn't have before. Yes, I'm mortal and something terrible could happen tomorrow but it's also likely I'll be ok for a long while.
Your perspective and outlook will improve, I promise. For many of us, the worst CLL/SLL thing that ever happens is the diagnosis! But we humans are really good at adapting to new information and moving on. Eight months after diagnosis I'm not freaked out, and while I think of my SLL often it's not every day and life seems hopeful again. In fact, I'd say paradoxically that my diagnosis has improved my quality of life, as I appreciate the beauty of being alive in a way I really couldn't before.
And about SLL vs. monoclonal b-cell lymphocytosis . . . I'm like you that I have some of these cancer cells in a lymph node and "a very small population" circulating in my blood. We need to reach a threshold of 5,000 cancer cells (not just general white blood cells) per milliliter before they call it leukemia. There's some evidence that 5,000 is a biologically meaningful threshold . . . above that the risk of progression goes up quite a bit. Many people live with this low cell-count for the rest of their lives - just because these cells are there doesn't mean they'll take off and become dangerous.
Take care. Sending good thoughts for healing your way.
- Marie
Your a 100 % spot on with what my Dr said about the 5000 # I’m only at 64 he said It could double every few month or stay at that # forever. Thank you for the information.
MsLockYourPostsPassed Volunteer
The story about how the 5000 became THEE number is funny. I don't remember where I first heard it or who all of the players were, but basically many years ago a small handful of CLL specialists, I think Kanti Rai was one, were discussing what the cutoff should be and just chose that number. Maybe CLLCanada, aka Chris, knows the whole story. He always knows things like this.
I believe it was Terry Hamblin that recounted the story of how Kanti Rai (of Rai staging fame), Thomas Kipps and he decided on the 5(thousand) threshold over a lunch together. There was a need to set a threshold and they collectively came up with this figure, though I think Terry may have nominated it. (Perhaps someone can find it in Terry's blog to confirm.)
That it has stood the test of time just shows what can be quickly done when three of the top CLL minds in the world get together.
MsLockYourPostsPassed Volunteer
I'm sure Terry Hamblin was one of the players. I really miss him. I thought maybe Keating was the third. Hopefully someone will find the story.
Ironj, I just want to give you a reason to be optimistic. I was diagnosed with SSL in late1994 at the age of 39 and already at stage 4. I started treatment in 1995 and was in remission until 2007 when again I needed treatment. My second remission is still holding and I feel fine. I know I'm one of the lucky ones but with the new treatments that are coming along it is likely that you will be fine for years to come. You need to live life to the full and don't let this disease rule your life.
Jacques
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