I am 50. B cell. Swollen lympnodes in stomach area. 15.5 cm swollen spleen. Non Hodgkins. Indolent? I think I heard.
I'm not clear on "living a long time" but the oncologist isn't doing anything... but on the same tone, makes this sound like a 5 year death sentence.
What about Richter syndrome? Is that guaranteed?
Any help?
Hi Dominic, I see you just joined this forum yesterday, so welcome. Our main focus here is chronic lymphocytic leukemia (CLL). If your diagnosis is Non Hodgkin's Lymphoma, you may want to check out this group: healthunlocked.com/non-hodg...
If you're dealing with CLL, a good starting place is our “Newly Diagnosed” section: healthunlocked.com/cllsuppo...
A new diagnosis can be scary and alarming, so please know that there are many caring groups out there (including this one 😍). If you want to share more info about your specific diagnosis, it will help if you lock your post (restrict it to this community), otherwise your info (and ours) can be seen by anyone searching Google. To do this: go to the bottom of your post, click "More" then "edit" and then, under "Who can see my post?" click "Only community members"
Treatments/therapeutic options vary from country to country, so it helps if you let people know which country you're in. I found a few other Non Hodgkin's Lymphoma forums. This one is in the UK: cancerresearchuk.org/about-...
Wishing you the very best
This is what I was given as explanation. So you can see my confusion
Welcome, You've found the right support group. 
Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma or CLL/SLL is one disease and is the most common adult Non-Hodgkin's Lymphoma (NHL). There are around 80 different NHLs, so it really helps to have the most common type of NHL, which is why so many improved drugs have been approved in the last 5 years with more on the way. Life expectancy with CLL/SLL is approaching normal life expectancy and you'll learn here how to improve your chances of doing just that, E.G. per this pinned post: healthunlocked.com/cllsuppo......
Historically, if CLL/SLL was diagnosed by a pathologist examining an excised lymph node, you would have been given a diagnosis of SLL. If the diagnosis was from a flow cytometry immunophenotype blood test, you would have been diagnosed with SLL. There's a lymphocyte count threshold of 5.00 separating 'SLL' from 'CLL', but that tends to flag how you are monitored for progression. If you have a low lymphocyte count, it's more important to monitor internal nodes. Treatment is the same. (I was given the same confusing CLL/SLL diagnosis over 13 years ago but without the reassuring information that my diagnosis was "indolent"/"non-aggressive". In fact I was informed that I was stage 4, yet I lasted 11 years until my first treatment and my blood counts are now better than they were a few years before my diagnosis, when I was about your age.)
From the mention of HIPAA on your report, I assume you live in the USA. That means you can ask for prognostic tests now, unlike most other countries, where these tests are generally only done just before treatment, because they can change. That will give you a better idea on your likely time in watch and wait, your risk for Richter's Syndrome* and how well you'll respond to current treatments. These are likely to have improved by the time you need treatment. About a third of us never need treatment, but given the median age for a CLL/SLL diagnosis is about 70, you are less likely to fall in that group, though we do have members who have avoided treatment for decades. Remember, you have an indolent/non-aggressive condition.
The risk of developing Richter's Syndrome is around 2 to 5%, with a NOTCH-1 marker putting the risk at the higher end of the range.
Neil
Welcome!
I am not sure if your "name" is your real name or indeed an avatar name. Best not using real names.
healthunlocked.com/cllsuppo....
This link advises and if you "lock" your post to the community you will attract more response.
Your post sounds understandably pessimistic. However such is the world of CLL that long and fruitful lives are being enjoyed by many. Sure, it complicates life for us all. I never would have believed I would stop thinking of CLL 1st thing each morning, but that's that's where I've reached 7 years on from my diagnosis.
Much to learn, lots to orientate around. Need to adopt self advocacy and find good CLL doctors.
Keep in touch. We like questions - much knowledge, wisdom and encouragement reside in the Forum.
Jig
Pls consider filling out your profile with your CLL history.
Welcome to the group. Stage 4 CLL/SLL (aggressive) and still around after 5 years so definitely not a death sentence. Here in the US we have access to all kinds of fancy test to tell us what we are dealing with. We have tons of excellent options for treatments these days just in case we need them. Some of us may never even need treatment. This is a totally different type of cancer than say lung cancer. It's chronic so we can live with our type for many years. This is a wonderful support group. I'm sure you will learn many things here that will help you in the future.
I am getting tons of information... and it's all a roller coaster right now.. ty for replying and I'll be getting more involved when I absorb all this
Your welcome. 😁 Most definitely a rollercoaster when first diagnosed. You'll figure everything out with time.
Welcome to our group. I have found this forum to be particularly helpful.
Right now you likely have many questions and all of them are reasonable. Please avoid looking for prognosis information on Google. Those always look backwards to find a five year survival rate and treatments have evolved tremendously over the past five years. It is highly probably that you will die with CLL/SLL not because of it.
If you don’t currently have an oncologist who specializes in CLL, now is a great time to find one.
My CLL specialist told me not to worry unless he is worried. That helped me a lot. I let him do the worrying for me.
Hi welcome to the family. I was diagnosed in 2015 and am still doing well. It can indeed be traumatic and worrying upon diagnosis, my take on it is to "Keep calm and carry on" not good to dwell on one's condition. This forum will give you Love, support and will answer your questions. I see some of the more learned on here have responded so you are in good company. Best wishes.
Diagnosedat50, you are in the best circle of friends ever. I'm 73, in W&W 4 years. I feel great and look forward to each day - it doesn't feel good to worry each day. I am cautious(mask, distance)around crowds and anyone who has a cold or whatever is going around now. Good advice from Jammin_Me to go to the CLL Society website. Besides this forum's wealth of knowledge from experience, you will learn more at that website. 🙂 Sandra
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