Question about Sll/CLL: I am trying to... - CLL Support Assoc...

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Question about Sll/CLL

Ironj
Ironj
21 Replies

I am trying to figure out what the life expectancy is with Sll and CLL I’m 46 and was told I have sll a few weeks ago I have no symptoms. I have seen on the internet 2 things. Question 1. I have seen on the internet if you have a segment in chromosome 13 missing your prognosis is very good with a medium life expectancy of 25 years, do all people with a slow growing cancer watch and wait have this segment in chromosome 13? Question #2. I also see on the internet that Mutated Sll /CLL that is mutated also has a medium life expectancy of 25 years, is mutated the same as slow growing type of sll /cll ? It also said non mutated has a far less survivalist 90 months medium survival rate. My Dr has told me that I may never have symptoms or it could be decades if I ever had any symptoms. Again I know better then to look to google for answers, but I see all different statistics som say 5 years some say 10 years some say this 25 years or it may never course any issues. Also I have another question a fiend of mine was diagnosed with nodal marginal zone lymphoma, is the prognosis the same as sll / Cll. Her dr told her that that type of cancer is very treatable and would not die from it. I have read up on he type and it says it a slow growing cancer like SLL / CLL. If you have cancer what has a better long term outlook ? Sorry for the long and maybe confusing post any help would be appreciated. Thank you in advanced

21 Replies
oldestnewest
KL2018

I am pretty newly diagnosed and haven’t asked a lot about my numbers. I know I don’t have the most aggressive kind. I can’t offer you data, but I can give you my perspective. From what I can tell, the numbers are guidelines and that people with CLL don’t follow the rules. It is very unpredictable. I also have been told by a top expert that the treatments are changing so fast that it is impossible to give someone an answer other than “you have every reason to be optimistic for a normal lifespan”. This uncertainty is one of the toughest things to take. I have chosen to get some end of life things in place (organizing my kids memorabilia/baby pics etc) and then to focus on new goals and LIVING. I too am younger than the average patient. Embracing the healthiest lifestyle you can may ironically allow us to outlive some of our non-CLL humans.

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Spacee

Ironj, I do not have the answer to your specific chromosome question that I can give officially. I do think I have read the 13 is the good one. My husband has that. He also has the bad ones. And no symptoms. That said, you might well live your life without treatment. But if you do need treatment, they have improved so much since 2015 and just keep improving, that either way, I think you should expect to be around a very long time. (I think I read that it is the pediatric lymphoma that has caused a lot of the research into meds and that has in turn helped adult lymphoma)

We all hope to be here posting for 20-30years! :)

Linda

9 likes
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Ironj
Ironj
in reply to Spacee

Thank you Linda for you reply. I asked My Dr the same questions I’ve posted today. He told me that I didn’t have enough cells to test for that. So he couldn’t give me an answer. From what I got out of the conversation is that my diagnosis is to early to detect if it was mutated or if a section of chromosome 13 was affected. Thanks again John

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mariemascio

Hi Ironj -

I think it's understandable to be asking, essentially, "how long have I got to live?" but the true answer is that it's not answerable. Some diseases progress pretty uniformly in every patient - not ours. Some SLL/CLL progresses quickly, some is extremely indolent.

There are tests to better define the risk of the disease getting aggressive, but these don't tell you anything about YOU and how you're going to do. For that reason some people don't get these tests (I haven't) until they need treatment and need the results to direct therapy options. For now the test would just tell you if you're more likely to have aggressive disease . . . but many people with "bad" markers do just fine and other people with "good" markers get sick early. The tests are not very good at predicting lifespan. And say you need treatment in 5 years (unlikely, but who knows) the therapies available then will be substantially different than what we have now, and your lifespan will be determined by <those> drugs not today's treatments.

Your post brought to mind a video from Dr. Fegan at the 2016 CLL conference that I found useful when I was diagnosed last year (in fact, I just love all his stuff) on the impacts of a CLL/SLL diagnosis.

youtube.com/watch?time_cont...

Sending good thoughts your way today. Take care - Marie

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Ironj
Ironj
in reply to mariemascio

Marie

Thank you for taking the time to respond on my post. I understand your response and the unpredictably. What I can’t understand is my Dr telling me that my FNB showed very few sll cells and my Flow centimeter test only showed a white blood cell count of 64 and he said to clinically diagnosed someone with SLL the white blood cell had to be 5000 to meet the threshold. He said we are splitting hairs even saying you have SLL. I know I’m talking about off topic testing but that’s what prompted me to call the Dr today about the 2 question then to have him tell me I didn’t have enough cell to test for my questions. My head is spinning 🤪.

2 likes
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mariemascio
mariemascio
in reply to Ironj

Hi John -

Congrats on the low cell counts . . . that's interesting that you have too few cancer cells to even do the more advanced tests.

It sounds like you have such a low burden of disease that it's marginal to even call it cancer (there's a condition called MBL: "Monoclonal B-cell lymphocytosis resembles CLL, but does not meet the criteria for CLL and does not require treatment. Patients with less than 5,000 (but not 0) CLL-phenotype B-cell lymphocytes per mL and no symptoms of CLL are diagnosed with MBL.)

I'm in the same boat . . . yes I have a couple of swollen lymph nodes so I have "symptoms" and can't call it MBL so they called it SLL, but it's such a minor presentation that it may mean nothing at all in the long run, as people generally live the rest of their lives with MBL and no progression. There was a paper (can't find it now) that suggested that very early SLL (with small lymph nodes) could be considered like MBL: there's not good certainty that it will progress to anything dangerous.

What my doctor did for me was test my blood every three months for a while to get baseline chemistry. Since all my numbers look good and also stable (white blood cells, red blood cells, platelets, etc.) it means my bone marrow (where these things are made) is working fine and there's no reason to do anything. She's backed off my blood tests to every 6 months for a while, if they're still stable I think they'll go annual. I'd ask your doctor what kind of ongoing evaluation they have planed for you.

Take care - Marie

Edit: ahh, here's that paper ncbi.nlm.nih.gov/pmc/articl...

Only a small group of early SLL patients (36) and short follow-up time, they found that two years after dx 24 hadn't needed treatment and 3 had no signs of swollen lymph nodes (!) "An absence of lymph nodes of at least 1.5 cm and an absence of proliferation centers correlated with freedom from progression or treatment. Cases with these features may be more appropriately diagnosed as 'involvement by CLL/SLL-like cells of uncertain significance' rather than SLL."

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Ironj
Ironj
in reply to mariemascio

Interesting I haven’t heard of that but I will ask about that thank you. He plans on checking every 3 months for awhile then move to 6 months. I posted all my info on my flow test in a reply if you know what those #s are it would maybe give more information on my condition. Thank you for replying.

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YelvertonDevon

Thank you for posting. Very uplifting. What a wonderful, positive talk. Will now look for more of his talks.

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Pat1954

Hi, I know this is a scary time for you. But the question you are asking is like asking how long is a piece of string? Nobody really knows the answer. Firstly you need time to come to terms with your diagnosis. Then you need to become positive about it, and believe that you will not let it rule your life. You are young and hopefully apart from this well,so enjoy the life you have. Remember you are not alone thanks to this site,and you will have great support from it. Also remember you will have good days and bad days. Deal with this by taking one day at a time if you need to. Remember to stay positive and stay well.

Regards

Pat

7 likes
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Ironj
Ironj
in reply to Pat1954

Thank you for your reply Pat , it is a scary time for sure I feel like I’m on death roll waiting for the warden to say let’s go, your correct in saying I need to move forward and live without letting this , as I understand may never cause a problem or may be decades away before I’ll need any treatment. By then if not very soon they will have a cure. My Dr put me on an antidepressant and it seems to have taken the edge off. Thanks again

2 likes
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Eliz19
Eliz19
in reply to Ironj

Hello Ironj,

I was just diagnosed last month. I’m in a similar situation meaning absolutely no symptoms. There was a small scar tissue on my collarbone that I wanted removed for cosmetic reasons and they just happened to remove the lymph node under it; sent to pathology and here I am. I might have never known. My point is this ... everyone is going to face the same fate someday. Before this diagnosis, I never worried everyday if I was going to get in an auto accident, get hit by a bus, or get struck by lightening. Live your life and enjoy. Try not to let the toxic thoughts consume your happiness. We will all die with this disease but most likely NOT because of it. Take Care.

4 likes
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Ironj
Ironj
in reply to Eliz19

Thank you Eliz19

I agree with you and I understand this type of cancer is chronic and manageable if treatment is ever needed. Before I was diagnosed I had very bad health anxiety for about 30 years. I thought I was dying of something everyday . My biggest fear was alway getting cancer , I think that’s my biggest issue is just coping with the news. I have gotten a lot better over the months and in time I hope I can just see it for what it is a chronic condition not a death sentence. Your correct regarding not letting this take away my happiness. Truth is I haven’t been happy for the last 30 years with the anxiety issues. Don’t get me wrong I have some good days. I’ve been seeing a Dr for this and take anti anxiety medication and now antidepressant. I will get passed this worrying hopefully sooner then later. I’ve received a ton of support from the great people on this site and that’s helped me more then any medication or Dr. thank you John

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AussieNeil
AussieNeilAdministrator

You have had some excellent responses to your post, to which I'll add the following answers to your specific questions.

1) Does everyone that has a long life expectancy have the best prognostic factor del13q?

It's hard to say because

(a) these prognostic factors are only statistically indicative for groups of people. Some of us with poor FISH test results end up going a long time to treatment and others with good results need treatment far sooner than expected. CLL is a very heterogeneous illness.

(b) not everyone knows their FISH test results (they weren't always done)

2) Is mutated IGVH the same as the same as the slow growing type of SLL/CLL?

Most with the mutated IGVH gene in their CLL do have a long time to first treatment and long remissions (about 30% of FCR patients passing 7 years have indefinite remissions). Likewise most with the IVGH gene unmutated have a shorter time to treatment and shorter remissions, but see 1 a).

The challenge of determining how long we have to live with CLL/SLL is particularly difficult at the moment, because it will probably be another 7 or more years before we know what impact small molecule treatments are having on life expectancy. Looking at past statistics to work this out is a bit like trying to predict where a boat is heading by looking at its wake from several days ago. So much has changed recently. That also goes for determining whether life expectancy for nodal marginal zone lymphoma is better or worse than that for CLL/SLL. There are so many factors involved, with the primary one being the recent increase in treatment options for both illnesses.

This post looks at the challenges involved in predicting life expectancy at end of life:

healthunlocked.com/cllsuppo...

You can appreciate much more difficult it is to try and work this out if we have 10, 20, 30 or more years ahead of us.

Neil

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Ironj
Ironj
in reply to AussieNeil

Neal your reply was great and you gave me a lot of information. Thank you for take the time to put things in perspective. Thanks John

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Jomary8505

Hi Ironj,

I too have SLL and was diagnosed at 50. I'm not sure what country you live in so I know testing may be limited. My WBC count was always normal which I think is one of the main differences between CLL and SLL. I had a biopsy of an enlarged lymph node which showed the abnormal cells leading to my diagnosis. I also had a bone marrow biopsy which confirmed it. I don't believe you can diagnosis SLL with bloodwork alone since the involvement is in the lymph system.

I was very frustrated when diagnosed because I couldn't seem to get the information I needed so I too googled everything. I did learn a lot but that was 5 years ago and things have changed significantly in the past few years. It also took me years to realize this is a lifelong condition to be dealt with when symptoms occur. Hearing cancer- I wanted it gone now so I could move on with my life. It takes some time to accept that it's just part of my life now. Someone compared it to diabetes once- a medical condition that has to be managed rather than cured. Although it looks like the researchers are working very hard on reaching the goal of a cure.

Give yourself time and this is a wonderful place for support and information.

JoMary

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BJollie

Ironj, First of all, there’s nothing but hope for folks with CLL/SLL! Anything you read about survival estimates more than 5 yrs old are wrong! With all the new targeted therapy combinations & next-gen CART-Ts, odds are, you’re going to die from something else besides CLL! 4 bits of advice for you: 1) exercise fights cancer, 2) eat clean (within reason), 3) go to a CLL specialist at an academic center at least for a second opinion-they have access to the latest diagnostics, data & clinical trials and 4) visit Dr. Sharman’s blog cll-nhl.com and read till your hearts content (YouTube is great for learning about things you still have questions on & hear interviews from the best in the world).

Diagnosed with SLL at 39 (now 46). 11q, 13q & Unmutated Ironman 70.3 October 2017

You got this!!

Jollie (North carolina)

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Ironj
Ironj
in reply to BJollie

Thank you for your information I’m going to look at the link now. I’m happy to see your doing very well thank you for the encouragement.

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MsLockYourPosts

cllsociety.org has a good list of CLL specific links, as well as a lot of up to date information.

1 like
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Stelladoro

My oncologist told me that something else will get me before SLL does!!!

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Ironj
Ironj
in reply to Stelladoro

That’s what my Dr told me as well.

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J_88
J_88
in reply to Ironj

Me as well.

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