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[Elle_V]

Hi, I was diagnosed with SLL in Feb 2016. I am at stage 0/1 and fairly stable. I am 50 and have very young children (had them in my 40s). I've asked my hematologist how long can I go without treatment/ how long do I have and she says everyone is different which I understand but I worry for my young children. My hematologist told me that 30% of her patients at my stage go to 10 years without treatment. Can anyone tell me more about this? Also, once someone starts treatment, what happens, how much longer can they go on? Sorry, don't mean to be morbid.

[AussieNeil Partner Administrator]

Welcome to our community Elle,

Your haematologist's figure of 30% of stage 0/1 patients going to 10 years without treatment closely matches the statistics of 30% of CLL patients not needing treatment, though given you were diagnosed at younger than the median age of diagnosis of around 71, it is probable that you may eventually need treatment. With the SLL form of CLL/SLL, it is more usual to be diagnosed at a later stage than with the CLL form, because SLL isn't easy to detect in a blood test, so given you have been diagnosed so early in the disease and you are fairly stable, I'd say that you have a very good chance of falling into that 30% category. (I was diagnosed with SLL stage IV nearly 9 years ago and am still in watch and wait.)

More importantly, given the current rapid development of new treatment regimes, if you do eventually need treatment, that treatment is considerably more likely to give you a longer remission or even a cure compared to what can be currently achieved.

You can get some indications of whether/when you may need treatment, from looking at your flow cytometry markers (the test used to confirm your diagnosis, which is usually on a blood sample, but with SLL can be from a node biopsy). Depending where you live, you may be able to have FISH testing, IGHV mutation status or even more advanced testing from research centres that can be used to significantly improve on the estimation of how long it may be before treatment is required, but these are statistical estimates only valid for groups. You'll get a better feel for your path as you live longer with SLL.

I've posted about the difficulties of working out how long in this pinned post:

healthunlocked.com/cllsuppo...

Neil

[Elle_V in reply to AussieNeil]

Hi Neil, thanks so much for your informative reply and for sharing your story, I feel much better and you have given me hope and a type of peace that I didn't have before.

[Tigger53]

Hi, welcome, I was diagnosed with S.L L in 2011" was on watch and wait for 14 moths, then needed chemo, for 6 moths after which I was fine, and the cancer stayed in remission for 4 years during which time I felt really well. It reawoke, in Feb this year and my consultant put me onto ibrutinib which is much kinder to the soul than chemo, after a few initial side effects I am now feeling fine . Obviously this varies from person to person, but there is light at the the end of the tunnel and it's a very liveable with cancer once you get your head round it all. I found it easier to tell everyone, and friends and family have always been very supportive. but that again is an individual choice. Good luck with your journey

[Elle_V in reply to Tigger53]

Hi Tigger53, thanks for sharing with me. I've read about the ibrutinib and it helps to hear from someone who has actually been on it. It took me about a year to be able to talk about it without breaking down and crying, it's only been the last 6 or so months that it's gotten easier for me. I think it's like you said, it took a long while for my head to get around it, but I'm slowly getting used to it. I'm soo happy I somehow fell upon this website last night and have received so much great and encouraging information from people.

[Quarry]

Elle - I am around 5 years ahead of you in almost everything (Age diagnosis, kids' ages and my age). My CLL is still low level (always has been) and, despite a scare with AIHA (triggered by the CLL and looking back was the thing that led to diagnosis), life is good! I am enjoying seeing the kids grow......this year probably is the last I will be able to help with school-work/revision: my daughter has GCSEs...(my son lost me 2 years ago with totally new-fangled Physics....it was much easier in my day (which he would say was somewhere in the Dark Ages!)).

You have already 'clocked' 18+ months since diagnosis and look stable. This is really good news and it could continue for many, many years. I do hope you can enjoy your family as much as I have!

[Elle_V in reply to Quarry]

Hi Quarry, thanks for sharing your story and for giving me hope and encouragement. I'm a science teacher, 8 years away from retirement. Hopefully I'll still remember my science when my little ones get to high school! : )

[pkpayne]

Hi Elle, I’m much older than you -70- but I was Dr in early 2016 and have just started treatment. I’m not nearly as informed as many on this forum but the one piece of advice that I can give you is to find a specialist in CLL/SLL. Ask any questions here you may have and someone will be able to answer it. I love this forum.

[Elle_V in reply to pkpayne]

Thank you! I love this forum too!

[baq724]

I was "officially" diagnosed a year ago this October at the age of 46. (no treatment yet) Most likely have had this since 2011. ALC at my last visit in June was 17.5 which was lower than diagnosis. My ALC pre diagnosis in Feb of 2015 was 9.9. So, mine is slow...inching along and/or stable. All other counts are in the normal range. Don't fret too much. You are in the category that I am in. Science seems to be moving faster than our disease.

As far as treatment goes, the standard for mutated patients was FCR chemo. This would provide long remissions and possibly cure for some. Damage to bone marrow from chemo is the major concern. In the age of these new therapies, that standard is changing. Many doctors feel a functional cure is close (within 5-10 years using these new oral therapies). "Functional" meaning it can be controlled like diabetes or hypertension. As with any medication, there are side effects, but they can be managed.

Have hope! You're in a great place here with a lot of knowledgeable people, seasoned veterans and newbies.

[Elle_V in reply to baq724]

Thanks so much for the info, I keep telling myself that everything is in the normal range (very slowly inching up like yours) but I still worry and people replying like you has given me much hope : )

[TheFrog]

Elle_V I was diagnosed with SLL stage 4 when I was nearly 40. My son was 18 months old and I worried that he wouldn't remember me. I needed treatment within 6 months which kept me in remission for 11 years when again needed treatment. That was 10 years ago and I'm now approaching 63 and my son is 24. There are no guarantees and everyone responds differently to treatment but I'm at least one example that shows that you can live a long and full life with this disease.

Jacques

[Elle_V in reply to TheFrog]

Jacques, that's beautiful! You have put a smile on my face. Thank you soo much for sharing your story with me. I want to be there for them as long as I can.

[marcyh]

I've gone 11 years without treatment when, at diagnosis, my oncologist thought I might need it within two years. I'm doing great.

Marcyh

[Elle_V in reply to marcyh]

Hope it keeps going like that for you! : ) Thanks!

[Tretops-UK]

Hi Elle V

Welcome. I'm 55 and was diagnosed 6 months ago with stage 0 CLL. Terrified and reading dark stories on the internet I felt extremely alone. I then found this wonderful forum - a place full of supportive, informed and understanding people. I have learned much from them and reading others' experiences I better understand what I am dealing with. CLL has now taken a place at the back of my mind, not the front. I try to live life as I did before but do get a bit jittery when the next bloods are due!

Knowledge, I find, is key. Knowing what to ask the specialist, getting a gauge on the blood work and in a way, taking back control of the disease rather than feeling it's leading you.

My haematologist isn't forthcoming with info, says things are okay now and that was it. Thanks to this forum I have learned what I needed to ask and that has helped to alleviate my anxiety. I had to push for copies of my bloods, asked for vit d check - denied - told to take a supplement instead (i do live in Scotland!) and asked to see a cll specialist to which the reply was - yes, when you have started treatment. I know from this forum (and will insist) that such a meeting happens before anything starts.

Keep well and ask anything you need to; there are so many knowledgeable folk on here who are happy to help. I don't know what I would have done without them.

Xx

[Elle_V in reply to Tretops-UK]

This forum has made me feel so much better. I'm in Canada, and I asked my family doctor for a Vitamin D test, she was kind enough to agree, most doctors here would say no and like yours, just say take a supplement. I am seeing a hematologist who specializes in lymphoma at a cancer hospital, I think that's as specialized as it can get for me here. But yes, like yours again, she just says blood work is fine and not to worry.

The truth is my blood work is fine (very slowly creeping up) but I need to ask something specifically. We can view our results online and during one of my first visits getting my blood tests, the haematologist said everything was fine. I went home and when I went online I noticed my LDH was really high. I was worried sick for 3 months until my next appointment when I asked her about it and she said an infection often raises it, and the truth is, I was just getting over a really bad flu when my LDH was raised. After a year and a half now, I'm not as worried as I used to be. I am so grateful to this forum and people like you who are so supportive and informative. Thank you!