Help with cll/sll knowledge in a young patient.

[Nferrell]

Is there anyone here that is younger for a cll/sll diagnosis? My husband was diagnosed 1.5yrs ago at 42. We are still panicked as we watch he bloodwork numbers go up but are tools he is still in a healthy range.

[Cllcanada Top Poster CURE Hero]

Do you have any more information about your husbands genetic markers etc.? Staging?

[Rileyesq]

Hi there,

I was diagnosed 4.5 years ago aged 40 and am still at the watch and wait stage. My white blood numbers have very slowly increased but the disease has remained fairly stable. I had a FISH test at diagnosis and hit all the positive prognostic markers. I am currently Stage A. If I can help in any way please do not hesitate to contact me.

Rileyesq

[Nferrell in reply to Rileyesq]

What is a FISH test? When you say stable are you referring to your blood work or scans? If you don't mind me asking how was yours found so young?

[Rileyesq in reply to Nferrell]

A FISH test looks at the genetic material of cells and is able to give a more detailed story of someones situation to their doctor. I don't think they are always carried out though as they are not always available and I think there are different schools of thought on its usefullness in the early stages.

My blood work and scans have remained stable, there is fluctuation in both but that is to be expected with the illness.

I originally went to my GP as I was too tired for someone at my age and I hd enlarged (and not sore) lymph nodes in my neck. The diagnosis was pretty fast the hospital, following tests.

My hospital visits were every four months for the first few years and now they are every six months. I found the first six months to a year the hardest to come to terms with the situation but with time you do become more used to living with it. I have my bad days but generally it does get easier.

Rileyesq

[DaleFL in reply to Rileyesq]

Are you IGVH mutated or unmutated? Just curios as I was diagnosed at 42 with CLL.

[Rileyesq in reply to DaleFL]

I am IGVH mutated. The original post was some time ago now. I was diagnosed aged 40 and will be 49 this year and the disease still has remained stable with no treatment to date. I hope this instills some reassurance.

[HAIRBEAR_UK Founder Admin]

Hi

Here are a few blog posts and threads created by many young in the group, you are not alone, give a little more info if you can, others will share their experiences and thoughts here and direct you to supportive sources of information.

A few younger people stories:

cllsupport.healthunlocked.c... story

cllsupport.healthunlocked.c... Cant-believe-Im-writing-this:

I guess I am still considered young to be a CLL person now 50 and was diagnosed at 47, Not sure how young I am in relation to the group though. If you use the search box at top right it will take you to many group threads that provide insight from discussion and links to good information.

Here are a few examples:

cllsupport.healthunlocked.c... Several-UK-sources-of-CLL-patient-information

cllsupport.healthunlocked.c... prognosis-tests--

cllsupport.healthunlocked.c... prognostic-markers-and-the-future-genetic-testing

cllsupport.healthunlocked.c... prognostic-indicators-in-clinical-cllsll-and-impact-ontreatment

Usefull info:

Defining the prognosis of early stage chronic lymphocytic leukaemia patients; CLL topics, Doc-How-Long-Do-I have? at updates.clltopics.org/4336-...

When do white counts trigger treatment? youtube.com/watch?v=Bd-ReP8...(Not working as expected?)

patientpower.info/video/whe...

When to treat Dr Sharman cll-nhl.com/2012/12/when-to...

Nick

[Nferrell in reply to HAIRBEAR_UK]

Thank you.

[splashsplash]

I was diagnosed at 52 having multiple flu like illnesses and cell count of 11000. Two years later when my cells started doubling over a few months, I started treatment and I got a CR - complete remission. The doubling of the cells seemed to be the critical factor in when to start treatment.

[Nferrell in reply to splashsplash]

What treatment did you receive and are you still in remission?

[Cllcanada Top Poster CURE Hero]

I was diagnosed at 51... not treated until 65. Everyone is different, with different clinical courses and cancer drivers...

~chris

[school45 in reply to Cllcanada]

Hi Chris,

My husband has been diagnosed with both cll/sll. Do you also have both and how has your treatment plan been?

Hope all is well.

[AussieNeil Partner Administrator in reply to school45]

CLL/SLL are the same illness. Read healthunlocked.com/cllsuppo...

[Cllcanada Top Poster CURE Hero in reply to school45]

As Neil points out CLL and SLL are the same, early on in the U.S. it is written as CLL/SLL for insurance reasons... basically they are covering all bases until it goes one way or another, but eventually it will be CLL or SLL, depending on its location primarily...

If the white blood cell count [WBC] is rared for 6 months, it is likely CLL , if the blood is normal and the nodes are enlarging then it would be SLL.

There is a very rare biclonal CLL, but its so rare not worth mentioning...

Give it time... it will get sorted out...

~chris

[school45 in reply to Cllcanada]

Hi Chris,

yes read the article. My husband has it inthe lymph nodes and his blood.

[Cllcanada Top Poster CURE Hero in reply to school45]

Then its CLL... raised absolute lymphocyte count [ALC] in the blood... it is also in the nodes, spleen and bone marrow... and just about everywhere except the corneas of the eyes... they have no blood supply...

[Cllcanada Top Poster CURE Hero]

You appear to be in Ohio, you have a world class CLL center at OSU -James CC...might be worth a visit...

[Nferrell in reply to Cllcanada]

Yes he is seen at the James. We feel very fortunate to live in the same city especially where such amazing research is being done, we know he is in good hands.

[Nferrell]

Yes that's where he is seen is at the James. Big things happening for cll just don't like it in our lives. The only thing he has had done at ct scans and bloodwork every 3/6 months.

[splashsplash]

In answer to your question, I did six months of FC chemo but as someone else has said, everyone is completely different with CLL so there's no one size fits all. When our family and friends all want to know what will happen, it's a difficult thing to accept that nobody can tell us categorically with our unique CLL. For example a quarter of all people diagnosed with CLL will not have to have any treatment at all and yet they have to live knowing they have an incurable blood cancer.

[louise66]

It's very scary when you are first diagnosed and being told that all that happens at that stage is 'watch and wait' is difficult to understand.

I was 44 when I was diagnosed in November 2010, I'm now starting FCR next week.

But as the others on here have said that we are all different and not everyone will need treatment and some go years before they need any treatment.

Take care

Louise

[sparkler in reply to louise66]

Good luck for treatment next week Lou. I'll be thinking of you......... sparkler x

[Newdawn Administrator]

Yes I'm adding my best wishes for your treatment Louise, hope all goes well,

Newdawn x

[louise66]

Thank you xxx

[mairin]

Hi I do not get chance to come on very often as busy life with a toddler so sorry for late reply. I was diagnosed at age 36 years and very much a shock. I was having repeated infections that needed antibiotics. The main reason they did further testing is because my mum had died a year earlier with non hogdkins lymphoma.

I am now 45 years old and I have my bloods checked every 3months at my GPs as I found going to the hospital for them too stressful. My white cell count is around 60 and it goes up and down. My platelets and red cell count is all normal and no enlarged lymph. I hope that my story encourages you.

Best Wishes and please get in touch if you want to know more

Mairin

[DaleFL in reply to mairin]

Thank you for sharing. I was diagnosed a year ago at 42 with CLL. I am trying to learn to accept it and live my life. It is hard.

[mairin in reply to DaleFL]

Hi DaleFL. If it helps in anyway i was diagnosed at 36 years old and i turn 50 this year. Ive had no treatment to date and long may it continue. You can get in touch any time as i know exactly how you are feeling. Take care

[DaleFL]

I was diagnosed with CLL at 42.

[Hidden in reply to DaleFL]

I was diagnosed same age..a few month ago

[sandra21l]

Does anyone have any experience of having FCR or something similar again? My husband was diagnosed 7 years ago, and had FCR in 2011. He had nearly 6 years of CR but there are signs CLL is back as SLL. He is now on watch and wait. Treatment options haven't been discussed yet as he is well and it seems localised. But i wondered if anyone had had FCR again and what the remission was like?

[Cllcanada Top Poster CURE Hero in reply to sandra21l]

I have known a few patients treated twice with FCR, and all had a shorter remission the second time...

I don't know what's available to you second line, but Inwould consider something else. Even a minor change like perhaps bendamustine/rituxan [BR] would give a good remission.

We now know that CLL gets more aggressive over time, so using a treatment again will give diminished results... it may not be killing the aggressive B cells... which are now larger in numbers ...

Look into the new drugs like ibrutinib, Zydelig (idelalisib) etc. there are usually clinical trials as well to be considered...

~chris

[mag1309 in reply to sandra21l]

My case is similar to your husband. I have completed FCR a week back and it didn't work as it worked in 2011. Mostly I will get PR. Look for BR option instead of FCR.

[mag1309]

I was diagnosed with SLL at 38. Blood work was mostly normal but neck lymph nodes was visible. No special genetic marker. Got FCR after 3-4 months of W&W due to weight loss and low platelets.