New to this!

[Lucy0908]

I'm new in this forum. Was diagnosed with CLL 3.5 years ago, aged 48, on a routine blood test. What a shock! Currently on watch and wait every 6 months. My lymphocytes were stable for the first two years but between January 2015 to Jan 2016 they went from 9 to 25! Nearly a trebling! Have another check up next week and getting that stomach churning feeling. My consultant seems totally unphased re the rate of lymphocyte proliferation as I don't have any B symptoms as yet and in other respects feel ok apart from fatigue. Have any of you had such an increase and been told it's not a worry? As so much of the treatment indication info out there has doubling time within a year as a warning sign ....

[Cllcanada Top Poster CURE Hero]

Welcome Lucy

There is a starting line in CLL progression, at 30K... under that absolute lymphocyte count [ALC] bounce around ..that's what they do...

When CLL begins to progress, it crosses the starting line, and then your doctor will monitor the count, looking for a doubling time of under 6 months... so say an increase from 38K to 80K... in 6 months etc.

This is an indication of treatment, but then B symptoms are brought into the mix, fatigue, unexplained weight loss, night sweats node expansion, spleen enlargement, falling platelets and Hgb and so on.. but most important how you feel.

Patients and some doctors unfamiliar with CLL, get itchy for treatment in the low 100K levels , but if you are feeling well, there is no need to treat. I know CLL patients with absolute lymphocyte count [ALC] overs 300K and they live a full busy life...

My guess is you have a long way to go, before treatment becomes an issue...

~chris

[Lucy0908 in reply to Cllcanada]

That so useful and reassuring, thank you! I'm certainly in no rush for treatment! Really happy with the watch and wait approach, just difficult not to worry about figures etc. But I am very reassured!

[Foggymind]

Hi Lucy0908,

Firstly, welcome to the forum, even if it's not what any of us really want to be a part of if given the choice!

Sorry to hear how you are feeling about your next week’s check-up, we’ve all been there and it’s difficult not to get anxious considering what those visits are for. I think your consultant is right in not being too concerned about your blood results. Below is a link to another post from last month on the same subject. Have a look at the excellent response given by @AussieNeil , it explains the criterion for starting treatment and the role of the lymphocyte count and doubling time. I hope this is of some help.

healthunlocked.com/cllsuppo...

Please try not to worry too much (easier said than done I know) and I hope you continue with your watch and wait for a long time to come.

This forum has a wealth of information and a great deal of wisdom, some of which has been included in three documents created by members of this forum that I’m sure will prove useful to you. They contain lots of excellent advice about living and coping with CLL. These guides can be found by clicking on the links below.

Coping Strategies - Part 1 improving our CLL journey

healthunlocked.com/cllsuppo...

Coping Strategies - Part 2 Living with CLL

healthunlocked.com/cllsuppo...

Coping Strategies - Part 3 Keeping our spirits up

healthunlocked.com/cllsuppo...

Take care.

Kevin - Essex, UK

[Lucy0908 in reply to Foggymind]

Thanks Kevin. That's really interesting info and I will definitely take a look. I feel much braver now!

[Loves2walk]

Hi Lucy,

I can't add to the encouraging words above.

I hope your next appointment goes well. My husband has his 6 month check at the end of March, we are well aware of that stomach churning feeling!

All the best!

[Lucy0908 in reply to Loves2walk]

Thanks! Good luck to your husband

[Peggy4]

Ah the 'stomach churn', sounds like a dance doesn't it? How familiar we all are with that feeling.

I can understand how worried you must feel but glad to hear no other B symptoms are showing.Your consultant sounds pretty cool with it all so that's good.

I've no more advice than that already given. Maybe if treatment is discussed, get a second opinion just to be sure.

Please let us know how it goes.

Peggy

[Lucy0908 in reply to Peggy4]

Thanks Peggy. Will do.

[AussieNeil Partner Administrator]

Hi Lucy,

Chris has given you excellent advice. While we tend to focus on our lymphocyte count when newly diagnosed, it's the least of our concerns (because CLL cells are small and quiescent in our blood) and as Chris says, even a doubling time of under 6 months (and only when they have crossed the 30 threshold) is only an indication for your specialist to look for other reasons that may show treatment is required. In a personal example of how lymphocyte counts can jump around when they are low, last year my counts jumped from 12 to 20 in one month, then dropped back to 8 the next month. I'm much more concerned about my platelets and haemoglobin dropping, as those bring the risk of bleeding and breathlessness. In the official guidelines, there are triggers for starting treatment if platelet or haemoglobin counts drop too low, but there's no lymphocyte count threshold for starting treatment: healthunlocked.com/cllsuppo...

Neil

[Lucy0908 in reply to AussieNeil]

Thanks Neil. What an amazing forum, why didn't I sign up from the begining! A mineful of support and encouragement, thank you

[ap64]

You have been given the drill from the big guns on this site who know about the details. I will just say welcome aboard this CLL train and glad you chose to join our journey. I am sure you will find the group helpful and knowledgeable and sometimes fun and funny. Also a watch and wait person.

[Lucy0908]

Thanks very much

[Elizabetha]

Hi Lucy, it's a scary path we are on but there are plenty of fellow travellers to help us on our CLL journey.

Scary when you see the numbers rising but try not to worry too much. I was diagnosed in Feb 2013 with alc of 29 and have been on W&W since then. I had a jump in first year to 68 and have been sitting at 93ish for over a year.

I was fortunate to be in a position where I was offered early retirement on grounds of ill health in August last year and have been able to reduce my stress levels which I think has helped to slow down my alc count. This is despite a traumatic pregnancy and emergency c-section (daughter) and emergency quadruple bypass (husband) last August.

I hope that your levels stay low and that you find plenty of support from the wonderful members of this community. Keep well and positive. J x

[thegapwoman]

i was diagnosed in September of 2015 with wbc at 13 and alc at 9. Today my wbc is 41, and alc at 32. No one seems too concerned as my other bloodwork is all good, i am not anemic, and my platelets are in the normal range. No symptoms other than fatigue---altho i have had strep three times this year and a mild case of shingles. I have been told "not to worry". But I do.

[Lucy0908 in reply to thegapwoman]

I know just how you feel! The increase in infections is very annoying, I seem to has had several colds this winter and still blocked up, ringing in my ears and feeling dizzy! But so far, like you, my other blood parameters are normal (though will have them done next week again) I'm not anaemic though am on iron as my ferritin levels were low when I was diagnosed. So on we plod! Thanks for sharing your story

[thegapwoman in reply to Lucy0908]

my ferratin levels are very low as well--30. i am losing my hair. But not anemic.

[Lucy0908 in reply to thegapwoman]

The things we have to deal with!

[Lucy0908]

Thanks Elizabetha. I've already had a great deal of support! Am sorry to hear you've had such a rough time and fingers crossed things remain stable for you. You are so right about reducing stress levels- I have recently given up my part time job at gp surgery where I got to see how other CLL patients were doing and they weee usually more stable than me! - and am about to get a new puppy which will keep me busy and active! I am lucky to have a hugely supportive family and good friends so all is good thanks again for your helpful encouragement

[Nanno77]

Lucy...a new puppy is such fun, even with all the work! I can't imagine life without my dogs. ENJOY!

Nancy. USA

[Lucy0908 in reply to Nanno77]

Thanks Nancy! He's adorable and we'll have him home on Saturday

[Hoffy]

I am told doubling is more of an issue above 30. My doctor said he had one patient that got up to 50 white blood cell count and then it's been flat for years since then. In my experience it's good to wait on treatment until you feel like you really need it.

If you do treatment avoid chemotherapy in my opinion. Or at least study the options and the side effects very closely before agreeing to it. My original hematologist was pushing me much quicker than he should have. I eventually went to a different doctor and am now on a targeted combo study with imbruvica and Venetoclax.

For CLL chemotherapy is good for a certain subgroup but you don't know if you're in that group till many years after starting treatment. Meaning if you do chemotherapy and you do not relapse with in six years there's a good chance you may go a long time and maybe forever without relapse

Secondary cancers are in issue with chemotherapy as well.

[Cllcanada Top Poster CURE Hero in reply to Hoffy]

Avoiding chemoimmunotherapy often is not an option outside the U.S... this is simply a fact... we often don't have nonchemo first line options and clinical trials are very few.

Advising against chemo immunotherapy ...as a blanket statement... is a huge stress patients facing treatment don't need in my view...

The FCR subgroup is fairly well defined to 13q mutated and possibly T12, some 11q can do OK on it as well based on the CLL8 trial.

Certainly study all your options then get a second opinion from a CLL expert hemetologist...

~chris

[Hoffy]

True, I did not realize targeted therapies were not available still in Canada. What do you think about the graph showing TN people on Ibruvica vs. FCR ? From the Ohio state talk