Rambling intro from French Alps

[Keepskiing]

Hi, I find myself here I'm sure like everyone else rather incredulously. I'm a 50 year old male from UK but living in the French Alps, . I was diagnosed 3.5 years ago after my GP treated me for a bout of pneumonia and just sent me for some extra tests. I've never really been ill in my life, always recovered from flu and colds fine and only experienced hospitals and doctors as a result of sporting activities. I've rarely met people with pneumonia but at the same time there were about 5 people in the same village / town with it, all fit healthy people, maybe a particularly horrible strain bit town.

Anyway I'm on watch and wait, just about to go for a body scan. Blood tests yesterday were actually back to same level of 2 years ago after rising slowly but continually and peaking last January. I recently decided to trim down, and cut out the big carbs, potatoes, wheat (bread, pasta), rice. I've never really eaten junk food, just a bit too much of everything else. Definitely feel better

My consultant is allegedly very good but is unable to communicate or it seems empathize, it's not just me, I know both French and poor / non French speakers who have the same problem, he doesn't give away much information. Which it seems to me in watch and wait is massively frustrating, I feel like I'm being treated like a child a bit, with the attitude "I'll tell you when to worry, in the meantime get a grip"

I've asked a couple of times about being tired and is there any link? but he's dismissed me with a wave of the hand.

My blood numbers are I'm sure very low compared to some people but I'd just like to know at what point they become a cause for concern. As I've read in a few posts there is a lot of wild information on the web. And I don't really know when I'm looking at them whether I should be jumping for joy or running to the hills screaming, it's the lack of knowledge that's driving me nuts

My leucocytes (white cells) are at 31.3 giga / l the range on the paper is (4 - 11) last time they were 40 giga / l, they were about 18 when I had pneumonia

Lymphocytes 92% 29,015 / mm3 (range is 1000 - 4800) last time 37,208.

Plaquettes (think platelets) 159,000 mm3 ( range 150,000 - 400,000) last time 170,000.

What happens when they get sub 150, is that heading towards aneamia?

Polynucleaires neutrophiles 6.8% 2,128 /mm3

Polynucleaires eosinophiles 0.5% 156 / mm3 ( 20 - 630) last time 323

Polynucleaires basophiles 0% (< 110) last time 323

What level of these numbers do people get sent for treatment at?

I've got a lot of enlarged ganglions, or lymph nodes but the specialist said they were not a problem. When do lymph nodes become a problem is it the "feel" of them, ie soft and pulpy not hard and uniform? My liver is fine.

Basically I'm sure the consultant is absolutely right, but his style of communicating and confidence building is rubbish. It leaves me suspecting worse due to ignorance.

Obviously I'm not looking for someone to just placate me I want to know warts and all so I can deal with it in my head and my way

Anyway that's my intro, bit rambling sorry but that's how I feel at the moment.

Rob

[AussieNeil Partner Administrator]

Hi Rob, and welcome to the community that no one wants to join, but we all try and compensate by supporting each other, helping each other to live well with CLL/SLL and keeping our community informed of the latest research into CLL treatments.

The absolute count of Leukocytes (white cells) are referred to as your WBC on this site. This includes all the different white blood cell types so we tend to ignore that and look at the differential - all the individual counts of the various white cell types. Likewise we ignore the percentage make up as it gets so distorted by our typically high lymphocyte counts (which includes B and T lymphocytes; it's the B lymphocytes that we have in superabundance). The two white cell counts we're most concerned with are our ALC - or Absolute Lymphocyte count (as it indicates our tumour burden in the blood and our ANC - Absolute Neutrophil Count as that tells us how prone to infection we are. Eosinophils and basophiles are generally ignored.

There are two standards in the world (both metric) in which the cell counts are stated for different volumes, with one a thousand times greater than the other.

Your ALC of 29,015 (or alternatively 29.015) needs to be above 5,000 for you to be diagnosed with CLL. Below that you might have SLL or a possible precursor to both of these chronic cancers called MBL - Monoclonal B Lymphocytosis. We have some members still awaiting treatment with counts over 300,000, 10 times higher than your count.

Your Neutrophils/neutrophiles at 2,128 (2.12) are in the healthy range.

Plaquettes/Platelets can drop to 100,000 (100) before treatment begins to be considered and below 70 before treatment is required on this basis. We need platelets to seal off leaks in our circulatory system so that we don't bleed to death from skiing injuries .

Anaemia is caused by a low count of red blood cells and there are two measurements that are used to assess that, your red blood cell count and more importantly your haemoglobin level. (You haven't provided either.) It's the haemoglobin in your red blood cells that transports oxygen to your body cells from your lungs and then removes the resulting carbon dioxide back to your lungs for you to breathe out.

Enlarged lymph nodes might be a problem in the wrong area; that's something your specialist keeps an eye on during his examination.

Have a read through the pinned posts section. There's a wealth of material there that should answer all your questions. If not, don't hesitate to ask. You'll find the pinned posts on the right side of this page: healthunlocked.com/cllsuppo...

Neil

[Keepskiing in reply to AussieNeil]

Brilliant, thank you Neil, really good information, there's definitely a difference between reading, reading reading info alone and actually having someone respond. Makes me feel much better thank you. The scan went well actually, despite machine gun rapid fire French, there aren't any new manifestations anywhere, off to see my consultant this morning to have him summarise it all.

[Newdawn Administrator]

Hi Rob and a warm welcome,

Your biggest problem at the moment seems to be a dismissive Consultant whose lack of communication is causing you to worry excessively due to lack of information.

I can only give the best information I can based on being a fellow CLL'er with very similar levels to yours (my WBC is higher and your platelets are lower). We were diagnosed around the same time and I'm in my 50's. I can tell you I don't intend to be rushing into treatment any time soon unless things change dramatically

As I understand it, numbers are not so important as trends in CLL and yours have been holding steady and even reducing at times. You also sound to be in good general health, are making efforts to keep yourself well and apart from some fatigue and a few enlarged lymph nodes, are doing well.

Medics don't understand fatigue well in CLL and as a result seem to dismiss it but anecdotally, it's clear that it can be an issue regardless of lab levels. Just humour your doctor on this because he clearly doesn't have the evidence he needs to accept the link. And it is poorly studied and understood. He may just be a very skilled doctor with poor communication skills and many of us unfortunately endure that unhelpful combination for consults!

You ask about cut off points for when treatment seems to be indicated. It's not an exact science but doctors look for doubling times (especially in terms of lymphocytes), combinations of increasing WBC combined with reducing RBC and platelets to assess seriously overcrowded and struggling bone marrow levels etc. The expression is often seen as 'active clinical disease' where a patient may be experiencing debilitating fatigue, drenching night sweats, weight loss and frequent infections. Those factors take greater priority than numbers alone. Many members on here have numbers in the hundreds of thousands but are holding steady and not yet in treatment.

Your platelet level at 150 is slightly low but generally, from what I've read, doctors don't seem to become overly concerned until it drops below 100. However reducing platelets need watching along with your red blood cells because it's important to consider the why of low red blood cells and platelets, not just the how low.

I don't think you've mentioned your RBC levels which are a good indicator of haemoglobin levels and possible anaemia (which could explain fatigue).

I see that Neil has already given you excellent advice on this issue and others in his reply.

This is a very old but nonetheless relevant explanation on the issue of platelets from the CLL guru Cheya Venkat which will help to explain;

updates.clltopics.org/667-w...

I'm not sure where you enlarged lymph nodes are situated Rob but they are a common phenomenon in CLL. It appears that the description 'ganglion' is only used in French speaking countries as there is a distinction between ganglions and lymph nodes.

It sounds like your Consultant is unconcerned about their location because they're not impacting adversely on any vital organ or function. Your full body scan will reveal any internal nodes which could cause problems. Naturally an enlarged node impacting on renal, cardiac and breathing functions tends to prematurely push treatment ahead but this isn't so common fortunately and our bodies and numbers have a tendency to alert us when that happens. As a result you should never ignore pain and discomfort anywhere but particularly in the regions of enlarged nodes or in the spleen and liver areas.

Again a slightly dated but relevant blog from Dr. Sharman explains brilliantly his assessment of 'when to treat' and this may help you as you seek the information you need;

cll-nhl.com/2012/12/when-to...

You sound to be in pretty good shape at the moment Rob but are struggling with poor medical communication which can cause undue stress and worry.

In your situation I'd be tempted to pay for a consult from a CLL specialist on the next trip to the UK (if you're able to obviously).

You live in a lovely area and the fresh air and exercise must be doing you good! Best wishes and please feel free to ask questions any time on here.

Newdawn

[Keepskiing in reply to Newdawn]

Thanks Newdawn, will check out the links. Yep it's hard to know whether the fatigue is CLL related, just stress of knowing I have CLL related,or the fact I'm 50, have two kids of 6 and 3.5 and am renovating an old French farmhouse related. Rather stupidly I hadn't actually thought about the physical size of lymph nodes causing problems to other organs, but it seems obvious now you mention it. Do you know exactly what the difference is between "les ganglion" and lymph node?.

Again thank you, it's really appreciated, just lifts the cloud a bit being able to converse easily with understanding voices.

Rob

[Newdawn Administrator in reply to Keepskiing]

Rob, in answer to your question as to the difference between a ganglion and a lymph node. This link (which I hope is permitted) will explain;

health2009.com/medicine/216...

Newdawn

[Keepskiing in reply to Newdawn]

Hey that's a good link thanks Newdawn, obviously I'm still not sure exactly which description it is in my case but knowing the variables is great. Much appreciated.

Currently sitting in the waiting room to see Monsieur Mystere, he just walked past, saw me and negated to say hi ie even acknowledge me. Ah well at least I know it's the same for everyone, another patient waiting, saw it, smiled and raised their eyes to the ceiling in that knowing way. Strength in numbers

[Newdawn Administrator in reply to Keepskiing]

Good luck keepskiing!

Your Consultant was obviously off on the day of the 'Effective Communication' lecture!

Newdawn

[HAIRBEAR_UK Founder Admin]

Welcome Rob

Great User name and location, hot there now I imagine . Good luck with your Scan today, Great to read that your blood levels are stable and seem to be back to levels of two years ago. You have had some great feedback from Neil and Newdawn.

Poor Doctor patient communication is an issue many can relate to here I am sure many will be able to share how they have tackled this problem.

Are you aware of the French equivalent of the CLLSA? There is a very well developed and experienced CLL group in France who are well supported by the French CLL clinical community, they will be well placed to advise of how to get the best from the French system and connect you with people in France..

SILLC

L’Association de Soutien et d’Information à la Leucémie Lymphoïde Chronique et la maladie de Waldenström (SILLC) est destine

The Association for the Support and Information for Chronic Lymphocytic Leukemia and Waldenstrom's disease (SILLC) sillc-asso.org

If you are not a French speaker the translate feature on the top right of the page seems to work well.

Many here will be able to agree and share similar experiences of an often paternalistic approach by doctors, who don’t seem to understand the nuances of CLl life and the impact of watch and wait on a patient. Your words will resonate with many here in the group “Watch and wait is massively frustrating, I feel like I'm being treated like a child a bit, with the attitude "I'll tell you when to worry, in the meantime get a grip"

You have found a good group here who will be able to help you with your learning. Fatigue is often a symptom of living with CLL, your RBC heamaglobin levels may be an indicator, but even if your RBC levels are not low fatigue does seem to impact heavily on many of us. If you use the search box and key in fatigue you will see how many share this.

You mention you want to learn about CLL warts and all so that you can better deal with living with CLL, The group here is a good place to start and there is a wealth of information that is reliable now available to help you. cllsupport.org.uk our website gives you some good information with current education webcasts from CLl specilists and links to current information.

Best wishes

nick

[Keepskiing in reply to HAIRBEAR_UK]

Thanks Nick, will check out the French site, my French is not bad for most things but this is a whole new world of terminology, however I agree the translate tools are pretty good.

Thanks for the links, will start to have a look.

Regards

Rob

[HAIRBEAR_UK Founder Admin in reply to Keepskiing]

Yes terminology difference between languages is a sticky one. I think the french for lymph node is ganglion lymphatique I see in this interview video published yesterday by Patient Power EU from SILLC president, CLL patient & doctor Cristian Puppinck that ganglion is used this way. patientpower.eu/videos/chri...

Really interesting you are busy renovating a large farmhouse,. Learning the french system, terminology and method of work is something I can relate to in this area too as i was diagnosed not long after renovating a longere farmhouse in Northern France and I often think back to that experience, how i almost had to throw away the building rule book I had learnt over many years of UK site work to take on board the french way. if you can renovate a french farmhouse you will certainly master CLL in France

I was reading the SILLC mission statement (using the translator and my pigeon French) they are big on the patient having the right to know and become involved in their healthcare.

Hope you are back on the tools again soon

Best wishes

Nick

[Keepskiing in reply to HAIRBEAR_UK]

Aha a fellow madman, do you still have the French house? How long did it take? Actually the renovation has effectively turned into a rebuild, when trying to make the changes we wanted and get some light in, the existing walls just fell apart. Given we are in a seismic zone there is now a lot of reinforced concrete in the structure, mind you the old house, without any of that stood for 220 years, so maybe regs were fashioned by someone who owned the local builders merchant and cement company.

Big surprise for me was the total lack of a building control officer, good and bad I guess.

I find, The thing with mission statements sometimes is that they are just that, a statement, dreamed up by some consultancy as a way of marketing and directing a campaign to engineer the result they want. Or maybe I've worked in too many consultancies and have become a bit cynical.

I think I should change my username to "keeponbuilding" not skiing as that's about all I'm doing at the moment. Chin up though.

Cheers

[HAIRBEAR_UK Founder Admin in reply to Keepskiing]

Yes keeponbuilding sounds right each little job becomes a great job as you open out existing work.

It took a lot longer than origionally anticipated to convert the Longere built on cob walls made of cow muck, mud, straw and clay faced with stone (no concrete for us to mine, thankfully, but much instability to navigate and shore up/reinforce). A messy job, the conversion became a virtual internal rebuild too.

learning how to navigate the french electrics, and building systems from plumbing through walling systems , roofing and waste services was all very different agree this is all very product orientated and varies on local availability of materials and methods I think.

Thankfully CLL is managed and treated the same way in France as it is in the UK

It took a while to adjust to following french working hours to ensure we were in sink with suppliers and the artisan community, we started having lunch with french artisans and taking french lessons in the local village, getting to know the Marie was the most important part of control in our area.

Pretty soon we had local support and local knowledge to help with things. unfortunately the house wasn't ours we were helping friends. The harder we tried to understand and learn with the french community the more support we got.

I see that Herve' from SILLC has been in touch below, i know Herve' and SILLC they have a very similar set up to CLLSA here in the UK, their mission is true in practice and they are a great support, I do recommend that you connect. To aid you get the best from the French system.

Best wishes "keep on building" with an eye on hygiene and control of opportunistic invasive microbes

Good luck

[jangreen]

Hi I sympathize with your situation of not knowing when treatment will start. If it's any consolation my specialist told me its an art form not a science. Best wishes

[Keepskiing in reply to jangreen]

Hi Jan, yes that sounds about right.

Cheers

Rob

[MsLockYourPosts Passed Volunteer]

Rob - Just about anyone who started their CLL education by googling will tell you it's a mistake, as it seems you have also discovered. A good new resource is cllsociety.org - lots of good information and links to reliable resources.

You will also find a lot of good support and information here.

[Keepskiing in reply to MsLockYourPosts]

Hi.

I know I did a bunch of googling research a while ago and got a bit overwhelmed by trying to work out which bits were appropriate... Then got a bit disheartened, felt like I didn't want to know (ridiculous I know) but I'm back on the hunt again now.... However it might sound daft but I don't want it to take over my every waking thought every day, gotta try and get the genie back in the bottle a bit and get back to building and family.

Cheers

Rob

[hervec]

Bonjour Keepskiing

I am from french association SiLLC. You can contact me via private message on the SiLLC forum site if you need more information on french health system. Or you can participate directly on the forum.

But the best information on the CLL is in english

In France standard CLL is followed and treated same way as in UK. The wait and watch in a good situation the best is wait endlessly.

Bonne journée

Herve