Do I have CLL?

[markus34]

Hi All - I am posting on here hoping for some information on whether or not I may have CLL, or whether my symptoms sound similar to anyone else? I'm 34 years old and live in London, am an avid cyclist, and previously had a clean bill of health.

In Sept 2015, I had a routine blood test to test for Celiac disease. The results came back negative but also highlighted a raised lymphocyte count (around 5) and low platelet count. I also noticed raised lymph nodes in my neck and my armpit. Over the next few months I have been monitored and spent time in and out of my local GP having blood tests to see if the count would reduce. My platelet count has returned to normal but the lymphocyte count continues to hover around 4.5-5.0 (been upto 6.8).

During this time I have felt under the weather and at various times have suffered from indigestion (persistent), dysphgia, abdominal discomfort, continual floating stools, persistent itching of the skin (mild), bone throbbing (mild), ear ache, aching muscles, sore throat, anemia (mild), unexplained bruising on my leg (mild, I did show the GP but they didn't take it seriously).

I was referred to a Haemotologist in Nov/Dec who didnt seem overly concerned, in fact he almost gave the impression that he couldn't understand why I was referred. He did however send my blood for analysis (flow cymetry) and on return told me that I have Monoclonal B Cell Lymphocytosis (MBL) which from what I gather is like CLL but without the sympoms. He told me that they will monitor once a year.

Since the appointment however I have noticed a pain on my left side below my ribs which develops when doing any exercise above a moderate level. I suspect this could be my spleen. I had an ultra sound scan today and the GP said that my spleen was not 'medically' enlarged but he did say it was right on the edge of the upper limit of what it should be, he described it as bulky.

I have not had any drenching night sweats, fever or weight loss. The lump under my arm has disappeared but the neck lumps remain, albeit the haemotologist says these are only very slightly raised. The symptoms that I seem to be left with are; persistent itching of the skin, bone throbbing, slight aching of the muscles and pain around my spleen.

Aplogies if this is a long message. I feel I'm not getting great support from my local GP's and it is a lengthy process to try to get another appointment with a Hemotologist.

I would be grateful if anyone could provide any insight if this sounds like CLL or they have similar symptoms to this? The uncertainty is stressing me out quite a bit and has been going on since September.

Many Thanks

Mark.

[Newdawn Administrator]

Hi Mark but I won't say welcome at the moment because I hope that you are not eligible to become a member of this CLL community.

Your concern is understandable but your symptoms could be attributable to other things. The MBL may sound ominous but as you'll see from the article I'm posting, it's not as unusual as it may seem and isn't always an automatic precursor to CLL (although many people who have CLL will have had MBL).

cllsupport.org.uk/cll-sll/s...

This article from Dr. Sharman will also assist your understanding;

cll-nhl.com/2013/07/monoclo...

Presumably your doctor has conducted tests to eliminate other reasons for infection which would raise your lymphocyte levels and lower your platelets like mononucleosis:

Mononucleosis:

Infectious Mononucleosis: An acute, infectious disease caused by the herpes virus or Epstein-Barr virus, with fever and inflamed swelling of the lymph nodes around the neck, under the arms, and in the groin. The general symptoms are fever,

sore throat, exhaustion, and abnormal white blood cells.

This article may also help your understanding of the diagnostic process.

cllsupport.org.uk/cll-sll/s...

I'm sure you will appreciate that no-one would want to pre-empt a CLL diagnosis or further fuel your fears because the MBL may never progress beyond unexplained lymphocytosis but you do appear to be reporting symptoms that members on here might expect with a much greater level ALC and a definitive diagnosis of CLL. I think there is also the possibility of a psychological tendency towards 'experiencing the symptoms' of the condition we fear. I know I certainly have! However I accept that a 'bulky' spleen is a concern but even that could have other possible explanations. Your ALC at the moment is right at the borderline and fluctuating. There could be so many reasons for that. Is your WBC raised generally?

The flow cytometery tests should have established the tell tale smear cells which wouldn't seem to be present at the moment.

I think that you may have to endure what we all have to endure Mark in terms of the frustrating 'watch and wait' scenario. I wish I could offer you more definites but even the medics don't seem to be able to offer those at the moment. And in truth my doctor didn't get too excited about lymphocytosis in itself and said the haematologist wouldn't automatically react to it at relatively low levels. I'd say explore all other reasons for your symptoms to eliminate alternative causes. Your GP needs to be more sensitive to your concerns.

I presume you are being monitored and can only hope that this doesn't progress to a CLL diagnosis though you're probably so frustrated with the uncertainty that you'd rather know one way or another.

If you do receive a definitive CLL diagnosis, this community will be here to advise and support all the way. But for the kindest possible reasons, I hope we never have to hear from you again!

Best wishes,

Newdawn

[markus34 in reply to Newdawn]

Hi Newdawn,

Many thanks for taking the time to reply and providing such good information. I'm pleased to say that the doctor took my concerns seriously this time around and has recommended me for a second referral to the Haematologist!

Thank you for providing the links, I will be taking a copy with me to the Haematologist appointment. The second article mentions MBL progressing to NHL. If anything my symptoms match more closely to NHL so will be bringing this up with him.

Once again thanks for the reply.

Thanks

Mark.

[Newdawn Administrator in reply to markus34]

I'm glad your doctor is taking this seriously and has referred you for a further haematological consult Mark. I'm sure you'll be aware that CLL is a NHL but just to strengthen your information base, this link may help;

cancer.org/cancer/non-hodgk...

Good luck and let us know how you get on.

Newdawn

[Myrddin]

MBL is a precursor to CLL but not all those with MBL go on to CLL.

A useful article can be found here

cllsupport.org.uk/cll-sll/s...

[lapermone]

Just sent this link on virus and CLL as possibly related to another list member who is in early CLL discovered after and due to a very aggressive flu.

You may find it interesting...there are a couple more, similar on the same site. CLL topics updates Some feel there's a relationship, if not cause and effect. updates.clltopics.org/1520-...

Hope you can find some answers that will allow you some peace. Meanwhile, if you can, septa do your ground, do your research, keep questioning and be your own advocate. It was Chaya, the founder of CLL topics who was fond of saying, "no one has more skin in this game than you do". Don't get discouraged. It's hard not to, but don't.

best, beth