Large, widespread lymph nodes + normal blood

[Grembold]

I finished my first lot of treatment for cll five years ago (I received treatment within a few weeks of referral from my GP) , and was doing well for about two and a half years. I then started to get breathless and increasingly tired and noticed a small node on my neck. Over the past few years these nodes have got larger (significant) in all regions, my tiredness and breathlessness have increased leaving my rather lethargic and I am losing weight, but my blood shows normal. Is this not unusual?

[AussieNeil Administrator]

Hi Grembold,

Was your breathlessness and tiredness ever properly investigated by your doctor? Did you raise these problems with your CLL specialist? There's many possible causes of which CLL is only one of them, so you should have it properly investigated if you haven't already done so.

With regard to your CLL symptoms not appearing in your blood, don't forget that CLL/SLL is technically a non Hodgkin Lymphoma that nearly always appears in the blood. When it doesn't it's termed SLL.

I can only surmise that as your CLL has come back, the dominant clone is more prone to lodging in your lymph nodes and spleen (which could be why you are losing weight) instead of appearing in your blood. So if this is the case, then it is unusual, but I think quite possible. Maybe your breathlessness could be caused by a badly positioned enlarging internal node; I really don't know.

All the above is purely conjecture on my part. I'm not medically trained. So I strongly recommend that you get your symptoms properly investigated by a haematologist that has had ample experience with CLL and other blood cancers to recommend what you can do to regain some quality of life. If this was happening to me, I'd be curious about what a Flow Cytometry test shows now, to verify that it is CLL that has returned. I'd also like to have a FISH or other CLL prognostic test to check on the dominant clones. That might perhaps explain your unusual symptoms and provide some guidance on what treatment, (if this is considered appropriate now), would work best for you.

I hope that you are able to get some answers.

Neil

[Grembold in reply to AussieNeil]

I think I have had every test possible for heart and lungs, and am told that these are better than can be expected for a person of my age. On Monday (6 July) I had a Synacthen test to see if my symptoms were the result of the Prednisolone I had during treatment my CLL, five years ago, on the natural production of cortisol.

The tiredness and breathlessness increases with the growing enlargement of the nodes.

[AussieNeil Administrator in reply to Grembold]

Hi Grembold,

I guess the tiredness are related to your increasing tumour burden, but I can't understand the breathlessness. I have that problem too, but generally only if I push myself. I'm not getting any answers either, but I know I'm getting near needing treatment.

Given your heart and lungs have been given more than an OK, are you happy with how well your CLL specialist is supporting you? Have you considered asking for a second opinion? If you say where you live and ask for suggestions, hopefully you'll be given some leads. You might want to make that post private.

Neil

[Grembold in reply to AussieNeil]

I had got my GP to refer me from Oxford University Hospital NHS Trust (the Horton Hospital) to Northampton General in February after the haematologist I was seeing there felt my neck (which had become twice it normal width in a coupe of month while the rest of me was getting thinner) and said he could feel muscle.

[Jomary8505]

Hi Grembold,

I am sorry to hear you are not feeling well. I had exact symptoms prior to treatment with FCR from Oct 2014-April2015. I was originally diagnosed 2 yrs prior to that through a biopsy of my enlarged lymph nodes. My bloodwork was always fairly normal however my platelets and RBC did start to lower immediately before treatment. I too had breathlessness and an elevated heart rate 110. I had enlarged lymph nodes throughout my body including my chest. I suspect this caused some of my problems. I had testing too for asthma which was negative. Since treatment, my heart rate is normal 70 and my breathing has returned to normal. While I hope your remission has not ended, I wanted to let you know that I also had the same experience. Good Luck JoanMary

[Grembold in reply to Jomary8505]

Hello Jomary8505

That's the thing. When I last visited my haematologist, in May, reiterating my increasing tiredness and breathlessness, I also informed him that on the two occasions that I had had a scan (3 and 6 month prior) the nurse who removed the needle asked me if I was taking blood thinners (which I am not) and that I had noticed that if I had a cut, prick or graze it bled a lot more and longer than usual; and that my skin inflamed and itched when contacted with cold - which had happend the first time round. These conditions were given a name and batted away as not being part of my CLL, and I was told no further scan was needed and come back in three month.

I am feeling very frustrated and helpless.

[Jomary8505 in reply to Grembold]

I am so sorry you are feeling frustrated and helpless. I honestly don't think physicians relate some of our symptoms to our CLL. I too had lower platelets (but still within normal range) which caused prolonged bleeding and bruising. I also was getting ill more frequently. I don't think MD's can really understand how frustrating it can be to have symptoms out of the ordinary which they then seem to ignore. I hope you get the answers you are looking for. I remember the helpless feelings when first diagnosed and my questions were avoided by my physician. I still feel frustrated at times however I have a specialist who I can call anytime and she gives me the info I need to relate to my local hematologist. Hang in there. Maybe it would help if you set up another apt and expressed your legitimate concerns and requested a CAT scan to see if there is serious progression? My symptoms and results of CAT scan are what prompted treatment recommendations by my CLL specialist. JoanMary