diagnosis

hi I noticed on a hospital letter my diagnosis is Chronic Lymphocytic Leukaemia (Chr. 11q-) is this good or bad having bit of a hard time at the mo had a severe cold with chest infection and asthma raised its ugly head had no problems with it for years now I cant shift this cold (4 weeks now) or clear my chest , have pains in my neck and under my clavicle area on my right side, very painful bones in my legs from my knees to my hips is this all just old age (im 59) or does any one else find these are part of CLL

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  • Hi mush 56,

    I am sorry to hear you are feeling so unwell.

    I take it you have seen your GP, after 4 weeks you should have some medication for the chest infection.

    As for the aches and pains, personally I have not developed any new ones since being diagnosed with CLL, the ones I have I was told by a specialist were wear and tear, I am 61.

    I hope you are soon feeling better, I have been trying Vicks First Defence to prevent contracting a cold. It is a nasal spray which you can use when you feel the start of a cold or as a protection.

    It gets very good reviews on Amazon

    Best Wishes

  • Hi Mush56.

    11Q deletion is not the worst prognostic factor you can have, but neither is it the best. That said, we shouldn't let our CLL be dictated by what prognostic factors have been identified for multiple reasons, including for starters:

    1) CLL is rarely about just one prognostic factor. We are discovering more all the time and we are still learning how they all interact with each other

    2) Because of (1) and other factors, prognostic factors tell the specialists about what happens for a group of patients with specific prognostic factors, not the individual

    3) Not all your CLL cells may have the 11Q deletion and the percentage matters

    4) Your age at diagnosis with 11Q also matters

    5) Prognostic factors can change over time, so it is important to have them checked before starting treatment in order that the best treatment choice is made

    Probably the best discussion on 11Q deletion patients was in this recent blog by Dr Sharman: cll-nhl.com/2013/11/11q-del...

    Have a read through the above blog and take any questions you may have to your specialist.

    Respiratory infections can worsen asthma - have you found this to be the case in the past?

    Wiganfan is right about you needing to follow up with your GP about your persistent chest infection - and don't forget to mention your asthma.

    Possibly the pains in your neck and clavicle could be due to enlarged nodes. As you'll have read in Dr Sharman's blog, these are more common in 11Qdel patients. Again, this is something you should check with your specialist.

    Some CLL patients report pains in their bones, but that's usually due to a side effect from G-CSF injections used to boost the neutrophil white cell count or with Ibrutinib therapy (joint pain).

    When do you next see your haematologist?

    Neil

  • Hi Mush;

    Sorry to hear you are going through a hard time, I had symptoms very similair to your own witha few more thrown in (outbreak of shingles and heavy night sweats) and was referred to a Haemotologist. However, I believe it was the Bone Marrow Biopsy and CT scan that gave the Haemotologist confirmation of Binet stage C CLL, i.e. heavy infiltration of CLL in the bone marrow and enlarged nodes and spleen etc. The first thing my GP practice were asked to do was ensure immunisation against pneumococous, haemophilus, influenza and meningococcus prior to FCR, they also prescribed Naproxem for the aches and pains but this had to cease during the FCR Chemo regime and currently only permitted painkiller is paracetomol.

    You are on the right website where there is loads of good information available, I also found the CLL conference full of invaluable information and support. Good luck and stay strong during this difficult period.

    Mike

  • thanks all my next appointment with my haematologist is November ,I have a Drs appointment tomorrow evening but I haven't found a Dr at our surgery that knows very much about CLL yet (hopeful tomorrow might be the right one ) very tired and don't sleep well so I hope he has time to sort me out my Asthma inhalers do nothing im wheezing and chuffing and puffing hopeful he gives me some steroids and another lot of antibiotics sorry for moaning you are all so good with your information . oh im 59 female

  • If the doctor you see is more knowledgeable than those you've had before, that will be a great find as it's a common problem finding such doctors. I think most of us best manage this problem by taking references to CLL related medical information from reputable sources and asking for our doctors to consider them with respect to our current health challenge.

    Do ask your doctor to do a culture swab to identify what's behind your respiratory infection so that the optimum treatment can be provided. If you only have a viral infection, there's not much your doctor can do, but if if you have a bacterial or fungal infection, then your doctor will be able to prescribe an antibiotic that better targets the infection.

    Let us know how you go,

    Neil

  • I've had similar issues. I was really having trouble with soreness in my neck but never really got a good reason for it. I also have an inhaler that I use occasionally. Most definitely way more tired than normal. When I have energy, it's a great feeling. I work in a busy county health department and tend to catch every single cold germ, but I really love being around helping people that need help. You just learn to adjust.

  • yes I have a butty van so out very early in all weathers and love meeting and speaking to all my customers , been to my Drs and he thinks the pain in my neck and clavicle is due to enlarged nodes but im wheezy and chest pain so off to hospital for chest xray got steroids see if they help but onwards and upwards

  • Hi Mush 56

    Pleased your GP has taken your wheezy chest seriously, hope you start to feel much better soon. Keep us posted.

    Best wishes

    Bubnjay1

  • thanks every one its wonderful for the support

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