Cll symptoms

Hello i have been diagnosed with cll. I was referred to a hematologist. I tried to explain my symptoms to him but he did not seem overly concerned and i am having to wait until june 15 till my next appointment for results of blood tests. I was wondering if anyone else has these symptoms. I get awful headaches, painful neck, hard painful lymph nodes in my neck & the pain from them radiate up to me ear (right side) tiredness, aching, i also get sort of shingles symptoms which are debilitating, night sweats and occasional bruising on my stomach. It sounds like alot i know but cannot cope with them coming and going. Is there anyone else feeling the same? It is worrying me as my appointment is quite a while to wait. Thankyou

14 Replies

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  • I am newly diagnosed and in W&W, but many here will tell you that you really need to find a CLL SPECIALIST. (Someone who only deals with CLL) With the ever-changing treatments for CLL, a regular hematologist who deals with multiple kinds of blood disorders will not be as up to date on CLL as a specialist would. It sounds like you are having some B symptoms related to CLL and you should have a specialist assess your situation. The specialist can work with your hematologist if a specialist is not near you.

    Good luck to you. There are a lot of knowledgeable people here. Don't hesitate to ask questions here and learn from these great people!

  • 4 weeks will seem an age to you but once the blood tests and immunotyping result is in the haematologist will be able to tell you more. The beginning of diagnosis is a bit of a waiting game. We are all different in presentation of disease.

    If your prognosis was urgent they would see you far sooner. Many people who are told they have CLL want to be treated asap. It doesn't work like that. It is a waiting game and will be throughout. Most relish the wait as that means they are avoiding treatment.

    So, be patient and use the waiting time to do some study. Lots on this web site.

  • Thankyou all for your reply. My concern is that if it is cll and i am put on w&w what will they do about all the unpleasant symptoms that keep reacurring. It has been going on for about 8 yrs now and becoming more frequent. It has got to the point where i look back at nice things that we have done as a family but most have memories of feeling unwell and having to put on a 'front'. I feel i just can't any longer & this last bout of symptoms have just wiped me off my feet. Each day im getting better but its such a struggle. Does anyone else feel like this? And have they been helped with their symptoms? Thankyou

  • Hi Nev1,

    It is frustrating when you feel so unwell and your doc seems unconcerned. Unfortunately there is not much you can do until your test results come. If at that time you still feel unsatisfied with your care, please get to a CLL specialist. Quality of life is important and you should not be in so much discomfort. If you think you have shingles, call your doctor and ask for an antiviral immediately. Hang in there. Let us know how it goes.

    Maxine

  • Thankyou Maxine

  • Hello Nev1, I am so sorry you are feeling so unwell. Initial diagnosis with CLL is a daunting and unsettling time in itself. You do sound quite stressed, which is understandable. I wonder if you are getting some tension in your jaw from stress that could be triggering your headache? This does happen to me from time to time. When I started treatment in February this year for my CLL, I started getting terrible headaches and was blaming side effects from the treatment. But I think it was me just getting worried awaiting possible side effects, most of which did not happen.

    The waiting around for the next appointment is frustrating but hopefully you will get useful information to help you and your consultant assess your next steps which may be "watch and wait". As others have said, if you continue to feel unhappy with your consultant do ask for a change or second opinion from a CLL specialist.

    All the best, Holly.

  • Thanks Holly. These symptoms have been getting increasingly worse over the years. I have been getting reacurring symptoms for about 8 yrs now , each bout recently becoming more unbearable to the point of having to take time off work. Thankyou for your kind words

  • Sorry about how you are feeling Nev1 but I echo - you need a specialist or atleast a doctor who is more empathetic!

  • Hi Nev

    Are you in the UK?

    Jamie

  • Hi Jamie, yes i am

  • Me too.

    I wouldn't get too obsessed with having a cll specialist as they are few and far between over here.

    I was diagnosed two years back and my experience has been that unless you are assertive you will be left to struggle with the symptoms.

    I really push my gp/ haematologist and if I didn't- nothing would happen.

    It doesn't have to be confrontational or anything it is almost as if they expect it. So if there is any symptom outstanding- tell them how it impacts on your quality of life. I have this to be a much more successful technique than letting them manage the care I get.

    Make notes of any questions/ niggles you have and take them in when you see your haematologist. If you can - either take someone with you or record what is said.

    My memory has been dreadful since diagnosis so I find that really helps.

    With regard to painful nodes - my painkiller of choice is usually ibuprofen but I find that that doesn't help node pain.

    Weirdly- paracetamol does. ( for me anyway)

    If you currently pay for prescriptions -Apply for a medical exemption which all cancer sufferers can get. I don't know how I would cope without mine.

    Hope you get some relief and answers soon.

    Jamie

  • Hi Jamie

    Thanks so much for your helpful reply. Can i just ask, if you don't mind? What symptoms do you have and do they come & go.Also how do you go about getting an exemption form? I had no idea you could get this. At the moment im having horrible shingles type symptoms and the fatigue is overwhelming.

    Thanks again

  • Hi Nev

    Regarding symptoms, these are some of the things i have regularly.(Not entirely certain if all are CLL related but i always bring up as much as i can with my haematologist.)

    Just some background - i'm 49 in W&W, no treatment yet. I'm stage B. I have had a massive improvement in my blood and nodes in the last year. My bloodwork looks almost the same as a healthy person now and yet i have more symptoms than ever. My nodes can't be seen and can barely be felt.

    Here we go:

    fatigue - i get really sleepy around 11am and around 6pm. This has been constant for about 9 or 10 months.

    Weakness - muscles still look normal and feel normal to touch but i just have no strength at all. If i lift something moderately heavy like a car battery i have to strain ( and swear! ; )) and then i will be breathless, dizzy and nauseous.

    Never improves.

    Breathlessness. - Sometimes i get this after simple tasks like dressing other times i am ok with that kind of thing. I get it always when i walk, particularly going up slopes or stairs.

    This then brings on dizziness and nausea.

    Dizziness and nausea - come and go on quite frequently, sometimes as above, other times for no apparent reason.

    Cognitive issues - my memory is terrible now. I often struggle for words. I am quite articulate when i am well so this is really frustrating. I really struggle with numbers, measurements and money. I have 'brain fog' at least a few times each week.

    Mouth ulcers - always had terrible problems with these but now they are MUCH worse. I discovered Prednisolone as a mouthwash through this page. It has enourmously improved my quality of life as it speeds up healing rapidly.

    Genital issues - i get a sore foreskin / possibly thrush very frequently. I also have frequent boils around my groin.

    Bone pain - comes and goes

    Joint pain - nearly all the time in my knees ( i now use a stick as i feel they are about to give in) it comes and goes in other joints like my hands and feet.

    Acid reflux/ severe trapped wind / bowel problems - they all come and go.

    I think that's it! lol.

    I feel you on the fatigue. If i could get rid of the fatigue, breathlessness and weakness i could cope with the rest.

    My GP is working through various other things that may be wrong with me. They know i don't have asthma and have put me on Vit D but no real progress has been made beyond that.

    I think my GP receptionist gave me the exemption form and then the GP signs it.

    I have heard of some folks who have been told that they couldn't apply. That is BS.

    If you have been diagnosed with Cancer you are entitled to it. So be assertive.

    As i mentioned, it has been a life saver financially speaking.

    Hope you are ok at the moment, this is a really fantastic and knowledgeable forum, ask anything you like - someone will have an answer or at least sensible advice.

    : )

    Jamie

  • Thankyou very much Jamie.

    I hope your bloods continue to improve. It's a strange illness, one day ok then plunged into feeling awful.

    Good luck to you and thanks for your help

    Nev1

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