I was diagnosed with CLL about 6 weeks ago and am due for my first follow up appointment with the haematologist. Stage B wandw
I have days where I feel I could conquer the world and others where I feel lousy...
When I feel rough I ache across my back and rib cage, my head and neck feel heavy, my neck can feel v. Sore and my groin also hurts. Energy levels lower than my normal before cll!
A few questions:
1. Is this normal for Cll?
2. Is there anything I can do to help myself?
3. What questions should I ask at appointment next week?
4. Do I need earlier appt or advice?
I have just returned to work on a phased return ( teacher) mornings only so perhaps it's that!
Thank you. .from paranoid Beth!
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Bethan49
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Hi Beth. Check out my page under 'Haematology Question'. I asked this before my appointment and got some great advice! with regard to feeling different in different days, I think that this applies to everyone whether we have CLL or not. I'm trying hard not to attribute everything to 'IT'. Hard though isn't it? Certain jobs (mine too) are very full on and leave little time to catch your breath. Let us know how your appointment goes. Peggy.
It's easy to blame cll for all the other aches and pains we feel.
There are numerous posts on here asking similar questions which you find in the recently diagnosed pinned section.
The truth is that diagnosis is a shock and this affects us both physically and mentally and our bodies react to the messages we are giving it. You probably feel rough because of this also as well as any physical ailment.
Try and relax and think about the questions you need to ask when you see your medical team. Get as much info off this site and the cll support association site as you can but don't trust Mr Google. Most of the info on the internet is way out of date as things move fast these days with cll.
Many of us ask for copies of our blood results so we can compare how the condition progress is going.
I would also write down any questions you may have and take someone with you or write the answers down as they are given because we forget half what is said at the first consultation.
You need to know what stage you are at.
How the condition is affecting your lymph nodes ,spleen and liver?
Ask the consultant to explain the blood results and compare to normal ranges and ask what the initial prognosis is for the disease developing ?
There are loads more technical questions that can be asked and you will find details of theses in the recently diagnosed post.However don't blind yourself with science to start with just ask the basics and as time goes by you will learn a lot more about the condition.
You may be in the 33 per cent of CLLers who never need treatment let's hope so!
Just take things steady and slowly get used to belonging to the club no one wanted to join.
My best wishes are with you keep us informed of your progress.
Also if you want to make a post private to this community you can do so so that your info doesn't get spread over the Internet.
I am sure one of our admin team will change your post to private if you wish them to.
Hi Beth...I've had similar aches and pains for the last 4 years. My cancer doc in Windsor said the level of pain and fatigue I had been experiencing was inconsistent with my blood counts. After 4 years of this I got a second opinion by a very highly regarded CLL specialist in Hamilton. He also concluded that the fatigue and aches and pains were inconsistent with my numbers. Hrumph...the fact remains however that these aches, pain, fatigue and swelling/shrinking of my lymph nodes is occurring, I can't possibly put in a days work and despite numerous pokes, prods and other tests...the symptoms remain and no other cause has been identified. I look at it this way...prior to CLL I had none of these symptoms and as they have not been able to identify the cause, then I am quite comfortable attributing them to CLL and it's unique affects on individual patients. After all, for me, I sought out the docs after 6 months of feeling "off" too see what was wrong and that's when they found CLL. While the medical community might feel more comfort in chalking it up to something psychological so as not to point to the lack of irrefutable knowledge about CLL, what test indicators are important and what the associated symptoms are; I am not of the same "opinion."
I have read too many times on this list of others having the same symptoms with blood counts all over the place. I have also read over the last few years, how the medical community is jumping from one area to another for what the indicators are...or what treatment works and doesn't work. I just want what is going on with me to be validated, not pooh-poohed when I take the time to travel to an appointment. Hang in there and "when" the docs tell you they don't understand how you can be feeling so bad...try not to take it too much to heart like I and others have...but know that you know what is going on in your body and you know what real pain is.
Thank you so much for your reply. I have just had follow up appt...first since diagnosis. . And although my bloods are stable which is great, I came away feeling like all the aches and pains were in my head. My groin aches as does my neck. Lymph noded are sore and I am shattered . Feel confused.. I am a nutcase! But this is how and why I was diagnosed so it can't be in my head. ...?
Your appointment was with an oncologist or hematologist? General practitioners are rarely up to speed on blood cancers or node involvements.... best find a doctor who can address the issues...
Did your doctor offer any help, pallpate the nodes etc.?
Hi! Appointment was with the haematologist; I had a full examination but when talking felt he was just pacifying me... from body scan know I have nodes in groin and abdomen so this causes discomfort too. Main attitude was you are no worse off than before diagnosis... !
I would get that feeling every time I visited the cancer centre...and a CLL specialist. No wonder its so hard to get disability when you have CLL. I just finished my last test today and once again (other than CLL) I'm a perfect physical specimen. So why do I feel like crap? Maybe CLL is more individual than THEY think. Pulmonary test, Echocardiogram, treadmill stress test, EKG, allergy specialist and blood, blood, blood work. But if nothing shows up, let's play the psychosomatic card. Frustrated and pulling out of watch & wait...tired of not feeling heard and believed
Hi I also agree that when you have Cll you can have all sorts of symptoms including pain. I get terrible pain in my bones and muscles. I got Macmillan to recommend pain relief which my GP was happy to prescribe. Remember on this site you are not alone and you are not imagining things. Best wishes and good luck
Hi Bethan, I'm 40. Got diagnosed with CLL in December 7th 2017. After normal blood work I felt like crap. Tired chest colds. They said I have CLL stage 0 . I think there is 2 types mutated and non mutated. I believe muted is the better one, it's the opposite of what you think it would be. It's now May 2018. My wbc was 18 at time, went to 33 with antibiotics, now dropped to 22 just 4 above initial diagnoses 6 months.
This is still new and scary feeling, but being watch and wait at stage 0. Hopefully they'll find a cure or something to stop progression.
I have a lot pain in lower butt,hips inner pelvic area. In have lympnode. Main problem that's bugging me is my back and chest. You know when you move around or breathe deeply. Feels like a cold trapped inside. Achy feeling as of lungs are irritated. Ready somewhere it's cancer in bone marrow compressing against nerves etc.
I guess achy backs and chest are typical. Only other thing I have is almond size node under right jaw, neck, smaller, ones few other spots. I'm a big guy 6'3" 375..Main thing for me to lose weight to feel better healthier, at this time my dad has cirrhosis of liver end stage, not caused by drinking,been in hospital 3 weeks. Going to nursing home.aoot of stress for mom, me and sister. God will comfort us and give us strength.
Hope they find cure, for ALL cancer.
Just continuing ask questions no matter how weird you think it is. Cause it's our lives at stake and deserve the best care and help we can get to beat this disease
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