Hi everyone
I've recently been diagnosed with cll and tomorrow..I have my ct scan...I can't help feeling I'm going to die..it came as a shock as I only went for cholesterol test. My doctor ordered more tests and within a week I had marrow biopsy and results. I have no real symptoms.. and work really hard on construction sites...manual physical work..slabbing and kerbing. I'm 48 in a few weeks and terrified.
Post being restricted to the community by Admin
A warm welcome Feelsolow which is a sad name which no doubt sums up how you feel at the moment. We’ll have to work to turn it around to Feelsoconfident!
It’s such early days for you and you must still feel in a state of shock and bewilderment. It’s tough going in for a cholesterol test and coming out with a blood cancer diagnosis! We all understand how brutal and scary it is straight after diagnosis.
I’m not sure which country you’re from but you’re having an unusual battery of tests so soon after a CLL diagnosis. It’s generally agreed that CT scans are not usually necessary and 6 yrs post diagnosis I’ve yet to have a bone marrow biopsy. Have you been given any reason why these tests were being done? Have your levels found to be high at diagnosis? What kind of specialist are you seeing because it’s generally agreed that a haematologist skilled in CLL is necessary and if at all possible, a CLL expert as time progresses.
You’re very young for this diagnosis but otherwise fit and you must feel very scared. I certainly did when I was diagnosed at 54. The best advice I could give you is give yourself time to adjust before you widely disclose. The reasons why will become more obvious as time passes. Learn all you can about this condition because to know your enemy takes some of its power away. Avoid feelings of despondency and thoughts of dying. This condition isn’t created equal and much depends on our unique chromosomal profile as to how it will affect us and how quickly we’ll need treatment. As I said 6 yrs on I’m untreated but am now at a stage where treatment discussions are starting.
Forget about depressing and outdated survival predictions on the net. CLL is firmly on the scientific radar and treatments have advanced immensely. It could be years, decades before you need treatment so don’t waste them in a state of despondency.
There’s a wealth of information on this site and a huge number of fellow CLL’ers of all ages and at every stage of the disease. The support and understanding is there for you whenever you need it.
Please ask any questions and best wishes to you. When is your next haematology consult? Have you been given a staging yet?
Newdawn
Thank you for your reply.My blood came back at 100,000 last Friday.Haemotologist rang me to go to Hospital on Saturday as he suspected Cll.I went to the hospital next day for more blood tests.He said come back on Monday for results and possible bone marrow biopsy.My bloods were 100'000 on Monday.I had the biopsy on Monday too.Went back on Thursday to get it confirmed as being CLL...Stage 0 ...I think he said .Arranged for C T scan tomorrow 1.30 pm. I Live in England and appreciate your support . I'm going to a wedding reception tonight and might try a beer to relax. 1 week ago I was a happy go lucky guy without a care in the world..Now I have to see my daughter cry so much because she thinks im going to die This week im in a completely different world and frustrated.Im a fighter by nature..but I don't have a clue who my opponent is !
This explains the Binet Staging (I’m also from the U.K.);
cancerresearchuk.org/about-...
This explains how to interpret your blood results;
cllsupport.org.uk/cll-sll/s...
Your world has been spun on its axis and you’re afraid and bewildered. Your biggest opponent at the moment is counteracting your own fear and you will, I promise. When I was diagnosed, I paced the floor convinced I should be crossing days off the calendar. I couldn’t look at my son without crying. That was 6 years ago. However, I didn’t disclose widely and that strategy served me well. You can’t cope with the reactions of others when your own are still so raw.
Get yourself out tonight and have a few relaxing drinks. It will be hard to get it out of your mind but you’re not in immediate danger. There will be hundreds more events like this and in time your world will start to settle.
It’s a very good sign that you’re feeling so well without symptoms.
P.S. Take care, (I’ve restricted your post to this community to protect your privacy as you’re newly diagnosed and may not have been aware of this function).
Newdawn
This helps in understanding the blood numbers results.
cllsupport.org.uk/cll-sll/s...
Talk to your daughter about results and what the doctor says and let her know you'll keep her informed so she doesn't have the fear of the unknown. Your family will have anxiety about this too
Have faith. At stage 0..which is the very 1st stage.. I am sure that you have many, many years..if not decades ahead of you. Your initial response of fear of dying is very common and understandable. From what my Oncologist told me, that, although a high wbc is indicative of CLL, it could be higher at times if your body is fighting an illness in addition to the CLL.
It's continuous wbc that would give you a better idea. At my initial wbc of 60k, l was given a variety of tests while initially hospitalized including the bone marrow biopsy and a Pet Scan, amongst others. Although the results were initially scary to me, my Oncologist assured me that that level was not of concern to them at this point. Ask lots of questions with your Oncologist, see if there is a Support Group in your area, and continue to ask questions and read others questions and responses on this site.
P.S. At 51, My Oncologist told me that I am more apt to die from old age than my CLL diagnosis. I hope this brings you some relief.
I agree with the recommendation not to look at survival predictions because they are outdated and don't necessarily relate to the new drugs available. It is a terrible shock when you have no symptoms. I suggest you don't tell co-workers and you tell only select family members and make sure they don't tell others. Keep your privacy during this time. Let yourself adjust to the news and have control over who knows about this and when they know. I wish you all the best
Thank you for your advice and support. Much appreciated. Best wishes to you !
As always your answer to another member to this site has encouraged me.
Sidebar: somehow I found a three-year old post of yours, and, not paying attention, answered it thinking it was current. Then I saw that you posted it three years ago.
Mea culpa..... and another lesson learned: always check time lines of posts.
Cheers,
SMS
That’s not a problem. Appreciative words are never wasted SMS 😊
Newdawn
Amen to that, Newdawn. It did give a bit of a chuckle, though, and a reminder not to be so impulsive in answering.
Being a retired teacher, I remember my main goal each day was to say only positive comments and to try to talk to as many of my students as possible. Now I apply it to everyone with whom I communicate.
Praise goes a long way and paves the road to improvement and create a positive atmosphere!
SMS