Fingers crossed

[Nigel-Q]

Haven't been on the site for a while , put the whole cll thing in the bottom drawer and tried to forget it , not too hard as I am told by two specialists at the Churchill that I have a very low grade of cll which is indolent and for which at the age of 65 I may never need treatment , and with no symptoms and fit as a fiddle , I believe them. The issue has come out of the drawer this week though, just had the first of my routine 6 monthly blood tests since being told I had cll , just waiting on results , no reason to be worried I tell myself in the two years I unknowingly had the disease the wbc stayed at 14 and a figure I don't fully understand stayed at 7 x10power of 9 , ! Doing all the right things as I always have, exemplary diet , lots of exercise , easier now I've retired , still won't be happy until I see the results, guess it gets easier over time

[CLLCalifornia-USA]

Waiting isn't easy and I haven't found it to get better over time. Wishing you a continuation of great health and a long life on Wait & Worry.😉

Kind regards,

Sally

[Loves2walk]

Hello again Nigel. I was literally just thinking about you!

I'm the "wife of" and we've only known my husband has CLL not quite a year now. I'll be interested to see how others respond. As this is all still fairly new to us, we still get anxious leading up to appt time.

I'm sure your appt will go well, looking forward to hearing some continued good results!

[Nigel-Q in reply to Loves2walk]

Had my first six monthly blood test a fortnight ago , been thinking about it , haven't asked for the results , neither the surgery or the hospital have tried to contact me in a panic, so I guess things can't be that bad , not sure now if I want to know , what would it do for me , if the low levels have risen , even slightly would only worry me and there's nothing I could do about it, if they've dropped would maybe give me false optimism , nothing's going to happen until I have some symptoms, which may be never, the consultants both said ,so I think I'll listen to my body and let it tell me, after all I went two years in blissful ignorance , feeling as fit as a fiddle as I always have done , your thoughts ?

[Loves2walk in reply to Nigel-Q]

Hi Nigel,

My husband and I differ on our approach to his CLL. I prefer to know everything I can, he prefers to be on a need-to-know basis.

You need to do what's best for you. As my mom always said, listen to that little voice inside, that's always the right thing to do.

I'm so glad your feeling well and moving along with your life.

Keep me posted!

[Salohcin]

I think Sally sums it up well. Approaching my first anniversary on W&W and although fairly positive most of the time it doesn't really get any easier with check ups every ten weeks.

[Youngen in reply to Salohcin]

Exactly! Just when you finally manage to really relax and put it in the back of your mind ... you have another blood test and appointment to get anxious about! Largely in part to research. Education and everyone on this forum, it is easier now than it was six months ago at DX. And I hope it will get even easier going forward...

[Rich316]

Hi Nigel,

There is the secret - trying not to worry about it. If your WBC count has remained stable then I would suggest you have every right to put it back in the drawer for another 6 months and every 6 months thereafter. I was diagnosed 8 ish years ago (age 44) and went through the normal 6 monthly blood tests. Looking at lots of forums whilst researching my condition, shortly after diagnosis, I think that the worry and the impact of having the invisible Cancer/Leukaemia/CLL tag stamped on my brain was the biggest impact. I remember saying to my consultant quite a few years in, "I wish I had never been told what I had and I would have carried on the last years blissfully ignorant and not know any different". He admitted that if it was clinically and legally possible there would have been a strong argument for doing just that. I had my tests every 6 months and watched my WBC and Lymphocyte count rise gradually and became quite jittery about a month before my next test. I didn't actually notice any physical symptoms until about a year before my treatment started - in October - and that was gradual. Noticing lymph nodes and feeling a little tired until it gradually got to the point where I was told I would need treatment soon - and even that was negotiable (squeezed an extra six months out of it so I could go on holiday after retiring from my job).

I would bet (And I am not a betting man) that everyone who has lived with CLL for a number of years would give the advice, Look after yourself and don't worry or think about it until you are told you are close to needing treatment (and there are lots of good treatments out there).

Then you have to believe it.

I hope you have a very long and worry free 'watch and wait'. You may never even need treatment.

[Eric70]

Hi Nigel, The statement and advice by Rich316 above is exactly how I felt until recently, when I was told treatment was required. I too put worrying into a draw that only came out every 6 or 12 months. Now I'm worried about the treatment required. So my advice too is, don't worry until you have to and you will get warnings from your consultant when to start to worry. Good luck and I do hope you have a long W&W. Mine is almost 9 years.

[PattiM]

Hi Nigel,

I'm in same situation. Had CLL for about 2 years without knowing. Stage 0, WBC at 14 when diagnosed. When I just had checkup I was so nervous for blood counts my blood pressure was 189/35!!!

My count did go up to 16. ALC from 10 to 13. But still feel great. Counts are still low so I won't be nervous for another 4 months!!! Hang in there

Patti

[AussieNeil Partner Administrator]

Hi Nigel,

If I understand your statement 'the wbc stayed at 14 and a figure I don't fully understand stayed at 7 x10power of 9', I suspect your lymphocyte count is 7, which is barely into CLL territory. We have members still on Watch and Wait with lymphocyte counts of over 200, with WBC naturally even higher!

I suggest you check through this 3 part series, then Just try and forget you have CLL - at least until the next blood test comes around. You may never need treatment or if you ever do, I suspect the treatment options will be far better by then...

Neil

[Peggy4]

Hi Nigel. Unfortunately I think that the worry is always there because things, for some, can change so quickly. My haematologist said to me that 'It's like living with a rain cloud over your head, but how much it rains can depend largely on you'. It's always going to be the 'elephant in the room' isn't it? however hard we try to ignore it.

I read something on this forum that somebody had written 'Don't waste what you have today by worrying about tomorrow' I TRY to do that.

Best wishes

Peggy