Follow up blues

[Superdad3]

Was hoping for a steady number My last three follow ups which are ever four months were pretty steady but a little spike so hopes for a 6mth or longer repreive was not in the cards back again in 4 mths

[Newdawn Administrator]

Four month intervals are not at all bad Superdad and I never once achieved anything more than every 3 months. There can’t be any serious cause for concern with that frequency so I wouldn’t be too upset about it.

What kind of ‘spike’ was there? How are things going generally?

Regards,

Newdawn

[Superdad3 in reply to Newdawn]

It went from 25 to 31 from my last visit. It sat at 25 for a few follow ups. I think mentally I read if it went over 30 they watch you closer so was hoping to stay below that number so they could at least make it 6mths. My other blood counts are good so shouldn’t complain, still have days I wish I didn’t have this black cloud following me but I know there are many others dealing with a lot more than I am so i really should be grateful it did not go higher

[Newdawn Administrator in reply to Superdad3]

I absolutely understand Superdad and when my ALC was much lower, I used to watch every little increase with alarm. Once over 30, there’s a greater significance to doubling but in truth 25-31 in 4 months is a very small increase. I know we prefer no increase at all but that’s very steady and slow moving.

Interestingly, I went for the consult to organise the start of my treatment last week and it saw my ALC the lowest it’s been for 18 months. However, I actually felt the worst I’d ever felt and it made me realise that blood results are only a tiny percentage of the overall issue.

Feeling well without lots of symptoms and badly enlarged nodes is a great place to be. Without doubling in 6 months, the ALC isn’t the main issue at all. The Haemoglobin and platelet levels are vitally important as are managing to keep frequent infections at bay.

You’re actually doing great and on a very slow trajectory!

Regards,

Newdawn

[Superdad3 in reply to Newdawn]

New dawn,

Appreciate the kind words and realize that i am doing well, I guess it was like a reality check of what has changed from less than two years ago when everything in my life was on auto pilot. I see many of you posts and you are an inspiration and helpful to so many on this site. Thanks for the responses and will stay in touch.

[MsLockYourPosts Passed Volunteer in reply to Superdad3]

31 being just one over 30, I would not think of yourself as being in the over 30 and have to start to worry crowd. Your count could just be a matter of how the machine was calibrated, or part of the normal bouncing that happens under 30. And it's only doubling that is one factor in considering how you are doing once you go over 30. There are people who go to 300 or higher who do well without treatment. The fact that your doctor wants you back in four months says he is paying attention to your counts, and maybe, also, your reaction to the change.

[Superdad3 in reply to MsLockYourPosts]

M,

Appreciate the encouragement and I know I should not be disappointed that it is not as drastic as it could have been but also now wondering what the next follow up will bring that’s weighing on my mind. I always been in good shape and work out, but I’m going to try and lose the 10 lbs that I have wanted to lose and get more excercise, it may not impact my next follow up or my numbers but at least I feel I’m doing something. Thanks Again for the encouragement.

[1ofakind]

Understand how you feel.....30 was a personal cut off ... no concern before 30 ?? Of course that is what we bring into this and not necessarily what the medical facts mean ... We all do this to try and give ourselves peace of mind ..”ok below 30 I can handle”

Now we can say ....I’m ok and topped 30 so feeling ok may be the new marker .....

Continue to feel well and enjoy all the other parts of your life too !

Be well!!

[haposwald]

Don’t sweat the numbers so much if possible because all they are is numbers! The best I’ve felt since diagnosis my wbc had jumped from 34k to 105k and couldn’t figure it out all my lymph nodes decreased in size almost thought I was normal for a minute! Wbc hadn’t doubled twice in a 3 month period so no treatment......... then nodes started coming back bigger than ever and wbc @ last check were 89k ..... so me in more concerned about how I feel and let the numbers do what they want!

[Superdad3 in reply to haposwald]

Yes I know numbers aren’t everything but I can’t remember what feeling normal is anymore, enegery level fluctuates but don’t ever feel like i ever have a full tank, I work out little less and take more naps and breaks when doing work around the house or projects, just not sure if it’s my age which I’m not old at 56, just can’t remember the last time if had an abundance of energy.

[haposwald in reply to Superdad3]

Right there with you haven’t been same since about 3 months before diagnosis! It changed my whole life! No energy used to race motorcycles and own a small shop those days are done! I do get a b12 injection every other week! I do what I can when I can and take a nap when I have to! Don’t misunderstand me having cll sucks big time, but could be a lot worse and looks like treatment keeps improving I go in on the 14th for blood work check and I’m seriously thinkn about doing 6 months of imbruvica and see where it lands me...........

[Superdad3]

Yes true just miss all that energy I had and can’t tell if the treatments will Actually help returns some of that energy back. I was trying to follow some of the posts but seems different for everyone. I try pushing thru it saying maybe it’s in my head and I do know when I don’t think about it I seem to feel more normal at times.