new to group

[jim24]

Hi

Just joined recently have been confirmed with CLL a few weeks ago, no symptoms I can feel and would not have known if I had not had general blood tests done. On W & W and had a CT scan last week to check status and to give a base line for the future. There is a lot of information on line and enough positive stories to help you put this in perspective. Keeping positive and active and will just wait to see how this develops or hopefully stays as is!

[MsLockYourPosts Passed Volunteer]

Welcome! A good resource, besides this one is cllsociety.org Stay away from doctor google. Lots of old and incorrect information.

[Kokobean]

Welcome to ou r group. Keep us posted when you find out specifics. CLL varies so much, I’ll pray for the boring variety for you.🙏

[AR0613]

Welcome! Keeping positive and active is a sensible strategy and should serve you well.

[DisneyMom]

Welcome to the club that no one really wants to join.

This is a great group of people with a wealth of information. Im new as well, and everyone here is very welcoming and eager to help.

CLL is so complex and confusing. I will be learning my specific breakdown next Tuesday, but it honestly seems like it's as different in each person as a fingerprint.

But the research is fascinating. I can't wait to see what the future holds!

Wishing you a long, uneventful W&W!

Carol 🇨🇦

[jim24 in reply to DisneyMom]

Hi thanks for the reply

Does anyone recommend a single type of measure which will indicate development

Jim

[AdrianUK in reply to jim24]

For most people (but not all) the rate of change of lymphocyte count tends to be associated with the rate of other changes. But having said that some people’s nodes grow faster than their counts. So it’s not an exact science. But for sure if your count is stable or going up slowly you may well be able to go a long time without treatment but if it’s shooting up you may find you need treatment sooner. But don’t pay any attention to it at all until it gets above 30 (thousand ).

There are other things to look out for like your haemaglobin levels and platelet levels and most importantly of all any symptoms. Your body will tell you if it’s struggling and one reason why the rate of change is important is that our bodies struggle with any change that happens rapidly but can cope much better with slow changes.

[PaulaS Volunteer]

Hi Jim24, Welcome to the group.

I see from another reply, that you’re in bonny Scotland! I have a soft spot for Scotland – we used to enjoy holidays there every summer. Now our son and his family live in Glasgow, we feel even stronger links with that lovely land.

Anyway, back to CLL. As a newly diagnosed person, you might be interested in the following article. It’s a collection of “29 Things We Can Do" to help our journey with CLL. These are not complicated things– just practical suggestions based on the collective experiences of different people on this site. Many people have said they wish they’d had this info when they were first diagnosed, but still find it a useful reference now.

Not everything will be relevant to you, as we’re all very different, but I hope you'll find some useful points there.

healthunlocked.com/cllsuppo...

Best wishes,

Paula (in Sheffield)

[haposwald]

Most important keep on LIVING! Sounds like you got over the initial Big C word as well did I Had been on W/w for 11 yrs and now into my 3rd month of imbrutinib and doing really well blood test upcoming and will wait for results and email from hematologist! To compare notes!

[Fofzero]

Welcome, good to hear you have no symptoms so far. I have been on W & W for 5 years, the longer it stays like that the better as far as I’m concerned. Best of luck with it.

@haposwald - it’s always good to read positive comments like yours!

[PSP52]

Welcome to this great supportive group. 👋