first time here

[Dreamer4]

Hi everyone, had my CLL diagnosis this morning, at present will now keep being monitored etc as they are not worried and I am not experiencing any of the symptoms. Very helpful and supportive and suggested I join a group to share and be able to talk people undergoing similar. In the booklet I have seen some people's stories and know it varies for each patient if treatment required. So just coming on to say hello and get some moral support. Thank you -Heather 🙂

[studebaker]

Hi Heather and I think you will enjoy talking to people in this AMAZINGLY helpful group.

You can ask any questions at anytime you need as there is always someone up to answer you. You are lucky to find us soon after being diagnosed. You are not alone Heather we are all here to help each other.

🤗Dana

[Dreamer4 in reply to studebaker]

Thank you Dana, I am keeping a positive outlook as I know mentally how important that is and nice to know can share feelings or ask advice x

[SofiaDeo]

Hi, and welcome to the group no one really wanted to have to join. I'll mention many of us discuss very personal stuff, and want to do it without the entire Internet being able to see/access it. To do this, we "lock" our posts. The default on HealthUnlocked is "unlocked" so you have to edit a field at the very bottom before posting. This field can be changed if you forget to "lock" it, I commonly have to edit/lock mine!

You can find out how to do this, and learn other things about how to navigate this site and the basics of CLL, by reading some of the Pinned Posts. I'd start with the Guidelines; this isn't Reddit or Facebook, there are a few rules the administrators have us follow so the experience here is civil/pleasant.

There are also a number of Pinned Posts about the basics of CLL and the common medical terms used. Many of these are written for "non medical" people, making it easier to learn some of the "med-speak" and follow discussions when people start to get technical.

[AussieNeil Partner Administrator]

Welcome to our very supportive community Heather. As SofiaDeo mentioned, you'll find plenty of helpful information in our pinned post section, healthunlocked.com/cllsuppo... which can also be found below this post on a smartphone or tablet, or to the right on a laptop or desktop.

Neil

[Fowey2009]

Hello Heather

Sorry to hear you have had to join this group, but as other people have said, it is a very welcoming (and evidence based) community.

In the 13 years since my husband was diagnosed with CLL there have been enormous improvements in treatments, and the research continues to improve.

As treatments can vary from one country to another, it may be worth putting your country in the bio. This also helps if you are asking about medical or travel insurance.

Best wishes

Beryl

[Nucleusman]

which country please state

[G1llHa1n]

Be gentle with your self as you acclimatise to your diagnosis - no matter how good your prognosis is, it does take a bit of adjusting to. You have plenty of time to learn what you need to know but start with practicalities like ensuring all your non-live vaccinations are up-to- date since your immune system is currently at its best.

Knowing yourself, you may want to give some attention to exercise and nutrition possibilities to keep you at your best - or to get you there.

There are no silly questions, so do feel welcomed to ask - we've lots of experience between us.

[LeoPa]

Only this morning and you already found this community? You are fast 😃. Welcome!

[BigDee in reply to LeoPa]

Hello LeoPa

Yes, it took me 6 months to find this website. 👍

[SeymourB]

Dreamer4 -

Welcome!

There's so much to learn. I'm sure they've done some testing, and may do more.

You may find helpful info at these links - save them, it's a lot to read!

cllsociety.org/newly-diagno... CLL Society Newly Diagnosed - the CLL Society is an American group, and has support groups around the country that meet virtually via Zoom and sometimes in person.

nccn.org/patients/guideline... The NCCN is an American network of the top cancer research centers. They publish guidelines for patients, and separate guidelines for doctors to assure that patients get the best care.

leukaemiacare.org.uk/suppor... Leukaemia Care is a UK based charity that offers info and support groups.

=seymour=

[Mijoed]

Hi Heather,

Good you found this group as there is a great wealth of knowledge here.

On your profile bio it would be good to mention your country, year of diagnosis, and what stage of CLL you are (ie watch and wait). When replying to any questions, people will often check the bio to see if their answer is applicable / relevant to you.

Additionally, when you post, there is the option to share your post to "anyone" or "community only". The "anyone" option is discoverable to anyone searching the internet and some people are hesitant to reply. You’ll often see requests for people to lock their posts to community only.

If you are UK based, on facebook there is also the CLL Support Group - UK or Leukaemia Care - CLL Group.

Best wishes.

[BigDee]

Welcome Dreamer4

To the website of hope and information. First thing you will learn is you have plenty of time to study your CLL. Blessings.

[TexTom]

WElcome Heather - think you'll find this is a great site for all things CLL