Understanding CLL better just been diagnosed - CLL Support

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Understanding CLL better just been diagnosed

sniff23 profile image
13 Replies

I've just been diagnosed with CLL been given a booklet to read by the consultant but don't know much else about it. I'm currently on the watch and wait plan and not prescribed any form of medication.

Although I understand each person is different are there any tell tale signs to look out for apart from pain.

Sorry I'm a newbie as only diagnosed on the 17th December 2020 so still coming to terms with it.

All said and done have a merry Christmas and hope 2021 is a better year.

Regards

Chris

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sniff23 profile image
sniff23
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13 Replies
keeptalking profile image
keeptalking

Welcome to the group. A rotten time of year to be given your diagnosis. I had mine in December two years ago. I’m sure those that know more will be along soon to say more about what to look out for but I can say that the booklet (if you’re in the uk) tells you all you need to know for now.

There’s only so much you can take in at the beginning and you can frighten yourself unnecessarily with overload of information. If you’re on watch and wait there’ll be time to pick more up from this group over the years.

Try to have some good times over Christmas whatever you’re doing. Keeping yourself as calm as you can is part of your treatment.

sniff23 profile image
sniff23 in reply tokeeptalking

Thank you reassuring to hear

Jm954 profile image
Jm954Administrator

Hello and welcome to our group where I hope you will find information, support and friendship. Please check the Pinned Posts section where you will find lots of helpful stuff to help you live well and information about CLL too. Please ask anything you are not sure about, there are no silly questions and we have lots of people only too willing to help and share their experiences to assist others.

Take care

Jackie

sniff23 profile image
sniff23 in reply toJm954

Thanks Jackie I'll keep this in mind

Loves2walk profile image
Loves2walk

I’m so glad you found this group! My husband was diagnosed 5 years ago, and thankfully still on watch and wait.

We had a terrible first few months after diagnosis. We just couldn’t wrap our heads around it. I happened upon this site, and it was a game changer for us.

Every question I’ve asked has been so nicely and clearly answered.

You have a lot of processing to do right now, but I assure you there are better days ahead!

sniff23 profile image
sniff23 in reply toLoves2walk

Thanks love2walk

cajunjeff profile image
cajunjeff

Chris, welcome to the forum. While not a formal brochure or anything like the hand out you got, I wrote a post for newly diagnosed people based on what I wish had been better explained to me at diagnosis which I link to below. I hope it’s helpful to you.

healthunlocked.com/cllsuppo...

louie48 profile image
louie48

Hey sniff23, Welcome to the family. We all experienced the fog you're going through. This forum is a good place to ask questions and find more resources, The more you research CLL the more the fog will lift. There is a rainbow beyond the fog. Merry Christmas and Healthy Happy New Year.

sniff23 profile image
sniff23 in reply tolouie48

Thanks louie48 for your kind positive words you have a merry Christmas too happy healthy new year also

Bubnojay profile image
Bubnojay

Hi sniff23

Heartily recommend Cajunjeff’s post for the newly diagnosed.

I too was diagnosed over the Christmas and that was 10 years ago and I still watch and wait.

You will get over the shock this is not like solid tumour cancers needing quick treatment.

Do your best to relax and have a good Christmas.

Bubnojay

sniff23 profile image
sniff23 in reply toBubnojay

Thanks Bubnojay 10 years sounds more reassuring . Hope you have a great Christmas all the best

Teddo profile image
Teddo

Welcome Sniff. I can assure you every single one of us was where you are now. Note I said was. Your understanding and emotional state will get better with time and understanding. I am into my 7th year and still on watch and wait. I only wish I had discovered this site when I was first diagnosed as it would have lessened my worry immensely. You will find informed and caring folks here, and we constantly remind one another of the incredible progress made and being made in the treatment of CLL. There is much hope for you going forward.

Teddo

sniff23 profile image
sniff23 in reply toTeddo

Thanks Teddo everyone has been so kind have a merry Christmas all the best

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