CLL - new to this site

Hi  and welcome to the Macmillan Online Community although sorry that you needed to find us and especially sorry to hear about your ongoing going diagnosis.

A blood cancer diagnosis can brings many questions, confusion and lots of stress, I was diagnosed back in 1999 with a rare type of Non Hodgkin’s Lymphoma and talking with other people who are walking the same type of journey will help you navigate this rollercoaster.

The Community is organised into dedicated support groups and I see you have found our CLL, SLL, HCL group, this will be a good place to connect with others navigating the same type of cancer journey.

To go to the group just click on the link above then you can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'. 

You may also find Lymphoma Action, a small UK Lymphoma Charity a good place for information and run regular online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

chronic lymphocytic leukaemia (CLL) and small lymphocytic lymphoma (SLL). CLL and SLL are different forms of the same illness. They are often grouped together as a type of slow-growing (low-grade or indolent) non-Hodgkin lymphoma.

Have a look at the link below as it gives you an idea about talking with your Haematologist.

lymphoma-action.org.uk/.../LYMweb0014QsMedTeam2020v4_PDF_information_sheet.docx.pdf

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

All the very best

Greetings and a warm welcome to the community.

The 'Highlander' has covered the subject well, but I would just add that CLL is a vary variable disease.

Some like myself have never had any treatment even though I was diagnosed back in 2005 or 15 years ago.

Roughly 30% never need treatment.

Luckily the situation has changed massively over the last ten years and now we have a selection of new drugs that stop any progression of the disease. Most of these being simple pills you take each day. And there are more drugs in the pipeline coming in the next few years. 

I would then expect that your haematologist will just monitor the situation with monthly or 6 monthly blood tests to see how the situation develops. This being a period of 'Watch and Wait' as  there is no point in rushing off for any treatment if you feel fine and the blood count does not get excessively out of order. 

So there is plenty of hope for the future and good luck with your haematologist visit.

Dick

Thank your for your reply 

Thanks for your reply