New to site

[Mccavigan]

Hi I have just joined. I was told about two weeks ago that I have cll. Still trying to get my head round it. Have just told a few of my close family. I’m 62 feel well was found in a routine blood test.

[Spacee]

Hi Mccavigan. Welcome to a great group of ppl living with CLL. From moderators and members who are able to understand and post about treatments. To just us regular ones who come to learn and share.

There are such good treatments due, I think, to the amount of research done for pediatric leukemia.

My hubby has the CLL, he is 70. Was diagnosed 6/17ish. No symptoms yet. Works full time, plays golf twice a week and yoga one night a week (he leads it). Keep living your life as normal as you can. Exercise, eat well.

We will hope yours is indolent (Meaning extremely slow to progress) and you have many good years ahead!

Linda

[Mccavigan in reply to Spacee]

Thank you so much x

[Oleboyredw-uk]

Hi Mccavigan, A warm welcome to our community. You will meet a number of people from around the world here, with a range of experiences, some with many years of experience.

Please feel free ti ask questions, we are all here to support each other, however please remember or replies will be experience based, we are not medically trained, just happy to share experiences to support each other. If you have specific medical questions please ask the medical team supporting you.

You diagnosis by routine blood test is a very common way to find out.

Getting your head round it takes a while, my best advice is to try not to panic and if in doubt ask.

What country are you from? Hope you don’t mind me asking. It can influence responses as different countries have differing support approaches.

best, rob

[Mccavigan in reply to Oleboyredw-uk]

Hi, I live in Northern Ireland. Thank you for the welcome x

[PaulaS Volunteer]

Welcome Mccavigan, to the club that no one wanted to join...

It's usually a big shock when we get a CLL diagnosis, especially if it was just picked up in a routine blood test like yours was. I'm not surprised you're finding it hard to get your head round it.

You say you're feeling well so I expect you've been told you won't need treatment straight away, but will be monitored regularly - often called being on "Watch and Wait" .

However, most people want to actively DO something, rather than just passively “watch and wait”.

So a few years ago, with the help of many others, I put together lists of practical suggestions for "things we can do" to help our journey with CLL

These lists are written especially for newly diagnosed folk and are not complicated - just simple, do-able things based on the experiences of many folk on this site. As time passed, I have updated the posts as appropriate. You might find some helpful ideas here.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

I see you live in Ireland. A wonderful part of the world! I'd never been there till a few years ago, when both my sons married girls from Northern Ireland!

best wishes,

Paula (in Sheffield, UK)

[Mccavigan in reply to PaulaS]

Yes the weather here keeps you guessing 😀 thank you for your help and welcome.

[Cllcanada Top Poster CURE Hero]

Welcome from cold 🇨🇦

I'm very fond of hamsters... Chinese Hamsters play a role in making a CLL monoclonal antibody treatment called Rituxan... it has contrbuted to my treatment on a number of occasions.

Some useless information from a 20 year CLL veteran... 😃

~chris

[Jm954 Administrator in reply to Cllcanada]

That comment about the hamsters made me laugh Chris!

[gp7591]

Mccavigan, Thank you for your post and sharing what for many people is challenging to discuss. I was diagnosed in May 2017 after noticing some swollen lymph nodes under my arms. One thing I can tell you with near certainty-after chatting with dozens of people in this and other Forums- is that everyone with C L L is different. They have different symptoms, different blood counts (W B C and A L C, etc) and often vastly different experiences. Yet sharing their comments and experience here in the Forum, as I and many others have done, helps other people. For many people, C L L is and will be a condition they simply have to monitor over many, many years. Others have more challenging situations and need extensive care and treatment. Many, perhaps most C L L patients will live long and relatively normal lives, even though they may need treatment. I highly recommend that you find a true C L L specialist (someone who sees and treats C L L patients on a regular basis, does research on C L L or is part of an institution which does active C L L research) because doing so will be your best move to get the most up to date and effective care and advice. Even if you have to drive or fly for several hours to get to a C L L specialist, DO IT. It will be the best move you can make for your health. There are many oncologists/hematlogists familiar with C L L, but some (perhaps many) of them are not up to speed on all the latest research and treatments. Comments I've seen in this and other Forums shows that to be true. Good news for all C L L patients: the newer treatments are proving to be remarkably effective, some of them bringing people to complete remission (CR) or M R D negative status (minimal residual disease) in 6-12 months. The newest "combination" therapies are proving to be extremely effective (research trials combining Ibrutinib and Venetoclax, etc). There are even a few C L L experts talking about a potential cure for C L L not too far down the road based on these newer treatments, which is exceptional because medical people really don't like to use that word unless they have substantial evidence to back it up. I know my answer is fairly long, but I wanted to share my knowledge in hopes of helping you. I made a promise to the good Lord to "pay it forward" in helping others and I hope I'm doing that here. Seek out a true C L L expert and go see them. You'll be very glad you did. Wishing you good health and all the best, G

[Mccavigan]

Thank you for the support x

[pkpayne]

A Texas welcome to you Mccavigan! This forum is such a wonderful support for us all and while I'm not one of the smart ones, I come for the support, understand, and knowledge that others can offer. I think realizing that we are all different and react differently to different treatments is really fascinating. I would also second the opinion of Gene by suggesting you find a CLL specialist - no matter where you have to go. It is the best thing you can do for yourself.

[Hoffy64]

CLL society web site can help!