Newbie

[craig1]

Hi,

Freshly diagnosed,and trying to get my head around things at the minute.

[Cmac70]

Hi Craig, welcome to the club, i was diagnosed 2 years ago stage 2 at 45. I had a really rough time at first but eventually realized that my condition can be maanagable to a degree, there are lots of new advancements in treatment all the time, and there are far worse conditions I could have been diagnosed with.. all that aside it is still scary and obe never knows the outcome. I can tell you this is a great site with lots of wonderful people and advice. All the best.

Chris

[craig1 in reply to Cmac70]

Hi, Chris.

I am 46, they picked this up whilst looking for arthritis. I have cat scans booked in a couple of weeks and then back to the doctor in 2 months, where I guess I will find out more.

It's all a bit daunting at the minute.

Thanks for replying.

Craig

[lankisterguy Volunteer]

Hi crag1,

I suggest you look for the boxes labeled "Related Posts" and "Pinned Posts" On a computer they are in the upper end of the right hand column. On a mobile device they are way below.

Those will help you understand the large data base of thousands of previous postings and replies here and how to use them best.

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Here is an introduction/ overview of CLL and common terms- very easy to read and understand

bloodwise.org.uk/info-suppo...

and a more advanced explanation of blood components:

cancerandiblog.wordpress.co...

blood cancers:

cancerandiblog.wordpress.co...

cancerandiblog.wordpress.co...

cancerandiblog.wordpress.co...

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Or something similar as a white board animation/spoken dialogue:

healthunlocked.com/cllsuppo...

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If you want to learn even more in more depth, and you enjoy reading text online, this site has an more comprehensive learning course that can also bring you up to speed on the CLL specific discoveries learned over the last few years

cllsociety.org/2016/03/diag...

cllsociety.org/cll-101/

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If you do better with explanatory videos Start here:

patientpower.info/chronic-l...

Patient Power is a for-profit patient education website offers instructive videos and more on many health topics including CLL.

Among those videos is my favorite "explainer" of lab tests & results - Dr. Susan LeClair

patientpower.info/series/as...

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here is a list of links to other resources: cllsociety.org/cll-links/

Len

[craig1 in reply to lankisterguy]

Cheers Len.

Plenty to be going through there.

[Hidden]

Welcome Craig1, this is the place to learn about Cll and how cllrs manage our very quirky disease. best wishes & welcome.-bill

[claree_ford]

Hi Craig1, I was diagnosed last summer - I'm a "bit" older than you (63) and so far lucky to be on stage 1 Watch and wait.

Difficult to take it all in at first - I spent a lot of time talking to myself trying to get to grips with it all. Then I did tell a very few people - the ones who needed to know. This isn't a sprint and if (like me) you are lucky enough not to have visible symptoms I find it easier if most people aren't aware - you can always tell them later but you can't "untell" them....

As Cmac says, there are worse things - I just had to look around my near relations (oddly they're all getting a year older each year) to think "I'd rather have this than what you have" - I may change my mind on that later, but for the moment...

Apart from the fact that the treatments are getting better all the time, I finally came up with something that helps me (but then you are a lot younger than me) - "if nothing else gets me first CLL will - but then the same could be said about old age". I think you will find your own mantra to hang onto in due course.

Keep well, hang on in there, and there is a lot of support and information on this site - you are NOT alone.

Best wishes to you.

[shoshanaz]

The links that lankisterguy gave are good. Beyond that, and links you find here, I strongly recommend against "googling" randomly. There is so much old and plainly wrong information and "statistics". So much has changed in just the last few years, that much of the older stuff is irrelevant. There are no miracle natural cures: Good diet and excercise is great, but avoid supplements unless you discuss it with your specialist. Mostly, take a breath and spend time with friends (I only can think of the folks here that way) on the forum. Ask any questions. Knowledge does not change facts, but it does help you make better choices when dealing with them.

Everyone here has been through that shock of being told they have CLL. It will get easier.

I wish you didn't have to find yourself a part of the group, but since you are: Welcome, my friend.

[Cgolen99]

Hi Craig. I was diagnosed in 2013 and I tightly hold on to my oncologist telling me often that treatments are so good and numerous at this point that very likely something else is going to get me first before see CLL so to let her worry about my disease and to just go out and live my life. So that is exactly what I do ! I just started treatment for the first time and have had some adjustments to make on it due to side effects but it is going very well so far. I only read the positive things that I see and stay away from the gloom and doom because I don’t believe that applies to me. Glad you found this place! I’m fairly new to the site too.

Carolyn

[pkpayne]

Hi Craig and welcome to our group. We've all been where you are and it will take some time to adjust to the news. This forum is wonderful however and can answer almost any question you have so ask away! Sorry you had to join us but delighted that you found us.

Paula

[craig1]

Hi everyone,

Thanks for all your responses, I am hoping I go with the positive outlook, I guess I will know more when they have a pattern of tests to compare. Just got my 2 month appointment through, same day as my daughter's 18th birthday!!!. Hopefully it will bring a bit of luck.

Again thanks for taking the time to respond.

Craig. X

[Jacksc06]

Hello Craig Welcome to the family. I fully understand the confusion and worry that you must be feeling. I was diagnosed in November 2015 on my 55th birthday. It is indeed a lot to take on board but the good people here have a wealth of knowledge & experience in all matters CLL. I have catalogued my journey here from diagnosis to present day. Please feel free to browse, hope it is of help. Regards.