Newly diagnosed and looking for guidance on resources to educate myself. Tried dr Google and ended up in a doom loop so any advice accepted

[TobyBelch]

Fresh from diagnosis and need to learn as much as I can

[albie58]

Hi Toby!

CLL Society has the most up to date information on it's website with webinars on demand that are also up to date and supply information on all sorts of topics. Please check it out at cllsociety.org or just google CLL Society. It's a much better place to search info on cll than GOOGLE!!

[TobyBelch in reply to albie58]

Cll society is what led me here. So just thought I'd start with simple question. I have loads to choose from at the moment. But also have family members that will respond with lots of questions that I may not have thought so it's as much yo direct them to "trusted sources" rather than the pit of disinformation that the Internet can be at times

[stevesmith1964 in reply to albie58]

HiI took a different approach, diagnosed stage 4 at 56... haven't googled etc. But I do read posts on here. I don't know my FiSh results.... live a normal life as I did before.

[TobyBelch in reply to stevesmith1964]

That's oddly reassuring, thanks. I tried getting back in to running and couldn't get through wk6 of c25k and just felt like something wasn't right. Was waking up feeling like I'd gone back to half marathons. I've read full report now and some scary words, but with the docs explaining things, it shows just how dangerous a little knowledge can be as opposed to the 10-15 years of studying docs do.

[stevesmith1964 in reply to TobyBelch]

Hi, I keep busy as at 60 , I play 8 hrs of pickleball a week, plus I am a stay at home dad to my 7 and 5 yr olds.. who keep me extremely active. I have the attitude that I will see the youngest graduate university in 2043 ish.

[CLLerinOz Administrator]

Welcome, Toby.

You've found a very supportive and informative community here so if Dr Google led you here that's something good it's done for you. As for the CLL information you may have found through your Google searches, please don't take it to heart. Much of it is out of date, based on figures before targeted therapies for CLL became the norm.

Our pinned posts provide important information about how to get the most out of being a member of our community and about CLL itself so please take some time when you get a chance to familiarise yourself with some of the posts you'll find there. Included is a list of reliable resources. healthunlocked.com/cllsuppo...

Although your inquiry is specifically about sourcing information, I thought I'd take this opportunity to add a few other points, too, as you're new to our community and also recently diagnosed.

CLL impacts the immune system, making those with it more susceptible to infections so being newly diagnosed is a good time to do an audit of your vaccination status. One of our pinned posts will provide you with up to date information about which vaccines are recommended and which are not. healthunlocked.com/cllsuppo...

As you learn more about your own CLL, it's helpful if you can keep your profile updated to help members target any answers to questions you might have down the track. Thanks, already, for indicating where you're located.

You've posted an 'unlocked' post which will help others who may not be members to find your post and, therefore, our community, through an internet search. However, there is an option, which many take for privacy reasons, to lock posts. You can read more about that here: healthunlocked.com/cllsuppo...

Don't hesitate to get in touch any time to share your own CLL experience or to ask others for information about CLL in general or about their own experiences of it.

All the best

CLLerinOz

[TobyBelch in reply to CLLerinOz]

Thanks, vaccination status was my first query and actually have an appointment with my GP today to discuss general issues around diagnosis and next steps. I was intending making that high on the agenda.As I travel for work there have been a few "lurgeys" recently that are starting to make sense, and also why others affected have been OK after a day or 2, but taken me a week. Few years ago had the constitution of an ox and would never have sick time. Over last 18 - 24 months there have been a few instances where I've benefited from the work from home as would never have driven in to the office feeling as I have done.

And post Madrid headaches nothing to do with the measures in the bar, guessing a little bug can make itself known more effectively than a hungry yorkie.

[AussieNeil Partner Administrator]

Much of the information on Google is understandably, given the recent great advances in treatment, quite out of date. Keep in mind that to know 10 year survival times, first we need survival stats over that 10 year period, so these will always be at least 10 years old! So first check whether anything you find on Google is (ideally) dated no more than 5 years ago. Also, keep in mind that nearly all newly diagnosed folk enter watch and wait for a number of years. So it could typically be 5 years or more before treatment is required and who knows what advances will be seen by then!

In addition to the good reference albie58 suggested, this community maintains a pinned post section here: healthunlocked.com/cllsuppo...

A good place to start is healthunlocked.com/cllsuppo...

Neil

[Spark_Plug]

As this is the beginning, what has been already pointed to is perfect. You'll gain ground quickly. Then, as you follow the posts that interest you the most, take note of the sources of published studies.

You'll start to develop a keen eye for what is credible. Pay attention to website addresses, a dot com is going to have more possible pitfalls because there is a financial incentive inherent (not that it's all bad but verifying it is very important), dot org may be better (do remember bias though), dot gov tends to be in my opinion best bang for your buck there's usually verifiable references that can be checked. And government accountability is often the goal of the resulting studies.

This is just a rough observation, but it may help in this new journey. Remember though, it's like sitting down to eat roasted elephant, it must be done one bite at a time. 🙂

[DoriZett]

CLLSociety.org is a physician curated nonprofit with special tabs for newly diagnosed folks so you can ramp up your knowledge gradually and not become overwhelmed. Also many virtual support groups where you learn a lot from others experiences. I see others have recommended this organization to you. I find educating myself helps me interact more effectively with my oncologist and helps to reduce anxiety when you understand the ebb and flow of this disease. Many effective treatments in the last ten years. All the best to you.

[TobyBelch]

Now there's a Christmas dinner with a difference. Roast elephant. What sides are you doing with that?

[claree_ford]

Just a passing thought. Consider carefully who needs to be told. You may well (and I hope you do) have years of nothing much happening. Just kind of bear in mind that you can't untell people.

[NMgal in reply to claree_ford]

So very true claree_ford,I am still careful about who I share this personal info with.

Lorna

[TobyBelch]

Good idea, and just keeping to close family and colleagues.I'm a pretty open book kind of person these days with both physical and mental health.

Last couple of months while testing has been going on has been more stressful than getting the confirmation.

Just lucky that the Cure decided to release a brilliant album the day after I got the preliminary diagnosis. That's been a warm comforting hug.

But now got to finish rebuilding the kitchen before everyone arrives for Christmas at the weekend.

[AndyT]

Hi Toby - I’m recently diagnosed too and understand the pitfalls of googling too many random sources of information!

CLL Support, Blood Cancer UK and Leukaemia Care all have useful and reliable information on their websites and there are good video presentations from previous CLL Support patient events, which I’ve found helpful in informing myself and my family about CLL. cllsupport.org.uk/news-even...

[TobyBelch]

Thanks, I need to start working through those. Got to love a PowerPoint presentation. I like the little animations as they will be easy for my kids (in their 20's) to understand.

[mrsjsmith]

Toby ( one of my favourite plays )

Lots of sensible comments here and CLL support have advice on vaccines, and your GP may want to check with your consultant before proceeding and keep a note of the order the pneumonia vaccine is given. Some practice nurses might not agree as mine did.

Only other suggestion that I don’t think has been covered is try to bring another person with you to any appointments discussing treatment and get them to keep notes and raise any questions you forget to ask.

Now enjoy Christmas ( kitchen permitting ) and forget you have CLL.

Colette

[TobyBelch in reply to mrsjsmith]

Was torn between Toby and Andrew to be honest. Twelfth doesn't get the love it deserves. I do benefit from an English teacher that brought it to life during o levels. Of the versions I've seen, I doubt there will be a better malvolio than Ade Edmondson. Unfortunately my partner is a teacher so can only come during holidays but I take lots of notes and get quizzed (then told to stop dwelling on things and get on with stuff, she's a keeper).

[mrsjsmith in reply to TobyBelch]

I might disagree because Simon Russell Beale was also fabulous in that part.

You sound fairly well organised already and you may be one of the many that never need treatment.

[ncosto]

I have found the CLL Society to be a Life Line. As I have a very rare form of CLL - in the Central Nervous System (and my brain), the Society was able to match me with someone who has experienced the disease as I am experiencing it. He introduced me to another person with the same issue and as they are way ahead of me in treatment, I rely on their input and have provided my team of doctors with the names of their doctors (in other States) who have experience in treating this form of CLL. I have also been invited to join 2 CLL Society support groups from which I have learned much more than my doctors seems to know. I attend the monthly meetings and all of the webinars that the CLL Society offers on line. And by using the CLL Society's 'CLL Doctor locator" I have had 2 consultations with cutting edge CLL experts

[spi3]

Welcome and I too was like you 3 years ago frightened and shaken...until I found this wonderful community ❤️ that I call my extended family - I highly suggest to get yourself a CLL Dr too.

[NMgal]

Hi TobyBelch,Welcome! When the Dr. told me about the CLL, my question was now what??

Unlike other cancer where docs would fly into action, we wait as you know. It helped me alot having this group to refer too. So much knowledge here. Best of luck

[dmmck]

CLL Society is a great source of information. Be sure to download their CLL glossary which explains many relevant terms and acronyms.

[kablea]

Keep that running going as it will be a lifeline. I am 6 years on W & W since being diagnosed at 72. Still running 20 miles a week and the CLL no worse than 6 years ago. Any displacement is good.

[DylanPxxx]

my advice is to be kind to yourself. It is a traumatic experience getting a cancer diagnosis. It just is. Cut yourself some slack. You do not have to be strong all the time. You are allowed to be human. You are allowed to be freaked out, sad, angry, hopeless. Try not to dwell in those emotions but don’t deny them either. The very best advice I received when I got my diagnosis was not to be afraid to say the word cancer, or to talk about it. People will likely surprise you with their compassion. Give them a chance to display their caring for you because in this case, you definitely deserve it.