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CLL Support Association
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Name for booklet/book

As I mentioned, I am in the beginning stages of preparing a booklet or book for mostly new patients with CLL. Besides the censored ones lol, what are some titles this very creative group might suggest. I don’t think “CRAP I have CLL” will fly. Ha Ha

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LoveCuresCLL

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I know I like my own handle. Lol!

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You are funny 😄

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I love it too and agree - but not sure that is the right name for a pamphlet of tips. I know a man I’d like to send that to though lol

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“CLL Survival Tips”. Or “How to Survive CLL and Thrive” “CLL Commandments to Live Life Longer”. “CLL Guidelines for Survival”. “Guide to CLL”. “CLL- Pitfalls and Warnings”

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Everything you always Wanted to Know About CLL But Were Afraid To Ask

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Beginners Guide to CL

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Like that one

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Thought of that lol

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Be a CLL warrior not a CLL worrier

Elkk au

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Good one

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A title in the form of a question. Questions engage attention... 🤔

Jig

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Thank you

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How to live with CLL and beyond.......

What the doctors don't tell you about CLL.......

Complete

Look at

Leukaemia

The nitty gritty of CLL........

These are just a few that flew into my head........lol

Anne

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WOW those are all good

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It won’t be a complete look at Leukemia from an oncologists standpoint-what do you thing about Beginners Look at Leukemia?

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I was using the letters CLL , but yeah, Beginners Look at Leukaemia is great.

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Or “Living with CLL -a Beginner’s Guide”

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I found this title on Amazon: "Living Well with CLL: A Practical Self Help Guide."

Appears to be out of print/ available only as Used paperback. No author given.

If you create your file as a Word document in landscape mode, you can easily have it made into 5.5 x 8.5 inch booklets by a local print shop. That format would allow you to expand and edit perhaps more readily than a pamphlet layout with pre-defined limits.

You might like to look at some of Toni Bernhard's books, such as "How to Be Sick," and "How to Live Well with Chronic Pain and Illness." Not about Leukemia--just to see what people read.

Great idea--good luck with your project!

Mary

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Great info - thanks

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“Concise

Look at Chronic Lymphocytic

Leukemia” still has the cool CLL which could be emphasized in artwork and I did not catch on first read.

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Some great ideas above. Your last suggestion is brief and to the point - looks good to me.

I have a feeling though, that there may already be other booklets about CLL, with similar names. When choosing a title, it's helpful to have one that is unique to your own subject matter, and stands out as a bit different.

A few years ago I was facing the same issue. I’d seen people being put on Watch and Wait and told that nothing would make any difference to their disease progression. Most found that very frustrating as it goes against human nature. We want to DO something to help ourselves, not sit back passively.

So I collected a lot of ideas of things we CAN DO, to help on our CLL journey. People gave more suggestions, and the article grew very long. It became 3 separate posts, then later I condensed it back to one. First I called it "Coping strategies for living better with CLL.", then "Things we can do to improve our CLL journey... "

One of the hardest things was deciding what to leave out, as there was so much that could have been included, but I wanted to keep it simple, specially for those on Watch and Wait, and not include detailed medical science or anything about treatments (which were changing all the time).

Anyway, that's another story. Going back to your booklet, what makes it distinctive is that you're writing from your own personal experience as a patient, and as you said in your first post, it's about what you wish you had known. So, how about calling it something like "Things I wish I'd known about CLL".

Having said that, I think the simple “Living with CLL -a Beginner’s Guide” probably gets the meaning over in a very clear, punchy way.

Enjoy writing it. I'm sure you'll find it very satisfying, but probably a lot more work than you first imagined!

Have fun and thanks for all your work on this.

Paula

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Thank you Paula - love your ideas. Would love to see yours too. I will send you PM with my email address. Trying to decide on format - printed folder or preferred actual book. Any suggestions

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‘ILL with CLL?’

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"Living well with CLL"

"Life is swell despite CLL"

"Here's intel on CLL'

"No worries about white blood cells, I'm having some more zinfandels

" I'm still alive" :)

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Love them all

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You are hilarious... Zinfandel to the rescue!

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Livin La Vida Leukaemia or just La Vida Loca which translates to the crazy life in English..

Stuart

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Conversation with your blood 😝

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Lol - unless you are a vampire lol

Like it

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Patient student Advocate

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the crud in my blood handbook

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LOL Great!

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Hi CLLmoxie,

I've done some publishing and many interviews, ghostwriting for Authors etc...

Even though it is a super long 'name' it would be good to use Chronic Lymphocytic Leukemia in the title- as many won't know what 'CLL' is...funny I just said "CLL" to my mom and she said, "what's that! lol"

I like 81ue's suggestion of

Living well with Chronic Lymphocytic Leukemia

or maybe-

Chronic Lymphocytic Leukemia New Options for Patients

A Patients Guide to Living with Chronic Lymphocytic Leukemia

Let me know if there's anything that you need help with- be happy to help if I can.

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Sending you a PM

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CLL: You Can Live Longer!

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CLL: What They Forget to Tell You. CLL Essential Survivors Guide.

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Secrets of CLL or CLL Secrets or The Secret Survival Guide to CLL

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You could write it from your perspective like a journal, and call it,

"One Woman's journey through CLL..... "

You could tell your story and as you go through it, you could put in relevant things you wish you had known at that point of the journey that would have helped, highlight them so they stand out as useful information.

Give names of support services, explain some of jargon that leaves many of us confused, give a list of some commonly used abbreviations eg, IVIG, FCR.

Just a few ideas

Anne

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I like "Living with CLL, a beginner's guide."

You can always expand it in the subtitle with clarification - "things I wish I'd known..." etc.'

Are you planning to put it in print form? Good to keep in mind how quickly things are changing. Would you want to consider making it an online resource? That way you could include clickable links. If print, I would suggest starting with a format that's easy and relatively inexpensive to revise.

One of the things I found most difficult at diagnosis was not knowing what applied to me. I'm in Canada and tests I wanted to have weren't available here. We're behind in therapies too. You might want to consider saying which country you are writing from.

marcyh

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Thank you.I am in US but will have input from someone who knows the international CLL scene - we will talk about how to handle resources for those outside US - perhaps a chapter with links - I am not sure yet.

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