12 TIPS to get more out of this CLL Support fo... - CLL Support

CLL Support

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12 TIPS to get more out of this CLL Support forum - and help others do the same.

PaulaS profile image
23 Replies

We’re posting this again, especially for newcomers but also a reminder to those not-so-new.

Adjusting to a new forum can be confusing, so if you’re still reeling from your diagnosis, just write from your heart and read these tips later. We welcome everyone here, no matter how you express yourself. However, be aware that internet privacy is a major concern, so please make sure you read Section 12b before posting.

1) Choose your title carefully when you write a new post, so that people can easily see what it’s about. (This is a very busy forum and many people just read what catches their attention at a quick glance)

2) Use paragraph breaks frequently. Long unbroken texts are very off-putting and MUCH less likely to be read.

3) Complete your profile. If members know your nationality and details of your CLL history, they can respond to you more appropriately. Try to keep it updated as your situation changes. Use this link to access your profile. healthunlocked.com/profile/... You can access the profiles of others too, by clicking on their avatar pictures. Having people’s background information is a big help when replying to them.

4) When responding to other posts, read the existing conversation before adding your own comments. Also check the dates – some posts are many years old and may no longer be relevant. This will help you avoid making responses that no longer fit the situation.

5) Don’t assume the writer of a post actually has CLL. Many people land on our site when they have one symptom that’s typically found in CLL, but it's actually due to something else.

6) Don’t be too dogmatic. Please share what has worked for you but don’t assume it will work for everyone. (There are many varieties of CLL and people often have other health issues that complicate the situation.)

7) Only give scientific explanations/medical details that are within your knowledge base. Give web references wherever possible, making sure they are from reputable sources. (Dr Mercola’s site is NOT a reputable source).

8) Check who you are replying to. To reply to the person who started the thread, write in the “Reply” box at the bottom of their original post, or in the “Reply” box at the end of all the responses.

To reply to someone who has already responded to the post, select the “Reply” that is at the bottom of their response, and write your message there. If you look above the box you’re replying in, you’ll see “Reply to xxxx”, so you can confirm who will be notified of your response. Starters of threads will get notifications of all replies in their thread. People responding will only get notifications of people who have replied to their response.

Sorry if that sounds a bit complicated, but sometimes people write responses to specific people in message boxes addressed to someone else and the intended recipient never sees it, as they don’t get a notification.

9) Remember this is an INTERNATIONAL group (though it is UK-based). Not everyone has the same medical system as you, with the same ability to choose doctors and treatments.

10) Avoid using too many abbreviations – explain what the letters stand for when you use them for the first time. (It's very off-putting for newcomers to be faced by strings of letters that they don't understand).

11) Show respect to others, even if we disagree with them. When in doubt, be kind… Many people have battles going on in their lives that we know nothing about.

You can report abusive/inappropriate posts by selecting “More v” under that post, then “report”. The admin/volunteer team may decide that content should be edited or deleted, to protect the group. For a detailed description of the CLLSA Health Unlocked guidelines, see cllsupport.org.uk/cll-suppo...

12) Your PRIVACY and SECURITY are very important

a) Choose your username and image/avatar with care. You may not want one that easily reveals your identity. You can change your name later, by following instructions in this link. support.healthunlocked.com/... Note that you can only change your name twice!

b) Posting securely - the following link describes the process. support.healthunlocked.com/... When creating a post, remember that the default setting for privacy is "everyone" - which includes the whole internet community. To “lock” your post and restrict it to this CLL community, choose “Only community members” in answer to the question “Who can see my post?”

All replies to a post are controlled by the privacy set by the person who wrote the original post. So if you leave your post “unlocked”, every reply you get in that thread will be accessible to internet searches. This will deter many people from joining the conversation, and you will get fewer responses. When replying to someone else, check that their original post is locked before you say anything too personal. Remember that a reply to an unlocked post may be found in Google searches and may even turn up in social media.

c) Changing privacy status on your existing post. If you accepted the default “unlocked” setting for your original post, you might later decide to change it, so more people will feel free to respond. To do that: (i) Go to the end of your post— select "More v" then "edit" from the dropdown menu. (ii) Scroll down to "Who can see my post" and select "Only community members" (iii) Close post by selecting "Post" at bottom left (iv) Check privacy symbol has appeared (little grey padlock)

Although we want to err on the side of caution when choosing privacy settings, if your post has no private personal information, no identifying photos, and you don't expect replies to contain personal information, consider leaving it in the default unlocked state. After all, you probably found our community from an internet search. :-)

d) Sharing private details (eg emails, phone numbers) on the main forum is not permitted. Such information can leave you vulnerable even on “locked” posts so it will be deleted. Instead you can use the private message system, also called “Chat”. support.healthunlocked.com/... Note that you can write to multiple recipients and create private friendship groups by adding usernames to the message page.


This is a joint post from Admins and Volunteers. We hope you’ve found it helpful :-) We've left it unlocked so that newly diagnosed potential members can find us. If you want to reply but don’t want your words to be read by non-members, you may wish to respond with a new “locked” post rather than replying to this post. (See point 12b)

For more detailed posting tips, see AussieNeil’s article healthunlocked.com/cllsuppo...

For more about security, see healthunlocked.com/cllsuppo...

23 Replies
Wroxham profile image

Thanks for the reminders Paula.x


Winsey profile image

Good Morning What does BR mean? I think it's an advanced stage of CLL.

Thank you.

PaulaS profile image
PaulaSVolunteer in reply to Winsey

Hi Winsey,

BR is a common abbreviation for Bendamustine and Rituximab. Bendamustine is a chemotherapy agent, Rituximab is a monoclonal antibody. The two are used in combination as a treatment for CLL, often for elderly patients or those who cannot tolerate FCR for other reasons. (FCR is Fludarabine, Cyclophosphamide and Rituximab).

I have never heard of the letters BR used as an advanced stage of CLL.

I'm not sure why you're asking about BR on this post - maybe you meant it for somewhere else?


Winsey profile image
Winsey in reply to PaulaS

Thanks Paula, I was reading a post yesterday from "justasheet1: where it was mentioned "my remission from BR" The headline is "My experience with Gazyva".

Thank you.

Peggy4 profile image

Thanks Paula .

Peggy 😀

Higsby profile image


Very good advice to all, including myself.


PaulaS profile image
PaulaSVolunteer in reply to Higsby

Hi Higsby,

I see that you found this forum just a couple of weeks ago. So, a warm welcome to you. :-)

Glad you appreciated this post, and found it so so soon after arriving here..

Wishing you well,


AussieNeil profile image

More to point 11 about showing respect to others - please don't hijack someone else's post.

Thread Hijacking

"When a person starts a posting on a message board, or forum, or Facebook, that others are able to comment on, that original posting and the comments on it are called a thread. A thread hijacking occurs when one or more individuals commenting on the original posting, go off topic, creating a separate conversation. This is rude, and bad internet etiquette. If people want to discuss a different topic, they should start their own thread."



Jacksc06 profile image

Thanks Paula.

Thanks for steering me to 12b. Time to change Settings

I access HU on my phone. Never seen or noticed any "who can see my post" choices.

PaulaS profile image

Hi John, the choice of "Who can see my post" only appears when you are starting a new post of your own. If you're replying to someone else's post, your reply will automatically take on the status of the original post.

So, if the original post has a little "lock" icon that appears to the right of the title when you open it, it can only fully be viewed by community members and your reply will also only be seen by community members. If the original post has no "lock" symbol, then any reply given to it will be accessible to anyone on the internet. Sadly there is no way you can make your replies "locked" if the original post is not locked.

I only use my phone to read HU posts, not to write them. I find it much easier to type on my desktop computer. But I think the principle is the same.

Sorry it's a bit complicated, especially for new members. You'll soon get the hang of it, but do remember if you want your reply to be for community only, you have to check the original post to see if it is "locked". If it is NOT locked and you really wanted to reply to that person, you can use the "chat" which is a personal messaging thing.

I hope this makes sense,


Thank you for all that additional info, Paula!

I just now saw the "Visibility" option, for the first time. I think it was down below the Send button and off my phone screen. I specifically went looking for it, thanks to you, or I never would have known it was there.

Thanks again for all your help! 😎

PaulaS profile image
PaulaSVolunteer in reply to

Glad you found it, John. :-) I wasn't sure how different it might be when you're doing stuff on phone rather than computer.

slsfn profile image

Dear Paula

I hope you are well.

Please forgive me for contacting you out of the blue - you sounded so kind and well informed from the posts I have read on Health Unlocked.

I know that you, like us, are in Sheffield, and I think I recall from one of your posts that you opted for CLL treatment elsewhere.

My husband’s CLL possibly came to the point of needing treatment2/3 yrs ago when Covid intervened. His consultant then unexpectedly retired at the start of this year without having put a treatment plan in place.

He is now under the care of a lovely , but new-to-CLL Registrar, and a new young Consultant who is now off sick ( with no indication of why or for how long)

Meanwhile the Registrar organised for my husband to start his treatment of choice (V&O), but when he went for his first Obinituzimab infusion on Thursday he reacted badly, and the infusion was stopped after 5 mins.

In the absence of a physician ( the day unit staff tried and failed for 3 hrs to find a doctor who could and advise on the next steps) they discharged him with the instruction to await an outpatient appointment.

We fear that the leadership and morale of the team at the Hallamshire may be poor and not at all helped by sickness, staff shortages and everything else that the NHS has to contend with. Nevertheless, we are feeling very isolated now.

I have tried unsuccessfully to contact Prof Peter Hillmen in Leeds in the hope that we could book a private Zoom appointment for some general advice but I now wonder if he has fully retired from clinical practice. I then applied for a remote appointment with Prof Adrian Bloor in Manchester, as a fall back. Fingers crossed one of them will reply next week.

My husband’ s morale has dropped through the floor, and yet he is reluctant to consider getting treatment elsewhere, in case he is “too ill to travel”. We do have family in both Leeds and Manchester, but there are young children and they will pose an infection risk.

Our plan, therefore is to try and get a second opinion from an expert via a private consultation, without informing his Sheffield team, (and therefore, unfortunately, with incomplete information to give them. )

We aren’t sure if there is a “shared care” option whereby he can have treatment in Sheffield together with a day trip for annual reviews in either Manchester or Leeds .

I would be so grateful to hear about your experiences and any advice you can give us, Paula

Thank you

Clare slsfn your surname has been edited out by Admin for your privacy and safety as you’re responding to an unlocked post

PaulaS profile image
PaulaSVolunteer in reply to slsfn

Dear Clare,

Thank you for writing - of course I don't mind you contacting me.

I'm so sorry to hear about your husband's situation. Sadly I can understand it all too well...

Hubby and I are about to join our church Zoom service but I'll reply to you later today, by chat message.

thinking of you,


slsfn profile image
slsfn in reply to PaulaS

Thank you Paula

mrsjsmith profile image
mrsjsmith in reply to slsfn


Sorry to hear of your husband’s awful experiences. If of any help a friend of mine on W&W recently moved house and went from the Marsden to St James Leeds and her experience was amazing.

Good luck


slsfn profile image
slsfn in reply to mrsjsmith

Thanks, Colette,

Clearly it’s not a good time to need hospital treatment and I hesitate to criticise the NHS when resources are so stretched.

However, I also know we have to self advocate, (whilst trying not to alienate anyone we may have to depend upon for care) Quite a balancing act

I can imagine the team is first rate at St James, with such an excellent man at the top for all those years.

Best wishes


mrsjsmith profile image
mrsjsmith in reply to slsfn

If of any help my friend saw Dr Talha. Munir. Just looked and Peter Hillman seems to still do private consultations at Nuffield in Leeds.

Good luck


slsfn profile image
slsfn in reply to mrsjsmith

Yes- I tried to get hold of Prof H through Leeds Nuffield, but when I eventually got to talk to someone I was told he no longer works there. She was helpful enough to give me a couple of contact numbers ( one another private healthcare company and one his NHS secretary) that they had on file for him so I have left messages there.

I can imagine he may now be concentrating on his research and bowing out of clinical work altogether.

I really appreciate your reply- many thanks- I’ll keep on trying, and if I get no replies I’ll have to think again!

PaulaS profile image
PaulaSVolunteer in reply to mrsjsmith

Colette, I also saw Dr Talha Munir many times when I was having treatment in Leeds. I'm very grateful for his excellent care.

When my spleen burst, it was Dr Munir who diagnosed it and acted very swiftly - probably saved my life. (Prof Hillmen was abroad at the time, at some International medical conference.)


mrsjsmith profile image
mrsjsmith in reply to PaulaS

That’s the impression I also got from my friend and she was so impressed with all the tests that were carried out, and given a choice of face to face or telephone appointments and his secretaries telephone number. I would probably have to send a carrier pigeon to mine 🤔


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