Support for CLL Patients

[Jm954]

This HU site, where we share information, experiences and friendship is a massive support for many and with Christmas approaching and many of us shielding to a greater or lesser extent, I thought it might be a good time to look at other support available for CLL patients and caregivers.

In the UK, CLL Support is the only CLL focused charity and they offer a buddy scheme, someone to support and chat with. In pre covid times they arrange conferences where patients can get together and hear from CLL experts at no cost. For younger patients, under 60, there is a group specifically to cater for their needs. The website has tips from a mental health counsellor to help you to look after your mental health, including over thinking and anxiety, and can be found here: cllsupport.org.uk/informati...

In addition to the above the CLL Support charity site has Support ACT which a collection of emotional wellbeing exercises based on Acceptance and Commitment Therapy (ACT). Support ACT is a toolbox from which you can select the appropriate tool for your given emotional circumstances. Like all tools, the more you use them the more adept you become. You can access information about it here: cllsupport-act.org.uk and the exercises are here: cllsupport-act.org.uk/let-u... with the exercises along the bar at the top of the page.

The website, exercises and the CLL Support on line Webinars covering a wide range of CLL related topics can be accessed by anyone, whatever country you are in.

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Leukaemia Care is another UK charity that supports patients with all types of leukaemia. Their website is here: leukaemiacare.org.uk

You can chat to a health professional on this number 08088 010 444 or on line. They have an extensive range of support materials on line that can be found here: leukaemiacare.org.uk/suppor...

They also offer 1-1 buddy support: leukaemiacare.org.uk/suppor...

Recognising that emotional support is patchy at best Leukaemia Care also offer financial support through the provision of grants which provide access to private counselling services, so that everyone who has been affected by a blood cancer diagnosis can get emotional and psychological support. You can find the information here: leukaemiacare.org.uk/suppor...

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In the USA the CLL Society is a non profit organisation led by Dr Brian Koffman (a member of this site bkoffman ) cllsociety.org and have face-to-face Patient Support Groups focused specifically on CLL led by volunteers in regions/cities where there is interest. These are suitable for both patients are newly diagnosed or those that have lived with CLL for years. cllsociety.org/cll-specific... lankisterguy often post here about CLL Society forthcoming meetings and events.

The website site has a lot of USA focussed information to support patients regarding diagnosis, treatment, trials, financials and conference coverage. Importantly for USA members it offers the CLL Society Expert Access Programme which offers patients access to CLL expertise through a HIPAA compliant online video consultation. Information about that here: cllsociety.org/cll-society-...

Of course this isn't everything but it's a guide to CLL focussed information and support that we hope you will find helpful as and when you need it. Support like this can offer hope to CLL patients and we all need some of that, especially in these difficult times.

With best wishes for a Happy Christmas to everyone

Jackie

[MistyMountainHop]

Very thoughtful of you. Thank you.

[Psmithuk]

A timely reminder, thanks Jackie.Cx

[UK-Sparky]

Great job Jackie. Happy Christmas to uou and all the administrators

[cajunjeff]

Thanks Jackie. I believe Cll support, its founders and its volunteer workers are directly responsible for improving the quality of life and , indeed, extending the life expectancy of the many members on here. Its a great resource for people to learn about cll and their treatment options.

A quote from Sin Tzu in the art of war comes to mind:

“If you know the enemy and know yourself, you need not fear the result of a hundred battles. If you know yourself but not the enemy, for every victory gained you will also suffer a defeat. If you know neither the enemy nor yourself, you will succumb in every battle.”

Cll is the enemy. The information we get from cll support helps us know exactly what our cll is. Taking the mystery out of it makes it easier to fight.

My bet is that if you did a clinical trial with 500 random members of cll support and compared them with 500 people with cll who did not gather knowledge about their cll, that the cll support group would have a big survival advantage. People on here tend to be more proactive about their disease.

[mrsjsmith in reply to cajunjeff]

So true Jeff,

I was talking to one of my lovely GP’s today about a non CLL topic, but then because I was having a bad day I was slightly tearful and she asked why I didn’t think I had any antibodies !

1. On Ibrutinib, 2. Low iG levels and 3. On prophylactic antibiotics as shown by the large Birmingham study as not great odds. And if I was a male I could have shouted full house !

Colette x

[Ghounds]

Thank you Jackie. Wishing you all a Happy Christmas.

[mrsjsmith]

Thank you Jackie,

We would all be lost without all these amazing sources of information and friendship.

Colette x

[DebKat999 in reply to mrsjsmith]

You really said a mouthful of truth there Colette, I for sure know that I would be!

Debbie x

[mrsjsmith in reply to DebKat999]

Thank you hun,

Now heading for the sofa with 🐈🍷🐈 🍷 and a slight headache, but in the words of Scarlett ‘ tomorrow is another day’

Colette x

[DebKat999 in reply to mrsjsmith]

I hope your headache goes away fast Colette, and yes, tomorrow is another day. 🙂

Debbie x

[blowinginthewind]

Thank you so much for this, I didnt know much about the CLL site, and the mental health ACT is probably just what I need right now 🤗🤗🤗 thanks again xxxx

[studebaker]

THANK YOU Jackie for all your help 🤗. I for one know for a fact, that without this CLL site, I wouldn’t be here. I am so thankful to all of the administration, volunteers and other members for support, education, understanding and helping us to find a way through this complicated mazes with CLL/SLL.

THANK YOU AND VERY MERRY CHRISTMAS TO ALL 🎄🎅🏻🎁🥂

Dana

[NooNoo14]

Thanks Jackie. Happy Christmas to you and everyone on here.

Nettyx

[Bethro]

Thanks for all this info, so helpful! I'm wondering if anyone knows of a U60 group in the US and could provide a link. TIA!

[Jm954 Administrator in reply to Bethro]

lankisterguy is almost certainly the best person who might know this. I've tagged him and hopefully he'll respond.

[lankisterguy Volunteer in reply to Bethro]

Hi Bethro,

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The CLL Society has about 30 support groups that originally met in person, so organized geographically see the map here: cllsociety.org/cll-specific...

Since we are all meeting by ZOOM, the locations are no longer important, and you can pick by schedule here: cllsociety.org/events/2022-01/

The group I help facilitate meets next on Sunday afternoon Jan 9 and we have attendees from London to Phoenix to Florida.

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The Society HQ has been considering creating special interest virtual groups, and if a Under 60 group is important to you, please email [e-mail] and they can help, see:

cllsociety.org/cll-specific...

SNIP: When interest is expressed, we create a survey to gather contact information and preferences regarding days/times/frequency of meetings. It can take several months to get enough patients and caregivers signed up, so please help by spreading the word in your local community. .... Once we have enough people interested, at least one identified facilitator and a location to meet, we will provide training for the facilitator(s) and ongoing mentoring to get the group started and keep it going.

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Len

[Jm954 Administrator in reply to lankisterguy]

Thanks Len, very helpful to know

[Bethro in reply to lankisterguy]

Thanks Jm954 for pointing me in the right direction and thank you lankisterguy for the info and links. I will dig in to it a little deeper when I have the time. I also need to update my profile to get better use of this site. Thanks again everyone!

[RogerPinner]

Jackie, thanks for this reminder and all your advice throughout the last year, (and before). I have to agree with CajanJeff's wise words "My bet is that if you did a clinical trial with 500 random members of CLL support and compared them with 500 people with CLL who did not gather knowledge about their CLL, that the CLL support group would have a big survival advantage. People on here tend to be more proactive about their disease", and that wouldn't happen without people like you.

Roger