Poole Conference 14 March 2024

[21Bedlam21]

Theme

Navigating Treatment Pathways beyond Chemotherapy.

I am on watch and wait and fairly new to this site.

I attended the conference to get a better insight into treatments available. As we all know we are all different and different treatments suit different people.

I found it very informative although some of it went over my head. I’m not a Consultant or Doctor so a lot of the terms used I was understandably not sure about.

A patient gave her experiences over her journey with CLL. I found it heartfelt and inspiring. She talked from her heart and I found her strength unmeasurable.

Professor Francesco Forconi took to the stage and his explanation of how things were developing were very interesting.

We had input from a CNS she talked about active monitoring what we call watch and wait, and beginning treatment.

Also Dr Renata Walewska took to the stage explaining how they defined when to start treatment.

We had a question and answer session.

Because it’s CLL support 20th Anniversary we had two patients who were undertaking challenges. One is walking from Lands end to John o Groats the other is cycling in the opposite direction and hope to meet up in the middle somewhere.

Dr Helen McCarthy finished the lectures with how to prepare yourself for treatment with targeted therapies and navigating cardiovascular and infective risk whilst on treatment.

Q&A followed.

The very end of the day we were divided up into newly diagnosed, watch and wait and on treatment. Discussions took place.

One of the main subjects was on how difficult it is to get travel insurance. We want to live our lives but are prevented by not being able to get travel Insurance. As soon as you say you’re having regular blood tests companies are not interested in insurance to cover you.

This Conference was taped and is online.

[gardening-girl]

21Bedlam21, Thanks for your terrific report on the 2024 Poole Conference! I'm glad that you were able to attend. It looks like the video has not yet been posted, but my guess is that it should be posted soon at this link: cllsupport.org.uk/next-webi...

[21Bedlam21 in reply to gardening-girl]

Thank you. I was asked by another member to post about the Conference. It’s difficult when you’re in watch and wait. Not knowing what to expect next. Some people there had been in Watch and Wait for years without treatment. As I said we are all different .

[Walkingtall62]

Thanks for posting. Very informative of what happens in the back ground.

[21Bedlam21 in reply to Walkingtall62]

Thank you. View it online soon.

[Jm954 Administrator]

Great report

[Adlucy]

Thank you very much for posting a report of the Conference. I would have liked to attend but couldn't unfortunately.

[21Bedlam21 in reply to Adlucy]

It was very interesting. It will be online soon.

[SERVrider]

I tried logging into the conference but the system wouldn't let me and just went blank. I'll look forward to watching the recording. As for travel insurance, I tried Staysure, SAGA, and a couple of others and they would cover me but for about £500 for a week in May in la belle France. I got cover with Emerald Cover through Insurancewith for £125. A fairly straightforward questionnaire to fill in. Of course, they might be a nightmare if I have to make a claim. Obviously I have my EHIC card as well just in case. I'm on Acalabrutinib so "in treatment" and also have Type 2 diabetes (for which they asked more questions than they did for the CLL).

[21Bedlam21 in reply to SERVrider]

Thank you that was helpful.

[Mojave]

Encouragement, I have been on watch and wait since 2010 and have had treatment. I attended many good and informative sessions. I realize we are all different. But my suggestion to you is to stay positive. You rule CLL. Dont let it consume and rule you. All the best in your journey. Jae

[21Bedlam21 in reply to Mojave]

Thank you. I appreciate your encouragement.

[Floxxy]

I attended this and it was excellent. It was so good to chat to others going on the same journey. Great venue and very well run. Many thanks to CLL Support.

[21Bedlam21 in reply to Floxxy]

I agree, it was so good to meet people who are on the same journey.