CLL Ireland's patient information day .

[Irishcll]

We had our information day for patients and their families yesterday in Dublin and we received fantastic feed back. It was wonderful to meet so many patients with some newly diagnosed and worried.

We hope they are a little less worried after the great talks from Prof Hillmen and Prof Thornton.

The future is bright for patients but access to the newer treatments continue to be an issue.

A big thanks to Professor Hillmen for giving his time.

Michael

[Emerfly]

An important, informative day and a rare opportunity to meet other CLLers. Thank you so much Michael and Jan for your dedication to CLL Ireland.

[Irishcll in reply to Emerfly]

Hi Emerfly,

It was lovely to meet you in person and thanks for your kind words and support

Stay connected as we are stronger together.

Talk soon

Michael and Jan

[Ei47 in reply to Irishcll]

So sorry to have missed the day due to transport problem. Is there anywhere I can receive information given by your speakers on the day?

Eileen

[Irishcll in reply to Ei47]

Hi Eileen

Sorry you could not attend.

We have recorded the speakers and will post them very soon.

I hope you are doing ok

Michael

[Ei47 in reply to Irishcll]

Thank you for replying Michael. I look forward to that information. I have just finished 6 months on chemo, feeling a lot better. Will get a prognosis in 4 weeks after another BMB and CT scan.🤞 Eileen

[Irishcll in reply to Ei47]

Hi Eileen

Glad to hear you are at the end of treatment and are feeling better.

I hope you get good news at your appointment.

Keep an eye on our Facebook and website for the recordings .

Kind regards

Michael

[Emerfly]

Hi Michael and Jan , are there any plans to set up a support group ? I felt meeting other CLL sufferers was so helpful . Kind regards . Emer

[Irishcll in reply to Emerfly]

Hi Emer,

It's in our plans to have smaller support meetings in the future. You are not the only one to ask.

I will let you know .

Michael

[Emerfly]

Thank you Michael , I would be happy to help out with that at a later date . My 92 yr old mother is unwell and I’m very involved with her care so it’s difficult for me to commit to anything at the moment. I live in Ranelagh so if anyone from around this area contacts you and is anxious to meet other CLL patients I would be happy to meet for coffee ...who knows it could lead to a small local support group . I hope you and Jan are well and if you feel there is anything I can do without having to make a serious commitment please don’t hesitate to ask. Kind regards. Emer

[Irishcll in reply to Emerfly]

Thanks Emer for the offer and sorry your mum is unwell. It's difficult to juggle all that life can throw at us.

We will be meeting the team in a week or so and this will be on the agenda.

Don't hesitate if you need to talk I can put Jan in touch.

We found watch and wait very difficult with the uncertainty and meeting other patients helped.

Have you connected to the CLL groups on Facebook. They are private and a great support. I can get Jan to send the links.

We met patients who had never met another CLL patient at the information day and it's important part of the journey.

Prof. Thornton said in an interview that "informed patients have better outcomes" I feel this is true.

Talk soon

Michael

[Irishcll in reply to Emerfly]

youtu.be/yvf0x2GZ7Ao(Not working as expected?)