Lab Visit

[retired46]

Hi all,

For those of you who remember me say I was going to visit the Lab!

I went this week - what a fantastic encouraging view I had on the research being done in the Southampton Research Department , work and research results which are shared backwards and forwards between Bournemouth, Canada, America to name a few.

The research they touched on with me involves Analysing B cells and ways they become malignant.

Insight into the behaviour of mature B cells neoplasms - functions of tumour B cell receptor and imunoglobin.

B cell and T cell signalling and how they regulate pathways in B and T cell Leukaemia and Lymphoma.

How Molecular mechanisms control proliferation and survival in malignant lymphocytes and research into developing novel compounds to interfere with key cancer promoting pathways.

Genome sequencing and DNA in CLL.

Focus on developing greater understanding of the role of B cell receptor signalling and the lymphnode microenvironment in CLL and other Lymphnoid malignancies.

The effects of new drugs in CLL.

The pathogenesis of human follocular lymphoma and some novel findings were reported on this in 2010 and on signalling pathways operating in normal and malignant human B cells with new significant findings already published.

Immunoflourescence and DNA.

The CLL group meeting I was privileged to be invited to was around 20-25 people consisting of 5 Prominent Professors - Drs - Assistants . They explained their work to me and wanted to know about my journey from a patients perspective, as I have always kept a diary they had the nitty gritty answers.

They all said it was an advantage hearing it from my perspective.

It gives great hope to the future that treatment solutions, technology use and knowledge being gathered between so many passionate professionals has really raced forward over the past few years with CLL and I felt these are exciting times for us.

Sorry if this is a long post but I want people to feel positive like me about the research being done.

Kind regards and hope you are all keeping well.

I am on my 4th month of Ibtutinib and bloods seem to be doing ok and I am on a 3 month appointment now so fingers crossed.

[Kwenda]

Pleased to hear that you are doing well on Ibrutinib, and VERY happy to hear about the research being done for ALL of us.

The quite dramatic advances that I have seen since I was first diagnosed back in 2005 gives us all hope for yet further advances.

It is additionally good to see that the work first started by Prof Terry Hamblin at these laboratories continues so well.

See Terry’s blog, which is still full of good information and still available.

Started Monday, December 12, 2005 until Sunday, January 08, 2012

‘ Mutations of Mortality.’

mutated-unmuated.blogspot.c...

Dick

[retired46 in reply to Kwenda]

Hiya,

I was amazed at just how high profile the research, knowledge and sharing that is going on as become - I will certainly have a look at the blog.

Professor Fredo Stevenson was just one of them at the meeting and she has pioneered so much with many accolades having been awarded to her- arent we fortunate to have their knowledge behind us.

A colleague of my consultant her name is (Georgio Chiodon) was also there and she has written a paper on Ibrutinib Therapy Releases which is downloadable .

I agree it is so positive when you see his work carried on, and the changes you have seen yourself must be phenominal.

I wish you well.

[MsLockYourPosts Passed Volunteer in reply to Kwenda]

I learned so much from Dr. Hamblin! He is missed.

[DisneyMom]

Thank you for sharing this.

As a new kid around here, and at only 39 years old, I know treatment will be in my future. It's nice to hear that there is so much promise.

Carol 🇨🇦

[retired46 in reply to DisneyMom]

Absolutely, it is so encouraging

Regards

[Newdawn Administrator]

Very informative feedback retired and great that you could give valuable feedback from a patient’s perspective. That must really give them human focus to their fantastic endeavours.

Great to hear the Ibrutinib is doing it’s job too!

Newdawn

[Jm954 Administrator in reply to Newdawn]

That human perspective is so true Newdawn.

When I was lucky enough to visit the labs at Birmingham University the charity emphasised how valuable our visit was to the scientists doing the research, as much as it was for us as fundraisers and ambassadors, for that very reason. They were very interested to hear of our experience of CLL and how it had affected us.

Jackie

[retired46 in reply to Newdawn]

So far so good with Ibrutinib 👍

I was so encouraged by the visit and if Im honest surprised at the overwhelming response I got from them when answering their questions from a patients perspective! I felt privileged.

They are starting a group forum at the hospital in July -(which I shared on here) and I shall certainly be going along to take part and to meet likeminded people, I shall share any information on here afterwards.

Kind regards.

[Peggy4]

Lovely news on both counts, thank you for sharing.

Peggy 😀

[retired46]

I said I felt privileged to be able to meet them And they replied it was so informative to hear it from the patients view and as I had had many replies from this forum, I felt I needed to try and represent some of our views and concerns - NOT just mine.

Regards

Their reply to my thankyou email is as follows:-

It is a privilege for all of us to have so generous people like you who help our research with the endeavour to find a better cure and to improve care for CLL. Your help (your own blood) is an invaluable resource for essential research. The whole team were really enthusiast for your visit!

We really owe you and thanks again for visiting!

[DMary]

Wow! Such an encouraging post. Thank you.

[Jm954 Administrator]

WOW!!

[retired46 in reply to Jm954]

Hiya,

I was so encouraged by the progress in research - 👍

[Smakwater]

retired46,

Glad you could make it and share this positive glimpse of research insights.

These people are truly brilliant, and dedicated to finding a cure for us.

Thank You R46

JM

[retired46 in reply to Smakwater]

Absolutely 👍

[Fran57]

Hi. Great to hear all the positive feedback from down the road in Southampton ! Thanks.

Fran 😉