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CML Birmingham Support Group

Hi everyone. quick introduction, I have been a watcher for a few years now, but first post. I have been on Imatinib for 5 years doing really rather well with some nice low numbers, with my family and work keeping me busy ! I also am a member of a few of Facebook groups which I find really useful, but as UK based use the CML UK there loads.

I am posting as seen Nimbus2 post about a Birmingham meeting. The Facebook group has a link to the meeting as well and some info. To recap; we will be joined by Joanne Mason, Clinical Scientist in Birmingham QE, she is talking about the work the genetics lab does and how PCr tests are done, international standard results and answering questions from the floor, 2 weeks off and so the post seems good timing from Nimbus2. I am looking forward to it and sure it will be really interesting. Details are :

The CML Birmingham Support Group

The CML UK Facebook group / page along with Leukaemia Care would like to invite you to the next meeting of the CML Birmingham Support Group.
Date: 11th August 2018 Time: 10.30am – 12.30pm

All are welcome at the meeting and you are invited to bring friends, family and careers who may find it useful. Please let us know if you would like to attend this meeting, you can add a note on Facebook CML UK or email support@leukaemiacare.org.uk.
We hope you can come along and we look forward to seeing you there.

Venue: Novotel Birmingham Hotel, 70 Broad Street, Birmingham. B1 2HT.      Thanks  Rose

Thank you, Rose, for posting here.

I am not really a Facebook sort of person, but I did join solely to use the CML forum. Unfortunately, Facebook blocked my account while I was posting a few days ago. Facebook requested a photograph which they said that they would review and then delete immediately. The outcome is that they have decided to "disable" my account completely. Goodness knows what I did wrong. Anyway, this is the better forum for me.

I am going to do my very best to attend all of the Birmingham Group meetings. I am on a steep learning curve since I was only diagnosed seven days ago. Now that I have a beginner's understanding of how CML works, I am far more relaxed about the diagnosis.

Regards, Stephen (Nimbus)

 

Hi Stephen,

The CML-UK Facebook and us here on CML Support work closely together. I am a moderator on that group, and Nigel who started that group is one of the Trustees of CML Support.

Those meetings are organised by Leukaemia Care, and some of the people on CML-UK are involved with them so you’ll see posts about it there.

Both the Facebook group and this forum are great places for patients ... some people prefer the Facebook group which is a little more “fast moving” and this group is a bit more considered. It really comes down to what suits you best. 

7 days is no time at all. Lots to learn, but it sounds like you are doing a great job of soaking it all up. In my experience learning about CML in as much detail as you can understand is the single most important thing you can do to take control of your health. It allows you to know what is happening to you and have quality conversations with your clinician.

David.

Hi all. Thanks for the post, and the details of the meeting, and the Facebook group, I look forward to seeing you there in a couple of weeks.

As David mentioned CML support here, and the Facebook group ( it is not just for UK patients, all are welcome, although mainly we are UK members as the NHS is very different to other countries for access to treatment, and time from results etc ) we very much work hand in hand as the two groups as we are both either trustee's or moderators for both.

Please feel free to try to join Facebook again, and then the group, as David mentions they both have there places, and merits in working to support CML patients with information, or help.

Thank you, Nigel.

I sent Facebook an image of my passport certified by my solicitor and they then let me in again.

Provided that I do not have a "down day", I will attend the meeting on 11 August. It is information that helps me get into to this.

Oddly, I had not felt ill at all in the lead up to diagnosis and during my first seven Imatinib-days. Then I gave into Cyclizine Hydrochloride yesterday and felt really rough. I am cannot be sure whether the Cyclizine caused the issue or whether it was coincidental.

See you in Birmingham with luck.

Kind regards, Stephen

 

    

 

 

I am locked out of Facebook again ("unusual activity on your account") and near the point of giving up. I have sent then yet another photograph. Third attempt!

Hi Stephen, I had this same experience when signing up to Facebook. A right pain. Worth persisting though, eventually it did all work and I never had a log on issue since. I still don't quite know what the underlying problem was.

David.

Almost every little boy or girl can join Facebook without issue, but a 62-year-old man with CML is locked out. It is impossible to communicate with these people. They even have a copy of a solicitor certified copy of my passport. In the meantime, they spam me with messages that I cannot read.

Update 05 August: At last they have let me in.

 

Thank you for arranging Saturday's support group meeting.

Joanne Mason's excellent presentation answered many questions that were floating around in my mind. 

I took the advice of the participants to take my Imatinib with my evening meal and that has helped me tremendously.