Did anyone else see this on the BBC today? - CLL Support

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Did anyone else see this on the BBC today?

MattGGibson profile image
7 Replies

Hello everyone

BBC has this piece on their website today . Very interesting for all of us I think you will agree.

bbc.co.uk/news/amp/stories-...

5 months since my FCR and my bloods were back to being poor last week - neutropenia again which has set me back and I think may lead to a re-evaluation of the work life balance I am (not) managing to achieve at the moment.

Keep well everyone

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MattGGibson profile image
MattGGibson
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7 Replies
Bethan49 profile image
Bethan49

Yes I saw... A good listen and very encouraging.

Late onset neutropenia is common and can be a positive that chemo has been effective.search it.. I have links somewhere..

Exactly the same happened to me last year.. 5 months post Fcr.. A little admission....

Take care. Keep positive.. Find a balance.. Live x

Ps. I'm also a teacher. Didn't go back to work for a good while.. Be kind to yourself

Newdawn profile image
NewdawnAdministrator

I’m really sorry to hear your bloods are starting to slip back Matt and can fully appreciate the impact neutropenia must be having on your work commitments. It’s hard when CLL starts to impact on what we enjoy and want to do.

That article has generated a lot of interest on the site today with numerous postings. It’s good to hear CLL being high profile and discussed with positivity.

Sending best wishes and just wondering if you’re happy leaving your post unrestricted in view of your photo and actual name.

Newdawn

Cmac70 profile image
Cmac70

Hi Matt, I read the article today and it seemed very encouraging.

I just read your posts for the first time, I was also diagnosed at age 45 two years ago. I am currently on watch and wait stage 2. Your cll must uave been much more advanced than mine to start treatment right away. Sorry to hear your blood test came back poor. Wishing you the best from Canada.

MattGGibson profile image
MattGGibson in reply to Cmac70

Thanks - another test booked for later in the week so hope there will have been an improvement by then!

Ricardo39 profile image
Ricardo39

Hi Matt an excellent piece am sure it will really hearten our friends who are much younger than me and may indeed require treatment. Thanks for this.

Stay safe. Richard

Elliot43 profile image
Elliot43

Matt neutrophils seem to stay low for a while after chemo... Took a year or so for mine to recover... Just give it time and be very careful with hygiene. Try and stay clear of people with colds flu etc or anything else remotely infectious..

Read that article here in WA. know the Uni well. My son Matt & husband were graduates.

All the very best for your continuing recovery.

Sheila in Freo oz

holly2 profile image
holly2

Hello Matt, it is interesting that all the articles appear to discuss remission from CLL but, like you and I have experienced, what kind of quality of remission?

After 5 FCR treatments and one extra of just R, which finished for me last July, my blood results were in fact worse than before the treatment started. And today I need regular blood transfusions to get my Hb up to an acceptable level, my latest platelets were 60 (up from 47 and 54) and white blood count is very low. However, I have been having low dose of GCSF injections since December and this works really well for me, my neutrophils have shot up from 0.2 to 5 ! I am reducing the injections to one a week now to see what happens. So I still have to be very careful about steering clear from viruses where my immunity remains low.

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