CLL progressing

YES I know the feeling...

BUT FIRST...  CLL is now a treatable disease....

At 62 you could take the drugs V and O,  OR there are now FOUR drugs called BTK's that are just simple pills to take either every 12 hours or 24 hours.

I am taking the BTK called Acalabrutinib and I am completely back to normal life, no symptoms at all.. No night sweats or anything.

My comments about your NHS consultant are not printable...  Clearly this person is not up to date, and you might look into changing to someone better, which you are allowed to do.  Try and get to a hospital that has a team working on all the different types of leukaemia's.

Some hospitals like Oxford or Southampton or Cardiff have true CLL specialists and researchers into our CLL, and they will be up to date with all the new drugs that are available.

If you would like to talk, either online or face to face check out HealthUnlocked and join the CLL community, or the CLLsupport Association which has meetings across the UK where you can listen to a CLL specialist doctor and meet other people just like ourselves..

The next CLL support association meeting is in Poole Dorset in a few days, and there are still spaces..

Easy to say, but try to worry less, and frankly there is not a big worry about CLL now that we have these new drugs, which enable us to now live a completely normal life again..

Best of luck

My CLL diagnosed 19 years ago.....

hey thanks for that. i had no idea. 

Hi Hackneybloke,

 I was diagnosed in Hackney Hospital, while living in Stoke Newington, at the age of 62, in 2010,  It took some time to confirm the diagnosis, regular blood tests, ending with a bone marrow biopsy at Hackney hospital in May 2010. 

I moved in June 2010, back to the south coast where most of my family are, in Southsea, Portsmouth. I had no symptoms and was on watch and wait until 2013 when I started to go downhill.

I found a Trial at Bournemouth Hospital which I was eligible for, in the care of a CLL specialist, Dr Helen McCartney, After another bone marrow biopsy and tests and scans, I was started on Ibrutinib in 2013 on a trial (Resonate-2) with 2 extensions finishing in March 2023. 

I am now back in my local hospital, Queen Alexandra, on watch and wait until I need treatment again. I have done well on Ibrutinib and as and when or if I relapse, hope to go to Acalabrutinib, which Tortola6 has told you, is taking. 

My former Consultant will be at the CLL Support Assoc. meeting at Poole but I have an appointment with my new consultant on that day and wouldn't be able to attend.

I can only echo Tortola6's advice, try and find a CLL specialist consultant, find a trial, when it comes to treatment your first option should be a trial, There are many new BTK inhibitors for treatment that are very effective. Also, lookup HealthUnlocked CLL community and the CLL Support Association,

Best Wishes,

Mike

hi mike

thanks so much for your message. i also had bone marrow biopsy at homerton hospital. i assumed it show nothing as i heard nothing....then two years later a consultant called out of the blue saying that they'd lost the results, then found them and that i had leukemia.

all i'm experiencing at the moment is constant night sweats but not drenching. bloods have been ok of late but the last few days i started feeling weird and fatigued and became convinced that things are progressing. at the same time i'm generally neurotic and easily stressed so it could be that anxiety is getting in the way rational thought. either way i'm so reassured by you and tortola's responses.....and i have organised to go to the poole conference this thursday. 

i'm already feeling less alone. thank science for the internet!

hey tortola. just been chatting to norah on the phone.....and will be attending the conference in poole on thursday. thankyou so much for reaching out with reassurance. greatly appreciated. 

hi tortola

thankyou so much for responding with reassuring words. i went to the conference in poole yesterday and met people in their 90s who were diagnosed a century ago (you know what i mean ).

what a difference it made meeting others on watch and wait who, like me, had never met anyone with the same condition. i got to chat over lunch with consultants from southampton who are happy to take me on and look after me. epic.

thanks again.

J

mike. amazing. two responses to my original post, both with epic advice. i went to the CLL conference yesterday in poole. i met people in their 90s who were in great shape and diagnosed decades ago. i also met others who had never met any CLL people before. it was like a 'separated at birth' re-union. 

helen gave a very good talk on current meds. what an eye opener. i'd been so left in the dark by homerton hospital and gp. i chatted with two docs who said they'd be happy to have me under their supervision. epic. 

thankyou so much for the reassurance and advice.

J

I’m in West Norfolk and can’t even get a diagnosis though blood film seems conclusive

just had my first appointment postpone Manager spoke to consultant who said SHES not concerned so heaven knows how long I wait to be seen. I understand watch and wait but I’m feeling scared and ill with symptoms she brushed off as unrelated in tge to and fro while I waited on tge phone.

i don’t want to see these people anymore and wonder where o can be referred as they just don’t care.

Hi J

Glad to hear that the Poole conference went well and you got a lot from it.

Yes, Helen was my consultant for 10 years at Bournemouth. 

I had an appointment at QA Hospital here in Portsmouth on the day otherwise I would have gone too.

Well, all the best in your CLL journey.

Mike

are you on meds....or still watching and worrying? i spoke to one of the consultants at the conference who said he would be happy for my gp to refer me to him in southampton. my local hospital (homerton) is a joke.