UK CLL Forum - updated post lockdown guidance ... - CLL Support

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UK CLL Forum - updated post lockdown guidance for the management of CLL

Jm954 profile image
Jm954Administrator

During the height of the COVID19 pandemic the UK CLL Forum issued guidance on managing CLL patients. This guidance has now been updated with post lockdown guidance.

Many of us will be disappointed to see that the first point is to continue to 'consider telephone or video conference appointments if feasible'. For many it has been quite a few months without any contact with their haematology team which has been unsettling and the news that this may continue for a while yet is worrying.

For stage B/C patients needing treatment, they suggest consideration of either a clinical trial or the AstraZeneca acalabrutinib CLL program for treatment naïve patients (fulfilling eligibility criteria for ELEVATE-TN population).

The full details are here but the patient survey is now closed. ukcllforum.org/wp-content/u...

The eligibility criteria for the ELEVATE-TN trial are here - scroll down to near the bottom: clinicaltrials.gov/ct2/show...

Jackie

13 Replies

Thanks, Jackie. Have you any idea how long the Acalabrutinib for forst treatment patients will be going on for?

I’m asking because I’m wondering whether, if I’m close to treatment, this might be the way to deal with it, and should ask my haematologist.

Cx

Jm954 profile image
Jm954Administrator in reply to Psmithuk

I honestly don't know how long it's going to last but I think if you're close to treatment perhaps it's worth a discussion with your doctor even if it's only by phone. It's probably a good treatment for almost everyone.

Jackie x

Psmithuk profile image
Psmithuk in reply to Jm954

Thanks, Jackie.

Thank you Jackie.

As usual helpful and precise and to the point.

Colette

Unfortunately the study you mention only includes people with Co morbidity and so is described by Astra as those contraindicated for FCR. I shared the Astra wording here healthunlocked.com/cllsuppo...

Psmithuk profile image
Psmithuk in reply to AdrianUK

Well, it’s still good news for those of us with comorbidities, Adrian

AdrianUK profile image
AdrianUK in reply to Psmithuk

Very true.

Thank you Jackie.

Peggy 😀

My next appointment second week of September had recently been changed to a telephone one but during a conversation with the Trial Nurse yesterday, I was asked if I would prefer it to be face to face. I said yes but did not want to put either myself or anyone else in danger. Unless there is a change in infection rates, looks like it will be face to face!

Netty

I am a bit worried about this. I am on remote monitoring, by choice. At the last CLLSA conference, Dr Patten specifically asked about remote monitoring and no-one at that conference was in favourof it.

I didn't speak in favour of it, because even though you are told that the telephone consult will last the same amount of time as a clinic consult, my experience has been that the phone call on average last approx 3 mins. You are also told that you will have the same opportunity to ask questions. I am nearly two years in, I have never been asked if I have any questions. I am worried that this new protocol will become the norm and that CLL patients will be kicked into the long grass as a cost cutting measure. Sorry for such a long post - unusual for me. Hope everyone is well ❣️

mrsjsmith profile image
mrsjsmith in reply to AutumnJ

Agreed.

Although I write questions down in advance I often forget them, so yes I agree I prefer face to face. Where I think they work better is with my GP and one specific problem.

Colette

AutumnJ profile image
AutumnJ in reply to mrsjsmith

Colette, thank you for your reply. I agree it would be a good idea to write questions down in advance. This was not possible for me because the phone calls informing me that my appointments were being cancelled were not scheduled, so I wasn't prepared. Wish there was a system of accessing ones results remotely prior to phone call, so that we have time to process results and formulate questions based on those results.

mrsjsmith profile image
mrsjsmith in reply to AutumnJ

Agreed,

I am lucky ( perhaps ) that now I am back on IVIG that I get a print out of my bloods every month.

The telephone system is getting complicated as my hospital sends texts but Haematology don’t put dates, so no idea what they are changing so I still have to call them.

I am not sure there is a way around this unless you have a CNS who could email you results before your appointment. My GP added an extra test one time and I was able to email the results to the surgery, but yes sadly we are a long way off joined up working.

Colette

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