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

[Jm954]

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

[Psmithuk]

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 Administrator 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 in reply to Jm954]

Thanks, Jackie.

[mrsjsmith]

Thank you Jackie.

As usual helpful and precise and to the point.

Colette

[AdrianUK]

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 in reply to AdrianUK]

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

[AdrianUK in reply to Psmithuk]

Very true.

[Peggy4]

Thank you Jackie.

Peggy 😀

[NooNoo14]

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

[AutumnJ]

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 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 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 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