Treatment starting uncertainty

[HarryMet]

I’ve been told for a few months I’ll need treatment soon due to a ‘massive’ spleen. With Covid under control for now it’s looking likely that the go ahead for me to be out forward for the Flair clinical trial will take place next month. What is the usual timeline once I give my consent for tests and treatment starting? Also, if I’m put on the non standard treatment options how long would I need to take off work usually. Looking forward to hearing your experience.

[zaax]

Mine was 6 weeks including a bone marrow; a CT scan and a fair few vials of blood. The results / bloods have to go off to Leeds and Professor Peter Hillman to confirm you can go on it. cancerresearchuk.org/about-...

[HarryMet in reply to zaax]

Thanks for the reply. That sounds about right. Just keen to get started now, one way or the other. Which treatment are you on? How are things going?

[Hidden]

HarryMet, can’t speak to your trial as I am unfamiliar with it. I too had a very large spleen. So large the residents were gathered round for a look and a feel (teaching hospital so I was happy to be on display).

Had FCR while working, once a month for six months. I was able to schedule infusions for Thursday’s, take Friday off and return to work Monday. After the first 3, I could sometimes work Friday!

FCR was good for 5 years, count started up and I’ve been on ibrutinib for 2 years. Only effect is easier bleeding when I bang something.

As always, check with your doc, I hope your trial is as easy as my treatment!

[HarryMet in reply to Hidden]

Thanks for the reply. Good to hear treatment has gone well and that Ibrutinib is proving effective without too many side effects.

[Cheshire2016]

My husband started FCR ( on flair trial) in February this year.

The timescale from consent to treatment was only 2 weeks, and this was mainly for BMB.

We were told treatment was starting on the Thursday, but only found out which trial arm we’d been allocated on the Monday. !

He was then signed off for 3 months, as we expected side effects to be horrible, but it was only the first week he felt lethargic and lack of concentration.

After cycle 2, treatment was suspended for. 8 weeks to see how covid impacted hospitals etc, but cycle 3 resumed last week.

With covid measures in place, if you can work from home then that’s the best, as if shielding is still in place, I’d expect you receive this letter, or whatever relaxing of this is in place next month.

Not sure which part of the country you’re in, there may be others here at the same hospital. (We’re being treated at Liverpool)

Good luck.

[HarryMet in reply to Cheshire2016]

Thanks so much for the reply. So much to think about isn’t there? Just had the fear again after re-reading the Flair consent form! Hope your husband is coping okay now that the treatment has restarted.

Is he thinking if coming off sick leave and returning to work earlier, given how he’s responded? I’m due a conversation with work to discuss how much leave I’ll need tomorrow.

I’ll be treated in London, if accepted.

Good luck to you both too.

[Cheshire2016 in reply to HarryMet]

He came off the sick leave when treatment was suspended and then worked from home via the companies measures to enable shielding staff to continue working.

Now that treatment t has restarted he’s continued to work from home and does not currently have a sick leave leave note in place..

The hospital day for Rituximab infusion is the only day that he can’t actually work from home so took a day off for that.

It probably depends what job you do, and if there already vulnerable shielding staff working from home?

Where I work, they furloughed anyone who was shielding, regardless of if they could work from home, ( as they said it was unfair for people who had to be on site) so workplaces are doing different things.

[bennevisplace]

I was given all the FLAIR info well in advance, then screened for the trial, as would you be: weights and measures, CT scan, bloods and bone marrow aspiration, all at hospital. The latter to check mutated B-cell prevalence and genetics before treatment. (You get the same again 3 months after treatment ends, and I had mine with Covid protocols in force). From memory I formally enrolled in the trial only a few days before starting treatment.

I was randomised to the FCR arm of the trial. Had my B-cell genetics not been amenable to FCR, I believe I would have been randomised to a different arm, in what I think is termed stratified randomisation. So either Ibrutinib + Venetoclax or Ibrutinib on its own.

In my case Rituximab (intravenous) was given at hospital, in a specialised unit, and the first dose was administered over 4 hours, much faster on subsequent cycles. They gave me Fludarabine, Cyclophosphamide, and an assortment of meds to mitigate side effects, as tablets to take at home. Every 28 days, same procedure, though those 4 weeks were once stretched to 6, the extra time to allow platelets to recover.

Apart from the half day for Rituximab, it would be possible to continue work during treatment with FCR. Typically though, patients experience a "day 8 nadir", and can feel very tired, on days 7/8/9/10 of each cycle. In my case I slept a lot on these days. Maybe you would be OK.

If you were on a different arm of the trial, I is a daily tablet you can take at home, while V is intravenous but not started immediately. I know nothing about side effects with these drugs but there's plenty of experience on this forum.

[Lisa-1959]

Harry, just curious on the size of your spleen? Mine was almost 23 cm when I began treatment; however, it wasn't giving me any trouble at all. The spleen along with several other factors led my local oncologist to start treatment; however, I felt good...still wonder if I could have delayed treatment a while longer.

[Mystic75 in reply to Lisa-1959]

My husband's spleen was 23cm when he started treatment, too. He claimed it didn't bother him and it certainly didn't bother his appetite.

[Lisa-1959 in reply to Mystic75]

My CT scan showed it was pushing other organs around, but I never noticed it or felt it. When I laid down, I could see a bit of a bulge, but it was never sore or sensitive. My appetite didn't seem to be impacted either. I know some folks talk about a sense of fullness plus soreness, but that didn't happen to me. It is so interesting how everyone responds so differently!

[Hm15]

Hi my partner has been told that there is an alternative to Flair or FCR - acalabrutinib. Might be worth looking into.

[bennevisplace in reply to Hm15]

Unfortunately Acalabrutinib is not yet approved in the UK. There are a couple of clinical trials, but not for untreated patients. NICE have it on their list to appraise, no date given.

nice.org.uk/guidance/indeve...

[AdrianUK in reply to bennevisplace]

Some centres are able to access it via a special scheme from the company. This is one of those situations where it might pay to get a second opinion from one of the specialist sites to get access to this drug at this time. It’s been spoken about on a couple of webinars.

[BluMts]

HARRYMET, before signing up to a trial where you may get something other than Aclabrutinib, phone AstraZeneca and ask about their scheme for supplying free Aclabrutinib to NHS virgin treated CLL patients during this pandemic. I guess this offer would continue after epidemic if already started??