Worried about the numbers about to start FCR

[Pinkvixon]

Hello,

After optimistically signing up to the FLAIR trial last week, we got the call yesterday to say Mum had been randomised to receive FCR which was a little disappointing. We were told that they are still awaiting all results, but her CLL infiltration was very high at 75%.

I am now worried sick that this number means her prognosis is less favourable and given how unwell she currently is, I am terrified of what the effects of FCR will mean for her.

Can anyone offer me any advice on what the % infiltration means and what we should ask before starting FCR next week???

Many thanks 😰

[Hidden]

FCR is not that bad for most people. Treatment is do able and remissions can be easily achieved. Of course the post chemo bit scares everyone. It is a very small risk as is crossing the road.

I presume the % infiltration is the amount of lympocyctes in the bone marrow. This overcrowding stops new red blood cells growing leading to anaemia etc.

My FCR was started because of falling HB because the bone marrow wasn't able to work; high infiltration, it was becoming overcrowded.

I had my FCR treatment stopped after cycle 5 because I'd been in remission since end of cycle 2. How good is that!

We all want the super new therapies but FCR has done it's job this time and will give the scientists time to bring on new non chemo theraphies before I need treatment again.

Being on a trial your mother will be so looked after.

[Pinkvixon in reply to Hidden]

Thank you so much, that gives me hope. Great news that you have responded so quickly to treatment and gone into remission so quickly, I really hope Mum has the same response 🙏 Was your % infaltration as high as Mums at the outset and did you have many symptoms pre-treatment?

[Hidden in reply to Pinkvixon]

Bone marrow wasn't done as in UK and some patients aren't tested.

Lympocytes 265. Hb falling and under 100 for 9 months at 94. No lumps or bumps. Breathlessness on hills. No infections.

I didn't realise how tired I was until after treatment and given new energy.

[AussieNeil Partner Administrator]

While your concern is understandable on behalf of your mother, you can relax. Bone marrow infiltration by CLL reduces the amount of bone marrow capacity for making the different blood cell types. What's more important than the infiltration percentage, is that your mother has adequate bone marrow capacity to manage the typical temporary drops due to treatment. Those that know their bone marrow infiltration prior to starting treatment often report figures far higher, into the 80's and even low to mid 90's. Even these patients can be supported by blood transfusions of red blood cells and platelets if needed. If you know your mother's platelet and haemoglobin counts, the triggers for starting treatment are platelets falling below 100 and haemoglobin falling below 10.

FCR acts fairly quickly compared to Ibrutinib, so your mother's bone marrow infiltration will be cleared out within a couple of months as opposed to the rather slow response (taking upwards of a year or more), seen with Ibrutinib.

Neil

[Pinkvixon in reply to AussieNeil]

Thank you Neil, that's re-assuring. I don't know the other numbers yet until we go back on Tues but treatment is scheduled to start on Weds. She is very unwell at the moment, constant shortness of breath and very large nodes in her neck, armpit and swollen spleen. I just hope she's not too unwell to tolerate the FCR.

[AussieNeil Partner Administrator in reply to Pinkvixon]

FCR has been in use for about 15 years now, so there's lots of treatment experience. Ibrutinib has only been in use for about 5 years.

Sounds like your mother has anaemia, so she may need red blood transfusions if her haemoglobin drops well under 10 during treatment. Her spleen and nodes will shrink fairly quickly with FCR.