discouraged on FLAIR

[romarin]

Flair trail. After Rituximab infusion 3, about 3 weeks ago. A lot of muscle pain, paracetamol hardly takes the edge off. Still tired though flashes of normality and desire to work. Some days of depression. Still the bloods have turned, after peaking at just over WBC of 300 as predicted they have now begun to reverse. So all going according to plan. Still am told it will be months before I feel better. Sigh. And I just pray the muscle pain eases off. Anyone with similar experiences I would love to hear from. Infusion 4 next week.

[PaulaS Volunteer]

Hi Romarin,

I'm very sorry to hear about the pain and discouragement.. I'm sure it will get better in time, but I guess that's not much help when you're in the thick of it...

You mention WBC peaking at over 300 before starting to come down, so I assume you're on the Ibrutinib + Rituxan arm of FLAIR, rather than having FCR?

Hoping things will soon improve for you....

Best wishes,

Paula

[romarin in reply to PaulaS]

Yes I should have said it is the Ibrutinib Rituximab arm of the trial. Thanks for the sympathy. !

[wroxham-gb]

Just hope that you soon start to feel better Romarin. Can they give you stronger painkillers? It's just a thought although I'm sure you've asked, as its not chemo you're having.

Best wishes.

Sue

[terryI_uk]

Hi Romarin, I had my last infusion last week, (flair trial, or arm), I had hoped for a quick fix but have been very tired all through, some muscle/joint pain but manageable, some days I feel I can't be asked to do anything, hope you find some pain relief and things improve soon, Terry

[romarin in reply to terryI_uk]

Dear Terry,

Thanks so much for your reply. Have been suffering even more since I last posted. Quite severe pain in arms and legs. Now taking paracetamol and codeine which helps. I would really like to know how you are feeling now after finishing the Rituximab? Still tired? Still aches and pains? Have you been advised how long it might last? It would be great to talk if you felt like it...

Thanks

R

[terryI_uk]

Hi romarin, sorry you're still feeling bad, have you spoken to doctors about it and what have they said, I'm still pretty tired everyday though aches and pains come and go, I don't see haematologist until April and have ct scan and bmb before that, I mention these ailments each time I see nurse at chemo clinic but not much response, I know I probably need to do more exercise but don't always feel like it, I get out for a walk some days weather permitting and it's ok once I get started, just have to persevere I suppose, hope you feel better soon, Terry