Big day update

[dandelup]

Now back from hospital I got selected for fcr which I was hoping to avoid, but going to approach it in a positive manor try and keep infection free and look forward to March when it will be finished.

[Newdawn Administrator]

Been eagerly awaiting your update dandelup. As I said in my post, I’m not averse to the idea of FCR...it has some distinct advantages and the oversight will be excellent on the trial.

Best wishes for the start of your treatment and please keep us updated. Some of us are passing along that way soon 😏

Newdawn

[dandelup in reply to Newdawn]

My only concerns are infection but I may just decide to become a hermit for six months at least the bulk of the treatment will be over the winter so hunkering down in a warm house must be looked at in a positive light

[Newdawn Administrator in reply to dandelup]

Yes it’s one of the reasons I’d opt for treatment over the winter to be honest dandelup.

Be well and keep those infections at bay!

Newdawn

[dandelup in reply to Newdawn]

I intend to as much as poss will keep you updated as to how it goes

[AdrianUK in reply to dandelup]

Some of us are just behind you. FCR may turn out to be the absolute best for you as an individual. Also the other arms also put you at risk of infections initially too. Good luck. We will be watching your progress with great interest.

[dandelup in reply to AdrianUK]

Thank you Adrian , just want to get on with it now as sooner it starts sooner it’s over and will deal with any hiccups along the way

[Wroxham in reply to dandelup]

Best wishes on starting FCR.

Remember to report anything about not feeling well. Take your temperature daily and drink water to flush your systems through. You will know your body and please always seek prompt attention if you feel it is needed.

I'm sure you will do well . Please keep us posted.

Sue

[dandelup in reply to Wroxham]

Thanks sue much appreciated

[Hidden]

I had FCR and do not regret it. It can have marvellous results. Being on a trial you will have so much attention and care, so that is positive. The shorter option so that you can get on with life without a future of pills everyday.

Do not be negative. Think that soon those pesky lymphocytes will be gone.

Best wishes.

[dandelup in reply to Hidden]

Thank you that is exactly how I am going to approach I’m hoping my hair will fall out always fancied the bald look much to the wife’s annoyance as she thinks I will look like a thug, but joking aside being positive is good advice

[Hidden in reply to dandelup]

Sorry you are NOT going to go bald. Hair will thin starting cycle 2. But the wife doesn’t have to know that!

[dandelup in reply to Hidden]

Oh at least something to look forward to ha ha, I have a 1970s mullet wig somewhere must dig it out, being serious once it starts to fall out is it best just to shave it off?

[Jm954 Administrator in reply to dandelup]

It usually goes thin but I suppose whether you go bald could depend how much hair you have to start with!

Be aware that when it grows back it can be completely different - could be exciting.

[Jm954 Administrator]

Try not to feel disappointed. FCR is a tried and tested treatment with a strong history of good remissions and it's still the gold standard against which all others are compared.

It will be all over in 6 months and by the summer next year you'll hopefully be CLL free and enjoying your life.

I'm sending you best wishes for an smooth treatment and a complete remission. Please let us know how it goes.

Jackie

[dandelup in reply to Jm954]

Thank you Jackie for your kind words, here’s looking forward to next March and a fatigue free life.

[noeagaman]

I had FCR during this past winter and it went mostly well. I wore a mask everywhere that I went so it was nice that the weather was cooler. A mask during the summer here in south Texas is so uncomfurtable.

I bought a recliner right before FCR and that is where I spent most of my time. Be sure to drink plenty of water as I'm sure your medical team will suggest. That will help get the drugs out of your system after they do their job. I also drank plenty of green tea and no coffee.

You'll get through it and look forward to a spring awakening with a full remission...

Chris

[dandelup in reply to noeagaman]

Thanks Chris I appreciate your words, I intend to be strong and stay infection free if possible and indeed intend to be well next spring I have a golf handicap to improve upon

[Justasheet1]

Is Ibrutinib approved for treatment naive in the U.K. or only for relapse?

[Cllcanada Top Poster CURE Hero in reply to Justasheet1]

I believe it is...

adults who have had at least one prior therapy, or who have a 17p deletion or TP53 mutation and in whom chemo-immunotherapy is unsuitable.

[AdrianUK in reply to Cllcanada]

Hi approved or licensed first line (so private patients can get it) but only funded by the NHS in the way Chris just explained. And now that is being interpreted that anyone who’s ever had FCR is allowed to have ibrutinib second line.

[Peggy4]

Thanks for updating us. It’s a disappointment in some ways and yet if you are lucky enough to get a good remission at least once it’s done it’s finished unlike ibrutinib.

I wish you all the very best and hope you’ll let us know how you get on.

Peggy 😀

[rcknow]

I went through FCR from October 2016-March 2017. I did fine on it, no infections but I did have neulasta shots after each round due to low neutrophils. They bounced back up before the next treatment. I'm sure you're in very good hands with you chemotherapy team. The chemo nurse are the absolute best. Best of luck with the FCR!

[dandelup in reply to rcknow]

Thank you so much for your kind words

[dandelup in reply to rcknow]

Thank you for your words, I intend to sail through it fingers crossed

[Senecio]

Welcome to the small but feisty band of FLAIR FCR patients on here. I finished my treatment eleven months ago and I feel great. Unlike the guys on ibrutinib and venetoclax, I take no drugs on a regular basis (apart from a statin). I'm not personally expecting a cure, although some lucky people post FCR get very long remissions, which are effectively cures. I'm a few years older than you, and your relative youth gives you an advantage. So don't be glum. Just watch out for those hornets in the garden. They could put a REAL crimp on your day!

John (in Yorkshire)

[aussiemummy]

Wishing you lot of luck with your treatment.