Three monthly hospital appt - CLL Support Assoc...

CLL Support Association
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Three monthly hospital appt

I went today for my usual three monthly check-up at Lincoln Hospital. Good to report that my blood counts are now normal two years after completing my first FCR treatments, so this is proof that this treatment can be very effective. I am hopeful it will be long lasting.

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Great news Arthur! Really pleased to hear that encouraging news. Long may it last.

Newdawn

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Thank you for sharing such positive news Arthur.

This is very good to hear and long may it continue, as you say.

I have heard of many people who have had excellent results with FCR and we have to work with what is available, in the here and now. Unfortunately, it is not suitable for everyone but things are changing!

Enjoy... celebrate!!!

sparkler x

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Hi Arthur,

I'm expecting treatment myself this year which no doubt will be FCR, 3years after diagnosis. How long was your time to treatment?

Mikey

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Hi Mikey,

I was diagnosed in July 2009 with a wbc of 67 and started FCR treatment in September 2010 with a count of 150. I had a course of five but after the first one the count was down to 20!

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My WBC was 131K at my last consult, so in April I'm expecting a discussion with my haemo about treatment.

Well done to you, as has been said, long may it continue.

Thanks and best wishes to you

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Hi Mikey, I was diagnosed last October and my wbc is now 128,000 but all other bloods are holding well, so my doctor is not even talking treatment but has told me to come back in six months. He's told me that he takes the alc and symptoms into account and not just the wbc, when deciding on treatment!

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Hi jazy-annie,

I didn't go into treatment. I asked for a second opinion and a referral to Bournemouth Hospital where I was enrolled on the RESONATE-2 study and have been on Ibrutinib for the last 3 years. It wasn't only WBC but also very bulky lymph in chest, abdomen and on spine which is common with the 11q deletion.

Best wishes

Mike

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Great news...FCR is still the best treatment for most younger (65 and under) CLLers. I have a number of friends progression free in years 6 and 8.

~chris

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That's encouraging, Chris, thanks.

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Delighted to hear it, Arthur123 and yes, long may it continue. It does demonstrate how effective FCR can be. I see it remaining the gold standard in the UK for several more years yet.

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Well done. My count was normal 6 months after treatment. The consultant and my GP won't make any firm predictions but seemed quietly confident that I couls remain the same for a number of years.

Mike

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Great news Arthur!

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That's great, Arthur. It's lovely to come to the website and read something that makes me smile and feel happy. Support is here through all aspects of our 'journey'. Hoping your good health continues.

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Hi all just thought I would share my thoughts on FCR. I was diagnosed back in 2010 at the age of 43. Just had my second round of FCR now and the transformation is all ready fantastic, hardly any fatigue and not a bulky node in sight. I know it's still early days but I'm optimistic for the coming months and years. Good luck to you all and stay strong. Steve.

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good to hear Steve, all is going well and may it continue

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Thanks for all your comments. I hope those of you facing treatment have as positive outcome as i have had.

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We are so pleased to hear of sufferers who are improving with treatment. My husband is now almost 74 and as yet has not been treated, still on W&W, he has been quite poorly for a few weeks with a heavy cold and headaches and the always present fatigue!! He is increasingly complaining of severe tension in his neck and shoulders and forehead, and ideas or solutions???

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I had a nasty crick in my neck some months ago that just wouldnt go so I decided to get a head, neck, shoulder and back massage. It was absolutely amazing and I could feel the tension literally lifting away as she got right into the tense and tight areas and she seemed to know just where to work on. Well it worked like magic because I havent had any cricks in my neck since and the tightness and tension has all gone.

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nice to start the week off with a happy thought!

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Thank you. This is encouraging. I know every person with cll is different, but my husband has struggled with abnormal counts for nearly a year now after fcr. We are hoping to turn that around.

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