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CLL Support Association
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Test Results FCR- Remission!

Very happy to say that my BMB showed no signs of any CLL ! After 3 rounds of FCR, I am finished with treatment. I am hoping I have a long remission.

I see my oncologist next month for check up then hopefully back to routine blood work. Will keep port in thru the winter. Hopefully get thru the next 6 months avoiding germs/illness.

🎉🎉🎉

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That's so great to hear! What type of mutation do you have? I'm still in W&W but the numbers keep climbing each check up. I'm 13q mutated and the suggested treatment when I end up needing it is 3 rounds FCR and ibrutinib. Glad to hear about your success!

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I am 13 q mutated.... Not sure what u mean about what kind...you are either mutated or unmutated.

Wondering why they are adding ibrutinib for you? FCR should give you long remission with our markers.

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That’s great news! Congratulations!

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I am trying to understand why u did 3 rounds and I did 18? Is it not 18 rounds 6 cycles ? I did FCR in feb 2014

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Normally it is 6 rounds (cycles). I had mine over 3 days. So every 28 days you get chemo.

Experts found that after 3 or 4 cycles, people were reaching remission. So now, some experts stop after 3 or 4 and test. I stopped after 3, had my BMB and blood work done and reached remission. No cells found in my marrow.

Did you have 18 months of chemo?

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No I had 6 months of FCR immune chemo. Every 28 days I went in and did 3 days each month. In the 3rd month I wanted to give up. The vomiting was unbearable but no they insisted I had to do all 6 rounds as I was fit. They said I needed to kill the bad weeds. I had a local relapse 20 months later. Presently on imbruvica since feb 2016. Do u have a link where the experts are saying remission is reached after 3 months as opposed to 6. Thx

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No they told me in person. They said they have been realizing that people reach remission in 3 and not necessary to continue as long as BMB and extensive blood work is repeated. What is bad weed mean?

Sorry you were sick. I had no major side effects but was glad to stop.

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Like bad weed on grass that needs the full treatment is what they told me when I asked to stop at 4. They said no I had to to do the full 6 rounds. anyway that’s in the past now and I am never doing any form of chemo ever again!!

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Why do u have a port?

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I didn't want to be poked in my arms. Wanted them free the 3 days of chemo. I bruise easily too. Always did since a child. Port was so easy. Will probably remove it next year. Want to see how I do during winter/illness time. Some people experience more than usual illnesses. If I need infusions or have some hospital visits, it will be easier to have my port for all the IV's.

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When did you finish the FCR?

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Fantastic! Isnt the feeling wonderful x all i could say to my consultant was ' i love YOU'.

Now you can make plans and do everything that has been on hold. I am just decorating my hall and staircase and have lovely things planned for catching up with friends and family. I can go to exeter to meet my new granddaughter who is due at the end of october. It is called living! X go and enjoy yr life x

Well done xx

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Yes!!!

Congrats on new granddaughter! I have 3 grandgirls! So fun. They have a brother! They went for the 4th and got their boy. Enjoy!!

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Great news so pleased for you.

Take care

Ann

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Congratulations! Long may it last! I'm just delighted for you and you need to go out and celebrate! Keep on keeping on!

Paula

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Hey Ya GMa

Someone here made a reply a few weeks back...it might of been Oleboyredw-uk but I am not certain...but what they said made some sense to me. That stopping FCR early does not reduce harm it causes and by getting 6 cycles it makes sure to kill as much of it as possible. I have not got to the point of researching all the aspects of FCR so I am not in any way qualified to make any kind of informed or intelligent statement....just something someone said that resonated with me. If he made the reply perhaps he can expand on it some.

But Good job on being done and being CLL free. I wish I was

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Hi Scott! I think it was me that made the remark When I went in on round 3 crying and saying I want to stop the FCR! I can’t do it I can’t stand this vomiting. They brought the clowns in ( real clowns 🤡) and explained that to kill bad grass one must do the appropriate treatment. I clenched my teeth and continued until round 6! The fact I only got 20 months remission is irrelevant to me. I have no regrets. As long as there is treatment that gives me quality of life I will take it. Viva imbruvica and Viva this community!

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Fantastic news, congratulations!

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