CLL Support Association
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9 month check up post FCR and it seems it was worth the ride!

9 month check up post FCR and it seems it was worth the ride!

I don't know about you all, but as I head towards an appointment with the hospital, I become quite nervous and anxious. So last week I was manic in my lead up to my 9 monthly check up.. my house was tidy as I was up at 6 every morning unable to sleep...

The day of the appointment arrived and 11.50 seemed to take ages to arrive. I'm a calm person generally but I can honestly say I had to do some deep breathing as I entered the unit on which I had spent so much time having my FCR as well as weekly bloods between chemo rounds.

Bloods were taken with everyone saying how well I looked and then into see my consultant. He was chirpy and happy .. and even funny at points.. said I looked well and on full examination could " feel no palpable nodes" . Bloods were good .. Really good to me .. and any little moans I had, he told me to basically man up and stop over thinking but enjoy life! He used the words remission .. and complete. ..We all know what this means .. no guarantees .. but I felt so oooo grateful for FCR!

Booked a holiday for September and feel well.

Keep going everyone .. We can live well with CLL :)

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Great results that do make it all worthwhile! Thanks for sharing :)

Wishing you a long remission.

Neil

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God is good... x

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Yes God is good and prayer he hears .

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I am so happy for you, My Husband has CLL and I fell just like you do when he gps for check up and blood work. he was told he is at his baseline and the DR. was happy , but still on his med .I am so very happy you are able to take a vacation in SEP. Keep us posted :-)

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Such brilliant news Bethan, I could feel the emotions from your description! Excellent levels and time to let out all the anxious sighs and knotted feelings...life begins again in earnest. However, if you ever run out of things to clean in the run up to these appointments, just pop over to my place with your duster! :-)

Huge best wishes,

Newdawn

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I like you but I don't know if I like anyone enough to clean their house !!!!!!

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Lol! I don't blame you one bit. I wouldn't either! :-)

You've a lot of time to make up so forget the cleaning and enjoy that holiday! I'm going away in Sept too.

Newdawn

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Congratulations, so pleased to hear your good news

Enjoy your holiday, it's well deserved

Elle xx

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Good news Bethan. Have a good holiday, in fact great time.Best wishes.suexx

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Brill news. FCR does work. Me, 1 year in remission tomorrow. Life is good.

Yes, we can now plan. Enjoy life. You now have new opportunities.

Well done.

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Wow! These dates are so significant! Well done you! Have a wonderful day and so praying for continued good health x

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So glad for you. Have a great vacation.

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YES !!! dippity doo dah, love news such as yours.🤗🖖🏼💃🏼

Bubnjay1

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Thank you! We all pick up on the negatives don't we so it's good to share the positives x

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Aww great news. You look forward to that holiday 😀

Ps. If you're ever feeling nervous about a future appointment please feel free to come and clean my house (purely to help you out of course!)

Peggy

Oh no! Newdawn's already ahead of me. Stick me on the waiting list!

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Bethan, great news and such a relief to be able to, now, maybe be able to sleep a full night and into the morning--the house may become a mess! Who cares?

Also, blood pressure, tension should now be eased. Best wishes and bon voyage in September.

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Hi Bethan,

Those are very good numbers! I finished my six months of FCR in late March, had a CT scan in April which showed no enlarged lymph nodes. I had a follow up in early June which showed continuing normal red cell counts, slightly lower but fine platelet counts, and neutrophils around 2.7. When I went last week, the reds and the platelets were fine, but the neutrophils had dropped to 0.5. My nurse practitioner was not concerned as this can happen and I have not had any type of illness before, during, or after FCR. I was diagnosed as a result of severe anemia. I did some reading on late onset neutropenia and it appears to be not uncommon after rituximan treatment. What I found reassuring was that it's not related to bone marrow problems, not associated with severe infections, and seems to resolve relatively quickly. I know that you had a similar circumstance from one of your posts and it seemed to work out fine for you. Since beginning treatment last October, I have been on daily bactrim and acyclovir and that hasn't changed. I'm also, as ever, vigilant with hand washing and all of that.

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Glad to hear you got your CT scan so promptly, I was told in February that I didn't require any more treatment (Rituximab/Methylprednisolone) and consultant requested a CT scan, which is being done next week, so have waited 6 months.

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It sounds as if we have followed a similar pattern on our recovery. My neuts were 0.5 at easter .. They can zoom back up and this is the first time that mine have been over 2!

I think we'll always be vigilant ..You become do aware of everything .. door handles .. trollies. . Hand baskets ... !

Wishing you all the best . Keep in touch x

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Really pleased for you Bethan, great news!

Enjoy your hols!

Lucy xx

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When you see those numbers and here the words compete Remission. Enjoy life. Wishing you a very long remission.

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Terrific news !! May you have a very long remission. Enjoy your vacation as I think anyone who goes through FCR deserves one afterwards.

Sandy Beaches

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Bethan, great post, great news, and wise words, enjoy life!

UK Marc

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Very good news! And keep the holidays coming! x

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Hi Bethan

Congratulations you must be on top of the world! The end of all those blood tests etc and anxious wait for results. Long may it reign and have a fantastic holiday!!

Best wishes

Sally UK

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Your turn next.x

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Thanks so much . .You can do this ... not a walk in the park but there is light at the end of the tunnel x

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Brilliant news! Enjoy your holiday. Best wishes for a very long remission. Beryl

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Good luck.Great news

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So happy for the good news Bethan! Have a splendid vacation--and yes, God is good! ❤️

Paula M

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Way to go Bethan good luck Jules The Flyer

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Fantastic news, Bethan!

My husband is nearly 2 years after FCR and still very well...

Long may it continue.

Take care and enjoy your holiday.

Fran 😉

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