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CLL Support Association
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New to group

Hi, I'm new to CLL(3 months). Just found this site. Glad to see that some of my symptoms are common.

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Hi! Welcome. :)

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This is the place! Glad you found us. Take care-be well. bill

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A warm welcome to you Lfm so soon after your diagnosis, Hope you are keeping well and the symptoms you mention are not too problematic. How are you coping?

Please feel free to share as much of your CLL story as you wish. It might be advisable to restrict your post to the community however if you share more personal information.

'If you wish to lock your post, select the downward arrow at the bottom of your post and click on 'Edit'. You will see an option called 'Who can see my post'? It is currently set to 'Everyone'. Just click on the 'Only followers in my community' to lock it.'

Best wishes,

Newdawn

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Thanks so much for the advice. Wasn't sure about how to post. My symptoms from the imbruvica are thinning hair, red & purple splotches, and joint pain that moves and goes away in a day.

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Welcome... the strange thing about CLL is how some have numerous publicized symptoms and others virtually none...in my case just swollen lymph nodes... nothing else.

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Newdawn, have you gotten a promotion? Are you acting in Neil's stead? Just surprised at your new designation. Whatever it is, good on you and for us.

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Congrats on being the first to notice (or comment anyway) cllady.

Yes I've been re-badged to help with Admin. It's in recognition that Neil needs to sleep sometimes (allegedly!)

Thanks for your kind endorsement. I'll do my very best.

Regards,

Newdawn

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A likely story for Neil, huh? I had just last week noticed that he seemed to be the "all nighter"--well, time differences and all, I can't really say that.

But it was your late night posting that started me noticing when each were most likely online.

Both of you and Chris deserve a round of applause, can you hear it?

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Newdawn, I've often wondered what the difference is between administrator and volunteer?

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Hi, welcome to the family, a vast place of knowledge & support.

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You're very rapidly onto treatment lfm. You must have been quite symptomatic at diagnosis? Sorry, I hadn't realised you meant the symptoms from Ibrutinib.

The side effects you describe certainly sound consistent with those we hear reported on Ibrutinib. Sadly it isn't yet a first line treatment in the UK unless there's 17p or TP53 deletions unless it's offered on a trial.

Stay well and best wishes,

Newdawn

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Welcome to this forum and the support you will find here.

I consider myself a newbie as well (my husband has CLL) but have learned so much and we don't feel so alone with this disease.

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A big welcome. I just started Ibrutinib in January and am doing great so far. My huge lymph nodes seem to have dissipated over night. I now have my energy back again. My three grandchildren are happy to have "Honey Grams" back to normal so I can continue to spoil them. Best of luck. Sally (USA)

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Welcome. Always glad to have new travellers on the CLL train. I encourage u to read and listen to the videos when u have time. This is a great site where you can find help sympathy information etc. It makes our life with CLL so much better to have group who we can turn to "Get it when friends and family can't, won't or just have too much on their plates already."

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Where do I find the videos?

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This one is informative as a quick reference. I liked it when I was new. It is called Not your father's CLL with Dr. John Pagel.

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Thank you, the video was very informative.

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Click

on any of the subjects listed under topics at the bottom right (as you look at it) of the screen and follow the links. Some of of the topics lead to videos. If u see a topic that sparks your interest follow it.

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Hi Ifm73 and welcome. You are at the right spot - for support and answers. Don't hesitate to ask - or to vent. This is such a wonderful group of folks and we are all on the same journey in our own way.

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Hello. I was just looking at some past posts on here and also noticed that we might be in the same area of the United States. Hope all is going well with you on the imbruvica. I have been on it for 11 months and had a lot of side effects but not any severe. Hope you are the same.

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Am from Ohio. I've been pleased with Imbruvica and only had some joint pain for a short time, occasional red bruises, but none of the serious side effects. I've taken it since April, 2017.

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