Thank you! : Hello everyone! I just want to say... - CLL Support

CLL Support

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Thank you!

tinylobito profile image
23 Replies

Hello everyone! I just want to say thank you to everyone for keeping this community active. I’m a 26 year old female and was just diagnosed with CLL but don’t have any symptoms. I have the deletion of 13q and am IGHV-mutated. My CT scan showed everything was normal. Even though my anxiety went through the roof while waiting for the CT scan results to come back I wasn’t too worried because of you guys! Your posts have been so helpful in helping me stay calm. I was scared this diagnosis meant I wouldn’t be able to have kids one day or enjoy life how I want to but reading your posts on successful pregnancies & other important life events, I know this is nothing to fear :) THANK YOU THANK YOU THANK YOU!! AND GOOD LUCK TO EVERYONE BATTLING THIS AND OTHER STUPID CANCERS!! <3 (And I’m also so happy medicine is advancing quickly for this disease!!)

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tinylobito profile image
tinylobito
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23 Replies
PlanetaryKim profile image
PlanetaryKim

welcome tinylobito! glad you found this group. good luck to you on your journey. :)

tinylobito profile image
tinylobito in reply to PlanetaryKim

thank you!! Good luck on your journey too!

GMa27 profile image
GMa27

I have the same markers and was on W&W 12 years and felt great. Hardly got sick and I was a teacher before my dx. Just live ur life and try not to get anxious with each check up. After the second year I relaxed about that.

We are here for ya! 💕

tinylobito profile image
tinylobito in reply to GMa27

Thank you! 💗

Lily_Pad_Master profile image
Lily_Pad_Master

So glad you found us! Your age and health mean you’re going to be breaking records for long life! Enjoy it all!!!

tinylobito profile image
tinylobito in reply to Lily_Pad_Master

Love the way you put it thank you!

Dghb profile image
Dghb

I also have the same markers as you. Dx in 2016 but had mbl since 1985. Welcome! We can W and W together .

tinylobito profile image
tinylobito in reply to Dghb

wow such a long time!

Smakwater profile image
Smakwater

I love your balanced point of view. You too are an inspiration.

Like Dr. BK says, "WE are all in this together".

JM

tinylobito profile image
tinylobito in reply to Smakwater

Thank you! Yes we are!

Lisa-1959 profile image
Lisa-1959

Ugh on being sooooo young to receive a CLL diagnosis! :-(

I have your same markers, and from diagnosis to treatment, I was in watch and wait almost 22 years. I was 37 when diagnosed, but my doctor had been watching an enlarged lymph gland since I was about ~33. The medical advances have been tremendous, and as my oncologist kept telling me, the longer I could wait until treatment, the more options I would have available to me. Same for you...praying for a cure in the not too distant future!

tinylobito profile image
tinylobito in reply to Lisa-1959

I know :( at first it was scary to find out it's more common with older folks. 22 years wow that's amazing! Thank you I hope we can get a cure soon!

Lisa-1959 profile image
Lisa-1959 in reply to tinylobito

Yes, it is scary, and it is easy to feel you are dealing with a ticking time bomb. I started treatment last year and definitely am routing for a long remission...and a cure! Take care of yourself!

Sushibruno profile image
Sushibruno in reply to Lisa-1959

Watch and wait 22 years that's amazing, i pray i can go that long.

Lisa-1959 profile image
Lisa-1959 in reply to Sushibruno

I pray the same for you! :-)

Sushibruno profile image
Sushibruno in reply to Lisa-1959

Thank you Lisa🙂

Root65 profile image
Root65

Totally agree with you. I am fairly new too and this site keeps me as sane and as balanced as I can be 😊

Deta1961 profile image
Deta1961

I’m 58 and was diagnosed at 40.... here i’m 18 years after! Keep calm LLC isn’t the end!!!

Sushibruno profile image
Sushibruno in reply to Deta1961

These are the stories that make me 😊.

Deta1961 profile image
Deta1961 in reply to Sushibruno

We have to smile, never give up!! We will be stronger than LLC, we must kill LLC instead of LLC kill us!!! I love to belong to this group when we are down there is always someone to make us smile....

Sushibruno profile image
Sushibruno in reply to Deta1961

Thank you i need to hear words of encouragement i just lost my 2 dogs recently sushi and Bruno and I'm devastated i just want to be happy again. And thinking abbot this stupid disease doesn't make it easier.

Carmen11 profile image
Carmen11

Wow what an amazing attitude, you will have a wonderful full life with hopefully some of the best medical treatment on the horizon. Go get em......

Flabal profile image
Flabal

Hi tinylobito

Welcome to our group. It has been a life saver to me.

One thing I learned about CLL is that it is different for each one of us.

I wish you the very best. Xx

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