I'm new to the site, just saying hello :)

[Marble50]

Hello everyone, I found this site about a year ago but have never written anything...sorry. I think I was not ready and I just watched from the sidelines so to speak. I'm a Primary school teacher and am currently on school holidays which helps as I have more time. Please feel free to read my story, it's not complete but I will finish it...I promise. I understand we all have battles and some are more difficult than others. I read someone's story today that made me cry. I felt guilty for feeling sorry for my self when there are others that are fighting such huge battles but then I remember that we are all different and my battle has just begun.

[GMa27]

Welcome! Everyone's battle is significant. We all go thru things...some more than others but we all go thru first diagnosis experiences, emotional rollercoaster etc. I know what u mean....I had a simple 12 years on W&W and easy chemo experience so I sometimes feel a "guilt" of sorts when I read about some others journeys. I pray for them and try to comfort them with my responses. May you have a very long W&W ! 💕

[debs24]

Hi

Just here to say hello!

I'm taking Ibrutinib too (not as part of Flair though) - have been taking this for 2 years now...am doing fine and just cracking on with life.

Hope you are feeling well and can enjoy the rest of the summer holidays!😎

Debs.

[honey1969]

Hi. Sorry your here but not sorry your here !! I was Dx in Feb of 2018. Numbers are low and I am now on six month visits with my doctor. This place is amazing. So happy to join. The people here help me in so many ways. They are very much appreciated. Hope for a long long W/W for both of us!!

Jackie

[PaulaS Volunteer]

Hi Marble 50,

Welcome.

As this is your first post, it would be good if you included the main points of your story here in this post, rather than just in your profile.

Most people don't look at profiles during a quick visit to the site, and will be missing the main issues you are facing.

Best wishes,

Paula (in Sheffield)

[WinJ3]

Hello Marble,

This is a great and informative site with kind knowledgeable people! I have learned a lot from this hub!

Best wishes to you!!

[PaulaS Volunteer]

Marble, I see from an earlier reply from you, that you were on the FLAIR trial but have just stopped the Ibrutinib due to terrible hand pains. You are now wondering about Venetoclax.

You might like to mention that here, or put it in the title of your post, so more people will see it.

Thinking of you,

Paula

[Marble50 in reply to PaulaS]

Thank you for your advice, unfortunately I am not being offered venetoclax at this point in time. My first reply was to someone who I felt my story might help. My message today was merely a hello as I felt it was time. 🙂

[PaulaS Volunteer in reply to Marble50]

Sorry I misunderstood about the Venetoclax. My fault - I didn't read your reply carefully enough.

No need for you to feel guilty about other people's problems being worse than yours. We all have to deal with our own problems as best we can, and not feel they are insignificant because someone else is in a worse position.

Having said that, sometimes it helps me get things into perspective when I hear of people in worse situations than mine, and makes me feel a bit thankful.

How are your hands and wrists now? Are they continuing to improve since you stopped the Ibrutinib?

Paula

[Kokobean]

Welcome to the group! I’m glad you felt ready to tell us your story as it always helps others.

[MsLockYourPosts Passed Volunteer]

No need to apologize for being an observer for a while, Marble. We all process our CLL journeys differently. You might want to consider locking future posts to community only. The option at the bottom of your post, or for one already posted click on more v then edit and go to the bottom to change your setting. There are several members here who are part of the FLAIR trial, and I'm sure that you will, at some point, want to compare notes with them. Many members are more willing to share personal information under a locked post.

Just saw Paula's response about possibly changing your title. You can do that, also, by clicking on more v, then edit. You probably would find more people who can relate to your experience if you did that.

Around here (California) teachers are facing accepting that it's almost time to go back to work and trying to squeeze in all of those things that they left for the summer break, but haven't gotten to yet. When does school reopen for you?

[Marble50 in reply to MsLockYourPosts]

Thank you for your advice but I deliberately chose not to lock my post. When I was first diagnosed some of the information I found was from unlocked messages on here. They helped me alot and lead me here. I just hope one day I can help someone out there with my messages. 🙂

[MsLockYourPosts Passed Volunteer in reply to Marble50]

Just looked at my emoji choices, and not a single simple smile. So imagine your emoji here, also.

[Peggy4]

Hi Marble. Just adding my welcome. Please don’t feel guilty, there will always be someone better or worse off than us. Nice to have you on board,

Peggy 😀

[LovecuresCLL]

Hi Marble50, Welcome and wishing you success in your journey. Just being diagnosed with CLL can be devastating. So we all have our issues. And everybody is different . We are here for you when you need us .

-John

[Hilomom]

Welcome! As a newbie here, I can attest to the comfort and support found here!

[JigFettler Volunteer]

Hallo Marble.

Welcome. Thank you for sharing so generously.

We are all on a steep learning curve. Not only the science and the maths of CLL, also stuff about ourselves. I have found CLL has led me to many happy places in the last 4 years, of course there are the difficulties, the struggles and tough decisions where courage and resilience is needed. Trust also.

Wishing you well, and much joy too.

Jig.

[Hidden]

Hi Marble. As a former teacher I appreciate how difficult it must be coping with Cll. I find it difficult at times and I had been retired for 12 years before diagnosis earlier this year. I'm one of the lucky ones. I live in Spain and was prescribed Imbruvica from the outset (tp53 17p deletion) from which I have had very few side effects to date. I have a great many supportive friends, both English and Spanish, who are well aware of my health issues, I also have Ehlers Danlos Syndrome and Thrombophilia, so tailor our joint activities to suit my physical capabilities. On the whole life is good.

[bayside64]

Welcome to this group. I always learn something from here.

[Jacksc06]

Hi welcome to the family. You will find great love and support here. Please feel free to ask if unsure or worried about anything the good people here have a wealth of knowledge and will only be too pleased to help you. Best wishes.

[kathymac52]

Hi and I add my welcome. I also hung back and waited until I felt more comfortable to share. I am so glad I found this group. During times when I was so scared for my husband who has CLL (11 q deleted), I found great information and comfort. I love that this site is research based, and that I can find the most current information.