Hi I’m Wendy I’m 69. I’ve recently retired to enjoy more time with my granddaughter and to spend time at the beach and in my garden. I was an advisory teacher, a great career but it’s timely to hang up the lesson plans.
I was diagnosed with CLL in 2005 but it hasnt affected me until the last 6 months. My specialist had 2 months spare Ibrutinib so I’m on that. Have good blood results and a lot less fatigue.
I’m looking forward to becoming part of your group, it counts so much to share with others on the same journey
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Welcome!!! I am happy you have joined us...this is a very special community. We are here for each other!!! I am closing in on 31 years with CLL with 17+ years receiving treatment off and on. Life is great! Panz 🙏💕☘️😍
Cheers Panz lovely of you to post so quick. And what a great story you have. I guess I’m at the stage of finding the right dose of my Ibrutinib over the past month I’ve become increasingly immobilised with joint pain— see the specialist tomorrow. Did you have trial and error for treatment
Ask if they can give you acalabrutinib instead. I could not walk with ibrutinib. Since you spelled immobilised with an "s" and not a "z" if you are not in US it may not be easy for them to prescribe acalabrutinib so they might tinker with the dose.
Cheers. I’m in New Zealand- went to an American boarding school, so I have spelling in both camps! Haven’t heard of acalabrutnib. Thanks I’ll put that on the table tomorrow when I see my specialist
Welcome Wendy. If you went 14 years in watch and wait, that could be a good sign that you have a more indolent type of Cll that should respond well to treatment
I don’t think I’ve ever heard of a doctor handing out samples of ibrutinib. I take ibrutinib too and never take it for granted that I have a serious cancer that is kept at bay by a pill a day.
Where are you from? I saw you make reference to your “bloods” so I suppose it’s not the US. I have never heard labs referred to as bloods before joining this forum. I would guess UK, but I’m not aware of ibrutinib being offered front line in the UK.
The big tip off for me to tell someone is not from the U.S. is when people add that superfluous extra “a”to hematologist. Lol.
I never got the point of silent letters. Seems like a waste of a letter to me.
. I’m in New Zealand.went to an American boarding school so I’ve got a mixed bag of spelling.
I got the free 2 months because my guy has a patient getting a free supply and hes on 2 instead of 3 tablets a day so every 3 months he hands over a full packet that my specialist has in his bottom drawer!!! Hope he’s got some tomorrow when I go. My big thing is have been on for6 weeks but last 2 weeks really rotten joint pain. So I’m asking on this forum for others experience s.
Hi Wendy. I'm curious to know what your prognostic markers were prior to treatment. I have 'favourable' markers and have remained untreated for 13 years now.
Hi seelei I’m over at the beach and my diary is at home. Will post a history of my numbers tomorrow . Off the top of my head though my white blood count went from 23 to 39 which was when I started pill popping. So I was pretty much like you 14 years free of symptoms it’s only in the last 6 months that things have gone awry. Of course it’s so individualised that you could go another 13 years .
Not particularly interested in blood numbers as they can be pushed around by factors other than CLL.
I was wondering if you had an IgVH mutation test done. Ditto a FISH test. I'm interested which chromosome deletion(s) you may have (if any), and whether you are IgVH mutated or unmutated.
Then again, being NZ, you might not have had either test done. You have to be persuasive to get them done here in Oz.
Aah - what I was implying is that both NZ & Oz have Govt subsidised health care, so they can be a bit lean with what they may consider 'Unnecessary testing'.
Europe and the US tend to be more pro-active with determining what flavour of disease the CLL patient may have.
I would never dis NZ - It's one of my favourite countries. I lived there for 7 years and both my (now adult) children are Kiwis.
I just replied to you on your other post, and have now read this previous post from you.
Like cajunjeff , I have never heard of a doctor giving someone his leftover tablets from another patient! How long can that continue? Ibrutinib is a longterm drug - not just taken for a short time.
It takes time to see the good effects of Ibrutinib, and time to see what side effects you might get longterm. I felt rather uneasy about your doctor maybe only having 2 months of "spare" Ibrutinib that he can give you.
I'll be interested to know what the doctor says at your appointment tomorrow.
Hello Wendy, Welcome they are some great people on here, whenever I feel lost or just scared i know others are going thru and been thru battles that we have just begun. I found out in Feb 2018 that I had CLL. I am 13q unmutated not the greatest and not the worst. I have been on ibrutinub for four months. Had no major side effects until my back started bothered me well who knows what happened? They found compound fracture in my back and let just say it hasn't been fun. I was worried about my hair breaking on the ends and let just say that is the least of my problems. Didn't mean to write a book lol. Good luck on your journey we are here for you.
Haha yep. And how are you doing on your journey. It’s been interesting reading how assessments and treatments are so different across the world. Are you on treatment?
Just read your new post on joint and muscle pain - YES -I've got that now plus fatigue for the first time, plus many other side effects of Ibrutinib including A.Fib.
Can't walk very far at all at present. I've been on this drug for about 3 years from a period when the manufacturers were supplying it free in NZ and had very good results initially, reducing blood test results to near normal.
Re the whole Ibrutinb dosage issue - I could not tolerate the full recommended dose so my haematologist was relaxed about reducing it. I'm still currently on 1 capsule.
I think now that Venetoclax has been approved here in NZ some of us may be offered it as next treatment.
So nice to hear from you! Looking forward to hearing about your progress! I'm still w&w since 2017, so not much going on with me. I love the knowledge and compassion of this group!
Welcome to the club no one wants to be suitable for but loves being part of! I have been on Ibrutinib for a year and gone from 95% marrow penetration to MRD and blessed with few major side effects. I hope you dinf the right drug regime to suit you.
My doc has put me on one a day, he took into account my spleen and lymph nodes have shrunk and platelets are coming up. So hopefully it will help with the joint pain. I’m self funding my Ibrutinib so my bank account is so happy too. My bloods are monitored fortnightly so there’s my safety net. All the best and keep in touch
Welcome to our own little corner of the world. Lots of knowledge here and stories to tell. Not on treatment yet; diagnosed 5 years ago and sm feeling pretty good.
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