Just found your group and thought I'd say hello. No major issues at the moment but it's always good to stay connected.
I was diagnosed in 2009, required treatment earlier this year, and am now in a partial remission. I had bendamustine, Rituxan, and Idelalisib as part of a clinical trial but failed the Idelalisib part. Remission should last a few years and then I'll be back at it again.
I'm especially interested in the research for obvious reasons. Looking forward to learning all I can!
Geoff
Washington, DC, USA
Written by
Eagle5327
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Hi Geoff, a very warm welcome to the community you should now considers yours too! Pleased that you found us and hope others can given you more detailed information on suitable future treatments. I was diagnosed just over three years ago and am pre-treated so am also watching new research and possibilities with interest.
I'm pleased you have no major issues at the moment and hope that situation continues. Yes, definitely stay connected with us.
Welcome to our "club"?. I was diagnosed about 4 months ago,on watch + Wait. You will find this site invaluable for advice, and the fact that everyone has/is going through the same thing and we all know how each other feels
I'd also like to welcome you to the site. I'm glad you managed to find us and post, because the site has had some technical problems recently - which could be offputting for newcomers. I hope you'll stay, because there's a great bunch of people here And LOADS of information.
I was interested to hear about your treatment with Bendamustine, Rituxan and Idelalisib. Did you have them all at one time, or did you start with one or two, then add the extra(s)? You say you "failed" the Idelalisib part, and I'm wondering what you meant by that? Did you have a bad reaction to it?
I recently started Idelalisib and was fine for 3 weeks, then various problems started, which I'm not sure are due to the Idela or something else. So I'm keen to hear about other people's experiences with it.
Hi Geoff. Good to meet you. I was disgnosed end of May. Watch and wait and like you, I follow with keen interest any new treatment options. You've come to a great place for advice and amazing support. Look forward to hearing more from you. Peggy.
This is indeed a warm welcome! Thank you so much! It's a pleasure to join you. I'm sure I'll learn and gain much more from you than the other way around, so double thank you again.
This was the first treatment for me. The trial I was on was a double-blind randomized Phase 3 trial in the US that involved bendamustine and rituxumab for everyone, plus either a placebo or Idelalisib. The idea was to test whether idelalisib would extend the length of remissions and help move it toward front line treatment for everyone.
My "failure" (my term) of idelalisib was severe diarrhea, involving extreme abdominal pain that caused me to pass out at one point and then to be taken to the emergency room for a full day of fluids and steroids. It also involved major dysfunction of my liver and kidneys, although no permanent damage was done, thank goodness. The protocol required a delay of all treatment until the liver and kidney numbers normalized, which took a couple of months, and then to resume the BR + a reduced dose of idelalisib. That didn't work, either. Within 24 hours I had fainted again and the routine began again. Idelalisib was dropped and once my liver and kidney numbers normalized I restarted the BR. There was never a question about whether I had received the placebo, even though it was supposedly a blind study -- all the nurses and my oncologist knew just from the symptoms that I had received the real thing.
End of the story is fine. I tolerated the bendamustine quite well and the Rituxan, too, despite the usual flu-like effects. My blood numbers are now shockingly normal. The spleen is down to human size. I still have a few lymph nodes in the 2-3 cm range which is why I'm in partial remission rather than a complete one. Most of all, I feel just fine and am happy as a clam. Say yes to long remissions!
Hope this helps those that asked and who might be interested.
BTW, the trial I was on is now closed. I've been told I was the last patient on it. I was at an excellent educational forum in New York City over the weekend put on by the Lymphoma Research Foundation, and saw some initial data from the trial I was on. Looks the the Idelalisib does in fact increase duration of remissions for those lucky people who can tolerate it. Publications should be out soon.
Regards to all --
Geoff
PS If you'd like to know a bit more about me, here's a link to a video produced by Gilead Sciences earlier this year. Through the Lymphoma Research Foundation, they asked my wife and me to help make an awareness video about CLL:
Hello Geoff, As others on this community have mentioned - a warm welcome!
I am interested to learn about the BR treatment, & experience you had with that.
After the " adverse effects " of idellalisib, when you restarted the BR, how many treatment cycles did you have ? And when did your blood counts come under the normal range ?
I saw the video, & pleased to say it was uplifting.
Welcome and thank you so much for sharing with us. The impact you felt when you had your diagnosis shows in your face when you remember back to that moment. Something so many of us understand too well. Your video will help so many who have just been told they have Cll that there is life after diagnosis.
This site has been of great comfort and source of information for our fellow CLLers, as we travel on this journey and I hope it proves helpful to you too.
I was diagnosed in April of this year and on first line treatment with Ibrufinib .
I was merrily living my life travelling quite a lot .
I had an answer for the symptoms I had until one day I was out walking and I had to keep stopping .When I got home I took my blood pressure and it was so low I decided to ring the 111 number N H S .( I normally had high blood pressure ) they advised me to go to my local a and e .When I went I was admitted straight into hospital ,given four pints of blood over three days and told I had cll and it was at stage D so I needed treatment straight away .
I have been on Ibrufinib for almost 6 months now and apart from a little nausea and a few other side effects I am doing well .I was unable to do the trial as I have 17 p so Ibrufinib was a first line treatment for me .
Like you I consider myself very fortunate that these treatments are available to people like us ,and I'm sure one day in the not so distant future there will be a cure .
You will find this is a great club to be in (even if we didn't want to join ) The people on here are so caring and helpful you feel you have known them for years .They are more like friends than strangers that you have never met .
I did enjoy your video with your wife too.
Please keep Intouch and let us know how you are doing .
I only found and joined the forum this past week. I am 56 with CLL of 5 years duration now on ibutrinib following a failed first treatment. It is a journey of uncertainty and at times fear, though one which makes me grateful for each day we have. It is comforting to meet and interact with so many others dealing with this sojourn. With all the new therapies, trials, rapidly expanding field there is hope and at the same time a paucity of information on side effects and expected outcomes with certain agents, and it is so very helpful to hear of others experiences. Thank you.
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And LOADS of information. 
CLLSA and Leukaemia Care Joint Response to NHS England regarding Ibrutinib Prescribing as per NICE TA
Remission on Acalabrutinib and Venetoclax 
My husband has Cll..
