I am approaching the time when I will start treatment. I have read many encouraging posts on here, so thank you all.
What happens after though?
A consultant told me, 14 years ago, at first diagnosis, that you can only have 3 lots of treatment, I was too scared to ask, what then?
I know treatment options have changed over the last few years. Is this still true?
How much time is between treatments?
Best wishes all x
Hello
One of the things that I have learnt since my husband was diagnosed 10 years ago is that blood cancer research is a very fast moving world. New treatments are coming along all the time.
My husband has just started his third type of treatment, which was not even mentioned at the beginning.
The gap between treatments will depend on a wide range of factors. Some people may never need more than one treatment, others may have long gaps between treatments. Some may go from one treatment straight on to another.
Anything you were told 14 years ago will have been superseded by now.
All the very best with your treatment - let us know how you are getting on.
Beryl
Thank you x
I've seen mention of over 10 lines of previous treatments in clinical trial reports!
There are so many new treatments coming on line that you need not worry about 'after'. I was really worried about having chemo, but just in time for me, Venetoclax and Obinutuzumab became available. It’s a year long treatment if all goes well, then I hope for a long remission. You will only need another treatment if your CLL ramps up again (which may not happen) and if it does there are plenty of other new treatments to try. 14 years ago things were very different!
Chrisx
I think what you have to understand that after treatment and in remission; you then wait and it could be years before another type of therapy is needed - when bloods get bad enough for treatment.That’s why we all study remission times for different treatments. But this journey is personal to you. You may do better than others or worse but science is increasingly on your side and remission times get longer.
Thank you for your replies, I feel more like I should be almost looking forward to treatment and feeling better now! 🤞🙏
Hi lemonbutterfly,
I was diagnosed 3 years ago. At the time of my diagnosis, there was only FCR (classic Chemotherapy) available on NHS for someone with my markers (there were trials of course).
I will be starting treatment in 2 weeks time and since my diagnosis 3 years ago, there are more options available - Acalabrutinib, Obinutuzumab and Venetoclax.
The treatment landscape changes so quickly that one cannot really plan for the future. Who knows what will be available in 3 years!
I did ask my consultant about future treatments too and she just said, there is no need to plan for that now, new treatments are being tested and who knows what else will be available should you need treatment again.
All the best ❤
Treatments are constantly changing. I started with Ibrutinib which didn't agree with me and switched to its cousin Alacabrutinib.
I live a normal life taking 2 pills a day, 12 hours apart. I have occasional bruises and drink lots of water. That is it. I wish you lots of luck and positive energy.
Thank you, I feel pretty good after these replies 💖
Hi Lemonbutterfly
You didnt mention the specific treatment?
I began taking Acalabrutinib almost two years ago in a clinical trial and have enjoyed excellent results.
My clinical trial period lasts for four years.
My current understanding is that I will have to continue taking Acalabrutinib for the rest of my life.
Therefore as this drug has worked wonders for me I wont have a "cessation" point.
Of course if your hubby is on a different treatment could be totally different requirements.
Good luck with the treatment.
I was diagnosed Nov 2020 Stage 4 unmutated with 100% marroe infiltration... only picked up on my annual routine blood test with low Hb and platlets with a nora white count. I went straight to O and I, and within 240 days I was clear and in remission. I am now on acalabrutinib twice daily and that will continue until it stops working. Living a full pre CLL , pre Covid lifestyle and enjoying even minute. Bloods checked every 28 days and they must be OK as no one has called from my onology unit. The drugs are great.
Hi Lemonbutterfly I was diagnosed around 12 years ago First treatment was chemo and success was very short Second treatment(Ibrutinib and Venetoclax) was in a 2 yr clinical trial and I have been in remission (off treatment) 1 year and 7 months YAY! Now just living my life and enjoying my remission, realizing if or when it ends I will go back into watch/wait. From there I would stall with all my crazy remedies that work for me until treatment is absolutely needed again By then the menu of CLL drug options will have expanded even further...thanks to all the people who entered clinical trials. As I look back I can only think of how far we have come. I am so grateful ! Best to you with your treatment! Catnap7
Admittedly I have become quite stressed this past week with treatment near, after being quite calm for a while. But, as I shared in another post, I had the unique experience of having an oncologist who was out of haematology for a decade and had just returned, and he was shocked at the number of new, and in his words “effective” treatments. He is involved in research, and when I asked him if the progress - I think I used the word “revolution” in treatment would continue, he shook his head negatively and said something like (my memory is fading over the exact words), “no, we are on the cusp of the real revolution. We have learned more in the past few years than all previous, and this will pave the way for profoundly improved therapies”. I am sure I am butchering his actual words, but that was definitely what he meant. And he wasn’t saying it in a ‘cheer me up’ way, he was just being calm and rationale. He added something about the next treatment challenge would shift to him, in deciding which of the increasing number of options was best. So the answer to your question is when and if you need more treatment, we don’t even know yet what will be available. Thanks again to the heroes who do those early trials.
Whatever was correct 14 years ago, is no longer the case. This is true for many other diseases, not just CLL. Medical research always continues. If you want to read about a series of ups & downs, read my profile. My first treatment was considered a failure; it stopped new growth but didn't kill the CLL cells already there. So if for some reason there are problems, or things don't go as anticipated or planned, don't get too discouraged! Just keep plugging away until you have success.
Hi Lemonbutterfly,
As you have heard there are many treatment options now versus 14 years ago. You will go in remission for a long time and then on W&W again and finally another treatment, if needed. Each treatment will put you in remission for many years. So, relax.
You may want to find out your IGHV mutation status - are you IGHV mutated or unmutated? And any other FISH abnormalities?
All my very best
Obinutuzumab Treatment--What to Expect
Infection after treatment forCLL
What is happening?
Fitness during and after FCR treatment 
Feeling worse after FCR treatment.
