I was admitted to hospital with a suspected pneumonia 3 months after the birth of my second child and following a blood test was told I either had HIV or Leukaemia. Turns out it was CLL, which at 36 was a bit of a shock.
Since then I have been on watch and wight with steadily worsening symptoms, rising white blood cell count, anaemia, big lymph nodes, more lymph nodes, weight loss etc.
I haven't told may people about it as I didn't want it to be part of my story, I didn't want it to be an excuse for not doing things, I didn't want sympathy. I think looking back i have probably been in denial about it.
Now at 38 with 3 children and a demanding job I have increasing issues with fatigue. At the time of life when i most need energy I have the least.
So I have approached my haematologist and asked if I could be treated. She has mentioned two trials, the FLAIR trial and one with acalerbrutnib. I've just had a bone marrow biopsy and have a CT scan next week. So let's see what happens.
I’m looking for advice, experience and hope.
Ed
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Direstraits12
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Hello Ed, and welcome! I just had to start treatment last week, and I also have a demanding job. I was presented the trials, but since they take such a time commitment, I said no. My work location and my cancer center are 45 minute drive. I couldn't be going back and forth this month.
So my CLL Specialist put me on Acalabrutinib. I, like you had fatigue and enlarged lymph nodes. My spleen was not enlarged.
I can feel the Acal working. My large neck nodes aee nearly gone. I feel very good (got a lot of my former energy.back). I started one week ago today!
My doctor has spoken to me about adding Venetoclax at a future date.
I have met personally two folks who were on FLAIR trial. One is retired, and the other runs his own business. Both are doing great and are considered to be in remission.
I am in USA. Acal has a wellness program and they pay my out of pocket expense because I have "commercial" health insurance.
Hi I am on the flair trial. I drew the Ibrutinib and rituximab arm, which no longer exists. Now I believe you get ibrutinib only as trial showed no difference in results by adding rituximab.
I had rituximab for 6 months only and had no side effects. I have been on ibrutinib alone since. I am now 30 months in and doing very well. There are varying side effects on ibrutinib, some get none, some a lot and others like me a few very manageable side effects.
I lived a normal lifestyle pre corona and hope to continue post corona.
You do not say much about the acalabrutnib trial.
My understanding is that acalabrutnib is a second generation ibrutinib which for some, not all, had shown fewer side effects than ibrutinib.
On the Flair trial you are randomly selected to receive 1 of what is now 3 treatment arms. FCR, ibrutinib and ibrutinib and Venetoclax.
My experience of being on a trial has been very positive. I have been well cared for, well informed and feel very safe with my team.
I wish you good luck which ever trial you decide to participate in. Keep us informed of your progress.
I have been following the flair trial and results quite closely. It all seems very positive so far. I’m glad it’s working, It gives a lot of hope to hear from people who are doing well like yourself.
I like the idea of all the support given by the trial but not necessarily the uncertainty of which “arm” you end up on. I really don’t want to have FCR when there are targeted therapies out there.
The acalabrutinib was something my haematologist said was available on compassionate grounds and was “like the grand child of Ibrutinib.” I’m hoping to find out more on here.
You've come to the right place for advice, experience and hope. Sorry you need to be here at all - as are you no doubt - but the group here are good on all three of those.
There may be times you need to vent or look for a bit of a boost - they're good on those too and remember there are no silly questions - and we've all been there.
All the best with your trial - and everything else.
My heart goes out to you, this should be the best time of your life. The current target treatments offer brilliant results with little toxicity compared to chemotherapy so there is hope plenty of hope, almost certainly for decades of good life and possibly a cure.
Before you make a decision about FLAIR or Acalabrutinib you and your doctor should know what your genetic tests results are. Do you know if you've had them done and what the results are? They might say something like 11qdel or trisomy 12 . The other test I would want to know about is the IGHV mutation test which will tell you if you are IGHV mutated or unmutated. These are both blood tests.
All of these results affect your chances of a sustained and durable remission with FCR chemoimmunotherapy, which is one of the arms of the FLAIR trial.
The acalabrutinib is available in the UK at the moment, under a compassionate access programme, which means it is being offered free to the NHS for all treatment naive patients, irrespective of your genetic results. This is because of the COVID virus and doctors are reluctant to start very immunosuppressive treatment such as FCR at this time.
A bit more about the recommendations for starting treatment at this tricky time are here:
Acalabrutinib is a newer form of Ibruitnib with apparently less side effects and you would almost certainly be able to work through your treatment with no problems at all. It is a very effective oral drug and will work well irrespective of your genetic and IGHV results. It would be my choice.
This is very brief because it's easy to get overloaded. When and if you know your results, come back to us and we can all talk again.
I love your picture. Made me smile: changed priorities indeed.
I think you offer sound advice. Acalabrutinib would be my preferred option but I don’t want to get my hopes up at this stage. I shall wait for all my test results to come through and see what the haematologist says.
I think that sounds eminently sensible. One slight word of caution, as I mentioned before, that the Acalabrutinib may only be available whilst the NHS is in the grips of the pandemic. So if your doctor feels you meet the criteria and treatment would be soon anyway then it may be best to make a quick decision to take advantage of this.
Let us know what your results are because there is a chance that you could be 17p del or TP53 mutated. If you are then you would be treated with Ibruitnib, a non chemo option similar to Acalabrutinib, but I would still opt for Acala because of the better side effect profile. Your treatment would still be free to the NHS for as long as you needed it.
So much to learn after a CLL diag. Most importantly its a long road ahead.
You could share some details of your CLL "type". This does feed into treatment decisions, and hooks others with the same results to share their similar experiences.
CLL is a very varied condition.
Meanwhile take time to read the PINNED POSTS.
Use the Forum Post SEARCH facility. There is a lot of data on this site.
Our Admins are super efficient at ensuring quality information which is so hard to find out on the
When you say specialist do you have any one in mind? I read about the guy who runs the flair trial up in Leeds I think (uk). But I wouldn’t know how to go about contacting him.
Sorry if this is a silly question. I’m just not exactly sure what a specialist is!
I have a haematologist who works in the oncology/haematology unit in Peterborough but I don’t know if she is a consultant. I think she’s good. I like her so I don’t want to transfer but I might ask my GP for a referral with regard to a second opinion.
I think she discusses my case with the other haematologists in Cambridgeshire. So I feel I get more “minds on” the situation.
it’s useful that you like your Haematologist. Before you start any treatment you may want to get a second opinion and then I am sure someone here can suggest someone when all this nightmare is over. The important thing is to stay positive.
Someone in your country probably on this list should be able to help you better than me. I live in the states and could make suggestions here, but not England. A specialist is a Hem/onc who sees mostly CLL patients, probably is involved in research or clinical trials and is up to date with all the latest treatments
Welcome to our group. My husband was diagnosed five years ago and has been on ibrutinib for about a year. There is so much to be optimistic about. New treatments are in development while the existing treatments are very effective.
I don’t know if the doc will decide you are ready for treatment, that will depend on test results. If you don’t have a specialist, I would suggest finding one. Keep us posted, we are here to help.🙏
I agree with what Jackie wrote. You could get better advice if you knew your FISH and IGHV markers and shared them.
That said, I think regardless of your markers I would choose the certainty of a an acalabrutinib trial over the coin toss of what arm you get in Flair trial.
I think Cll treatments are evolving and getting better each year. So I have gravitated to the do the least harm now approach that keeps future options open. Acalabrutinib could work for you indefinitely without a lot of known serious side effects.
Cll is fast becoming a manageable chronic illness that can be managed for years, if not decades. I personally would take acalabrutinib and bide my time while all the clinical trials with the new drugs play out. I think in five years or less there will be more clarity on what drugs you might add to acalabrutinib to try to get a deep and possibly permanent remission.
I follow your posts at lot. You’re scientific explanation are great.
I have a CT scan Monday then hopefully a follow up with my haematologist in the week. Once I have my markers I will share them. I think you’re right though the certainty of the acalabrutinib is better than the possibility of FCR on the flair trial. But I don’t want to get my hopes up just yet.
Thank you for replying. I look forward to your next post
Welcome. I know you would much rather not be here!! I don't have any advice to add to the excellent posts above, just wanted to say hi and try not to over think. I hope you have a doctor you trust who gives you confidence. Very best wishes and remember we are always here even if you just need to let off steam!
Some people see hematology oncologist for their CLL. I used a local hematologist. When it came time for treatment my hematologist suggested I get second opinion with a CLL expert specialist. One was out of state and one was 4 hours from me. These are hematology oncologists that work at a cancer center. Sees patients but mostly does research and administer trials- when a new combo of medications come out- patients who qualify due to their markers, then become patients of only that Center and while taking the new medications, get tested and monitored.
Experts/specialist are very important to either have as your doctor or available for second opinions. 💕
Hi Ed, I won't be able to advise you on the type of treatment. Just wanted to say hi, I was diagnosed last year in July, 39 years old. It sucks knowing you have this disease at such a young age...this site gives me hope and optimism though. I also have 3 kids and work...I'm on w&w. A specialist is not just a regular haematologist. I see a haematologist at my local hospital in London - he's lovely btw and I really like him, but also a CLL specialist (mine is at the lymphoma clinic - a haemato-oncologist) at St Barts. I just asked my GP to contact them to be honest with you and he was very helpful and got me referred very quickly. You should find a specialist easily if you let people on here know where you live, they will advise you. Look after yourself.
Lovely to hear from you. 39 is too young, I hope you’re coping well.
Thanks for taking the time to clarify what/who a specialist is. I just googled my doctor and she is a consultant haematologist, and she is lovely. But a second opinion form a specialist is starting to sound like the next step once the test results are in.
So sorry you got clobbered with this diagnosis at such a young age, with such a young family. If you don't have the right markers, don't have FCR because it clobbers you a bit. If you do have the right ones for it, then it can work really well. But I'm hoping you get to go on one of the new ones.
Quite a few of us work full time. I bet you feel like you're wading through treacle wearing lead boots right now.
You will feel better. It's amazing when you do. You realise then how rubbish it's been.
The people on here will be there with you at every step if you need. Like they were for me.
I do sometimes feel like I’m running through treacle. Good description. I sometimes worry about whether the call is getting worse or I’m just ageing badly. Not sure which is worse!
Don't beat yourself up. It's the CLL and you're doing your best. That's all you can do. A stressful job and a young family is as hard as it is lovely. You will feel better and it will get easier. I've wasted so much energy getting upset I couldn't be the same as I was before all this kicked off. Be kind to yourself. Nic
Hi Ed. I was diagnosed in Nov 2015 after being admitted into hospital with pneumonia. Indeed it is quite a shock. I chose to keep it to myself for a while to take stock and didn't want sympathy. Eventually told my friends and the support was great it was a relief to get it out in the open. I have documented my journey from the beginning to present day, ups and downs. Please feel free to browse, and I hope it is helpful. There is hope and the good people here will support you and give advice. Any questions ask away. Stay safe and best regards.
I just checked out your posts. What a journey. I shall delve deeper when I have more time.
I told a few people at work recently, I felt my colleagues deserved an explanation as to why I was on the vulnerable list. Like you say it’s a relief to get it out in the open.
As it happens I start a new job in September. I’m hoping there an understanding employer!
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