I've just reviewed treatments and am more confused!

[deveritt]

The range of medical opinions and videos, combined with and problems reading long posts at the moment (various reasons) are beginning to cause me some degree of anxiety, and adding to my confusion. So I'd like some straight, simple information, if possible.

I'm failing to understand this completely despite a lot of reading. Forgive my detailed questions, but I see no better place to seek relief my anxieties than here! I see my consultant in a month or so, and am awaiting results from my last 3 blood tests (which have been a real pain to chase up - consultant's printer not working, my GP failing to receive results that were sent…).

I'm 13q14 deletion mutated (pretty sure I've got that right) diagnosed over 4 years ago and at the edge of deciding on treatment (had none yet). I had swine 'flu and influenza A which in March-April 2016 led to bilateral pneumonia and a month in hospital. I had a history of chronic fatigue following a Parvo B19/rheumatic fever-like infection over 20 years ago. I was vitamin D deficient (now fixed for over 3 years) and low B12 (I have injections every 3 months).

After a lot of reading, this is how I sum up the current state for my mutated 13g del state:

- FCR is - as I understand - not advised as I'm aged 65 and had recent pneumonia

- Ibrutinib has side-effects but is available in the UK (I think?)

- acalabrutinib is less toxic and 2nd-generation but availability is uncertain

- other "TGR-1202 (PI3K inhibitors)" are in the pipeline (I've noted idelalisib, duvelisib and ofatumumab but have no idea what these do, how effective they may be, or what the long-term effects are because they're so new.

So I don't know how to assess the situation as I still don't fully understand what much of the more recent material means, despite trying, I can't tease out the facts relevant to my case. I also understand that response to treatment is individual, which kinda makes it even harder to work out how to make a choice.

Finally, in the UK I don't yet know what's available yet, or in which regions - I'm in the East Midlands. So I could wait and see as I'm still just managing.

Below were my last results, from a few years ago:

====

...a clone with heterozygous 13q-deletion (49%)

Karyotype: nuc ish 6 (CEP6 x 2, TNFAIP3x 2, PRDM1 x 2) , 8q24 (MYC prox x 2, MYC dist x 2), 11 (CEP11 x 2, ATM x 2, FDX x 2), 12q13 (DDIT3 prox x 2, DDIT3 dist x 2), *13q14 (D13S319 x 1, D13S25 x 1)*, 14q32 (IGH prox x 2, IGH dist x 2), 17 (P53 x 2, MPO x 2)

Vh 2-5 mutated (90.1)

[maggiesgrandmom]

The experts will answer you soon but I just thought I would get back to you for a little information. 13 q and mutated are both good prognosis results. It also seems as if you are on watch and wait and there is no rush to treatment going on so take a deep breath and realize that alot of the posts are about people who are in a more difficult stage than you might be. Everyone is so different. Information is so good but sometimes it can be overwhelming. Good luck.

[Newdawn Administrator]

Hi Deveritt,

I'm no treatment expert but this is my take on this. I think you need to consult the real experts in terms of your medical team because at the moment you're stressing over a range of treatments that may be either unavailable or contra-indicated in your case.

Age, mutational status and good prognostic indicators are all in your favour. The issue seems to be the extent to which your co-morbidities affect treatment options. Only the medical team can advise on that because I'm not entirely sure that pneumonia would rule out FCR completely or a gentler version like BR. Renal function is crucial however and the medics will assess your general health comprehensively before you settle on a treatment regime.

My understanding is that ibrutinib is not yet available in the U.K. t for treatment naive unless there's 17p/TP53 deletions or total clinical unsuitability for chemoimmunotherapy. You'd need therefore to ask whether BTK inhibitors are even on the cards for you as a choice (outside of a trial).

Has your specialist mentioned a preferred treatment option at all? Has FCR or a variation definitely been ruled out?

The question you need to take back is what treatments are recommended for your health status because there's variables and a scale they consider in this.

Hope that helps a little. It's helping and stressing you too getting your head round the complexities of treatments that may not even be on offer to you.

Best wishes,

Newdawn

[Hidden]

FCR is for those below 65 they say but people who are older have the treatment if they are physically fit. This means good liver and kidney function at least. It doesn't mean a jogger etc. but medical ailments may deny this treatment.

Obintuzumab is an option in the UK. What options has the consultant given you? When you know the options read up about side effects and remission times. Many of us who are criteria fit went for FCR because of the chance of long remission times. We then at time of relapse hope there is a very exciting treatment available.

[MilliePerth in reply to Hidden]

Very well put!

[Cllcanada Top Poster CURE Hero]

I think you are in a muddle about what treatments may be available. I would wait until your doctor discusses your options.

Some of the treatments you mentioned are only available in clinical trails, but there won't be many firstline trials. Zydelig (idelalisib) is not available first line anywhere.

Gazyva and chlorambucil, might be an option...

Here is a listing of current CLL trials in the UK.

ukctg.nihr.ac.uk/trials?que...

~chris

[deveritt]

I would just like to thank you all very much for your (as expected) thoughtful comments and information, the link to the trials is really useful too. I've had a few difficult periods lately, and this anxiety has been recurring during them.

I don't yet have any clear options and am still on W&W, but getting more fatigued. My previous consultant was a research-active specialist with an interest in CLL, Professor Martin Dyer (tox.mrc.ac.uk/research/dyer... and before he went full-time research told me that the new treatments he was working on were very promising: www2.le.ac.uk/news/blog/201...

So I feel confident I will get good treatment, but may need to make some decisions pretty soon, and have periods of… not exactly panic, but deep uncertainty and recurring feeling of depression about facing how things will progress and what treatment and trials I might have access to. I know uncertainty is the worst aspect and is feeding my own anxiety. I will ask my current consultant, and Prof. Dyer nearer the time, to check and make an informed choice - I hope- with their advice!

[Cllcanada Top Poster CURE Hero]

It doesn,t hurt to talk to a professional about your anxiety. I did many years ago, and within an hour, I came away with a new way of looking at my CLL. Its held be in good stead.

Ono-4059, is a Japanese version of Imbruvica (ibrutinib), now owned by Gilead.

It is felt to be better targeted to the task at hand with fewer major side effects, like bleeds and A.fib. There are a number of these second generation BTK inhibitors, probably the furthest along is acalabrutinib, perhaps a few years from FDA approval...

~chris

[deveritt in reply to Cllcanada]

Thanks Chris - I'll add this to my notes. I do see a counsellor regularly, but she's was ill recently (also a Cancer) so I'm only just beginning to get appointments again. Thankfully, due to various reasons, her services are free for me. The anxiety pops in from time to time, usually when I'm overwhelmed by things I struggle to keep up with, or when external stressors are high - both have been the case over the last 2-3 years, mitigated by some very joyful changes too.

I was investigated for recurring chest pains a couple of years ago (these still happen occasionally, am on 0.75mg aspirin), although only very minor irregularities were found. However, on looking up A.fib and CLL I found an interesting piece of research: newevidence.com/oncology/at... so will mention this to my consultant and also GP before any treatment choice.

[MsLockYourPosts Passed Volunteer]

Remember that when it is time for treatment that the FISH test should be redone, as markers can change. This insures that the treatments under consideration are the right ones for your particular CLL. It's amazing that we all have the same diagnosis but each of us presents very differently. I hope getting back with your counselor helps. Watch and wait presents its own issues.

[deveritt in reply to MsLockYourPosts]

Thanks, good heads-up. Added to my "notes for consultant"