When to have additional (prognostic indicator) tests done?

[Susanjc]

I was diagnosed 6 months ago and have seen the haematologist once. I've previously had cancer that required massive and life changing surgery, have suspected "pre-malignant" liver lesions that are "inoperable" despite resection being the usual treatment (I'm told by the relevant specialist) and now CLL. I'm 53 with a 15 yo son and a hubby who is struggling more than I am to come to terms with what this means. And I'm now in the public health system for ongoing W&W (due to rising costs of my treatments and fatigue stopping me working), and feel like I've lost control over what happens and when. My question is, when should I get more prognostic tests done (eg: FISH)? I see my specialists next week and no one seems to be rushing those tests... But I feel that I need to know more and prepare for the most likely future. Any ideas? Comments? My appreciation in advance, thanks folks.

[HAIRBEAR_UK Founder Admin]

Hi Susan thanks for sharing your story,.

What you describe many of us can relate to. I know I struggled with this myself four years ago, when my kids were preteens. I wanted to gain some control and be able to look forwards a few years to plan for my kids. I am a need to know person, did I need to make plans? I guess what I learned was that prognostic testing in early CLL may give an indication of time to first treatment in many but cannot determine outcome.

Not being required by your hematologist for six months may be a good sign as frequency of visits required is often an indication of how stable your disease is, are your blood counts and CLL also being monitored along side your other concerns by your general practitioner?

There was a very large definitive study of prognostics in early CLL patients carried out in the UK in 2012 this may be helpful

[b[Defining the prognosis of early stage chronic lymphocytic

leukaemia patients onlinelibrary.wiley.com/doi...

Chaya at CLL Topics reviewed this and translated it for patients better understanding “Doc, How Long Do I Have?” updates.clltopics.org/4336-... , in this Chaya provides links to aid with understanding terminology, types of test and prognostic testing Prognostic Indicators: Who, When, What and Why updates.clltopics.org/3695-...

These I found very helpful

Nick

[Cllcanada Top Poster CURE Hero]

It varies outside the U.S.... often FISH tests are done prior to treatment to stream 17p deleted patients for special treatment or clinical trials, transplants etc...

FISH tests can change over time, so early results can be wrong in some cases...

IGHV genetic test is expensive and probably not available clinically.

Zap70 has found to be inconsistent outside major CLL research facilities, so CD38 might be better marker, although it changes over time...

Something to discuss with your doctor.

[Newdawn Administrator]

Hi Susan and welcome.

You've had a rough time by the sounds of it and the CLL diagnosis 6 months ago must have been a massive double whammy on top of everything else. No wonder your husband (and son if he knows) must be reeling with the impact. Susan, I was diagnosed 22 months ago with CLL at 54 and have made the conscious decision not to have FISH testing at this time. It's not routine in the UK anyway and there is obviously a cost implication which must be another issue for you in your public health system (which I don't pretend to understand).

I have decided to let the progression of my condition dictate how much I need to know at any given point. I have 3/4 monthly haemo consults and carefully follow my blood results (as hopefully he does!) for changes, progression, regression etc. I discussed FISH early with my Consultant who looked at my quizzically and we both agreed it really wasn't necessary at this time. I don't know how your blood results are looking Susan or what stage you are so it's difficult to know whether you're likely to be heading for possible treatment anytime soon.

I appreciate your secondary condition must be a major consideration to you and perhaps you're wondering if there will be any interaction between that and the CLL. Naturally it's an immensely complex area and only your consultants can advise on that.

I like to know and to plan as much as possible (I have a family too) but I've asked myself what the FISH result could tell me at this stage that would a/ help me to plan treatment in the future when treatments are changing and evolving b/ my chromosomal make up may change in the interim rending the result only a 'snap in time' and c/if the FISH result indicates a poorer chromosomal picture and an unmutated status, how would that help me psychologically to stay strong and focussed in this battle in face of that unfavourable knowledge.

Now I know that approach doesn't suit everyone and it's perhaps easier for me to take that stand at Stage A when I'm not severely symptomatic. But if it's about planning suitable treatment plans, then I've decided to do that when treatment looks more imminent and face the realities then. At least at that point the result will be accurate and I won't have had to carry a possible additional 'burden' of a less favourable deletion etc.

Perhaps you think knowing will give you more control and certainty because at the moment it feels like it's taking control of you. I understand that but my conscious decision feels like it's put me in the driving seat.

Emotionally it sounds like a challenging time for you all and I hope you are able to talk these issues through with your Consultant and reach a decision you're happy with.

The other positive for me is that even for patients with unfavourable prognostic indicators, there are new trials and treatments on the horizon so I'm maybe basking a little in optimistic denial. But we are entitled to do that I reckon!

Warmest regards,

Newdawn

[Quarry]

A very good question. I too like to know what is going on and exactly what I have and how it works. On CLL, I am on W&W and am 54 and learning to be patient 15 months from diagnosis!

So I have asked this question of all my haematologists (the consultant and registrars (I have had 3 in the last 6 months - I think just natural rotations.....!!)).

My haematologists are annoyingly consistent in their answer.....no point in doing tests until treatment is needed (so guiding what treatment)......just because you have one type now, does not give any info on how your CLL will develop (the progression is so individual) nor what you MIGHT get later: it is unlikely we stick to one type over say 20 years! So knowing what you have does not take you any further forward.

AS Hairbear says, the fact they don't want to see you for months is a very good sign - your bloods must be stable and so disease is non-progressive at moment! Long may it continue!

Good luck!

Andy

[Mikey47]

All very different from my experience when I was diagnosed in London in early 2010. I had a FISH test and bone marrow biopsy, revealing that I have the 11q deletion and out of 100 cells examined, 66 were missing one copy of the ATM gene. The ATM gene is involved in coordinating DNA repair, but the 11q deletion also involves several more genes.

I received a copy of the bone marrow biopsy report and wouldn't have had it any other way. I knew what I had to deal with right from the start. I remained very healthy and active until a bout of sciatica literally stopped me in my tracks in 2012, and still hampers me 2 years later.

I had another FISH test and bone marrow biopsy prior to my Ibrutinib trial (Resonate2) and I haven't accumulated any more mutations and I also found out that I am only 1% CD38+. However, I had a heavy tumour burden in abdomen, chest and spine, which 11q- is notorious for and has dramatically reduced thanks to this game changing drug, Ibrutinib/Imbruvica.

I believe it is important to know as much about your 'flavour' of CLL as you can learn so when it comes to time for treatment you will have a better idea of what will work best for you. Of course, a trial should be our first option when that time comes and I believe that patients should make themselves aware of current and future trials that they may be able to access which may necessitate knowing your 'flavour' of CLL to meet the criteria for the trial.

Best wishes

Mikey

[Quarry]

Mikey

Interesting. I have been told a bone marrow biopsy will happen, but only later. As far as I know, I have not had a FISH test either.

I think I can accept that it is pretty useless knowing what mutation I have now, if I then have 10+ years on W&W. So why go through pain of biopsy?

By the time I need treatment, it might be a different mutation causing real trouble! The time you need to know is just before treatment, so helping select best treatment

Andy