Prognosis tests -

[Gartshore]

I have Stage A CLL - watch and wait. I've seen online that there are now prognosis marker tests. I wonder how people feel about these? On receiving my diagnosis, in August, I was very shocked. For a couple of months, I thought I'd like to have these tests done - they are not done routinely - but now I'm thinking it's best just to live each day. I don't feel ill, except for fatique (sometimes). What are your thoughts on this?

[Cllcanada Top Poster CURE Hero]

Some prognostic testing is of value but most isn't. It simply gives you 10 more numbers to worry about, many of which don't apply to you as an individual probably. FISH test are widely used in the U.S. for example, but we now know that each FISH marker has both an indolent type and a more aggressive type. These subclonal markers are extremely important to disease progression, so, the standard FISH test may group you into 13q or 17p but it doesn't say much about your specific CLL. In 14 years with CLL and now a Richter's transformation...basically a death sentence... no marker could have predicted my clinical course. NONE.

Markers put you into groups, but it says nothing about your individual disease. We each

have our own version of CLL and the new epigenetic research indicted that there are millions of genes switched on or switched off in error...no two patients are remotely similar.

~chris

[Gartshore in reply to Cllcanada]

Thank you so much for your technically informed reply, which is very clear and helpful. When I first looked at stuff on the Net, I did notice that USA sites seemed very keen on everyone's having his/her likely prognosis via these further tests. My mind does seem to glaze over re this kind of scientific data so it's great to be able to obtain clarity from you. It may seem platitudinal, as we have never met etc, but the latter part of your text, really took the wind out of my sails, inasmuch as, I see that you are having to deal with a Richter's transformation. I am very, very sorry and wish you the best.

[nobby00 in reply to Cllcanada]

chris can you tell me how long you have been diagnosed with richters? it seems my husband is being tested now for this, it says on his report immunophenotyping and cytospin reported as suspicious of transformation, the consultant has not told us what this means . hope you are well as he is at this time lin

[Cllcanada Top Poster CURE Hero in reply to nobby00]

Oh...I hope not... I would certainly wait until you get additional testing...

3 years... I was disgnosed July 2012., shortly after treatment for CLL and 14 years W&W

The gold standard in RT is a biopsy to confirm what type it is. The most common is diffuse large B cell lymphoma, DLBCL, (about 95%) followed by Hodgkin's and finally and rarely PLL.

Often a PET/CT scan is performed to determine the extent of the involvement, prior to treatment.

Much of what you will read on the internet is either old or wrong... stick to papers that are no older than a few years from major CLL research institutions, like the Mayo Clinic, MDAnderson, St Barts, German Study group etc.

Please let me know the tests result...feel free to PM me

~chris

[kavidacat]

Hello there,

I am at exactly the same stage as you are and, like you, I thought the same thing when I read about the prognosis tests. Also, like you, after I had considered it further I decided that for the moment, while I am still relatively well, I do not want to know. I guess we can always ask for the test at some later stage if necessary? Let's hope we don't reach that stage. I am all for enjoying what life I have while I can. Nice to read your comment and good luck!

[Gartshore in reply to kavidacat]

Thank you for your warm, positive reply, Kavidacat. I feel so much better knowing that there are others who understand exactly the feelings / emotions / thoughts that I am experiencing. I think that you have reached the correct decision. I concur - let's remain as well as possible for as long as possible and not spoil the moment by worrying about things that may never happen. Cheers!

[Newdawn Administrator]

Hi Gartshore, I share and understand your dilemma having been diagnosed with CLL just before you this year. I too am at Stage A and on W & W.

I discussed cytogenetic testing/FISH with my Consultant and agreed that this wouldn't be done at this stage as a/ I'd rather not know yet, b/ it's usefulness is more at the point of treatment c/ it can be an evolutionary process as Chris skilfully described and therefore a 'snapshot' at this early stage and d/ it's expensive!

I know there are conflicting opinions on this and some prefer to know their chromosomal profile for prognostic reasons but for me, I would rather not have this information at this time. Not because I'm in any kind of denial but simply because I'm not sure what additional benefit it would bring at this stage.

But I will be keeping a close eye on developments and monitoring changes in my condition and would be quick to discuss these with my Consultant (who is not a CLL specialist).

I am so sorry that your condition has progressed to a Richter's Transformation Chris and I certainly hope that an effective treatment regime can be offered to you. I wouldn't profess to be an expert on Richter's but like most people with CLL, live in fear of it's emergence even though it's said to occur in only 3-5% of cases. Cheya Venkat has anecdotally said its more like 10% however. I prefer the first statistic!!

I take the view that at present I want information that informs treatment not impacts on my emotional well-being. It would be an additional emotional burden to me at this time to have to juggle and extrapolate numbers and combinations that I may not fully understand and may in fact be no reliable indicator for the future.

Wishing you all well,

Newdawn x

P.S. anyone know why the answer box has shrunk to a tiny size, it's so difficult to work with.

[Gartshore in reply to Newdawn]

Newdawn - thank you so much for your prompt, excellent and helpful reply. I am in the same position as you are and you have sensibly and clearly thought it through. I totally agree with your stance and your reply has helped me considerably. I feel better for having read it. Kindest regards, Gartshore (aged 62, female)

[Hidden in reply to Newdawn]

Hi Newdawn,

I'm from HealthUnlocked - saw your P.S. question on here so I thought I'd respond

I know the reply box is small when writing long replies such as what you've done. If you see in the bottom right corner of the reply box, there are 2 tiny diagonal lines (tough to see, I know). If you put your cursor over them, you'll see a diagonal arrow show which allows you to expand the reply box down as far as you'd like.

Hope this helps!

All the best,

Lora

[dinkywoman13]

at my last hematology appointment in October i was asked to have a second blood test done and know that this was for the purposes of doing the genetic testing (FISH etc) I know that they are expecting to be treating me with my first lot of FCR at some point in the early new year.

Part of me wants to know the outcome and part of me doesn't, although i know that at my next appointment in January I will ask for the results. I know that for me it is important to know.

[Gartshore in reply to dinkywoman13]

Thank you for your reply. Yes, I think these tests are always done prior to commencing treatment. I'm on watch and wait at the moment. I sincerely wish you well with your treatment. I understand your sentiments. Good luck and kind regards. Hope to hear good news of how things go for you.

[kavidacat]

Hi dinkywoman, If I were about to have treatment I would feel as you do and want to know the prognosis/results of the FISH tests. At the moment, like others here, I am happy to get on with my life while I am well enough to do so. I do wish you the very best with your treatment. Keep smiling and hang in there girl! Love & xxx s.

[Cllcanada Top Poster CURE Hero]

Newdawn has touched on an important point about prognostic testing, and this has to do with quality of life QoL.

These numbers are a two edged sword. We all hope prior to testing that we fall into a good grouping, with a 15 year time to treatment. But few patients, I think are fully prepared for a poor prognosis. I have over the years seen people take a very serious mental downturn in their lives on learning their prognostic markers. The mental impact can be worse than the diagnosis of CLL in some cases.

I think if I was diagnosed in my 40s with a young family, then perhaps I would want to know, my markers, so some type of longterm planning could be done, but this is not for everyone.

Clinically, the only test that matters is FISH, and it is used to separate 17p deleted and TP53 mutated patients from all others, since they have aggressive CLL which does not respond to treatments like FCR, so they are either treated with other things like Campath, BR, etc, or directed to suitable clinical trials, if any are available, or to a transplantif they a age appropriate. So on a patient by patient basis, FISH tests prior to treatment is a wise idea.

On the Richter's subject, it is no longer a monolith of disappear, in fact there are two transformations, one CLL clonal driven, the other 'de novo', secondary cancer that appears. Both, seem to have their roots in a Epstein-Barr infection, probably mononeucleousis. Fingers are also starting to be pointed at fludarabine as a contributor..., but certainly Richter's can occur prior to any treatment. I think the 3% to 8% figure is conservative , and a new study to be presented at ASH suggest that the longer you have CLL , the greater the risk for transformation. I think once again we are dealing with the new topic of clonal evolution...that CLL is not static, but evolves over time.

Here is the ASH abstract on transformation.

ash.confex.com/ash/2012/web...

So, what prognostic figure do I use with Richter's the 6 month or the 18 month overall survival. Frankly, I don't care...neither applies to me as an individual...an attitude I adopted the day after my CLL diagnosis, and that has served me well for 13 years pretreatment. So every 21 days I plug into the RCHOP machine and hope for the best...

~chris

[stewie in reply to Cllcanada]

Hi Chris , thats the right attitude to take and all the best with RCHOP do let me know how you are getting on , from time to time .

Keep well

stewie

[MsLockYourPosts Passed Volunteer]

My doctors have done most of the tests in question - she doesn't believe in mutational status. In my case they were done originally, and redone about a year ago, as we were looking at treatment. I know they can be important if you are trying to determine which treatments you should or should not consider. Beyond that, for me they are just a lot of numbers which I obsess over when I get the reports, but then file away, as they don't change anything about what my CLL is or is not doing. Would it be better if I never saw them? Maybe, except that I cope best when I have as much information as possible.

Pat

[Gartshore in reply to MsLockYourPosts]

Hi Pat. That's interesting. I don't have a copy of my test results, although I know the figure for the B lymphocites. The consultant (charming, warm, very kind and very generous with his time = 1hr 20min initial meeting) was willing to give me a printout but there wasn't a printer! I have my second hospital visit to see the consultant in December. I don't think they routinely give out copies of all the blood results to patients. Now I'm wondering if they should. I'll need to decide if I want to have all the info. When I was getting my pneumonia jag this week, I could see all these results on the GP's computer screen. I bet the GP won't be familiar with the meaning of some of the results either! I bet that you understand all your own readings, having made the decision that you want to be as informed as possible.

Thank you for your interesting reply.

Gartshore

[Cllcanada Top Poster CURE Hero]

This recent paper by Emili Montserrat, MD a leading Spanish CLL expert and researcher discusses current prognostic markers and the move away from FISH tests to more accurate whole genome testing in the near future...

cancernetwork.com/leukemia/...

You must join cancernetwork to read, but it is free to do so...

[Gartshore in reply to Cllcanada]

Thank you. I'll have a look now.

[louise66]

Hi,

Personally I'm a need to know patient, and my consultants do 'fish' testing at diagnosis - which for me was negative. I asked to have my mutational status done and they did this for me. This showed that I have unmutated CLL. Although I felt I needed all the info on my condition, this was extremely hard to deal with. Tho in hind sight the fact that my counts were rising quickly, I think I was expecting this result. In fact i found this harder to accept than the CLL diagnosis! It took me a few weeks to come to terms with this result, but personally I 'm still glad I know.

We each have to do what we feel is best and make the decision on how we deal with this.

What suits one person may not be right for someone else.

Kepp well

Louise

[Gartshore]

Thank you, Louise, for sharing your experience. Yeh, it just goes to show that there is no 'right' answer to my question. We are all individuals. And you make it clear that we have to deal with the consequences (results of tests) of the choices we make.

Sincere thanks for your thought-provoking views.

Wishing you all that's good.

Gartshore (female, 62)

[Cllcanada Top Poster CURE Hero]

Louise

I'm curious about your FISH result. Usually it will group you as to a deletion or mutation like 17p, 11q, Trisomy 12, 13q, mixed karyotype, normal karyotype and a few rarer markers.

By negative do you mean that the FISH test found no markers? This situation is referred as a 'normal karyotype', which is not normal at all, but outside the ability of the FISH test to find any abnormalities...

just wondering..

~chris

[louise66 in reply to Cllcanada]

Hi Chris,

Yes you're right, my Consultants give my results as 'Neg Fish' but it does mean 'normal karyotype' and as you say thats not normal at all. All it does is rule out the usual markers that they are looking for.

Louise

[Newdawn Administrator]

Quick thank you to Lora for advice on enlarging the message box. Appreciated.

Fascinating discussion this.

Newdawn

[Myrddin]

When first diagnosed I was not keen to have to have the fish tests done - information overload. Though not normally done before needing treatment the consultant was willing to do them for me. A couple of years later I was ready to find out and had them done. Thankfully were a positive combination. Could have gone the other way so have to be aware - can't put genie back in bottle .... Nearer the time for treatment the test will be done to help guide treatment. Glad to know my results but could have been a different outcome so might have felt differnt then