CLL in 55 year olds and younger...Mayo Clinic Study

[Cllcanada]

Please be cautious how you apply these results...

There are limitations to this study, which are clearly outlined, but it is an interesting look at the impact of CLL on younger patients.

tinyurl.com/kps2aa9

[HAIRBEAR_UK Founder Admin]

Thanks Chris for the information although there are no great surprises it is not easy reading and you may not wish to.

I hope the finding that younger patient cohorts cared for 50 years apart still have the same median OS.

Will spur the clinical research community to focus a little closer on our group..

Nick

PS thanks for the cation about how these results and statistics are interpreted and applied.

[PaulaS Volunteer]

I like the purple flowers, Chris. Looks like you have found a way to put good-sized images on this site....

Paula

[Cllcanada Top Poster CURE Hero in reply to PaulaS]

I love echinacea flowers!

[Prudie]

I found it quite upsetting; fitting into the study category and not raj stage 1 when diagnosed. Hard to get positives out of this or to remain upbeat......

[Dave3579 in reply to Prudie]

Morning Prudie try not to get too down beat, you need to read the last couple of paragraphs again. this is a historical report and drugs for our disease have improved greatly since this report was compiled. I too used to read all the reports across the internet especially when I was first diagnosed in Jan 2013 and totally convinced myself I would be in smart suit and wooden box by June 2013. Like Chris always says Find yourself a CLL specialist and put your faith in them, be proactive in your care though Lots of Love Dave

[Prudie in reply to Dave3579]

Morning Dave, thank you for your reply. I am extremely proactive in my care and have good relationships with medical professionals. I understand greatly the need to remain positive and perhaps in hindsight I responded too quickly with my inner thoughts which remain the same I'm afraid.... However onwards and upwards not out of choice we must continue to walk this unpredictable path which is cll. Apologies for the negativity though, been a bit of a roller coaster for me lately and that's without the CLL!!!

[sparkler in reply to Prudie]

Prudie - don't apologise for feeling negative. It's a perfectly valid and human response and I don't believe that anyone here feels positive all the time........ That would be impossible.

Life can be tough and especially for us; we shouldn't deny this or how we feel.

sparkler x

[HAIRBEAR_UK Founder Admin]

I have reflected on this as a younger patient diagnosed at 47 now 50. - I can put some positive spin on this and see possibles for the future that this report points to.

Although this new data incorporates the effect of better prognostic testing and treatments involving monoclonals it does not include the latest small molecule pathway inhibitors in trial. There are too many novel treatments to name entering trial and potentially changing the treatment landscape for the future.

The younger treatment naive will be included in trials of these for example the latest CLL10 trial opening in the UK is for previously untreated patients considered fit to have FCR. The trial is to assess whether Ibrutinib (PCI-32765) in combination with Rituximab (Ibrutinib+R) is superior to the current standard treatment of Fludarabine, Cyclophosphamide and Rituximab (FCR). There will be more and judging by their early performance in older & less fit patients running out of options where they have to be ethically trialled first then OS in younger patients may radically improve.

Also this study identifies the importance of prognostic testing at directing clinicians to identify populations that may benefit from early treatment in modern clinical trials. This could become a major changing factor of these statistics. It was at a recent CLLSA meeting that a UK leading CLL clinical researcher discussed with us that some of the novel drugs in trial may have the greatest effect when administered to those early in the disease course and treatment cycle- but ethically hands are tied. The landscape is changing and I believe that we are on the cusp of changes for us.

This is very much why CLLSA are discussing the development of an advocacy role to gain better access to new drug and raise the awareness of the plight of the CLL patient.

There are still many variables within this study data and remember it is from a cohort (group) of patients . There are far to many variables including future developments and the unforseen to use this information to guess your own OS.

I hope this helps

Nick

[Dave3579 in reply to HAIRBEAR_UK]

Prudie and Nick Thanks for your replies. I am very Optimistic about all our futures. I feel like early patients must have felt who were tried out on Polio vaccines. I feel 20 years from now CLL will be a cured disease, which I know does not help us in the mean time, but I am beginning to learn that I am more then a disease. Its strange, but I am more at peace with myself now, I don't take myself so seriously, have lost weight by eating sensibly and sleep better then I have ever done. I had been on antidepressants prior to diagnosis but I am coming off those darn things with doctors guidance and will be finished with them within 3 weeks!! Something I have found out since diagnosis is who my real friends are. Some people avoid me like I have raging Plague! I know they are afraid that by loitering with anyone with cancer might somehow affect their health, it might also be because they don't know what to say and I understand. I am doing the Lottery tonight, I wonder if the same people will forget their fear of the Big C if they hear I have 12 million at my disposal ..I can dream, Apart from bearing all on this site and another and to my GP and specialist I have boxed CLL up and take it out when I need to. I totally recommend if you have the energy involving yourself in something that takes your mind off your illness and you enjoy. In my case I treated myself to a cheap classic car and I spend lots my free time that I was spending dwelling on CLL trying to get parts for it and on car forums. Not every ones thing, but it works for me! My CLL specialist gave me strict instructions to stop surfing the net about CLL because it was making me mentally worse, I have taken this advice totally and apart from this site and 1 other and 3 blogs Dr Jeff sharman Brian Koffmans & David Arenson , I don't venture any further now!

Love to all Dave PS nice to be finally back on the site after technical problems

PPS forgot to name check Chris (CLL Canada) who really guided with my fish/cytology results when I was doing a Gecko and climbing the walls in my very early days

[AussieNeil Administrator in reply to Dave3579]

Good to have you back Dave! Thanks for sharing your experiences. You are far from alone in going through them and many of us can learn from them if we haven't already been through the same! Good advice,

Neil

[sparkler]

Prudie - I responded to you earlier but I don't seem to appear in Latest Activity (not for the first time). Just adding this, so you will see it....with any luck this will show up?

sparkler x

[AussieNeil Administrator]

I too feel we are on the cusp of major breakthroughs with CLL and further, that we have an increasing likelihood of surviving into the new era, when treatments either restore us to a normal lifespan or very close to it AND with a good quality of life.

Historically, cancer treatments were found by trial and error. It is only recently that we've broken away from that and moved to targeted monoclonal antibody therapies like Rituximab, where we understood the science behind why a drug should work - and subsequently proved that it did, while learning more along the way.

There is still much to learn about how CLL cells control their micro-environment and results from the small molecule trials are aiding our understanding here. If we can unravel how CLL cells suppress our immune system and prevent that from happening, we should be able to move away from the current combinations that knock down our CLL burden by brute force - often with collateral damage to our immune system. Getting away from treatments that do a number on our immune systems similar to that already being done by the CLL HAS to have a major impact on our lifespan.

While we are watching and waiting and engaging in trials that are moving us closer to that goal, I'm confident that sites such as this will do much to keep us better informed so that we can maintain our health to be around to see that future.

Neil

[Hidden]

Hi Prudie

I'm not as knowledgeable as others here who provide so much information and encouragement and help all they can, but I do understand how hard it is sometimes to stay upbeat and positive when life is doing it's best to make things as hard as possible. I think we have all been there at one time or another when we have to deal not only with our CLL, but cope with other things. However these days pass and better days come, so stay strong. I'll be thinking of you

and wishing you well.

Bub

[Prudie in reply to Hidden]

Sparkler and bub, thanks for the kind words and i can feel the warmth they bring. neil, nick and dave, am mostly positive too and very well read on upcoming treatments. i am just in need of some reassurance right now i guessand you have all given it so I thank you all xx I've missed you ! Aka deb

[jibs60]

Thanks for this Chris - compelling (if challenging) reading for those of us diagnosed young.

I've been thinking about the impact of CLL diagnosis on planning for the future a lot recently, especially as I have been looking at the responses of around 300 CLL people globally to this issue over the past couple of weeks. Many take the attitude of just getting on with life, as mortality is unpredictable anyway, and I concur with this to a large extent. However, it's clear from what people have said to me in the CLL survey that for younger patients, this is a greater challenge.

For me, this paper brings up the thorny issue of cytognetic testing at diagnosis. Standard flow cytometery at diagnosis revealed me to be CD38 negative, and mutated, but I haven't had FISH analysis for the more detailed markers used to predict prognosis as this is not offered as a standard prior to the need for treatment in the UK. This depends to some extent on where your care is managed of course, but Cornwall (where I live) does not have a consortium centre, and I would have a challenge on my hands I think if I wanted early testing. I discussed this with my consultant last year, and concurred at the time that knowledge of likely prognosis without any means of controlling outcome wouldn't necessarily be a beneficial thing. However, in the case of a currently incurable disease, a great degree of any control we have resides in how we choose to live with the knowledge of how things might play out, so I may re-think my attitude to prognostic testing at this stage after reading this paper.

Whilst I try to live in the moment, and take life as it comes on a daily basis, I've been thinking lately about the difficulty of planning for the future in terms of finances, retirement, and travel plans. The truth is, I expect my life span to be shorter now than I did prior to diagnosis (although I was always aware that this was a fragile expectation at the best of times), so this paper doesn't offer any real surprises. However, it makes me wonder if I should re-consider my acceptance that I should wait until treatment for FISH testing. If my prognostic markers turn out to be less than favourable, I may well have a different attitude to whether or not I should continue working full-time, or whether I should let the sensible concerns about paying off our mortgage take precedence over my desire to spend more time travelling...of course I know that things may change again with the newer treatments not incorporated in this study, but it has sharpened my focus on considering getting a clearer understanding of my likely disease progression in terms of how I choose to live my life...

I'm going to ponder this over the summer, and am seeing my consultant in September. Of course, it may well be the case that a need for treatment trumps any arguments I may wish to profer to support my freedom to choose testing should I want it. I feel very well at the moment, but my wbc is pretty high and steadily climbing of late...we'll see.

I'm also pleased to see the advice to closely monitor patients in terms of skin cancers, vitamin D levels and so on as I feel these are areas that currently require a high degree of patient pro-activity to get addressed. I think it clear that this should be led by clinicians in collaboration with patients, with Vit D testing and advice being a standard part of diagnostic work-up, and better communication between haeamatology and dermatology departments (my dermatology registrar, seen after seeking a consultation myself, and being told that there was no clear correlation between CLL and skin cancer by a locum GP, had no idea that there was a connection between CLL and skin cancers herself and was surprised to read the papers I gave her on the subject). I have never had any advice from any of my medical team to be careful in the sun, or vigilant about skin lesions...all I know, I have learned online through my own research.

Hope everyone is well, and enjoying the summer ... it has just rained quite spectacularly for around 24 hours solid here in Cornwall so I'm still being sustained by the experience of Greek sun (experienced from the shade of course), and blood-warm Aegean waters from a recent holiday in Corfu. It was quite amusing being the only person amongst a beach full of carefree bikini-clad sun worshippers to be swimming in a long-sleeved, high necked rash vest, emerging to sit under a tree sporting a massive hat and huge shades for good measure!

Love to all.

Jules

[Cllcanada Top Poster CURE Hero in reply to jibs60]

I was one of these younger patients also...age 52, 14 years ago! I have never had a FISH or BMB, but I have had a Richter's... no prognostic test would have changed the clinical course of my CLL, and I had the very best treatment available, nothing would have changed that either.

[jibs60 in reply to Cllcanada]

Hi Chris - this was exactly the kind of conversation I had with my (excellent) consultant. I know that the disease is so variable in its progression that prognostic testing can only ever give an indication of likely progression, not a manifesto for the future. I also trust my consultant implicitly to guide me through the best route possible for management, whatever course my CLL takes. I suppose the thing I'm considering more here is arming myself with as much knowledge as possible about how things might unfold...whether I'm more likely to fall into a particular camp of progression. It's an existential thing really .. probably about wanting at least the illusion of some degree of predictive knowledge.

I'm not convinced either way yet, but if I thought I was in the group less likely to do well, I may well make some different decisions about how I want to live now. Your experience makes it clear that there is no certainty with CLL ever, and maybe that knowledge alone should be enough in terms of thinking about how to live now... J

[HAIRBEAR_UK Founder Admin in reply to jibs60]

Hi Jules

Really interesting thoughts thank you for sharing them.

I am also interested in predictive knowledge that could separate out those that may not need to be over medicalised by diagnosis this may also reduce the number unnecessarily agonizing on "watch and wait"? Some clearly will not progress as fast as others. I guess after a while time self selects?

This popped into the inbox today; Current news: Published today by LLR. this article outlines how they are investing £7 million into three research areas of which several are CLL related and CLL specific..

SUPPORTING GROUND-BREAKING BLOOD CANCER RESEARCH - leukaemialymphomaresearch.o...

The one that caught my eye was under:"Driving smarter, faster diagnosis "

"Professor Duncan Baird at Cardiff University will develop a unique laboratory test to quickly and accurately segregate newly diagnosed chronic lymphocytic leukaemia (CLL) patients into those whose disease is progressing so slowly that they may never need treatment and those whose disease will progress more rapidly. He may even be able to adapt it for other blood cancer patients too. This direct translation of basic research findings into the development of technology to be used in the clinic seems particularly exciting."

Is it?

Nick

[MsLockYourPosts Passed Volunteer]

Dave - Your observation about the early trials of the polio vaccine took me back to the days when every parent was panicked at the thought that one of their children would end up in an iron lung, and as a child, seeing the pictures of large rooms full of children in them and wondering if that could happen to me. I didn't know until I was much older that two of my parents friends had lost children to polio. I vividly remember when the shot came out and the rumors going around the neighborhood about the red one hurting more than the other one. Of course, when we went in to get ours the vaccine was red. It was hard to think about the relief our parents felt that there was something to protect us with that needle coming our way. I do believe that we are close to a similar breakthrough with CLL.

Jules - You bring up some good points about life decisions. When I had a will done several years ago my youngest brother questioned why I was doing it then. It really didn't have to do with cancer as much as the fact that life is fragile and I wanted to insure that any of my animals who outlive me are taken care of. If I had a spouse or children I probably would have done it even sooner.

Like you, I stopped surfing the net - everything said I'd be dead in five years, and my diagnosis was at 55, so right at the cut off for this article. I'm still here over ten years later, plus the years before my diagnosis when it was clear something was wrong, but my doctors were ignoring me. I used to read every study posted on the reliable sites and then save them and reread them trying to understand every word. I have decided that I do not have a great scientific mind, so now I skim those for anything that might apply to me now and let the rest go. Much of what I was reading when diagnosed no long applies and there is an incredible amount of new information coming at us. I now have a great team of doctors in place and do my best to stay fairly current regarding what's going on in the CLL world, but don't really think much about my own CLL much unless my labs are off. Then it's a hurry up and wait until they can be redone, but so far, the few times there were issues they did not show up on the repeat labs, so CLL back in the closet, and on with winning the lottery. I'm planning a world cruise with everyone I've gotten to know on line when I win - big time party. Holding that ticket before the numbers have been announced, when the lotto is up in the 100 millions, makes for some very nice day dreaming.

Pat

[jibs60 in reply to MsLockYourPosts]

Haha - yes Pat ... I was hoping this would be the month that I scooped the million on my premium bonds so I could buy my Greek Island bolt-hole...excitedly checked my numbers, full of hope when I saw the 'congratulations you have won a prize this month' statement..turns out I scooped 25 quid!

[Quarry]

Just back from a great refreshing holiday...and read this. Scared me at first, as was 52 last New Year when diagnosed: but on re-read I am left baffled!

The cohort was taken between Jan 1995 and April 2012: this is a huge timespan, during which time treatments have evolved (especially towards the end of the period). So how are the numbers re OS (and to a less extent Time to Treatment) generated?

Interpretation 1: I assume paper talking about a sub-section of database who were diagnosed near 1995 and continued to visit Mayo clinic (gives time to enable OS to be measured etc)

Consequence: the ones near 1995 will have had very old treatments, so not surprising they followed old OS paths. Average OS of around 10-12 years was indeed expected end last century! So paper not really relevant to today's treatment world (certainly concerning OS)

Interpretation 2: I assume cohort was recruited during whole period (ie last ones in study were diagnosed in 2012)

Consequence: As above, the patients from 1995 will have had v old treatments. BUT the ones coming in at end of study will not have started treatment, let alone died (on average, assuming paper OS levels continued, they would keep going to 2024!) How are they incorporated in the data - am I missing something here? If using patients being diagnosed during whole period, the results (certainly around OS) will be very biased towards those coming in at the start of the period. So does this really ignores treatments from say 2005 (or earlier) onwards, so effectively ignores modern treatments?

What have I missed?!

Andy

[SuzeJc]

Hi, I've just come across this report, which I've found particularly stressful as a newly diagnosed 36 year old patient. It doesn't read very positive for under 55s overall. I'm in the UK so have not had any FISH testing. Early stage of CLL with no symptoms. Is anyone aware of any more recent studies of younger people with CLL? Or anything that might be a bit more positive for our group? Thank you.

[AussieNeil Administrator in reply to SuzeJc]

Don't forget that this study was done before the age of small molecule non-chemotherapy drugs, when treatments weren't affective against del 17 damage. Ibrutinib, Idelalisb, Venetoclax and more are now providing much improved survival statistics over FCR, BR, etc.

Neil (Dx under 55, 8 years ago at stage IV and still in watch and wait)

[SuzeJc in reply to AussieNeil]

Thank you Neil, that part is more reassuring. Are you aware of how valid/reliable the section is relating to unfavourable markers being more common in under 55s? Long may your watch and wait continue.

[AussieNeil Administrator in reply to SuzeJc]

Thanks! Cllcanada would be better able to reply than me with regard to more unfavourable markers being more common in under 55's.

Neil

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

I have no explaination... I was diagnosed at 52 almost 20 years ago... before we had markers, so I'm at a bit of a loss...

Above all I'm not a statistic... my disease is unique as are all others, so I feel uncomfortable in groupings like <55 yo.

You get my point...

~chris