CLL Support Association
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Thoughts on CLL treatment and watch and wait

I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment.

1. Why do we watch and wait?

As I understand it, the reason is simple. The risks of the drugs currently available (especially FCR chemo) is too great for the benefits that an early cll person would achieve. What I’ve been told also is that whilst some people see an improvement in fatigue for example with treatment, some don’t. And some actually experience a worsening energy levels not just during treatment but after. And so for the moment the feeling seems to be that even the newer more selective drugs are not selective enough to warrant their use in early patients.

2. Why FCR may still be best for some patients?

There’s a good reason we are still running a trial in the uk which compares FCR to ibrutinib alone or in combination: we don’t yet know what is best for everyone.

FCR is chemo. But it is not as harsh as some chemo. Nonetheless there are known risks of dna damage and the risk of later cancers. Why would anyone want it you ask?

Well we know that many people (not the 17p deleted, however) do well on FCR. It can buy as much as a decade in some cases before treatment is needed. Often less of course. But during that time of remission new drugs are coming out, and we will be becoming more skilled at using drugs that we already have. Best to delay the use of the new drugs some may say.

3. Sequential treatments

Often a treatment flow will go something like FCR, hopefully get a response and wait, then ibrutinib hopefully get a response and wait, then if you get another relapse venetoclax.

The idea here is that as you use a drug, after a while the illness evolves to be more aggressive and resistant to that treatment. At which point you don’t repeat the old treatment or continue it you switch.

This is all assuming we can’t cure CLL outside of a bone marrow transplant.

But some of the long term data with FCR looks suspiciously like it just might be a cure. People seem to stop relapsing after seven years. In other words if you make it that long, it’s possible you will never relapse. We still don’t know yet if these people will relapse say twenty years down the line. But for that group, they are certainly at least getting a long remission.

4. Combination treatments

FCR has evolved as the gold standard chemotherapy due to trials that showed clear superiority in combining these three agents (one of which isn’t technically chemo) over using only one of them.

Logically this makes sense as if you are hitting a person’s illness simultaneously in three different ways it is less likely to develop resistance and just might be eradicated completely is the hope.

5. What about combining the new treatments?

There’s been a lot of excitement about the combination of ibrutinib with venetoclax. Since these drugs are both specific to killing lymphocytes but do so in different ways perhaps this combo could be the new FCR. Speaking of FCR another option might be to combine ibrutinib with the R of FCR, rituximab. Or who knows maybe use all three together.

If we combine all the main weapons in our arsenal together do we get a better, deeper,longer response? Or possibly even a cure? Or do we just use up all our available bullets so that when the next relapse happens our cancer is resistant to all the currently available treatments?

6. What about a softly softly approach?

A few people in forums are talking about doctors who have tried gentle therapy. For example R on its own, or low dose ibrutinib. Sometimes in people who are not yet really sick enough to justify treatment under normal protocols. Will this help people as some report? Or is there a risk that this softly softly approach leads to clonal evolution And resistance developing early in the disease?

It feels like a bit of a minefield doesn’t it?

My own gut feeling for what it’s worth is I’m not sure whether FCR or some form of more modern treatment is better for me when I need treatment. I’m 13q but unmutated. So the jury is out on whether FCR will give me a good response for all the pain and risk associated with it.

But do I want to take the responsibility on my own head for rejecting FCR and trying to get it via my private insurance when I need treatment? (Yes some do have some private insurance in the uk.) Not sure really.

This is why I keep banging on about the UK FLAIR trial which I think needs a lot more publicity than it currently gets.

If you are cautious about FCR like me, you only have a 1 in 4 chance of getting it if you enroll. But the other three arms all contain ibrutinib (one monotherapy, one with rituximab, one with venetoclax).

The risk of being in a trial like that is you get the “wrong” arm. But we don’t know what the “wrong” one is. FCR may yet turn out to be better than ibrutinib in newly treated patients.

But, if I get the “wrong” arm for me, I was reassuring myself that the NHS would later on fund the other treatment. As I’m sure are many already in the trial. It’s this comfort that I’ve been preparing myself with that the recent funding decision takes away! Some of us like to think ahead and have our options clear. I know that’s not for all of us. But it is for me.

I actually wish there was a clearer road map. That we knew exactly what was the best treatment for me and when I’d need it. But we have to live with the uncertainty we have. And hopefully make it more certain for future generations of CLLers

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Why

Well the first few years when my blood levels went out of range i was still able to live a normal enough live that yes the risks would have not been worth it

But now 4 years in i don't heal heal well and i have already had to have one surgery on my right foot to just be able to walk and have put off getting my right shoulder fixed again because while its not great after the 18 months process to walk somewhat correctly again i will live with the shoulder pain

But now i don't live anything close to a normal life other than i am just able to make it through a day of work and its pretty clear my ability to do much more than exist with pain is all the future holds So yes the risk/reward is completely different now

Its not like i have not tried because after you run out of options at the Hospital for Special Surgery and your being treated for Polyarticular pain which i will have the results from the latest testings testing next week i am kind of out of options as no one has come up with a path forward and 6 specialists is quite enough

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Is your pain directly related to your CLL? Sorry to hear you are suffering so much.

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Well my first encounter with how bad something simple can really mess up your ability to function was in 2009 when i had a bad reaction to levaquin which took a while to resolve but i was back to normal in about 18 months

So having blood work records going back that far and records every 90 days going back over 5 years i have some facts

I know what happened and were my ALC was and while in terms of CLL it might not be that bad but bad enough to have a FISH and all the flow stuff at some point when when you have been tested for everything possible you have to consider that the tests that our coming back consistently bad are a factor

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Adrian,

I am a Virgo and I guess there is truth to what they say, I really like my stuff neat and organized and for sure I love a nice clear road map. As I got older though I started to understand there are zero answers for any of the really important questions...such as "what is the best option for me right now?"

Fact is, what might well be the best option for most everyone else, might not work so great for you. Sure, we can use that as a rough map...but at 52 I have yet to actually find anything even close to a clear road map for life's important questions. I guess I mostly stopped worrying about finding one 10 years or so ago.

Just make the best choice you can, with the resources that you have available...

Scott

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Thanks Scott. Learning to relinquish the illusion we all have of control is one of the toughest lessons that CLL teaches us

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Might well be the toughest lesson life has to teach us.

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You’re dead right and it WILL teach us that. People sometimes ask when they get CLL “will I die?” And they answer is of course a resounding “YES! But not necessarily because of CLL”. I say let’s take our fresh awareness of our mortality and turn it around into gratitude and zest for the life we do have. wp.production.patheos.com/b...

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I figure maybe not our kids, and probably not our grandkids but us, we are all going out the same door...since there is not much I can do about that I don't worry about it...might be CLL, might be lightning (my secret fear) or run over by a car....but for sure, sometime, somewhere, the universe will take care of that for me...I try not to help the universe along with its miserable plan for me...but still, nothing I can do about it.

Scot

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😅 I also try not to help the universe with its miserable plan for me . To that end I did not start treatment when it’s was first recommended for me; now nearly 8 years on I am being told again. I feel if I have the energy and am almost living a normal life : enjoying holidays and the joys of life. I have advanced CLL, not taking up their offers of FCR (8 years ago) or Ibrutinb (1 year ago). At least I don’t have horrible pains in my body. I am very scared of starting any treatment and that will be a very last option for me.

I wonder where I would be now if I had started the FCR treatment 8 years ago?

Although I have actually been admitted to hospital (first time) with a temperature of 39.4. I am being treated with iv antibiotics etc but I would rather that than Ibrutinib - for now.

As I see it - I have bought myself at least 8 years extra time. Let me see how much more time I can buy myself.

I like the way you think 👍🏼.

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I am not thrilled with the idea of FCR but that Ibrutnib seems like a wonder drug for many with CLL. I wish someone on the street corner sold that sort of stuff :)) But yeah, my hematologist tells me treatment when and if I need it...not one second before.

Scott

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My personal one is drowning....currently on stage 1 I find the thought of CLL or an infection being my route is strangly comforting. Though I do have to fight the tendency to think that having CLL means that that is my fate and nothing else will develope or happen to me.....😊

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Hi Adrian

My wife has been on W&W since being diagnosed 5 years ago and we feel that rose were years lost that we’ll never get back .

Her lymph nodes grew steadily in the neck area and her numbers kept creeping up with brings us to today where she can’t go out without a scarf ,is psychologically exhausted and has to start treatment soon .

Why not start treatment right after diagnostic if it’s unavoidable instead of waiting when the person is weak physically and mentally is something I don’t understand plus the different options are confusing, we saw 3 eminent hematologist and they all came up with different options .

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In brief, treating right after diagnosis is not (yet) standard procedure, because the risks associated with early treatment in general outweigh the potential rewards. All CLL treatments target healthy B-lymphocytes as well as CLL cells, suppressing the immune system and pretty well all of them can cause neutropenia, further increasing the risk of potentially fatal infections.

Reasons why you were given different options by the three hematologists could be due to their greater experience with what they proposed, or perhaps some had access to clinical trials not available to others. Nowadays most of us have a much greater treatment choice than was available just a few years ago. We also don't have enough data yet on the newer treatments to be sure which is the best choice for a given patient.

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Thank you Neil

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I tried to avoid chemo as long as possible through a variety of opportunistic infectious illnesses during 8 years of WW. I wound up with blood sepsis and serious complications in hospital for 3 weeks. I threw in the towel and had FCR while still inpatient. I was on monthly IVIG during the subsequent 5 years remission which ended with a hospitalization for a serious UTI. now on Ibrutinib for the past year I have one cold that required antibiotics.

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I am hopefully starting on the Flair trial in July, my personal views are i am at a stage in my illness that I need treatment so the choice of a trial or a

traditional course of treatment was really a decision I left to my haematologist as i don’t know which is best for me, but I do feel that with a trial I will be monitored closely and hopefully will see positive results fingers crossed.

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I wish you great success. All four arms have a great chance to do well with that trial. Thanks for contributing to future knowledge in this way.

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