It's brilliant to see such optimism, and to hear someone say that he can tell his CLL patients that they'll never need chemo...however, for those of us facing an imminent need for treatment now...those of us in clear and present danger that isn't going away while we wait until early 2014 in the UK to see if we can get a 50/50 chance of ibrutinib in the CLL10 phase 3 trial, I'm afraid it simply isn't true...
With a rapidly growing spleen, increasingly bulky nodes and anaemia/thrombocytopenia indicated by my blood tests, crashing fatigue and frequent infections, my 'choices' remain starkly limited. I could, against medical advice and the insistent warning signs from my own body, wait until early 2014 for that 50/50 chance, potentially missing the window of opportunity to start any treatment whilst I'm fit enough to respond well. Alternatively , I could get FCR now whilst I still stand some chance of getting a durable remission (given that there's a 50% chance that's what I'd end up with anyway).
After very lengthy discussions, and trading of research papers, current insights, and potential alternatives such as single agent rituximab (which is not advised for me due to the relatively shallow depth of remission in the face of increasingly aggressive disease, and the way it knocks other potential treatments out of the armoury down the line should they be needed), my Doctor and I both agree that in reality I don't have a viable alternative, so as it stands I'm due to start FCR the week after next.
Whilst I welcome the chance to feel better than I do now on the other side of chemo, I still find this frustrating beyond description, and made much harder to bear in the face of so many people talking about the brave new world of the future as if the present reality for many of us has just conveniently disappeared!
This is just my perspective from the 'squeezed middle' of the CLL community - those of us treatment naive patients, not quite in the past paradigm of treatment regimes, yet not in a position to participate in the future of small molecule front line therapy as our diseases demand that we are treated imminently. I know there are a few of around in the global networks at the moment.
I do not mean in any way to undermine the very real hope and excitement we all feel for the future, nor to dampen the spirits of those lucky enough to be involved in ibrutinib trials now or in the very near future. We will hopefully at least have them on the market for relapsed patients when the time comes for further treatment down the line. Nor is it to imply that FCR isn't a good treatment regime, with some excellent results in many patients. We are undoubtedly in a much better position than patients were a decade or so ago, and I am truly grateful for that. I think it clear though that most of us would prefer to avoid chemo if we could...
Rather it is to admit that this is a tough place to be right now, and to acknowledge that for anyone else in a similar position, and for those who may draw the FCR arm in the upcoming CLL10 trial. We will all need to find a way of making peace with, and retaining a positive attitude to our experiences with a treatment that is already being consigned by many to a rhetorical past , but that we must rely on to keep us alive in a present already overlapping with a future buzzing with hype and hope for another way...
Hope everyone is well?
J
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You describe the dilemma very well J and many will identify with the sense of frustration you feel. I really wish you and others were in a position to wait 'for the brave new world' that we are tantalisingly promised but in the face of your difficulties in the present, I fully understand that you need to seize the FCR treatment now. It's not pretty but it works and it works well for so many. And in saying that I don't mean to minimise the downside of it for one moment.
I genuinely wish you a trouble free treatment, tremendous success and a robust and very, very long remission. Please let us know how it goes. I don't know how far into the future we can realise a chemo free treatment response and I suspect that many of us will still be receiving it for many years yet.
I recall a similar situation 12 years ago when rituxan was in clinical trials. It didn't quite work out as envisaged, but rituxan has become one of the most important cancer therapies ever, and nothing gives a longer remission or overall survival than FCR, other than an allogenic transplant in some cases. I think people loose sight of this fact, sometimes.
I have noticed before, that if we go back and edit the first line or so of something we've posted, those changes do NOT register in the first line or so of our post that shows up in Latest Activity, or Newsfeed. Our original words are still there. (Like yours are, Marty). If we really want to get rid of the first line of our post, I think we have to delete the complete post, then start again.
I'm just saying this for information, not because I think you, Marty, should delete your whole post and start again. When people follow the link from Latest Activity, they will come to your edited version and not see the original words.
This is a known bug Paula; I'm not sure what would happen if you totally deleted your post and started again. I suspect records of both posts could appear in the Newsfeed/Activity pages!
Perhaps someone that has tested this could let us know?
Just testing again. This is the second time I've posted this test - having deleted the first one (hopefully completely). Now I need to see if both posts appear in Newsfeed/activity or not.
Well Neil, my first test post (of a few minutes ago) now does seem to have completely gone, from everywhere. (After I pressed the "delete" button that only appeared when I clicked the downwards pointing arrow next to the "Edit" button that is under my post). As a matter of interest, did you (Neil) get an email saying I'd responded to you with a message that said "Just testing".
I'd be interested to know if anyone (after doing a "refresh") still has my first "Just testing" message visible anywhere?
We're thrilled that you were able to get onto your trial, that you are in the Idelalisib arm and that you're doing so well. It must be a huge relief to have something else to fall back on after the remission from a previous FCR treatment has ended.
As jibs60's has so eloquently put it in her post, for those of us that are younger (under 65) or are treatment naive, these new drugs are not available to us. If we need treatment now, the majority of us in this situation have no choice but to accept FCR and hope for a long remission and maybe for a few of us even a cure. With FCR, in addition to that hope and the fact that those of us facing treatment know that far more is known about this treatment regime than the new trial drugs, there is also the benefit of knowing that once we've completed treatment, there is no need to take pills daily to manage our CLL or worry how long the drug will remain affordable to us.
Both paths (trials and standard treatments) have their uncertainties but doing nothing when the time has clearly come for treatment is an even poorer choice.
I hope that the risk that you have taken in going on this trial is rewarded by you being provided with long term subsidised access to Ibrutinib. After all, you'll be providing the drug company with valuable data on what happens with long term patients.
The Resonate2 trial, which I am on, is for the untreated comparing Ibrutinib and Chlorambucil (No contest!). Fortunately I am on the Ibrutinib arm. I have bulky adenopathy in abdomen and on spine, inhibiting movement (in particular, running and tennis, in my case) which is how I managed to get on the trial plus my platelets were below 100.
So far the nodes in my neck are back to normal and armpits and groin have substantially reduced. I have to wait for my next CT scan to see how my
abdomen (which feels much better) and spine are doing.
I should add that the trial is for 65 and above patients.
It is good to know that there are some benefits for being older than 65 when it comes to having a chance at getting non-chemo treatments!
Neil
Hi jibs60
Eloquently described dilemma, and frustration that the hopefull future treatments are not available yet, and indeed may be quite some time before they are. It seems to me you are taking the best option available to you.
I hope your treatment goes well, and that the desired result is achieved.
So well put J. I am sorry to read that treatment time is here and recognise how frustrating some of the hype and insensitive messaging contained in these broadcasts must be especially to the younger untreated patient. You have been following all this globally as part of your research doctorate so, must have a clearer picture of what is being discussed than many of us.. Can you explain the "squeezed middle"
As I am not at the treatment moment I cannot imagine how it must feel for you. . The day when someone "can tell his CLL patients that they'll never need chemo" is definitely not here yet.
Good luck with your FCR you must be fit with all the cliff top and beach walks you do, good preparation.
I guess you may feature even more in your work than you had anticipated. Hope to hear more about the work in the summer..Meanwhile keep us all posted
There is always the possibility that I may have FCR in the future. What happens after a year, when I stop taking the Ibrutinib remains to be seen. As I have the 11q deletion I would not be expecting a long remission either way, with FCR or Ibrutinib. The disease is still there and as Michael Keating says, with the 11q it will always come back.
At least I am helping with research by consenting to donate additional blood and bone marrow for the biobank.
Mikey from what I understood reading elsewhere, I thought once you were on a drug trial and it proved successful that the drug company picked up the cost of the drug for the rest of your life or until you changed drugs. chris/neil am I correct?
I assume you are under the threshold of sixty five or else you would be on a trial. What is exactly pushing you into treatment at the moment? If you are confident of a trial in early '14 then you could hold things back if you are totally against FCR, the tried and tested solution, with a blood transfusion and then a course of steroids and folic acid. This would help with your fatigue and anaemia, pushing your haemaglobin up and your WBC down, at least for a while. There is evidence of this type of treatment lasting as long as twelve months and there is always the possibility of repeating it, this could get you to your Ibrutinib trial. I suggest you discuss this with your CLL specialist as a temporary solution to get you to where you want to be, a lot will depend on what is pushing you into treatment now.
It's just a thought and worth a try as you seem very stressed at the thought of FCR and that in itself will not help.
Hi everyone - thanks for your responses,and support.
Marty - no need to apologise at all, but I am treatment naive and under 65, and the post came from that perspective.
Mikey, I agree that ibrutinib has its uncertainties too...I would be very cautious of seeing anything as a wonder drug at such an early stage of its evolution, and your trial contribution is important to build knowledge for the future.
The main point I was trying to make really was that facing chemo at any time is not something anyone would take lightly. To face it at a time where the CLL world is buzzing with hope for new treatments continually heralded as a huge improvement on the existing regimes makes it an even more difficult decision. Richard Furman's recent video on patient power discussed the obvious benefits of ibrutinib in direct opposition to the dangers of FCR in terms of clonal evolution, secondary tumours, and MDS further down the line. Increasingly we see this as a very polarized issue in the available discourse - FCR the devil we know - Ibrutinib the angel (even though we don't actually know it)... and that I think makes it more difficult to feel comfortable about FCR right now.
So Berrytog - it's not that I'm very stressed at the thought of FCR per se, it is more an observation that this is a difficult time to feel particularly comfortable about it given all of the above. Your suggestion for bridging with steroids and blood transfusions is an interesting one, and I will mention it to my Dr., but I'm not sure that that would do much for my enlarging spleen and failing marrow which are leading to the cytopenias...which are the reasons why treatment seems so imminently necessary. Looking at your previous posts, am I right in concluding that your cytopenias were of auto-immune origin - AIHA and or ITP? I don't think this is the case for me, so we might be comparing apples and oranges. Also, I think there are issues around exactly what treatment naive means for a trial and, whilst I need to check it out, I can't help thinking that transfusions and high dose steroids immediately prior to a trial might have an impact. I can cope with feeling tired for another 14 weeks (if indeed the trial does start in January), I just can't afford to get to a place where any treatment would be even more of an uphill struggle in the face of aggressive progression (my progression in the four months since I was last seen was very significant). I will give all of your suggestions some proper research in the context of my own disease though, and thank you for them.
Hairbear ... 'squeezed middle' is nothing more than a borrowed term from the current political-economic landscape to describe those stuck between two other groups or classes for whom more provision may appear to be being made...I was using it to describe being stuck between two time frames that may appear more comfortable places to be/have been ...it doesn't bear scrutiny - just a lazy rhetorical device!
Thanks newdawn, bubnjay and AussieNeil, and Chris...I will keep everyone posted, and welcome any further suggestions...for example, does anyone know of anyone who ever got into a very imminent trial early..?
Your post explains precisely the frustrations that I (and I suspect many others) are struggling with, though we can't always express it as clearly as you. (I too am treatment naive, but have been told to expect treatment within the next year, of either R Bendamustine or FCR) .
One thing that puzzles me about trials... Why do all trials have to give half the patients something that has been well researched already (eg FCR), to compare with results from a new drug? Maybe I'm missing something terribly obvious, but I can't see why they can't give all the trial patients the new drug, and compare results with data collected from people who've had FCR in trials in the past? They'd probably find more people willing to enter the trial, on that basis.
thinking of you, as you go through this difficult time...
Hi Jules, the dangers you mention of FCR are exactly why I wished to avoid chemo, especially with the 11q deletion (and the likelihood of a short remission) and my consultant in Bournemouth agreed. However, as we have seen, those fortunate to have the 13q deletion are likely to get very good remission with FCR and maybe not even experience relapse.
With the extensive lymphadenopathy I was way past time for treatment at Portsmouth but they didn't pick it up until I asked for a CT scan.
Well, I hope you get a good long remission with FCR if you don't get on to a trial.
I was interested in Mikey's reply, I am 13q but still it was thought that I needed Ibrutinib due to all my circumstances and maybe you could fit the bill. Professor Devereaux at King's College is running another Ibrutinib trial at the end of this year for people previously treated and under sixty five so I understand, maybe it's worth a call, he may start it earlier. Going back to your post, I was triggered by AIHA but my treatment with transfusion and low dose steroids for two weeks brought my levels up so that I could start treatment and this reduced my enlarged spleen as well. At the time during conversation I was told that it is and was a short term treatment for CLL, it is for this reason that I mention it as a possibility for you.
I was sent this link because I posted a question about the pros and cons of waiting to go on the FLAIR trial or taking the FCR option immediately. You've probably got this information already but I saw Professor Devereaux last Friday and he said the trial would start in the New Year. I took this to be January/February latest as I need to start Chemo asap but he suggested if I could manage my symptoms, I could wait to see if I am one of the 'lucky' 50% to be selected. I doubt he would have suggested me waiting longer than 3 months under the circumstances. At least I hope this is the case! I'm still trying to make up my mind whether to wait or jump in and get it over and done with.
Take care and if you move forward with FCR I'm very interested to hear your experiences as I may not be far behind you.
It is a problem, and one that is dominating my world right now!
have done some research on this too, and it does now look as if the earliest recruitment date will be the end of January, possibly February or March if the paperwork doesn't go through on time in December.
I seem to be in a very similar position to you, although my consultant seems less confident that I can hold out until next year in the face of my very evident disease progression, especially if there are further delays with the trial start date. They are prepared to let me wait with very close monitoring if I insist, on the proviso that if things continue as they are I am very unlikely to make it to the trial without treatment becoming an absolute necessity.
Like you then, I face the dilemma of FCR now or hang on, possibly reducing my 'performance status' (general fitness for treatment) for a 50% chance of ibrutinib whenever it happens next year. I also have the additional issue of prolonged absence from work, as I'm signed off now due to fatigue, enlarged spleen, infections etc., and can hardly afford to prolong that by an extra three months at least as it will take me beyond my six months full paid leave. I think I would definitely overlook all of this if I new I would get ibrutinib for sure, but the thought of all this waiting, worry, surveillance and symptom control seems like very high stakes with a 50% chance of ending up with FCR anyway further down the line when I'm less fit for a good response...
And then I think, but FCR is good and, despite its attendant risks, produces excellent remissions in the right patients. I'm 13q- and mutated (I think, based on my CD38 expression), young, fit (on the surface anyway), and so should be able to expect a good result as far as anyone can ever predict anything with this disease. My consultant is pretty sure that by the time I relapse, the small molecules will be available for second line treatment, and thinks that this is my best strategy - particularly as their long-term efficacy and safety for first line treatment has yet to be demonstrated. We are consulting with a CLL expert about my particular case, but as it stands I'm booked in for FCR next week, so unless we get a radically different perspective in the meantime, I guess that's what I'll be doing.
Professor Peter Hillmen is interesting on this - you've probably seen it, but here's a link to a video he made on this very subject. Of course, he is to some extent bound to say this given the current lack of access to first line small molecule drugs in this country, and the need to keep people alive (and as a bonus - willing to chuck their hats in the ring to trial FCR against ibrutinib) in the meantime. There is also a lack of overt acknowledgement of some of its particular dangers, but it's hard to argue with the positive evidence for this regimen for some patients:
Also - Chaya Venkat's amazing meta-analysis of FCR research is very useful, and might help you get the pros and cons of FCR a bit clearer in your head.
Very long, but so worth the effort, if only to spark some conversations with your consultant.
I think a lot will depend on your status at the moment, and how long you can wait if you want a shot at the ibrutinib. Sounds like your consultant is happy to babysit you until the trial, so maybe you're in a different place from me and can afford to feel more relaxed about sticking it out?
I'd be really interested to hear more about your thoughts and current status so we can compare notes. What are your bloods and cytogenetics (if you have them)? You can message me personally through the site if you'd prefer to keep that information more private. I made the decision to reply publicly to this as I think this is a very topical issue for many people who may be out there looking for answers and, like myself on many occasions, get directed here by finding these threads online. However, some stuff is too private for the public space, so if you want to carry on a personal exchange in the background, I'd be really happy to do that too. I'll message you now so you can just reply if you'd like to
Just wanted to thank you, J, for posting your reply to L publicly, so we could all read it. I'm sure there are many others facing similar situations, who will also read with great interest.
Cheers Paula - really don't want to be seen borrowing from Mr. Cameron, but would very much like to reclaim the sense that we CLLers are, absolutely without cynicism, 'all in this together'...
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