I've been reading post after post on the various drug treatments used for CLL that it is hard to know what treatment I should aim for when the time comes. I find myself more confused than ever. Is the one pill a day the very latest and most effective treatment? Is that one pill kemo or something else? Can anyone help simplify a difficult topic?
Thanks in advance,
Kathy
Hi Kathy,
Unless you are anticipating needing treatment in the near future, it's probably premature working out which treatment to aim for. With CLL, you generally have considerable time - typically months, from knowing you need treatment to actually starting treatment. Also, if you have your CLL checked for genetic markers to work out which treatment would best suit you now, those markers could have changed when the time for treatment finally arrives - if it ever does. Further, generally your best treatment option is to enrol in a clinical trial. That way you can access exciting new drugs perhaps up to 10 years before they are approved for use - if they ever are. (Even a very good drug may not get government approval, or the manufacturer may decide not to market it for CLL for a range of reasons.) It's impossible to know what clinical trials will be available to you in the future.
With regard to which of the available treatments are the best right now in the USA, it still depends on your CLL genetic damage, your age and what other health problems you may have. We know that for some people, FCR may give them very long remissions beyond 10 years - even a cure. Others are doing very well (so far) on the tablet a day maintenance drugs like Ibrutinib and Idelalisib - but we only have limited data out to four years - and for a few very early phase patients out to five years. We still don't know how to get patients off those treatments which are costing around US$100,000 per year per patient just for the new CLL drug. And that's without including all the other costs for associated drugs needed to protect against side effects plus the regular tests and check-ups.
I don't know if that's simplified the topic or made it more complex, but that's how I see it 
.
Neil
Neil, I found that a clear and straightforward explanation. Thank you.
Years ago my (Australian) son-in-law taught me a valuable lesson. His philosophy is not to make a decision until you need to. (Just-in-time decision making) I have found his philosophy so useful over the years since I now often kick myself for deciding on something and worrying about it, only to find the original anticipatory decision overtaken by events and therefore out of date, and all the worry a waste of time and energy!
Dear Neil,
What a great answer. You simplified a very complex topic and I appreciate your intelligent reply. I am newly single and new to CLL so it has been a lot to sort out on my own. In my heart I am a optimist but I also know you need to have your facts straight. I am very content to be on W&W. I was just trying to figure this out in case things change. Do you think the drugs Ibrutinib and Idelalisib could come down in price? Perhaps if they were used more widely they could be produced cheaper. ( I realize you are not a drug manufacturer. ) When you enter into clinical trials as a patient isn't there always a control group? So yes if and when the time comes I will ask about genetic testing. Makes sense to me. I can't thank you enough for your kind answer.
Kathy
Hi Kathy,
With respect to drug prices, we can only hope that more new drugs are approved and that the new drugs find use beyond just CLL, so manufacturers see greater value in producing them. Hopefully larger sales coupled with pressure from governments and insurance companies will negotiate prices down.
With regard to clinical trials, these are designed in such a way that the new drug can be compared with an existing treatment protocol (the control group) to hopefully prove that it provides longer remissions with less side effects. (The control group may be an earlier trial with which patient outcomes can be directly compared.)
In double arm trials, there can sometimes be an option to switch if a patient doesn't do well in the arm they are assigned. If the new drug performs much better than expected, those in the control arm can all be switched to the new drug. Nearly two years ago in a double blind phase 3 trial where Idelalisib with Rituximab was compared with Rituximab and a placebo (the control group), those in the Idelalisib with Rituximab arm were found to be doing so much better than those in the control arm, the trial was stopped early and patients in the control group were given the option to switch to Idelalisib in a trial extension:
healthunlocked.com/cllsuppo...
gilead.com/news/press-relea...
Neil
Thanks Neil OK so the trials are subject to constant evaluation and in some cases they are stopped in favor of the patients
if need be. That is very reassuring. CLL is such a "small" group of folks that the drug companies may not be motivated to invest the time and money in the cure as they might be in more common cancers. Understandable. Perhaps a successful CLL treatment could be the key for a wide array of other genetic/ immune solutions. I will keep reading and getting educated.
In the mean time let me say thank you for your great answer and that I really like your hat!
Kathy
The FDA recognises that CLL is a rare illness and has accordingly assigned CLL as an 'orphan disease'. That designation provides a variety of incentives for pharmaceutical companies to develop drugs for CLL which would otherwise not happen:
en.wikipedia.org/wiki/Orpha...
Leukaemia research led to breakthroughs in early chemotherapy treatment for cancers (including cures for previously nearly always fatal childhood leukaemias), because it is far easier to monitor the development of cancer cells (including drug resistance) via blood tests than regular biopsies of solid tumours. Even where drugs developed for leukaemia can't be used for other conditions, research and development techniques established with blood cancers can be applied to solid tumour research.
Glad you like my hat. I bought it for Australia day last year and in addition to reducing my risk of developing skin cancer, it also saves me from battering my head on low lying branches when I'm wandering through the scrub keeping an eye out for snakes and ants while looking for photo opportunities. So it's looking a bit more battered nowadays!
One very important addition is that most CLL treatments get 'Breakthrough' designation in the U.S. which provides a faster track to FDA consideration... similar considerations in the EU
It also allows for rolling aporovals after the first time, so this speeds up the process...
Then outside the U.S. we wait and we wait and we wait... maybe some places approve funding...need to move... many CLL patients do...
~chris
Hey Chris,
My son in law is a Canadian living in the U.S.! So when I see your red maple leaf it always makes me smile! I agree with you and dislike all the red tape when lives are in the balance. Once there is a breakthrough cure I feel sure it will be accepted across the globe so take heart. We are all in this together. Thanks for what you do.
Kathy
Hello Neil,
I'm having a good laugh with my morning coffee I wish you could hear it! So funny! Your lifestyle sounds a little too rugged for me. Keep your hat on "ratty" or not if you are out there in the outback with low hanging snakes! I totally love you Aussies.
Yes I have read about the breakthroughs they have made with leukaemia and childhood cancers. Makes sense as you say because to test the blood is easier. Better suited for the lab and the patient.
Still laughing!
Kathy
Well said, neil
FCR... is goldstandard for younger and fit and not 17 p deleted...everything needs to be tested against it in two arm clinical trials...
Bendamustine/rituxan is less toxic but not quite as good in some areas... however for patients over 65 FCR and BENDAMUSTINE/RITUXAN are pretty much the same...
17p deleted the best currently is Imbruvica (ibrutinib) (it is 3 pills a day)
Also Gazyva and chlorambucil is approved firstline in some countries...
Wait until you need treatment, then assess the available treatments and new drugs in clinical trials...
~chris
cllcanada, thank you, this is a wonderful example of making a very complicated and worrying complexity understandable.
Thank you Chris for your thoughtful and very informed answer. I am quite content to be on watch and wait. Hope I am forever. It's just that in all other areas of my life I try to learn the facts and make intelligent decisions. CLL is quite difficult to sort out. I can't tell you how much I appreciate this website and your help.
Kathy
Thanks Chris,
You guys are the best. Where else could we access such great advice? I do not feel alone anymore because I have this CLL community. Thanks for what you do.
Kathy
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