I am particularly proud of my latest post of my blog
One of the most common questions I get asked is: "What are my non-chemo options"?
I thought I would save myself some repetitive work by covering the topic on my blog so I could refer questioners to my blog for the skeleton of the answer and add the meat in my personal response.
When I started to answer this common and sensible query, I realized it was important to understand what we were saying no to before I covered what we are saying yes to.
In part 1 of my post, Saying No to Chemo, I try to present a balanced if somewhat generic view of what that means.
Hi Brian, thanks for posting links to your recent ASH interviews they have given much hope and been very helpful in learning how research drugs are developing.
Is this recent blog aimed at US patients? Am I correct in understanding you are suggesting that there are already effective alternative options to chemo treatment of CLL? The majority in this community group are outside the US .
Good to read you are doing well in your Ibrutinib trial, I hope this continues and your's and other brave pioneers experiences over time prove the drug and enable trialing in other populations and combinations.
My understanding is that In the UK there are not any trials offering an alternative to chemoimmunotherapy combinations yet for first line treatment of “go go” patents. (fit patients needing first treatment} and there will not be for a while.
Maybe soon in older first line “slow go” (less fit patients needing first treatment) or for some of those who have relapsed, refractory, or have aggressive difficult to treat disease.
But we are some way off the trialing of alternatives to chemo on the majority.My concern is that people are becoming scared of treatments proven to extend life when needed The novel targeted therapies are as yet unproven and won;t be for some time.
Hi Hairbear. You are correct in assuming that I don't know what trials are available in Europe and what drugs are approved. HDMP + R would be a non chemo option. Off label use of existing SYK and mTor Inhibitors and other drugs might be possible. If available monotherapy with ofatumumab can help many.
Finding strategies that are available to buy time until targeted therapies come available may be a lot harder for NHS patients than private patients, It is the UK CLL Forum.s Annual Scientific Day conference in London on Friday. I will pick the brains of a few UK clinical researchers for more detail on the lay of the land..
I too wondered about the 'Say No to Chemo', Brian....
While there are a couple of non-chemo clinical trials for CDK inhibitor AT7519M, GA101, PI3K Inhibitor BAY80-6946, lenalidomide etc... these are small, limited distribution trials, simply not available to many Canadians, unfortunately.
You may not be aware that Bendamustine, approved in the U.S. in 2008, has just been approved by Health Canada recently, and just last week recommended for funding to the provinces by pCODR as firstline treatment of CLL, regrettably it has not been recommended secondline where it is needed most.
Canada lags behind the U.S. for drug approval...ofatumumab probably will never be available here.
We all hope for an ibrutinib trial in Canada...likely ibrutinib and bendamustine/rituxan for R/R patients ...still a bit of chemo in there...
(EDIT...the ibrutinib, bendamustine/rituxan trial has just opened at Juravinski and will open at Sunnybrook and London, Ont)
Clearly, FCR or FR perhaps, is and will continue to be the standard of care in Canada for sometime.
Sorry...'Say No to Chemo', simply doesn't apply here at the moment.
I'd hate for those in the UK and Canada to feel as though they may be "missing" a golden opportunity due to the perceived comparative lack of access to trials at this time. In reality, while there may be a greater number and variety of trials across the US, there are many factors which limit the ability of many to join in.
In the US, Patients must identify and gain acceptance to a trial; largely on their own. The US seems to be unique in our medicine shopping. Probably why we see a lot of hype and what is really advertising. Patients who shop may not be fully aware of what is entailed in terms of time and finanancial commitment. While the trial drugs are generally provided, travel, lodging, and time away from home and work are the responsibility of the patient, as may be the costs of testing and drugs other than the actual experimental drug. Coverage varies by state, and out of state treatments may not be covered depending on what insurance the patient has. All of this is sometimes difficult to assess prior to deciding on a trial. It also poses a tremendous burden on a patient who may not be well, or have a lot of flexibility and energy.
We've also seen patients enter a distant trial, using a new oral treatment, and once deemed stable, return home. If difficulties arise, returning to the trial center may difficult or not be possible, and local treatment may become complicated since non trial doctors aren't familiar with the drug.
I'm sure all CLL patients hope to arrive at a place where we all have the freedom to choose the safest AND most effective drugs for our particular case. Right now, no matter where we are located, those best options may well involve "chemo" therapy drugs; sometimes In addition to a new drug, or an entirely new approach, though I believe for
most of us, that is a long way off, years in most cases. this is true everywhere, as a practical matter. say no to chemo may make a nice slogan for a campaign to raise awareness for more funding for trials, a. Noble goal, and very much needed, but it's not a position we as patients should adopt for our own care, not yet.
At this time we can't afford to stand pat and forget that the currently accepted treatments, if done at the right time, and prudently chosen, have years of data to rely on, and have helped thousands around the world extend their lives and the quality of that life. Many of these are far less toxic than those of a generation before. Discarding that out of hand out of fear, or unrealistic, or impractical hope could be a terrible mistake. The goal in choosing a treatment should not be "avoiding chemo" At all costs. Patients should not be made to feel that those choices are second best, or unsafe. They are, used properly, in some cases, safer, and may even be your best option.
Beautifully said. I couldn't agree more. I hope I was arguing in favor of not abandoning chemo, certainly not yet. While I am a big believer in entering clinical trials, I am not naive or blasé about the costs and risks. And you are right about some targeted therapies being more toxic. For an older patient, chlorambucil may be a far safer and more effective choice than the "targeted" antibody alemtuzumab (Campath).
I did a six month course of FC and achieved a CR and since then I've had four years of good health. However, those six months were truly horrible, I took six months to recover after wards and the chemo has left my short term memory seemingly permanently damaged. Personally I cant wait for the new non chemo KIDs to arrive, the sooner the better. Although it's the best we've got at the moment, I think in the future we will look back on chemo as the dark ages, when we poisoned ourselves in order to get well.
I keep finding these earlier posts of yours in response to searches I've done within this forum. Unfortunately, your links takes me to your blog's home page and there is no 'search' field. All I know is that you posted this 3 years ago. I realize it used to be on your home page when you first posted it. I am late in finding it, though. Can you add a search field to your blog, or perhaps include a specific date when you reference posts on this forum in the future? The format of this forum does not give us dates to reference.
If you hover your mouse cursor over how long ago Brian posted - the '3 years ago' in this case, you'll get a pop-up informing you that Brian posted this on Sunday, March 10, 2013 8:52PM and likewise your reply is datestamped Friday, July 8th 2016, 5:20AM.
I don't know if I can an add a search function. If you google by the title of the post ( if I include it) that usually works. I'll ad the dates going forward.
How time flys three years ago wow. reading back over this thread helped remind me of state of play then, probably worth revisiting some of all this today and summarize perspectives on state of play and clinical consensus today. A lot of water under the bridge in three years, it may be helpful for an update from us all now more is known? The picture has unfolded a little more and data and experiences provide us with more evidence. Interesting chris posted a acuple of very recent EHA videos that give a good update.
How the treatment of CLL is evolving, Dr George Follows
Prof Peter Hillmen (Leeds Teaching Hospitals NHS Trust, Leeds, UK), Prof Paolo Ghia (Università Vita-Salute San Raffaele, Milan, Italy), Dr Chris Fox (Nottingham University Hospitals NHS Trust, UK) and Dr Constantine Tam (Peter MacCallum Cancer Centre, Melbourne, Australia) discuss the latest therapeutic advances in CLL from EHA 2016.
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Medicare Part D question
Starting Chemo tomorrow
Four and a half months post chemo and neutropenia causes a little trip to hospital- why? 
One year from diagnosis/surgery/BR chemo start
