Not all monoclonals are the same!
Sometimes I really have a hard time understanding the logic behind some of the clinical trial researchers choose to conduct. It is not as if we don’t have enough open questions – lord knows there are a lot of interesting drugs and combinations that are still open to exploration. But more often than not, it seems to me the decisions are made without first putting brain into gear, to the detriment of good scientific logic and patient safety.
You are all familiar (I hope!) with the success enjoyed by FCR (fludarabine, cyclophosphamide and Rituxan) as the present day “gold standard” in the treatment of of previously untreated (“chemo naive”) patients. So, if FC + Rituxan is so good, how about substituting the other FDA approved monoclonal Campath in place of Rituxan? If FC + Rituxan is good, would FC + Campath be even better – since Campath packs more punch and is also thought to work in 17p deleted high risk patients?
This might seem a good concept – for about 5 nano-seconds. Then, if brain was properly in gear, you would start worrying about the fact that both fludarabine and Campath (also known as alemtuzumab ) are extremely immune suppressive. Of all the drugs you are likely to encounter in your CLL journey, these two drugs are most justly infamous for destroying T-cell counts. And not having sufficient number of T-cells leaves people wide open to opportunistic infections and even secondary cancers – just think of the health issues associated with advanced AIDS patients and you get the picture. Using both of these drugs (Campath and fludarabine) at the same time would be doubling down on the risk of extreme immune suppression. Patients would be at significantly higher risk of infections and even secondary cancers, when their immune defenses are down for a prolonged period of time.
It is not as if we have no information available on what combination of fludarabine and Campath can do. We have published several articles on the topic of Campath consolidation. When Campath was administered too soon after completion of FCR – as a way of mopping up remaining CLL cells and bringing patients closer to a MRD (minimum residual disease) negative status – there was a big spike in toxicity. A German trial (we wrote about this one all the way back in 2004) using this approach had to shut down because of unacceptable number of infections and even deaths. CFAR clinical trial at M. D. Anderson (combination of FCR+Campath in one massive drug combination) proved the point once more – very high toxicity when Campath is combined with fludarabine. You would think these lessons have been learned in many different ways and would not have to be learned all over again:
- Don’t use Campath consolidation too soon after fludarabine based therapy.
- Substituting Campath in place of Rituxan in regimens such as FCR or FR is not such a good idea, likely to result in heavy duty immune suppression and increased risk of infections, secondary cancers.
- Piling on Campath on top of FCR (as in the “CFAR” combination) may be more toxicity than most patients can absorb. You guys with me so far?
So, I have a hard time understanding why this group of researchers in France and Belgium thought that using the same deadly combination – FC + Campath – in previously untreated patients is such a terrific idea. Mind you, this is not a small scale clinical trial. This is a full fledged phase-III trial, conducted at many centers in France. Patients were randomized to get either FC + Rituxan or FC + Campath. We are not talking about a small group of patients either – a whopping 165 patients were randomized to either group in this study.
Excess mortality following FCCam treatment in previously untreated patients with CLL: safety and efficacy in a randomized, multicenter, phase III trial
Stephane Lepretre1, Therese Aurran2, Beatrice Mahé3, Bruno Cazin4, Olivier Tournilhac5, Herve Maisonneuve6, Olivier Casasnovas7, Alain Delmer8, Veronique Leblond9, Bruno Royer10, Bernadette Corront11, Sylvie Chevret12, Roselyne Delépine13, Sandrine Vaudaux1, Eric Van Den Neste14, Marie Christine Béné15, Remi Letestu16, Florence Cymbalista16, and Pierre Feugier17
A French and Belgian multicenter phase III trial was conducted in medically fit patients with untreated chronic lymphocytic leukemia (CLL). Of 178 patients enrolled in the study, 165 were randomly assigned to receive six courses of oral fludarabine and cyclophosphamide (FC) in combination with rituximab (R; 375 mg/m2 in cycle one, 500 mg/m2 in all subsequent cycles) or alemtuzumab (Campath; 30 mg subcutaneously injected on cycle days 1-3); each cycle was 28 days. Recruitment was halted prematurely because of excess toxicity; eight patients died in the FCCam group: three from lymphoma and five from infection. Overall response (OR) rates were 91% with FCR and 90% with FCCam (P=0.79). Complete remission (CR) rates were 33.75% with FCR and 19.2% with FCCam (P=0.04). Three-year progression-free survival (PFS) was 82.6% with FCR and 72.5% with FCCam (P=0.21). Three-year overall survival (OS) was similar between the two arms at 90.1% in the FCR arm and 86.4% in the FCCam arm (P=0.27).These results indicate that the FCCam regimen for the treatment of advanced CLL was not more effective than the FCR regimen and was associated with an unfavorable safety profile, representing a significant limitation of its use. This study is registered with www.ClinicalTrials.gov, number NCT00564512.
I do not have the heart to summarize the full details of this study. They are too shocking and depressing. I described some of the details when this study was first discussed as an ASH 2011 abstract. If you are in the mood for it, or if you are considering the combination of FC + Campath and therefore need a swift kick in the backside to stop you from doing it, please send me a personal email and I will be happy to help you find the full text of this horrific article, just published in all its glory in “Blood”.
Here are the sad details / results in a nutshell.
- 165 patients recruited for this two arm trial. Half got FCR, other half got FC + Campath
- While the patients recruited were indeed a relatively high risk group needing to start therapy of some kind, all of them were previously untreated. Not what I would call the walking dead, by any means.
- Things got so bad that even this group of “brave” researchers halted recruitment prematurely. I guess we have to be grateful for small mercies.
- Eight patients died in the FC + Campath group. That is a massively large number!
- Cause of death was infection in five patients and secondary cancer (lymphoma) in three patients. This should not come as a surprise to anyone even remotely familiar with the high risk of immune suppression associated with a combination of fludarabine and Campath.
- So, did the patients in the FC + Campath get a lot better overall responses compared to FC + Rituxan? Did they get more bang for the very high price they paid for the FC + Campath combination? You be the judge. FCR got 90% overall response, while those in the FC+ Campath arm got 91%. Absolutely no difference in response rate.
- How about overall survival? Once again, no difference between the two groups.
- Here is the bottom line. Not my words, this is a direct quote from the article and the abstract above. “These results indicate that the FCCam regimen for the treatment of advanced CLL was not more effective than the FCR regimen and was associated with an unfavorable safety profile, representing a significant limitation of its use”.
Editorial
Where do I start?
Perhaps a good place to start is raise my concerns with mix-and-match style drug combinations, just changing the alphabet soup of drug combinations. How about getting a bit more creative, something other than doing yet another me-too style clinical trial?
Is it reasonable to expect that there was sufficient data already available regarding the risks of combining fludarabine and Campath? I think so. Many patients had already paid dearly to prove that Campath consolidation too soon after FCR (or FR) was risky business, as far back as our review of it in 2004. The same concerns were also evident in the results of CFAR combination. Which part of this immune suppression risk did these researchers not get?
Guess who paid for this trial. I will give you just one guess. That’s right, the trial was paid for by Genzyme and Schering – the two pharmaceutical giants that own marketing rights to Campath. Do you honestly think anyone else would have been interested in paying for this particular deadly combination?
I mourn for the 83 patients who were unfortunate enough to be randomized to the FC + Campath arm of this deadly trial. Their participation in this clinical trial got them higher rates of infection, secondary cancers and even premature death – with no increase in response rates or overall survival. And here is the bit that really sticks in my craw. The researchers thanked the pharma companies that own Campath and paid for this trial – but they had not one word of thanks for the patient volunteers. Heck, in this case, thanks would not have been sufficient. How about abject apologies?
What blows my mind is that the terrible outcome of this clinical trial cannot even be dismissed as a case of 20:20 hindsight. The lessons were there already, provided anyone was willing to look at the outcomes of similar trials in the past and willing to learn from them. This trial provided nothing more than remedial education as it were, for researchers only too willing to conduct a trial just because they got the funding for it, not because it was a good idea to begin with or one that had high probability of helping the patients who participated in it. I can (sort of) understand dug companies wanting to improve their market share by pushing the drugs they own. But what is the excuse of researchers and physicians with a sworn duty to protect patients? Whatever happened to the “Do no harm” pledge?
Last but not least: where were the local oncologists who funneled patients into this trial? On what basis did they guide their patients into this obviously flawed approach? Is there an active patient advocacy effort available in France and Belgium that could have short-circuited this disasterous trial before it recruited even a single patient?
I guess that last point is the one that hits close to home for me. We have thousands of members, all around the world. But there is no question the vast majority of our members come from English speaking countries. We have a few volunteers translating CLL Topics and Updates articles into German and other languages. Not enough, it seems. I am only too aware of the limitations of my own efforts. Our reach is limited to computer savvy and English speaking patients. An even bigger hurdle is mind-set. Too many patients are still timid about getting personally involved in their own healthcare, too many doctors are offended / intimidated by patient advocacy or empowerment, too many inappropriate clinical trial designs getting approved based mostly on availability of funding rather than good science. Until these mindsets changes, we will continue to have tragedies like this.
What can you do? Please get the word out. Preach patient advocacy and personal choice in therapy decisions and clinical trial participation. If you “get it”, try and convince a few others who may not be quite as far up the learning curve as you are. We are all our brothers’ keepers.
On a very different subject, my sincere and heartfelt thanks to all the kind readers who wrote and expressed their condolences on the death of my beloved dog Jasper. Please forgive me for not writing back to thank you personally. I am still having a hard time coping with this loss.
38 comments on "FC + Campath for Chemo-Naive Patients"
Chaya, Thanks for this article. It was a phase III trial. How many did they kill in phase I & 2? Older people not on the internet just accept the faith of the doctors. How very sad. This doesn’t add to my trust of medicine that is for sure.
WillB
Chaya, good investigative reporting. The Journal of the American Medical Association (JAMA) needs to put your on their Board.
Good stuff.
William Bates
Another great article. Thanks for all your time and effort.
Chaya,
First, I am so sorry for your loss.
Second, thank you so for your persistent tracking and posting of information that
is invaluable.
Third, I do not know any other CLL patients. I was diagnosed in 2001 but have not met another person with CLL. What is the best way for me to find others in my area? In 2004 went to a local agency that has a mission to work with cancer patients,signed up and attended an introductory meeting with other new members. There were no groups for CLL patients and the “facilitators” knew no other CLL patients. The facilitators seemed to not be interested in my concerns since I was not being treated. I WAS told that they would change me my preference for introversion!
I checked their website for awhile, and went by to talk with one of the members to see if there was anything there for one who had a diagnosis AND intellectual concerns but no treatment yet–never found any interest in CLL at that facility.
Of course, Drs. do not (and should not) disclose the diagnoses of patients.
Chaya,
What a sad story! You have warned us so many times against Campath and how important it is to retain our T-cells to prevent infections. Someone in France was asleep at the switch when they decided to conduct that clinical trial. If the head doctor had coordinated with MD Anderson I’m sure he would have been told it was a bad idea. Participants in the trial made an unfortunate sacrifice.
Essie:
You raise an interesting and important question. How indeed can we get the word out on patient advocacy / education / empowerment?
I am not sure I have any good answers. If you frequent other internet CLL chat rooms, it may be a good idea to highlight the importance of patients taking the time to become well educated and participating in their own healthcare decisions.
I have been asked to speak at the upcoming CLL conference in Canada. The title of my talk: “Making therapy decisions with eyes wide open”. But I think I will be preaching mostly to the choir. How indeed do we reach patients that are not even aware of the resources available to them?
Sometimes, I toy with the idea of pulling together a bunch of pivotal articles I have written over the last ten years into a book format so that not-so-internet-savvy patients can have access to bare minimum information. But it involves a lot of additional work for me and I am reluctant go start yet another project for myself if all it does is of marginal benefit.
So, here is brief survey. Post your comments below or write to me:
1. How many of you will spend twenty bucks of thereabouts to buy an e-book on CLL authored by yours truly?
2. Having access to the book on your Ipad or your kindle (as opposed to logging on to this website) – would it make a difference to you?
3. If you are son or daughter of a parent with CLL – a parent that is not computer savvy – would you buy an e-book on CLL for your parent?
Any other thoughts you may have on the subject would be welcome as well. I am just beginning to think of this project and not entirely sure it is worth the time and effort.
What’s next…”bleeding” patients and calling it by a new name while emptying their wallets?
Chaya,
Would be very happy to spend 20 bucks or more for a book that organized the immense amount of information on your web site. The book should be organized like a textbook using early chapters as building blocks for the foundation of understanding CLL.
Elek
Chaya,
There are real cost in terms of lives lost and damaged in being convinced one more time that we know the risk and benefits of FC+C .
Who can stop the craziness?
Patients need to be aware, but the amount of information and the fortitude to question is not part or the DNA of some CLL patients. They simply trust their docs. Always have, always will, even into the grave. They don’t read your website or go to support groups or get second opinions. They don’t want to know. I am personally familiar with many such CLLers. As you have said. they outsource their worry. I understand, and I doubt they will change,
That doesn’t mean we shouldn’t try to raise the bar, but I am afraid an e-book would be just another way of e-preaching to the choir.
The general oncologists are equally lost. Their knowledge beyond the big 4 cancers (breast, colon, lung and prostrate) is broad but shallow. Even truer for primary care.
I am working on a different plan.
I have self funded and am starting to ask for grants to teach other family doctors and community based healthcare providers about CLL as part of their CME. This project is in early development. My interviews from ASH will soon be posted on an online peer reviewed medical journal (http://www.primaryissues.org/) and I am right now submitting grants to cover other meetings of interest, not for patients or hematologists, but for primary care. I want to teach my colleagues what questions they should be asking in helping patients decide about therapy. With other expert in patient education, I am working on joint meeting of patients and doctors about blood cancers. I have live CME lectures for primary care providers on CLL and transplants and MDS scheduled for April and May. It is a small start, but it’s a start. I believe PCPs can prod patients and specialists into doing the right thing, but I am biased having spent spent over 35 years in that job.
I suspect we need many approaches to increase awareness at all levels.
My fantasy is that I will have some quiet time when sitting in my condo in Columbus over the next 90 days for the PCI-32765 + O trial to get my research and writing finally done.
Be well. Hope to see you in Niagara Falls again.
Brian
I am thinking that Chaya would be a fabulous guest for CNN’s Sanjay Gupta, MD. (Okay, if Chaya claims she’s far too camera shy for that audience, then how about writing “The Last Word” article for “The Week” magazine?) There’s nothing like a little publicity to get patient advocacy/education/empowerment on the front burner.
Survey answers: I don’t have an I-pad or Kindle or other e-book reader but if you wrote a book it would give me a push to get one. (Ulterior motive — I could take it to show local onc. how behind the curve he is in all things CLL…)
Twenty bucks is a bargain for the wealth of information that your book would provide.
(Which is a reminder: We all get so much from this site for which Chaya doesn’t ask for a single thing but gives us all so much of her self. Please hit that donate button to help keep CLL Topics going!)
I came by your web-site by accident; having trawled the net for anything and everything connected with CLL, you know how one does, and having become thoroughly depressed and also scared…out of my tiny mind…you came along, as well as the late and sorely missed Prof.
To me you were a saviour: I found and “tried” the British CLL specific site, but found it unsatisfactory. Thank you so very much; you sound mind which shines through your articles, your ability to translate jargon and …your clearly well developed sense of humour…take a bow! When I felt like weeping, you bucked me up.
It is quite possible that some kind of book, or resume of treatment options, drugs available etc, with your sound advice and advocacy; and maybe a mental kick up the proverbial, like “get involved, be/stay involved; it is your life”, would be very welcome.
Thank you! PS. So sad about your beloved four-legged friend!
Dear Chaya,
Thank you for another highly informative article.
I am early stage untreated w/w but want to learn about the various treatments currently used to treat CLL. Because CLL is so heterogeneous (varied & diverse) patient to patient, treatment can be a complex issue. I think it helps to have a basic understanding even if you are w/w. Your articles provide invaluable information alerting us to the issues and concerns we should be aware of if & when treatment is needed.
How heartbreaking that such a flawed & dangerous trial was ever undertaken. What a horror story!! And another example that the patient needs to informed and aware – something that you dear Chaya help us to be.
Yet some folks do not want to be involved (they are more comfortable letting the docs make all the decisions). Others may be too ill with other health problems and some are not computer savy. I will never forget your recent story about the daughter who was in contact with you about her dad’s CLL – and then you find out she was only 12 years old.
Personally I would buy anything that you wrote Chaya (e-book or whatever). However I think your 2 excellent websites provide a wealth of valuable CLL info for anyone who is intersted. Being online it’s easy to access at any time.
An e-book might best serve someone who was not computer savy. However my concern is that the additional work an e-book would require would seriously over burden you considering all the time & effort it must currently take to keep up with your 2 websites.
I vote for your not over-burdening yourself any more than you already are. Your 2 websites are invaluable “go-to” resources for the CLL community.
As always Chaya, a BIG thank you for all you do for the entire CLL community.
Regards – Patti
Dear Chaya,
I would happily spend $20 for a book, but I fear that it would become outdated over time. I’m an untreated, stage 1 for 10+ years 72 year old guy and I read you to prepare myself for when the day comes that treatment is recommended. When that happpens, you can be certain that I will immediately hit CLL Topics for the latest news and your highly informed opinion regarding the treatment. I’ll also run the recommendation past a second oncologist before I consent. I don’t know how powerful your “search” feature is, but I want to be able to count on it to provide me with your take on the latest drug combination, so I would say, first make sure that your “search” feature is powerful and permits a sort sequence like “newest first” so I don’t have to wade through old stuff.
Eight years ago, I had just gotten off of 6 months of RF at a top hospital with their recognized specialist there. When I returned to my state I saw another ‘specialist’at another hospital just to have someone on hand close to my home. HE wanted me to go on Campath to clean the last ten % of cll out of my cells………I said thanks but no thanks!!
(by the way…his so called clean up trial didnt work – lots of infections and worst)
He didnt like my taking control of my own health decisions but OH Well. Instead of spending my time with probable infections in the hospital, I was spending it in Europe with my two daughters:-)
The last time I was nearing treatment I kept asking my oncs about ofatumamab they all said the fda says it is not an option unless you fail campath.hmm failing campath? scary huh. I have since got into to the pci/ofa trial at osu. I am in the ofa only part so far. Mt wbc went from 525 to 95 with the first low dose (300)mg) treatment. Any one out there have a chance to get ofa go for it. But remember my trial will exclude any prior ofa treatment.
Thanks for all the good work Cheya you are invaluable.
Chaya,
Don’t know how I missed the news of Jasper’s passing. I am so sorry. I think I know how much he meant to you, especially since he meant so much to PC. I wish the outcome had been different.
You had written about Campath ‘consolidation’ before. It’s hard to imagine that you were the only one in all of CLLdom that came to the same conclusions about using F with Campath. seems it’s not just ‘older’ folks who must be computer naive. I don’t want to let my brain go to sheer greed, but what else could it be? Thanks to you I chose a treatment using Rituxan and Cyclophosphamide with Pentostatin instead of Fludarabine because you warned of loss of T cells and I’d aleady had too many skin cancers. I heard you, and that was quite some time back.
I’m not sure it’s that some people are ‘too old’ to get on the internet. I feel as one other commenter said, that some people just have a mind set that they don’t think too much about illness and they ‘trust’ their doctors. It may be ‘generational’ or environmental/cultural, but not necessarily age.
Anyone who is already here, on your pages wouldn’t truly ‘need’ a book, and I’m not sure that any of us could convince those who aren’t here to open their eyes, even if it’s for their own good. One day in a local support group told me that other women,my age, who were miserable, hated their doctors, their treatments, and I suspect themselves were satisfied that what their doctors told them, that there’s too much bad stuff on the internet, was sufficient reason to never go there. Going out of their zip code was too trying for them to explore a different doctor, or choice of therapy. I even met a woman during my treatment who had CLL. I asked her what sites she had been on. (she was not in treatment) She offered that she didn’t need that stuff. I offered to help when the time came if she changed her mind and she pretty much told me that wasn’t happening. If I’d given her a book she probably would never have looked at it.
We desperately need to pass on the message of patient self advocacy, and anything anyone can think of is to the good. Talk about if we don’t use it we may lose it. We could start by fighting to keep free medical study access free on the web. As that is being threatened. I’m sure I’m not alone in knowing that without sites like yours and access to good information I would not be where I am now, which is a whole lot better than I was. Thank you always. Beth
Chaya,
I am so sad for those patients who died. What a terrible catastrophy.
With all your articles and news and updates from others re:Campath, there are those we do not reach. You are right!! The oncologists do not keep up.
Take care, my friend and Many Blessings
Rita
So sorry about Jasper.
I think some kind of pamphlet with concise CLL Topics knowledge and lists of whats on the w/site would be very useful to show our oncologists. Sometimes it can be quite intimidating when you get in to the hospital for your appointment, all that detailed rock solid info you’ve read up on goes clean out of your head, especially if you’re feeling unwell.
I hate to be cynical….does socialized medicine and a lack of legal accountability have something to do with this trial in France/ Belgium?
Thank you for sharing this article.
I would spend upto $50.00 for the info and guidance you provide. I was diagnosed with CLL in Sept. 2010. Went thru 6 months of FCR and last bone marrow aspiration in July was clean. Keep up the excellent work.
The above article is too sad. Hard to believe it got to phase III.
Yes, I would pay for a book. I would read on e-reader, but would purchase hard copies for others. Our son reads your articles. I read them and both my husband and I are very thankful for your great information, interpretation, opinion, and your overall expertise.
Our dear professor spoke very highly of you and your work.
My husband is now considered in a good remission. He began R in 10/2009. In 12011 he had FCR Lite for 3 months. He had delayed marrow failure twice, first one month after treatment, then 4 months later. That is now resolved. I would hate to think what would have happened had he added Compath or used it for consolidation. We were very well informed and would not have agreed to using Compath with or after FCR. Many thanks to you, Chaya and your and your family’s work.
Just now learned about Jasper and wanted to express my sorrow and condolences Chaya. So much sadness in this post.
Reading about this trial makes me very angry.
I wonder if an e-book would be out of reach of the people who do not log on to the internet.
I also wonder if we all wrote en mass to the L&L Society if they would finance and distribute a hard copy. They were my first point of contact.
Survey answers:
1. $20 e-book YES
2. current tech – beyond my capabilities at this time
3. NA it’s for me
Chaya,
I am very sorry for the loss of your dog Jasper.
Thank you for an informative update.
Monique
Such an extra measure of melancholy must exist at the loss of Jasper. I too wish to send heartfelt thoughts your way.
As you might recall, I have been around the block with CLL since diagnosis in ’89 at age 48. My treatment chronology is: chlorambucil off & on ’93-’97; fludarabin late ’98; FCR with Keating ’01; stem cell transplant at Dana Farber on 4/19/05 (add in two follow on DLIs plus some novel injections). Believe it or not, I am now half way into my FOURTH round of the dreaded Campath since post transplant relapse in early ’06. Am I crazy or what? The campath gives me a year remission each time form my 99.9% packed bone marrow at the start. Somehow I keep dodging the bullet with neuts, reds and platelet crashes each time. Bad timing kept me out of the CAL-101 trial. With lots of pondering, Campath keeps getting the nod as the most exquisite selection for clearing my packed marrow. I have the Wayne Wells’ described “discordant CLL” … mutated and no unfavorable cytogenetic markers, but aggressive disease.
I’m not reporting this to “strut my stuff”. I’m doing it to impart that as much as I have learned about CLL, treatments, etc, …. and as much confidence as I have in my local Oncologist/Hematologist (backed by Jennifer Brown’s 2nd opinion), I’m still unsure about my tx decision making. Up to my transplant I was a busy exec with no clue what was going on CLL-wise. Then I met you, Terry, Chris Dwyer, Brian, etc. It made me a faithful practitioner of PC’s spread sheet, and a sponge of CLL knowledge. You would think I’m “good to go”. But I still feel like I’m running through the woods with a blindfold on. Yes, I would definitely buy your book.
Thanks for still putting it out there Chaya.
Bob Larkin
North Branford, CT
Yes, I would buy the book. NO, I wold not buy the eBook. I prefer paper over digital.
I think, however, that your energies are better spent elsewhere. The book would immediately be out of date, whereas your website can always be updated. If I want to show something to my doctors, I can print it out (and have done so!). Older people, which we all are since we have CLL, do use computers, often going to the library if they don’t own one themselves. There are people who want doctors to make decisions for them. A book about CLL would not change that mindset.
For ways to reach more people, would it make any sense to use social media such as Facebook?
Chaya,
I am so sorry for your loss of Jasper. I can strongly
relate to the loss of Jasper. A recommendation: once over your grieving, get
another companion. It is good for your overall health when living alone.
So many have made outstanding suggestions for a way to communicate the CLL message
I will end this message.
My best to you.
Barry
I feel the more useful approach is the one you have chosen here, Chaya, where the comments continually update the basic article. This work is already a significant drain on your energies and I would not want you to feel more effort is necessary. I have found it is also true- although inexplicable to me- that many patients are uncomfortable thinking about their status and prefer to simply do what the doctor says.
Since my diagnosis led to constant travel I had to give up my two dogs after 10 years of their companionship and still feel the loss; I understand your heavy heart.
1- $25—My wife (my patient caregiver would pay much more) a big fan
2- Love my Kindle, but not a must
3- Of course
Best
Js
I would definitely buy the book. I would prefer an e-addition of one sort or another .. that way I can do a search for occurrences of a word that I’m interested in.
All the best to you, Chaya .. and again, condolences on your loss.
aloha nui
Lynn
Any addtional means of information is great, but please keep the website active and up to date
the new drug name for PCI32765 is called IBRUTINIB stay tuned hopefully this will be our replacement for FCR soon.
I’ll pay the $20 and another $10 a year to have it “updated” annually. It is a great idea. There is too much mis-information and way too much “non-information”. I think this kind of book would be a “best=seller” among all of us who want to have the best and latest information on CLL.
I so appreciate this site. I have been reading it since its beginning and will continue to do so. If you have the time, and only if you have the time, and create a book or E-book I will gladly pay for it. My only concern would be with keeping it updated.
Thanks for all you do!!
My sincere and heartfelt thanks to all the people who commented on the pros and cons of an e-book, both online here and in personal emails to me.
I think the consensus is clear. While an e-book may serve some niche needs, most members felt that the maintenance and continuation of this website and the present services we offer are much more valuable.
I agree. With relief, I agree. I can now with a clear conscience continue to do what I have been doing in years past, and forget about book writing.
Thank you for your honest and important feedback.
Oh My .. I didn’t think of it as an either / or. Given a choice, the WEBSITE Rules !! And it is much easier to maintain and update in this dynamic environment than a book, especially a printed book. And, in fact, your website is like an e-book in that it is searchable and you can do real time tweaks.
all the best to you
Lynn
It wasn’t an either / or choice. But writing a book, even an e-book ‘stealing’ large chunks of content from my own prior articles, takes quite a bit of time and effort. Members expressed concern that in trying to shoe-horn in this additional project I would be under huge increase in workload. I agree.
Keeping up this website and writing new articles as the subjects suggest themselves to me is the primary role I see for myself as a patient advocate. Equally important and a job that takes even more time is responding to the many emails I get from members; along the same lines, I also have a gradually increasing number of phone consults and face-to-face meetings with members. Third on the list is public speaking at conferences and running a couple of CLL workshops each year.
That list just about fills my work day. Writing a book on top of my present to-do list would have been a real problem. Thanks for letting me off the hook guys :)
We will never “let you off the hook”!
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