Growing pains
Our “Updates” site traffic has gone through the roof ever since the beginning of this year when we opened it up to unregistered visitors. Given recent emails addressed to me as well as comments in other forums that were forwarded to me, I think it is time we re-stated for the record what CLL Topics and Updates is all about. I am very sure I cannot please all people all the time. But I would like to take a shot at explaining what it is we are trying to do – and what we cannot claim to do. Perhaps we can short circuit a lot of frustration and wasted time – yours and mine.
Credibility
I try hard to back up the technical information I provide with relevant and credible professional articles. We publish the abstracts and encourage you to read the full text articles for yourself. What constitutes professional credibility? To some degree, that is in the eyes of the beholder and reasonable people can agree to disagree. But I think few people would disagree that an article authored by experts such as Dr. John Byrd in the latest issue of “Blood” is both credible and relevant. Such an article was the basis of my recent article on Revlimid. The logic for the “chemoprevention” clinical trial we reviewed is based on Dr. Byrd’s article. The clinical trial itself is listed under clinicaltrials.gov and being conducted at Roswell Park, one of the expert centers for blood cancers.
It is not my research, not my conclusions. I do not write the papers, I do not conduct the clinical trials. True, it is my voice; but I am merely the layperson reporter, not the researcher. My qualifications are listed on our websites, please take the time to read them. Then judge the value of my analysis accordingly, as it seems appropriate to you.
Most of the time I touch base with the authors of the research before I publish my review. As a matter of fact, I exchanged several emails with Dr. Byrd regarding his very interesting paper on the immune modulating effects of Revlimid, before I wrote my review. We are fortunate in having a long list of CLL experts on our informal advisory board and their feedback is very important to me in validating my understanding of the research.
Analysis and Interpretation
One of the ways in which CLL Topics and Updates differs from other inter-net sites is that I try to provide analysis of the papers that I highlight. I try very hard to stay true to the published article and at the same time translating the jargon into plain English. If this is not to your liking, if you think in the process of my translation the message is distorted, you should read the articles themselves and cut me out as a middleman. That is not only your right it is also something I strongly advice you to do. Science is always best served in the original format, as the original researchers intended.
Do I have a bias in what articles I choose to review and is the message influenced by my own perspective? You bet!!! I see the world through my own two eyes, my perspective is obviously colored and influenced by own background and education. For example, we do very little by way of reviewing alternative medical practices because of my lack of familiarity or comfort with such practices. Fortunately, there are many forums on the web that cater to patients looking for such information. Once again, I can only do what I can do, you would be foolish to expect me to do otherwise or be all things to all patients.
Medical Advice
WE ABSOLUTELY, POSITIVELY DO NOT CLAIM TO PROVIDE YOU WITH MEDICAL ADVICE. Folks, I am not a medical doctor, I have no formal medical training of any kind. Zip. Nada. None. The best I can provide you is my layperson perspective on what I think of the countless research papers and clinical trial protocols I read till my eyes bug out.
Two phrases I use over and over in my articles are “Buyer Beware” and “Devil is in the details”. You are the buyer, you have more skin in this game than anyone else. CLL Topics and Updates are just two more sites. Their value is only to the tune you think they are valuable. You make the call. It is both your right and your responsibility. PLEASE TALK TO YOUR OWN DOCTORS BEFORE YOU MAKE MEDICAL DECISIONS! I neither seek nor want that responsibility.
Integrity
I realize that by running these websites I expose me and my family to slander and hate mail from inter-net “trolls”. There has been an up-tick in the number of hurtful emails I have received since the beginning of this year, when we decided to open Updates to all visitors. That decision may have to be re-visited later this year, only time will tell.
You have an absolute right to agree or disagree with my evaluation of any clinical trial. If you are a serious member of this patient community, on the occasions when you disagree with my assessments I think you owe me the same respect that I owe you. I do not think it is fair to question my personal integrity because your perspective is different from mine on a particular article or clinical trial. I will assume your opinion contrary to mine is your own honest opinion. I will not assume a conspiracy theory that you have been “bought” by a competing drug company for example. You owe me the same respect.
Cynicism has become the fashion, but sometimes it has a way of destroying valuable things. I cannot state this more clearly than this: I have not accepted nor will I ever accept one single cent from any company remotely connected with the health-care industry. When I travel on your business (such as the time I testified before the FDA for ofatumumab approval) I paid for my trip out of my pocket. When I was invited to address the Canadian Patient conference, the organizers paid for my airfare and hotel charges, but there was no additional fee or honorarium. A day may come when I am no longer able to continue this effort and therefore shut down CLL Topics and Updates, but they will never be sold – any more than I can bear to sell “Harvey’s Journal”, the account of my husband’s battle and eventual death. These sites have too much of my family saga imbued in them to allow such a travesty.
Clinical Trial Recruitment
As I said above, the analysis and evaluation I attempt to do on my sites are what sets us apart from other sites. I provide links and implore my readers to read the details for themselves. Can I guarantee the clinical trials I review favorably will pan out? Of course not. I do not have a crystal ball, no one does. That is the whole point of doing clinical trials, to get answers to questions we do not have answers to at this point in time.
Should you participate in clinical trials based solely on my evaluation? If you did, you would be foolish and abandoning your own responsibility to do due diligence, make up your own mind. I can recommend, but “Buyer Beware” and “Devil is in the details” are important mantras to remember. Frankly, it does not matter to me one way or the other, whether or not you accept my evaluation. I do not stand to make or lose a single cent based on your decision to volunteer for any clinical trial I review.
I understand a few people thought I stepped over the line because by the force of my recommendation I influence people and short-change the clinical trials I do not review or review negatively. Duh. We all try to influence people to see the world as we do. The best I can do is to try and do it as objectively as I can. You think this “job” should be done differently? More power to you, build your own soap box and do the heavy lifting of “influencing” people in the direction you think they should be influenced. Last time I looked, this is still a free country. We can always use a few more patient advocates that bring their own passion and hard work to the job.
When I get something wrong, I make sure you get to hear that too. Case in point: I waxed too optimistic about “Prochymal” technology using mesenchymal stem cells to control GVHD in allogeneic transplants. When the clinical trial results reported soon after were less than thrilling, I published that information as well. Remember Genitope and their custom vaccine clinical trial? We fought hard to include CLL patients in their trial. Unfortunately the trial was not successful and the company went belly-up. We reported that too, as soon as the disappointing news became available.
I cannot guarantee wisdom. I cannot guarantee I will always be right, or even that I will be right more often than not. But I can and I do guarantee integrity, honesty and calling it like I see it to the best of my ability. The only money that we get is by way of voluntary donations from our members. We do not do fund drives. We do not mail solicitation emails bugging you to send us your hard earned money. Last year we shut down donations half way through the year because we had reached our targets. I answer many hundreds of emails each month from patients looking for a little extra help. I answer them independent of whether or not they are donors. Not a very good business plan if I was looking to maximize my revenues, would you agree?
You must do your share of heavy lifting
CLL Topics and Updates have been fortunate in our grassroots support up to now. Please don’t stop now! I have noticed a drop off in the number of our registered members who bother to log-in and get involved in the discussions that follow each article. Each of your voices contributes to the value and feel of this site. Please participate in this effort. Updates will thrive or fail based on our community support. It is truly the wind beneath my sails.
I am told most inter-net sites are full of rude behavior, foul language and inconsiderate members. We have built a beautiful community, you and I, one where our people bother to be thoughtful, considerate, stay on topic and try to be empowered patients. It would be a shame if this forum withered away and died because you do not bother to do your share of heavy lifting.
Housekeeping
Our webmaster (Radha) tells me that several of our registered members who have opted to get an email when we publish a new article are not getting their emails because they are getting blocked at your end. Please make sure your server does not bounce the emails back because of spam filters. If on the other hand you do not want to get the emails, you can certainly opt out of that feature. You can do it yourself or send an email to our webmaster and she will do it for you. The same thing goes for your personal emails to me, often asking for an article PDF or some other information. I cannot send it to you if your server blocks my response.
133 comments on "Ground Rules"
Thank you for all the work you do in getting us the information we need. It’s unfortunate that there are a few people who want to discredit what you are trying to accomplish. I was a science writer for a major newspaper for more than 20 years and everyone seems to have an opinion whether it’s about evolution, climate change and other topics. It can be discouraging, but glad you explained to the naysayers that you’re just providing the information and are not the source of the studies. Keep up the good work and don’t let negative comments detract from your wonderful efforts.
Rich
If you decide to go back to registered users its okay by me! We GET it!
Thanks for all you do for us. We will be forever grateful!
Chaya,
You are doing a remarkable job. It is a talent to be able to translate medical/scientific jargon into English. It is unfortunate that personal agendas are interfering with this splendid site. You have been a support and place to go for credible information since my diagnosis 6 years ago. Thanks.
Debbie
Dear Chaya,
I am saddened to learn that you are being attacked, no matter how small (in numbers or mind) the attackers. I was diagnosed in January of 2009 and your site was the one place I landed – after many, many searches – that provided me with such a plethora of information in a fair and objective manner. Where you had an opinion, you have always been careful to say so. You have been my substantive interpreter of many complex issues. I also asked my biologist researcher friends to read your blog and give me their opinion. Excellent was the unanimous agreement. No surprise. Having CLL is like getting another full-time job your never applied for or desired. Along with the emotional and physical burden is the attempt to understand this complex world of hematology and cancer. You help all of us to lighten that load. I am a skeptic by nature so vetted your site carefully. All of your claims of objectivity are legitimate and your interest one of compassion and passion. I, for one, am so grateful to you.
What can I say more than THANK YOU for all your hard work and all that you have shared with us? I can only endorse what “pradickes” has already said.
You provide an INVALUABLE and UNIQUE service! With love and best wishes, Dave (England) x
I love being first responder. Excellent article, well put as always.
Lynn
You can please some of the people some of the time, but you can’t please all the people all of the time.
You please me!
I completely agree with the previous commenters. Your site and your work are gifts to the world. Thank you, thank you, thank you.
Chaya:
A person who labels or puts others into some group using vague opinions, past-experience and personal reaction is only exercising his or her own ego. You, better than anyone, knows that the work you do, this website, is about CANCER. It’s about illness and disability and sometimes it’s about death. It’s not about politics or grinding an axe. It’s straight forward and based on sound research. What right has anyone to question your motivation when your hard work is to help people. Yes, let that person do some of the heavy lifting, instead of sending out emails that negate what you are doing. People with CLL have enough on their plates without having to deal with that.
Keep up your research and your work. You are admired by me and many others.
Sincerely,
Beth Havey, wife of CLLer John who is currently in remission with help from his doctors, his wife, his own determination and information from Chaya!
Chaya,
I am only too grateful for your plain easy take on many papers on research into this horrid condition. I have recommended it to the doctors I have come in contact with.
Am very sure you have all the sympathy there is for anyone afflicted by this horrid disease, be it early, “smouldering” or “rabied”; we all have our own problems; be they a matte of where to go and when to go; or because we have ended in a hell-hole not of our own making.
Whenever one of the up-dates arrive, I read them with care and really relish the calm way you write; don’t know I could in your situation; even if I had had the scientific background! I have read a lot of papers, not understanding them all completely, but getting the main points; it made me even more desperate than getting the diagnosis; (without any need for that to have happened at all), but happening on CLL Topics at least made it possible to read some of the stuff with a sort of a facit/translation. Don’t be put off by or feel undermined by detractors; you have said very clearly where you come from! Thanks and don’t give up; some of us need you to keep sane!
Regards and keep well from Mette
Dear Chaya,
You cannot please all of the people all of the time, nor should you try. There are legions of patients for whom the information you put out is truly a lifeline. Please, keep doing what you do and realize that there will be nay sayers no matter what.
A heartfelt thanks.
JSW
Chaya,
You are the greatest…doing a fantastic job. Who are these idiots? My guess…miserable cynics. And here you did them a favor by opening up the web site so they could benefit from the five star newsletter on the very topic that is probably the most important thing in their life. All done by you out of the goodness of your heart.
Cynics…yaa…that’s what they are. There is a treatment for that but fortunately not on this website.
You are our hero…Chaya…keep it coming.
William Bates
Dear Ms Venkat,
Your clear, informative articles have made quite a difference to our lives. Yours was the website I urged my husband to start reading religiously in trying to inform himself about his CLL after his diagnosis last year.
Not only have you provided us with the basics at a time when we were like a couple of deer caught in the headlights, but your ongoing work allows us to be up-to-date on the latest developments.
We both consider you to be an invaluable resource; and please understand how much all the work you and your family put in is appreciated. You have made a difference!
Yours, very truly,
Laurie Landy
Washington DC
We depend on you, Chaya and family, to put into real people language what can be VERY confusing. I agree that I would be all for going back to registered users only. Isn’t it unfortunate that a few always seem to ruin it for the many? So pooh on all those persons who have attacked you. Thank you for all you do. love sue
Chaya, thank you so much for all you do. I’m so sorry you are having to deal with such negativity and abuse. You are a bright spot in this world that is unfortunately full of dim bulbs.
Heather Dreith
Chaya,
You have been (and continue to be) the best thing that has ever happened in the frightening world of CLL. WE NEED YOU! If you must revert to allowing only paid memberships access to your lifelines, so be it. A few can truly spoil it for many.
Pat
Your perspective is excellent. We appreciate the vast amount of time you put in on cll. Ignore the adhominum attacks.
As I write this I am holding back my tears. Ever since my diagnosis 9 months ago, Chaya and this website along with prayer, supportive family and friends and healthy lifestyle are what is keeping me positive and allowing me to continue embracing and loving life.
Chaya’s website has been a resource like no other providing a basic understanding of the disease we are all dealing with in easy to understand terms- she makes things EASY for us… saves us time…which all of us should appreciate.
Recently Chaya answered personal questions I had about CLL.. her responses came immediately. No solicitation for donation followed.
Chaya’s passion about our disease and her selflessness to help others is obvious and admirable.
Those who do not like what they see should read elsewhere…and I wish you good luck finding something comparable. Something tells me you will be back—this is YOUR LIFE we are talking about.
Thank you Chaya for making a difference in the lives of so many. People like you are rare and I thank God you’re on my team.
Warmest Regards,
Tess in Canada.
Shame on those people who sent you emails that are mean and dispective to you. They must be jerks – It would be great if you didn’t need to read them.
I will not blame you if you need to change your policy regarding non-members getting into your site. But I wonder how you can prevent these Idiots from joining?
Is there a way you on your end can block emails from coming through that are not on your previous list? That way people can read the articles but not be able to email you?
good luck on this Chaya — we need you and it makes me very angry that these jerks are trying to spoil the wonderful work you do for us.
Darlene Dorsey
I am very dismayed to hear that such problems have occurred. Everything about this site has been a comfort to me, not the least Chaya’s passionate commitment to it.
Tom in Durham
I don’t think it is so difficult to register before reading these articles. If registering helps keep abuse/hate mail/disrespect and the like to a minimum, then I am all for it. Life is too short and someone as gracious as Chaya should not have to be subjected to that sort of behavior. And, I love the cartoon from Snoopy. :)
Chaya,
It is sad, but understandable, that some will attack the messenger as they strive to adapt to a CLL diagnosis. Your efforts have been of immense value to me, and I hope the negative comments simply represent some patients’ struggles with accepting reality.
Be well, everyone, and enjoy life.
Jim
Chaya–I too am saddened to hear people attack you. I have found you site informative and inspiring. I hope some foolish people will not discourage you.
Anne
CLL, W&W 5 years.
Chaya –
Unfortunately there are some who have an ax to grind or whatever. On behalf of all of your loyal friends and followers, please accept our gratitude for all your hard work and please don’t let a few bad apples give you grief. Maybe we need to go back to registered members only. There are too many idiots zooming around in cyberspace. They can go elsewhere.
Chaya, Thanks for everything you do for us. Why wait?? Go back to registered users only and save yourself a lot of hassle. Life’s too short…..
Chaya- Thank you for everything that you do. I was diagnosed with atypical SLL this last summer and your site is the only one I now go to. I am very thankful for how you stand up for us and help us to wade thru all the information that is out there. Please continue with the work you are doing. You are greatly appreciated.
Chaya,
Please do not get distracted by people who do not understand strait talk, or compassion, or passion, or objectivity, or the phenomenal need of your work, or this community…!
Thank you for your honorable work.
Please continue.
We would be hard pressed to find ANYONE more generous, genuine, authentic or skillful in doing what you do for us. Like my compadres above, it pains me to think you have to deal with any kind of flak at all. We are with you and have your back. We always will.
Bob Larkin
Hello Chaya,
I have been a part of this community for a long time and it saddens and angers me that you would be getting any kind of negativity from the public. I cannot imagine what they must be thinking about your wonderful service. As far as I am concerned pradickes said it best and registered users seem to be the ones who are really interested.
Thanks for all you do.
John Holman
Dear Chaya,
I value your hard work very, very much. I am very happy that your site exists because it has helped me really a lot to understand my specific type of CLL cancer.
You are one of those few straight-forward, common-sense, altruistic people active in the internet. Please continue your excellent work!
And please don’t burn out: Therefore I strongly suggest to restrict CLL Topics Updates to registered users only again.
Best regards from Germany,
Jens
Please go back to the closed system where people have to register to read. People who want to know will register. It only takes a minute or less to register.
This is the only way to protect yourself and us from the abuse you have experience. I say us, because if you become too burdened by the need to explain this site and your intentions too often, it will inevitably result in us missing out on the excellent and essential work that you do.
Can you conduct a poll on the issue?
– Public access without registration to articles with registration for comments only
– Registration to access articles and comments privileges
Everyone reading this, please encourage Chaya to protect this wonderful asset to the CLL community.
As a frequent internet user, website and forum owner I know how draining it is to answer detractors and critics, even well-meaning and constructive ones. It pulls me (and Chaya) away from the work we love and feel most passionate about – providing advice and help to those who really need it.
It is a sad state of affairs when someone like you Chaya is the recipient of hate mail. When I disagree with someone, I either ignore them or respectfully explain what I disagree with! I can say without hesitation that without YOU, PC, Radha and your site I would be as uninformed as many patients and families (even nursing staff at cancer centers) living with CLL today. Thank you from the bottom of my heart for your dedicated, time consuming mission to enlighten patients and their families living/battling/dying with CLL through your informative clltopics forum. I believe that everyone will reap what they sow, your reward will be waiting for you! Blessings, Eileen
If the above collection of comments constitutes an ad hoc poll, I’d agree with those who advocate going back to a closed system accessed by registered users.
Chaya, you don’t need the distraction of the uncommitted!
It infuriates me that you have to defend yourself against a-holes and idiots.
You have provided me with more guidance than anyone aside from my medical team.
I’ll happily take on all comers that need discipline.
Chaya I second anaturallearner comment and sugestions.
I have to thank you for bringing Charlie Brown saying: Good Grief! We have a lot to do before this year’s tournament!….
I had such a tirying day and felt exhousted, and seeing him with his comment,made me laugh and I felt uplifted.
Thanks for all your invaluable help over so many years.
Chaya
I am new to CLL and the website (6 months) and have found your website to be very helpful and honest. I hope you will remember that alot more of use appreciate what you are doing than dont.
Thanks
Don
You Go Lady!
i have only read a few of the comments already aired …but, respectfully,add mine.
i have a terminal disease that is the same as your husband’s and most of the other registered and regular users.
Yours was and is the only site i go to for information that i know that i can rely on…and that after countless hours exploring other sites.
I come here because i greatly respect your analysis and opinions. It’s an anchor point? for me in this confusing world of dieing from something i can’t see touch or feel.
Your regular audience….knows that you are here from the heart. Please know this.
and “Illigitamie Non Carborundum” –
Love to you and thanks for what you do!!
Chaya:
Over the past 4 years – since i was initially diagnosed with stage 4 cll – your timely online publications and articles have been our (my wife and my) primary source of credible, accurate and timely comprehensive information about cll.
Thank you so very much – you are “the best”! We hope that you will be able to continue with your valuable work (which we know is a labor of love) for a very long time.
We urge all of the new readers to financially contribute to this very worth while cause – to keep it viable.
Thank you so very much!!
Pittsburgh, Pa
I was diagnosed w/CLL quite a while ago and after visiting many, many sites always found myself coming back to this one because of its clarity and because it was packed with solid information. Now, it’s the only one I feel I NEED to read. I waste no time opening up the new articles sent our way & it would not occur to me to bypass the posts. In fact, I regularly check in on the “Latest Comments” – I learn so much!
Chaya, I can’t think of ANY justification for your tolerating hostile, disespectful posts. If this means limiting the site to registered dues-paying members, that’s fine with me. If this doesn’t solve the problem, block the cranks. Please don’t let others destroy your peace or distract you from your selfless work on behalf of this community.
Chaya,
I just read your latest CLL update. I am so sorry you have been subjected to an increased level of frustration since opening up this site up to unregistered visitors. I suggest returning to only allowing registered visitors. If this cuts down the volume of rude behavior, foul language and incivility I say go for it.
Chaya, you are a treasure to me and countless other CLL patients. I DO NOT want the critically important work you do subjected to any interference from uncivilized jerks!
I can never adequately express my gratitude for you and your 2 websites. Your contribution to all CLL patients is invaluable. I was in a daze when diagnosed with CLL last October. Within days I found your websites and I’ll be eternally grateful that I did. All the CLL information you make available was the reason I was able to study, learn and get “up to speed” about CLL.
It’s a travesty that you have been subjected to this very unpleasant and undeserved vitriol. Please know how many of us thank the Lord every day that you are the wonderful, extraordinary woman you are. You have helped so many of us in our time of need and we love you for it.
Patti Kruse
I am a professional editor who does a similar kind of work–namely, making the thoughts and words of experts accessible to a lay audience. My professional opinion is that you are incomparable at this. My personal feeling is that you are a beacon of light in the confusing and distressing world of CLL. Your strong opinions and fighting spirit are things we need more of. But universal appreciation is unattainable. Keep up the good fight.
Chaya,
I recognized your dedication and great service several years ago when you contributed to the acor list. I was delighted to join and keep learning on your flagship site. We thank you, we honor you and we defend you!
Linda for Terry and I
Chaya–
I don’t know of anyone else who could do what you do. We are all in your debt. Keep up the good work and do whatever you need to do to block hateful responses.
Continuing to do this work is the best possible memorial to yout husband.
Cathie Nicholl
Thank you for everything you do for the CLL community I admit I have been a little lazy and not logged in lately, I will from now on as I find what you have to say very enlightening. I have also copied some of your topics to my oncologist.
Thank you Joseph Mercier stage 0 still
Dear Chaya:
My husband was diagnosed with CLL in 2003 and we have made it a priority to educate ourselves about the disease and to contribute to research. We have attended both the ASH (American Society of Hematology) conference as patients and the Leukemia Conference last year in Canada where we had the pleasure of meeting you. We have participated in online programs and in Team in Training with the Leukemia and Lymphoma Society. We have chosen to have treatment at UCSD with knowledgeable CLL professionals. We are currently in our second CLL trial and hope that we are doing good for ourselves and for others by pushing forward what is known about CLL.
After extensive internet reading, yours is the ONLY site we regularly read. Your provide helpful, direct, clear, and compassionate information so that we can MAKE OUR OWN INFORMED DECISIONS. Thank you for helping us to be better educated. We hope that you will continue to provide this service to others who wish to know more about their disease so that they, too, can make good personal decisions.
If going back to a closed system will help you to continue your work, please do so. Don’t allow a few bad apples to spoil this wonderful resource. We are grateful to you for the time and effort you have chosen to expend to help others. We are sure that there are many more who feel as we do. Thank you from the bottom of our hearts.
CLL survivors from California
Chaya,
I am profoundly sorry about what’s going on. In his last days, Bill Duffy was embroiled in a similar discussion on the Albernative Therapies list, from which no one is banned and it appears now that this or a similar person has found a new avenue in which to vent. Bill said then, and I echo now. “NO ONE has done more for us than you.” I will forever be grateful.
Ann
Chaya,
I want to add my voice to the others who have expressed their appreciation and gratitude for the wonderful work you do for us CLL’ers. Just yesterday I spoke to the daughter of a newly-diagnosed CLL’er who wanted information and advice. I told her to check CLL Topics — the best information site.
Keep up your great work and pay no mind to conspiracy theorists and cynical folks. There are, unfortunately, many people who see life through this type of lens. They “know” everything and are not swayed by fact-based research. Since their minds are closed, it’s best to ignore them.
clairejoy
Chaya,
As a caregiver,your site has been 1 of the places I’ve looked to for honest down to earth information. Please do what you need to do to filter out the “garbage” from others and continue on for us!
Diney
My first post to this article was made right after my “you got mail” song indicated an email from Chaya. In my post, I said, “I love to be the first responder” .. HA .. by the time I clicked Post, five others had already posted. Chaya, we are here for you. You are watching our backs and we are watching yours. I am so grateful for your site, for your intelligence, compassion and dedication. We support you, we salute you and we need you !!
Lynn, so thankful you are here to shine some light on this scary path
Keep doing exactly what you’re doing, Chaya. I very much appreciate all your efforts on our behalf.
Chaya,
As someone who owns a business that deals with millions of customers I know what you are going through! When you deal with large volumes of people you are bound to run into a few kooks.
You always have been, and you always will be, the go-to person for anyone truly interested in learning what is happing in the CLL world.
There are those who would tell you to develop a thicker skin that is poor advice. If you weren’t born with a thick skin you aren’t going to develop a thick skin; unless you have certain forms of GvHd:)
So, soldier on and know that 99.99 percent of the people appreciate the hard work and dedication you put into the site. The newcomers fail to understand your level of sacrifice. The old timers like myself understand you are changing the world one word, one sentence, and one article at a time.
Good job!
Hey Chaya, Our lives are better because of YOU! Our doctors are better informed because of YOU!
Many thanks, Kodirea
Bummer….sort of reminds me of our dear friend Socrates…..who gave us such a great deal on the subject of “Ethics” and The Socratic Method – that form of inquiry and debate between individuals with opposing viewpoints based on asking and answering questions to stimulate rational thinking and to illuminate ideas)….
So…I guess it is an old story, an ancient story that likes to repeat itself….(doesn’t make it any easier to swallow) ….Enlightened teacher ( in this case Chaya) tries to stimulate rational thinking and discussion….gets persecuted…
I trust that like Socrates…that you and your family’s work will always be remembered as work that brought us to a greater awareness…a higher level of consciousness…
Or to put it a little differently….as Gary’s dearly departed mother would often say (she was a hairdresser for 61 years and thus had a PhD in “human nature”)….
“You know don’t you, they aren’t all locked up!” (And some of them get CLL)
:) Aaron & Gary
It saddens my heart that so many people would be rude and hateful on a site which is so wonderfully designed and run. You have very clearly stated your credentials (which I, for one, am impressed by) and do a tremendous job of sifting through medical jargon and making it accessible to me. Thank you!
Debbie
“There has been an up-tick in the number of hurtful emails I have received since the beginning of this year…”
Chaya,
The anonymous hate on the internet is notg someting to feel hurt by. Small people are but mosquitos on the windshield of live and they will not hurt you. Those of us who have a diagnosis even if smoldering are so gratefule for everything you have done for your “man”, for us and for the community of fear we all go through that there is not a way we can adequately express our appreciation and scientific fact based orientation. You are the rudder in the ship of our trvails through this unexpected ending.
Orion
Chaya,
I will be forever grateful the day I found your site. I had just been diagnosed with cll and very lost. You have helped me to better understand this disease. I truly appreciate all you have done. Please do not let these ignorant people take away what has become so dear to your heart!!
Kathy
It has all been said, “Ditto”! I’m really sorry about the reasons you had to write this.
Just finished my last of PCR yesterday. You have keep us informed over the last 5 years of treatment and given us options to think about. It lets me discuss and challenge “The man”, whom I believe is doing a great job with me.
Tom
Dear Chaya,
First, I would like to once again thank you for the personal time and devotion you put out for all of us! Thank you!
To all of Chaya’s “detractors” let me enlighten you a bit. Just over two years ago I was diagnosed with CLL. Being one of the rare ones that had to start treatment right away to save my life, I turned to the internet to learn more about this monster that appeared in my world. I found volumes of information but most was old and outdated. The information on those sites said I wouldn’t live long enough to see my youngest son graduate college much less high school! Most of the articles were so full of medical jargon that it was like trying to understand something in a foreign language and have no idea what that language was! Then the fates directed me to CLL Topics and turned my world around and cleared out my confusion and fears. I finally found a place that could explain the process, the latest advances, and possible the newest and best practices for a very confusing disease…and did it in such a way that my chemo fogged brain could understand! Chaya has always made it plain and clear to us that we were to read and research for ourselves. I have never, ever been under the impression that she was “bossing” us.
There have been several occasions where I will bring up something that I have learned here with my oncologist. To say that my oncologist is impressed is an understatement. Because of my learning here and at other sites as I research my disease, he is very comfortable discussing my concerns, possible future treatments….including some that are currently in clinical trial. He knows that I will understand and act more as a partner in looking at future treatments. Once again, I must thank Chaya as she is a great teacher in my book!
I understand the desire to open up the site for all that are searching for current information. Normally I do not go to sites that require a registration….too many bad experiences with sites like that. If it was not for the raves and recommendations I got about this place, I would never have registered! However, those that are in search for valuable knowledge may not have had those recommendations. How many could have benefited from it and yet bypassed it because of fear of registrations?
However, it tears my heart apart to learn that Chaya has had to suffer from attacks because of opening up the site. I will support any decision Chaya makes concerning this issue because she is like family to me. Like family, she talks to me in terms I understand and in a way that I know she cares about me and all my other CLL family. Like a family member, I will take on anyone that tries to hurt Chaya!
Elaine Kane, 1 and 1/2 years in remission and counting on being around a long time thanks to wonderful people like Chaya!
Chaya, I so appreciate what you’re doing – please don’t stop! I don’t post often, but I always read what you write, and you have made and are making such a difference for us, the CLL community.
Thanks Chaya. I appreciate your clarity of writing and the integrity of what you write. I have used your site as a key source of valuable and authentic information for a number of years. It forms the bedrock of my personal advocacy and information about CLL and I depend much on what I read to build my own information base. I value this site enormously and support what you do and the generous donation of your time and personal skills. Please keep it up and be encouraged; there are a great many who deeply value your work in this area – as evidenced by the volume of responses here!
best wishes,
Piers. Mt Beauty, Australia
Chaya,
I’m one of the more silent registered members here. I prefer to stay in the background, quietly learning and receiving valuable information about this monster that wants to steal our lives. I would like to thank you for everything you’ve done and will continue to do on our behalf. These updates have been a godsend, and I pray nothing stops you from continuing your work…certainly not the trolls that stop by for attention with their insults. Guess they don’t know how tough we all are!
Blessings to all,
dee
Chaya, you are irreplaceable, with your UP- TO- DATE reporting, researching and your valued interpretations. Been checking your site regularly since 2004, and its loss would certainly affect me emotionally!
I AM BLOWING AIR AS HARD AS I CAN RIGHT NOW, ALL THE WAY FROM CANADA, TO KEEP THE WIND GOING IN YOUR BEAUTIFUL AND COLOURFUL SAILS !
SINCERELY YOURS
1. Foremost: my undying gratitude for the invaluable work you and your family have made available to us.
2. “I am told most inter-net sites are full of rude behavior, foul language and inconsiderate members.” As I posted in previous articles, this is not a website, but a community –whether filtered by pre-registration of by the display of respect, shared values & behaviour.
3. Perhaps the newcomers are not interested in becoming part of a community; the rapid rise in site readership is a sign that those people were aware of the site but never bothered to register–why?!
4.You will never please all; but we will always respect you and your work. I hope to be more responsive in the future.
5. I agree with all the comments above– I support whatever decision you make about site registration.
Thanks for all you do– keep up the wonderful, compassionate work.
Cristina from Brazil
Hello Chaya,
Let me say that I am not always cheerful after I read your reports,
like the last one which excludes me from the possibility of being
included in the latest prevention approach. That being said, I do
trust whatever you write COMPLETELY. As one of Dr. Byrd’s patients, I just have to take my lumps as they come. Literally.
I regard your website as essential to my personal survival. If you ever need some additional financial assistance, I will contribute again, having done so right after this year’s appeal. Please keep up the work and don’t let the stupid f&%$#@s drag you down. Doesn’t bother me a bit if you receive a stipend for your work. Why the hell not? When you go to conferences, please ask for us to pay back your expenses. Only fair.
Dr. Dave Mikol
Chaya,
It sounds like a few apples had worms in them. You are doing the CLL community a great service. Please don’t let those bad apples get to you.
Thanks for all you do.
Cary
Sadly I am one of those people that has not logged on or weighed in for quite some time. But I read every single update as soon as I receive an email announcement, even if I don’t log in or comment.
Everyone at my oncologist’s practice reads the updates and this is the first site they recommend to the recently diagnosed.
After six years I am in need of treatment again and I count on CLL topics to keep me apprised of the latest research and findings. This is extremely important to me as I had frightening problems with my prior rounds of chemotherapy. Thanks to this site, I found out that I was NOT alone and it was reassuring to me and helpful for my onco. There is nowhere else that this much clear information is amassed and our intelligence is trusted. That means so much to me.
I am heartily sorry that there are those that feel compelled to behave badly. There seems to be a lot of that going around these days.
I agree with Dr. Mikol. I think there are many of us who would be only too happy to help with your conference expenses. Don’t hesitate to ask!
Cyndee Giebler
Chaya,
I had just finished referring someone on the ACOR list, in a personal message, to this site when I opened your new post. Your absence would leave a tremendous gap. You keep us informed on what is going on in research and also on how it is panning out. I have learned a great deal over the years and admire you for continuing in the face of great personal tragedy.
My only request is that for those who do not feel comfortable contributing over the internet, is there an address where we can send a check? (I probably just missed seeing it since I think I contributed last year.)
Please keep up the good work.
Helen
Chaya:
Don’t let ignorant input stop your fine work.
Thanks so much for your input so that we all learn the value of sites like yours.
Chaya –
I am one of those blessed to be “watch and wait” for 4 years now, but because of the work you do here it can more accurately be described as “watch and wait and LEARN”. I agree with the comments above – life is too precious to spend one second of it being made miserable by some moron(s). If registration spares you pain, go back to it. A small thing for the CLL community to do to access so much information, love and compassion. Thanks for all you do.
Jan
Dear Chaya – You and your late husband have been the best in the work you do to make CLL information to all. There should never be a criticism. My husband is in his 19th year of being diagnosed with CLL. He has been in some kind of therapy most of the time since 2000. Next week he starts Azeera (Humax dh20). Whatever therapy he was on I could refer to topics for information, sometimes learning things the oncologist (as much as we love him) was not aware of. I cannot thank you enough.
Fran Silverstein
Dearest Chaya,
The world is a better place because of you. You’ve been soo helpful to me as I am W&W since 2002, and now very comfortable with the knowledge you have given. You’re the BEST! Anna
Even if I don’t always agree with your perspective, I will treat you with respect. I was a caregiver like you to someone who died of cancer (Richter’s Transformation from CLL to Lymphoma) not long ago. I know that you are trying to make your husband’s passing have meaning, by educating and supporting others. If I had more energy, I would try and do the same. But I don’t. So keep on keeping on, knowing your husband and many others who are still here are looking on your work with a smile. We should all be nicer to each other, for the time we have here.
Ojibwak
Chaya,
As a newcomer all I can say is thanks. I turned to your site for information that was deperately needed by someone new to this insidious disease. If making this a closed site is what is needed than I too will follow. Thanks for all you have done and please keep up the good work so that we may fight the fight. We CLLers need to understand in laymans words what we are up against.
Bill
b.lee
Chaya,
Don’t let those turkeys get you down .You have a loyal following without them and if you need to go back to registration, that is OK with me too. You are the source of info. for many of us – who else breaks down the latest in research findings to an understandable format that we can understand? You are a gifted “teacher” and many of us are still here and doing well because of new information we have learned about through your articles. Keep up the good work, and thank you, thank you, thank you. Barb
Well said. You do a great job, and there was never a doubt in my mind about any of the issues you brought up. Your site and commentaries are a very valuable resource to me.
I totally agree with b.lee’s comments.
Thanks for all you do.
John
What a great teacher, analyst, and writer. I can’t think of anything to add to these posts, except to join them in thanking you and asking you to make it easy on yourself. We don’t want you to burn out. Feel free to go back to registration.
Carter
Chaya,
First and foremost, my family and I owe you a great deal of gratitude. I am a 35 year old father to three boys (ages 1, 2, 3) and in the “prime” of my life. I was diagnosed with CLL 4 months ago and was lucky enough to find this website to assist in my families research and understanding of this disease.
We have learned / continue to learn so much from the research articles you (thankfully) help translate as well as the insight from Harvey’s Journal and the contributions of other members. With this knowledge, we have been fully armed and approached this beast with our eyes wide open. Interestingly, at my last specialist visit, my wife and I asked, “do you get this many questions typically?” To that question, the response was no, not really. What a sad reality I believe that statement to be as without fully learning all the complexity that is CLL.
Let me tell you, the curiosity inspired in reading your articles, summarizations and primers have driven my family, me, and my dream team of physicians to conclusions and steps that, without my full direction and attention, would have likely been overlooked or missed.
Without question, we wouldn’t have managed thus far without this amazing resource. For that, my family is eternally grateful.
Past the website and commentary though, your personality flows through personal correspondance as well as your willingness to reach out to perfect strangers for phone calls, advice and commentary on approach and just general knowledge and experience sharing.
If someone is so foolishly ignorant to not understand our world is not plain vanilla, perhaps their perspective isn’t all that important. Greatness is achieved by overcoming adversity in complicated times. People who are or have decided to be surrended find refuge in anger and hostility.
Keep up the amazing work, you are an inspriation….
John
Dear Chaya,
You have our 1000% support, for all of the reasons mentioned in previous notes. It brings tears , just thinking of our “Hero” being treated badly in any way. We respect you, your knowledge, your daily sacrifice and giving of your time for the whole CLL world, & for your deep &personal caring for every one of us.
I too, recommend your sites to all new CLL people that I come in contact with.
Just a couple of thoughts: “When we allow negative people to control our thoughts/actions, we have given
THEM power over us and our time, and allowed them to steal our JOY.”
“FOOLS are people who think they are ALWAYS RIGHT, and use anger/criticism
to control other people.”
Chaya, & ƒamily, you have done a superb job in everything, and in your “defense” and clarifications with this latest update. None of that hate-mail/or negative criticism is worth another second of your time, in defending or thinking about it or giving it/them control or power over your wonderful work.
Please know from all of the supporting accolades previously written that your service is much needed.
There will never be enough words to tell you how much we care about you and your family!
With the greatest respect, Allen (CLL) & Shirley Thanks for your inspiring talk at Niagara!!
Chaya, when I read this article my heart was breaking for you really. I have been on this site for so long as a member and I can not tell you how much I believe this site and the work you and your late husband did have helped me make informed personal choices for my CLL treatment. I can say without what you have presented here I believe I could have made more than one serious life choice mistake. Well ten years out now and I am still alive and kicking. You will always in life have the bitter and uneducated and just mean spirited people that attack even the best run operations on this planet. Just know that those that know why they are alive will have none of the negative slander that you have to deal with. I am sorry again you have people hurting you and your efforts but it is not justified. God Speed to you Chaya.
I guess I could be guilty of being a troll. But if that label is targeted at me, I feel it truly sad and regretable. The fact is that I love Chaya’s site and I truly cried when PC passed away. It was personal to me. Like everyone of you before me, Chaya’s site has helped me immensly.
But I did live an experience that has influenced how I feel about a small portion of what Chaya does that I personally feel hurts the CLL community.
While attending a prospective Clinical trial, I talked to one of the researchers about Chaya’s site. He is a researcher who is passionate about CLL and finding a cure. The bottom line from his perspective was that every time Chaya recommends a trial, it is more difficult to recruit patients for his own trial. I believe that others researching i CLL may voice this same concern or issue.
Thus, Chaya deservidly yeilds a powerful sword in the CLL community. She deserves it. I will be the first to praise her and honor most of her opinions. But I for one personally disagree with Chaya about recommending one trial over another when there are so many good trials being done. Considering the strength of Chaya’s voice in the CLL world, it simply drowns out other viewpoints imo. In short, such a powerful sword needs to be yeilded very carefully. I feel that despite the good intentions of Chaya, such recommendations may ultimately end up slowing the cause in finding a cure for CLL by slowing down the recruitment for the rest of the trials that aren’t catching Chaya’s eye. The best strategy for us all of us is to intelligently search out the many trials and help get most all of them filled. Not just a select few.
Thus Chaya, imo, you simply have become too powerful of a voice to recommend sporadically one trial. think about it. Wouldn’t it be better for the CLL community if your voice changed from recommending one trial to recommending many trials?
I can honetly tell every one of my CLL friends. I will offer to get the ball rolling in establishing a system so that we can all better understand the many trials being offered. This is a project that would only amplify Chaya’s great efforts and work even if it was done unattached to Chaya’s great web site.
So, in this regard, I am not a troll. Just someone who wants CLL cured or controlled ASAP.
And Chaya, even if I’m a troll to you, I will always appreciate your hard work and dedication to CLL. You will always be my hero!!
When I finally meet you, if you let me, I will give you a big hug of appreciation, even though we disagree on one small issue.
Regards to All,
Leo
Chaya has a very impressive scientific background but what I am impressed with mostly is that she did not give up the hard work and dedication to us and the CLL community when she lost her beloved PC to this “good cancer”. I am a wife and caregiver of a CLLer and I know that Chaya knows truly what we are going through. Thanks to Chaya and Radha for continuing to educate us and help us get through this fight.
Chaya,
I also agree with the previous commenters. Please continue your great work. Thank you for all you do.
We love you,
Monique
“Any fool can criticize, condemn and complain and most fools do.”
Benjamin Franklin
Chaya, I am so sorry you have had this horrid experience. I do so admire the fact that and your daughter “keep on keeping on” in the face of all you have lost. Your generosity in devoting your time, money and energy to those of us who are suffering from the “good” cancer that proved fatal to “Harvey”. During the three years since I was diagnosed with CLL I have depended on your common sense approach to help me stay balanced during the ever increasing challenges as they arise. I just don’t know what I would do without the support of you and this group; there is no other way I could have learned so much. I thank you from the bottom of my heart.
Betty
Chaya,
I have a MA in biology and taught biology and chemistry for years and can read the scientific journals, but with great difficulty. They are too technical and contain too much vocabulary that is beyond my area of expertise. Because of your background and intense interest in this field, you are able to “interpret” the jargon. Many writers in the area of science are not wordsmiths. When I submitted my research to a scientific journal for publication, my professor made me rewrite it many times to make sure it was to the point and scientific. It did not read like a magazine article, nor was it supposed to. But for us to read journal articles and abstracts on a very technical field like CLL,we are handicapped. You do us a great service and having you on our side as a “consumer” advocate, gives us insights that we would not ordinarily have. Please, please keep up the good work. Thank you.
Leo:
I am glad you have decided to publish the comments you have voiced on other sites on Updates as well, since it gives me a chance to rebut your criticism directly.
First, I do not have anywhere near the kind of power you think I have. I would have to be nuts to think I wield that kind of power. Megalomania would be necessary.
Most clinical trials in this country and Europe are conducted by drug companies and not research institutions like Roswell Park, OSU and Mayo Clinic. Drug companies have ways of recruiting patients that patient advocates like me cannot touch. They have MONEY with which to hire companies to do the recruiting for them, directly from “strip mall oncologists”. The situation is even more bleak when you consider poor countries in Asia and Africa. Any one read “The constant gardner” or watched the movie? This Le Carre novel will make your hair stand up – I highly recommend it to all you conspiracy buffs out there.
Second, “recommending” all trials is the same as recommending none. I do not have the time for that kind of political-correctness gone crazy. somebody was telling about their kid’s school where each and every student was classified an “honor student”. If all trials are reviewed as excellent, how can we watch out for those with poor design or lack of good science backing them up?
It is obviouus from the comments of our members that they want me to state my opinions, clearly tagged as such, and then they can make their own choices, thank you very much.
What gives me the right to make the calls I make? I guess it is the credibility I have earned over the last seven years. The only “power” I have comes from the trust I seem to have established with my readers. Heck, it sure sounds like I am doing something right!
Yes, I have turned down more than a few requests to review clinical trials in my time – for a variety of reasons. The most common reason is that I did not think the trial was well designed or had good science behind it. Recently I turned down a request to review results of a trial that reported at the recent ASH2009 based on just 2 patients, as of now. I offered to consider reviewing it down the road after they got more robust data.
There is one other reason why I do not review clinical trials that I do not regard highly. I do not want the hassle of getting sued because some drug company or other thinks I have not been fair to them. No one can sue me for being silent, for choosing not to review their technology or clinical trial. That way I don’t waste my time and that of my readers – everyone is happy. Well, almost everyone.
Last but not least, I took strong exception to your charge of nepotism on my part, in one of your emails to me. NEPOTISM? Because I sweet-talked my daughter and son-in-law to do their share of pro-bono work for this patient community? Unlike me, my kids are not “retired”, they need their day jobs to pay the bills. Radha and Pete come home tired from a full day of work, make and eat dinner and then put in a couple of hours of work on this website before going to bed. Topics and Updates have always been a family affair. First it was PC and me. Now the rest of my family has joined in the effort. Radha and Pete do good work, ask for nothing in return. Their roles in this family crusade are clealy spelled out. Calling this “nepotism” was unfair, unwarrented and possibly worthy of being called troll-like behavior.
My life and my opinions are here for all to read. If you wish I can dig up your emails to me and publish them, but only with your prior permission. As I wrote to you then and do so again now, you have always had more grandiose ambitions for my websites than I did. There are only so many hours in the day and in any case “world domination” is much over-rated ambition and most decidedly not my gig. Then and now I offer you the same advice: don’t tell me all the things I can be doing. Why would you want me to anyway, since it would only make me more “powerful” as you put it. As they say, put your money where your mouth is, start and run your own website, do it the way you think it ought to be done. If I remember correctly, you will have an advantage over me since you have medical educational background?
CLL Topics and Updates are free services. One major reason why we chose to quit being a non-profit organization raising money is that after my husband died I did not want the fiduciary responsibility of managing public money. The best part of this “job” is that I do what I can, as well as I can, for as long as I can. No one is irreplaceable. I have no illusions on that front. Life, CLL and patient needs and patient advocacy will go on long after I have logged off of my laptop for the last time. Phew.
Chaya,
I think the outpouring of support and encouragement for what you do says enough. I have been on the site for about a year and have found it a life saver in terms of information and support for this difficult disease.
I understand where you are coming from here and so do 98% of the participants. I read through any biases and formulate my own opinions here and with any other research I do. I have no idea if these individuals have the disease or not but for those of us who do we want to you to know that what you do has significant meaning to us and we hope you don’t “log off” for a long time.
Thanks
David
Chaya:
You are a beacon of hope for many of us lost in a sea of medical jargon and ever-changing options. We do not care if some don’t get it. They need to stop logging on to a site they do not support. I am sure you have suffered abuse you are too responsible to print without permission. Breathe. Dissenting voices are everywhere. We are not ignorant cult-like members following you like brainless ghosts. Everyone in this community was desperately searching for a lifeline when the waves came crashing in. We all found you and continue to connect and discuss because we value it.
Love Barb & Blair
Many and heartfelt thanks, everyone. Did someone say I tend to be overly longwinded? :) For a change, even I am at a loss for words. We will keep the open access for a while longer, see how the experiment shakes out. All this may be a storm in a teacup, it may settle down nicely given a little time and patience.
Barb, you hit the nail on the head. This is no cult, I am no cancer “guru”, and you guys are too smart to be sheep. I doubt you will buy any snake oil, even if someday I go over to the dark side and start peddling the stuff. Just saying.
Now that we have once again defined the role of this site, lets get back to work.
I think the next article will be provacative as well. It is all about CT /PET scans. When to use them, how to use them, why to use them. What the experts have to say about their use. Risks and rewards. Be sure to log on so that you can read all the comments! People tend to have strong opinions on this subject. It should be fun.
Hello again, Chaya & all,
A general comment about communication & easily available knowledge about trials.
With several close friends with CLL, I read Topics & Updates faithfully. Last Spring, Chaya mentioned on her site (or e-mail) that there was a Natural History Study on CLL being done at NIH in Bethesda,MD.
I had not heard of it before, but was able to get 3 of my friends to apply. I was told that for the previous year there were 8 participants, and after the notice from Çhaya, suddenly in one month there were 180 more. It was only because of Çhaya that we became aware of this. One of my friends has her 2nd appointment in April, one a first appt in Feb. and the 3rd is still on the waiting list.
I want to thank Çhaya for letting us know about the NIH study. It seems difficult to find reputable & scientific trials or studies that might fit individuals needs. I have been to both Ohio State & Mayo, & both times heard the words from 2 of the BEST CLL experts/researchers, “You won’t qualify for our trial.” We were never told about ANY other trial anywhere that might fit our situation. I have asked the question, “How do we find out about good trials?” with no answer, nor with any suggestions about where to start looking. We have NOT heard of the “so many good trials out there”, Leo . I think there is a need for that kind of information, in one place.
CLL IS a full time job, and most of us don’t have the time to do that kind of in-depth research.
So we depend on people like Chaya, to help us along the way.
Seriously, Leo, maybe Chaya is right, and maybe that IS an area that you would be gifted in.
I do not know you or your qualifications, but I think there is a need for trial Info. . And maybe something “productive” can come out of this discussion. Leo, I do not know which CLL researcher you were referring to when you said that when Chaya talks about a trial, he/she has more difficulty recruiting. My suggestion to that CLL researcher would be to do some promoting on CLL forums, talk shows about CLL or other sites. Had he/she talked with Chaya about announcing it in Updates (final say would be Chaya) , or given Chaya a chance to review it? You cannot recruit if you do not get the word out there, and there are other places to let people know what kind of trial is getting started. To blame or hold Chaya responsible for his/her not getting people for his/her trial is NOT taking responsibility him/herself for letting people know on a larger scale, about his/her trial. I would assume you don’t get a good recruitment if you don’t tell people about it & make it widely known. Not everyone qualifies for all trials, I know.
There have been very hurtful words said, and we ALL hurt when that happens, especially when it happens to someone we care deeply about. I would hope that we don’t let these words and bitterness destroy the tremendous good or the closeness of this CLL community.
I would encourage Çhaya, to keep sorting out the trials that you have researched, and trust & know about, and keep passing on that information to us just as you have, in your own excellent manner.
How else will we know?
We learned at Niagara that CLL people have low participation in trials. Maybe if they were more visible, people would be able and willing. I would hope that anyone talking about trials, would hold to Çhaya’s high standards. Is there any site now that talks only about trials?
Chaya, you are offering us a service that is far, far, beyond measure. We trust & depend on you. THANKS!!
Shirley
Cheya & family,
Ever since my husband was diagnosed with CLL in 2007, I have relied on your website to educate myself and obtain valuable up to date information on the disease. I am so sorry to hear that your character, ethics, and credibility are under attack. It is clear that a majority of readers feel that you provide a VALUABLE service to the CLL community. Please don’t let the few nay sayers convince you otherwise. The fact that you started this web site to share information, and the fact that you continued after PC’s passing shows your sincerity and is indicative of your dedication to the cause.
Please accept my sincere thanks to you and your family for this service. I don’t know what we would do without the education that you provide here.
Kris
Chaya
Its obvious that you and your work is highly respected by the overwhelming majority of readers. My hemotologist says that I know more about CLL than he does, and my source of information is CLL Topics.
Keep up the excellent work, please!
Michael
Australia
Chenya,
It pains me to think that there are such small minded people out there with so much self importance that they think everyone and anything is subject to and inferior to their cherished points of view, causing such unnecessary problems.
As a scientist of 30+ years I know balanced presentations when I see them, yours are up there with the best.
Please do not be disheartened, I agree again with pradickes, and at the risk of being a bit uncouth, I think those detractors need the Agincourt salute, an old English expression which I cannot translate directly but is two words, four and 3 letters respectively.
Lawrence (UK)
Dear Chaya:
Thank you for everything you do and have done for the CLL community. Your informative discussions regarding CLL have helped me tremendously and I know many others as well. I am sorry you have been subjected to rude an insensitive comments. Thank you so much for your dedication and great efforts.
Regards,
Laura
Dear Chaya –
I have been using CLL Topics regularly since my diagnosis in 2003. It is by far my most useful source of information. Thank God it is completely free of the alternative medicine mumbo jumbo and any commercial bias.
I read every article you post although I have not been logging on recently as most times I don’t need to write a comment. However, it would be no inconvenience to go back to logging on if that helps to keep out abuse.
Please keep up the good work. It is invaluable.
Phil
Cornwall, England
Dear Chaya,
It is very sad that you ever felt the need to write this article, but having said that, it is as usual beautifully written and very much to the point.
You do a fantastic job and clearly there are very many of us who depend on you for an insightful and intelligent approach to dealing with our CLL challenges.
Please do not let the thoughtlessness and malice of a few obscure your sense of the true worth of what you do. And if it makes it easier for you, please do not hesitate to revert to registration-only to reduce the volume of nonsense and rubbish sent your way. You most certainly do not deserve it. Quite the opposite.
Many many thanks for all you have done and continue to do for me and for all of us,
Patrick
London UK
Your articles are much appreciated by me.
Malcolm
London. England
Chaya,
I had to leave a comment. Thanks for all you do. There are idiots today who seem to want to discredit the good thinks some people do for others. I am so glad you decided to put them in their proper place. Again THANKS for all you have done and will continue to do for the people who visit your website looking for information.
Bruce—–10 years fighting the dragon day by day!!!!!!!!!!!!
Chaya,
I have been on watch and wait one year and I wouldn’t know anything without CLL Topics. I so appreciate all that you do. My local oncologist when asked what I could do said “nothing”. Now because of you I am in the study at NIH in Bethesda and am still trying to learn all I can. Thank you, thank you, thank you!!!
Dearest Chaya, Radha and Pete,
It seems that no good deed goes unpunished. Please know that your gift of CLL Topics/Updates has helped so many of us CLLers and our caretakers beyond measure or words. As I continue my CLL odyssey (emphasis on the “odd” with this unpredictable disease)I look forward to continued enlightenment via your wit and wisdom.
To insure that you and CLL Topics/Updates will be here for us in the future, please let me know where to mail a check. Thank you Chaya, Radha and Pete, for all you do.
Respectfully,
June