Half-time status report
“Updates” made its debut on January 1 2009, a one year experiment to see if we can keep alive the crusade PC and I started with CLL Topics. Fortunately for us our daughter has been more than willing & able to step into her father’s shoes. We are now half way through the year and it is a good time to pause and take stock. I would like to give you a status report as well as ask for your feedback.
- When Updates went online I hoped we would have reached the 1,000 mark in registered members by the end of the first year. I am totally blown away that six months since coming online we have 2,000 registered members. We have members in just about every corner of the globe and there is a steady stream of new members each and every week.
- Our reach within the patient community is reflected in the impact we have had on clinical trial recruitment. Two trials we reviewed (the NIH/NCI trial and the Vaccine trial at Nevada Cancer Center) got sold out within days of our published reviews. Each trial now has a waiting list of patients who want to volunteer.
- Hopefully we had some impact on the FDA advisory committee’s vote on Humax-CD20 (ofatumumab, trade name Arzerra) by testifying and highlighting patients’ perspective on this important drug.
- We have published 32 articles thus far, averaging little over five article per month. With a single exception we have stayed on topic.
- We have upgraded our service with email alerts announcing each new article, something that our members seem to appreciate. Thousands of you read the articles within days of publication and many of you have participated in the active discussions that follow each article. I am delighted the participation seems to be increasing with more and more of you getting involved.
Dollars and Sense
I do not believe in fund raising just for the sake of getting more money. Dollars matter, but your vote of confidence has meant a great deal more to me than the dollars. Thank you. I am happy to report we have met our annual goal for donations and enough is enough.
Therefore, you will notice we have removed the “Donate” button and related pages from Updates website. We may re-initiate donations again beginning of next year if they are needed. For now, my sincere thanks to all our generous donors.
If you have signed up for a recurring monthly donation on PayPal you might want to visit the PayPal site and cancel further donations for the year.
Feedback: Now it’s your turn.
- Please take a few minutes to complete the survey. It will take less than a couple of minutes of your time and you can access it by clicking on this link: survey
- It is important that we hear from as many of you as possible to get a fair and accurate picture.
- After a week of so to give everyone a chance to respond, I will publish the results of the survey on this site so that you can see what our patient community has to say about “Updates”.
- Your responses to the survey are anonymous, I will not know the identity of the respondents.
- If you have comments that are not covered by the survey, please feel free to use the “comments” section below. You are also welcome to write to me personally, as always.
Please speak up. Your opinions matter to me and it really helps to maintain the two way communication. In my darker moments it is all too easy to feel like a voice in the wilderness.
Be well,
Chaya
51 comments on "Half Time"
Congratulations on meeting your financial goals. Glad I helped a little.
Always fearful that someday the website will wink out of existence.
Glad for the reprieve. Thanks again for all you and your daughter and PC do.
Dave Mikol
Detroit
Thank you for your efforts. They mean so much to us , newly diagnosed who are surching for information. Bless you. Sheila, Chicago
I had always intended to donate something but had never gotten around to it – I am thrilled that the non-procrastinators did their part and will try very hard to meet my obligations next year. When I see your name among the list in my inbox I always open it first – usually reading the article right then if time permits. I have found so much information about this scary disease called CLL. My “type A personality” finds very hard to accept “watch & wait”. I have found some relief in learning as much as I can about CLL – and much of that information has come from Updates and CLL Topics. Thank you – you are appreciated.
Lillian Terry
Oregon
Chaya – I need to tell you……..I admire and respect you and your daughter as well as your husband even though he is no longer with us……so very very much. We have never met but I can truly say that you are certainly one of the few people I totally trust to be honest in all matters with me. Including but certainly not limited to…..financial matters. To remove the donation button on your site (our site really :-) because you have ‘enough’ for now is for a better word…extraordinary. I am not sure what this means exactly but to do this says so much about your character.
Thank you for being who you are to us.
love – Darlene Dorsey
California and Maryland…..
Chaya, We met at the 2009 Niagara falls Conference. It was a thrill to meet you, shake hands, and listen to your speech. What a warm, wonderful smile you have.
When see that you have an e-mail alert, I open that one first.
Also, re. my monthly donations, I really don’t know how to d/c pay-pal so just save up my small donations for a rainy day. Patricia from Maine
Done the survey – although one tries to answer these things objectively, it’s very difficult to write anything other than excellent! This is quite an achievement by you, considering that American stuff is usually addressed, naturally, to a US audience, and I am one of those foreigners!
Any time you want to re-open the donations bucket let me know – the pipework is well connected from here!
Lawrence
(Cornwall, UK)
I appreciate how much you have done for all of us you have done an excellent job educating us all about CLL.
Thank you so much
David
Chaya,
I agree with all the posts before mine, and in addition I cannot tell you how reassuring it is to have such a formidable mind as yours on the case. Not only do you make sense of impenetrable medical gobbledegook, but you do it with a blend of humour and common sense that makes it all the more accessible.
And now you ask us to suspend our donations too. I hope it won’t be too much of an inconvenience if I fail to follow your advice just this once.
Many many thanks
Patrick (London UK)
Chaya,
Words cannot describe the appreciation and gratitude I have for your efforts, as well as PC and your daughter’s contribution. CLL Topics, including Updates, are the “gold standard” for a patient information and advocacy website, and I do not hesitate to recommend it to anyone I learn is dealing with CLL.
I trust you will not hesitate to communicate whenever the “voice in the wilderness” feeling comes on. We all want you and Updates to succeed and to be a living example that individually and together we CAN make a difference. Your efforts never cease to amaze me.
Take care,
Phil in PA
Without your articles I would be kept in the dark. Your the people I believe. Please keep up the good work and God bless us all
MelodyMan
Chaya,
I love Updates, find it very helpful and cannot thank you enough for all you do for us.
Thank you sounds so inadequate.
Chris
Adks. NY
I’ll chime in. Terry and I truly believe that you helped save his life when one doctor told us he would “twist his arm to get an autologous stem cell transplant.” You advised getting a second opinion which we did. He didn’t get it and so far his CLL is stablized after almost two years. We are indebted to you!
Nancy Moran
Tulsa, OK
I wish to echo Dee Dee above. Chaya, your extrodinary character never ceases to amaze me. What a blessing to us all that we have you, your daughter and CLL TOPICS continuing to roll.
Bob Larkin
North Branford, CT
You’re my voice in the wilderness! Thank you so very much!
Janet
Chaya,
I look forward to “Updates” and still get excited as I check the website routinely for more updates.
As was stated above. You are my voice.
Thank you for being there for me.
Rita
Thank you for all the information, it has helped me. I am enrolled in the NCI study because of you. Thank you again. Kathy, Winder Ga.
Dear Chaya,
When I was diagnosed with CLL eighteen months ago, I was shocked and scared by the reality of it. “Wait and watch” made me feel helpless. But finding this site and knowing that you have our interests at heart has given me hope. I so admire your ability to take complex medical information and make it readable! Thank you so much-your family’s dedication to this cause is remarkable. God bless–
PM, Connecticut
Dear Chaya,
Since more than a year I am reading your updates and what went before. Regularaly I am translating some part of an atricle of you for the Dutch CLL patients. I can feel your satisfaction as you are doing this voluntary. Hope you can go along for a long time.
Thanks a lot and be well!
Joost
Morning, Chaya…
Took the survey, and read the comments on this topic to date, and I have a suggestion that I mentioned to your daughter when you started “Updates” that you apparently haven’t found a need for yet.
It is great that you email us when new topic is presented, but as the list of topics gets longer, it’s getting to be quite a chore to go back to each previous topic to see if any of the newbies have added any pertinent comments as they read them for the first time.
Other groups similar to yours that I belong to solve this problem by auto sending an email to the members when new comments are added to old topics. The email directs the member to the appropriate topic that the comment is amended to so we don’t have to search through previous topics to see if anything new is there.
I discussed this with your daughter in an earlier email, an
she said that she is aware of the software to do this, but that it is up to you to request her to implement it.
Is it time to do so now?
Harley
Dear Chaya,
This is the “go to” cite for CLL for me. My husband had had CLL for nine years-no treatment yet. However, he is currently battling throat cancer as well. That only makes what you do more important. Your research and advocating for clinical trials has clearly made a difference for all cll patients, and this type of work will make a difference in other cancers as well.
I cannot tell you how much I appreciate the information gained from this cite. In addition, your character is truly admirable. Thank you for continuing to help us all.
Myka
Thanks again for you and your family. Let Lawrence and all the other “foreigners” know that there are no foreigners in CLL and especially at Topics. We in the U.S. appreciate them helping us row the boat we’re all in.
Gil
Hi Harley,
I have implemented a ‘half-way’ measure to help people find new comments. If you look on the left-hand sidebar, there’s a link under Navigation called ‘Latest Comments’. This lists the most recent comment for each article by their creation date. You can use this to check for new comments written since the last time you’ve looked at an article.
Implementing a full ’email when new comments are added’ would add thousands of emails a day to our server’s load. It’s amazing how fast this stuff adds up!
Please check it out, and let me know if it helps.
Thanks,
Radha
Dear Chaya,
Receiving a diagnosis of CLL several months ago was horrifying (I am an active 53-year-old), but the silver lining has been finding your site. Your warmth, dedication, and caring is remarkable–and just as important as the wonderfully distilled medical information you provide. Thanks so much to you and your daughter for all you do!
Elizabeth
Hi Chaya,
What a light you are in the wilderness of our daily challenge in facing the present and future of our CLL. There is no way the 10 minite consultation we normally get from a very busy and harrassed medical professional is ever enough to adequately treat our health issues. It is only thorugh a thorough understanding of what we have and where we go at any point in time that we can extend our precious life just that little bit longer.
In many ways it is a slight on our society that so many of us wait impatiently to read your next article so that we may add to our knowledge and take what you offer as part of the balance we so desperately need in the decisions of our treatment protocols.
Thank you for being there for us and god bless you for careing.
Derek Halifax Canada
Morning, Radha!
>>If you look on the left-hand sidebar, there’s a link under Navigation called ‘Latest Comments’. This lists the most recent comment for each article by their creation date.<<
That’ll do it! I didn’t notice that before! Sorry to have been such a pest about it!
Harley
I took the survey and I agree that I can only give excellent responses to each question asked. I thank you so much for providing the information to all of us out here in cyberland, because we can not obtain it any where except from this site. It has more information and tells it the way it is. I think that as I read the responses, I feel I am not alone with CLL. I am so grateful for everything you do for each of us out here we have bonded together. It would have been very easy for you to have closed the site after PC but you have kept his memory alive with everything you do. Although I have never met you and your family, you have emailed me and even PC responded, and provided me with answers and I can only say that as a person out here in cyberland appreciates you and grieved for PC also as if I knew him personally.
Myrna
Dear Chaya,
Thank you from the bottom of my heart for your work. I was diagnosed 10 yrs ago and have had lots of treatment. In Feb. with 2oo whites I did Treanda unsuccefuly and then 3 FCR and then in May switched to Compath which has my whites at almost “0”. I get platelets, Blood and IVIG’s. and I am doing very well. I have no other health problems. My brother has been typed for stem cell donation and Seattle Cancer Care and my Dr are looking at 2 or 3 mos. away. In one of the emails someone mentioned they are glad they got a second opinion and didn’t do a autologous.stem cell transplant. Is that the same as a mini-transplant and can I get more information on it. Would be glad to hear from anyone. My faith and my keep good care of me.
Myrna from Wash.
Chaya,
We are thrilled that you have achieved your goals. It is a win-win for all of us.
Leslie Eisenberg
Myrna – an autologous stem cell transplant is NOT the same as a mini-allogeneic (mini-allo) transplant using your brother as a donor. In an autulogous transplant they would use your own cells and therefore there is almost zero hope of curing your CLL. In a mini-allo transplant using a healthy and matched donor, there is a good chance your CLL will actually be cured! But the devil is in the details, most transplants are tough to tolerate and carry significant risk. We have several good articles on the subject of transplants (mini-allo) on http://www.clltopics.org and I suggest you look them up.
Chaya,
I am so glad that I found this website through another forum I belong to. Yours is the easiest to access and to read and making a comment at the end of each Update is always a plus. I get so much out of all the topics you post and I send them onto family members so they can understand our disease better.
Kudos to you and your daughter and your late husband. You have superseded your goal of 1,000 members it seems with the added 1,000 more. That is because you are so informative and you respond so quickly to our questions. You make the topics of discussion understandable, even to those of us that are medically illiterate.
I hope to be able to donate in the future.
Thank you,
Anita Schulkers(Dunnellon,Fl)
Hi Chaya and friends,
Over all great. Would still like to see you develope that second generation of advocates working under your strong eye for good science. I personally will enthusiastically volunteer to help you develope your idea of a good scientifically based system that rates the many different clinical trials out there from a Patient’s perspective. It is a great idea of yours. All said and done, it’d probaly go a long way in helping all of us to better choose between the many clinical trials being offered, as well as getting them filled quicker to hasten a cure.
I believe that its coming, just not sure if I’ll be lucky enough to see it in my life.
Great work,
Leo
Dear Chaya and Family,
As a five year veteran of the CLL wars, your words, research, and inspiration has meant a lot to many of us…
Thank you,
God Bless…
Randy
Leo:
Thanks for asking questions that need to be answered honestly. I owe my readers that much.
A good friend who happens to be a lawyer told me I will need to carry huge liability insurance policy if I want to do full blown clinical trial reviews with ratings and stuff, as well as a large staff to handle all the frivolous threats and lawsuits I will get from drug companies and patients that are not happy with my take on things. I have neither the time nor patience to put up with that.
Here is a small reminder of how the real world works: I was so pleased that we were able to sponsor, fund and help publicize the vaccine trial at Nevada Cancer Center. I think it is pretty neat technology and may be of help to our patients. Believe me it took some doing and months of work on my part.
It came as a rude shock when several of you forwarded to me less-than-pleased comments from an “opinion leader” on a well respected internet CLL forum. In no uncertain terms I was taken to task for my presumption, for thinking I had any role other than that of a CLL caregiver – since PC died, I expect I have explaining to do on that front as well! I was accused of hubris and stepping over the line by getting involved in the sponsorship of clinical trials.
As they say, no good deed goes unpunished – sometimes. For now, the project of doing comprehensive and no holds barred CLL clinical trial reviews or fund-raising in order to sponsor specific trials for the purpose of directing research directions in CLL are no longer on my to-do list. Neither do I want the responsibility of supervising the work of others. Periodically we will have guest authors writing for Updates and that is about as far as I can go. PC was my first, last and only true partner.
But that does not mean others cannot take on some of these challenges, build their own soap boxes as it were. It is not all that hard to do with modern internet technology. If one builds a good mousetrap surely the world will beat a path to one’s door.
I do not consider my role or my efforts as a CLL patient advocate unique and therefore I do not feel moral responsibility for doing all the things that need to get done. I do what I can and I am content to be judged on that basis. CLL Topics and Updates never claimed to be all things to all patients.
It is also another good reason why I chose to terminate even the strictly voluntary donations aspect of Updates. It is harder to argue with the value / legitimacy (or lack thereof) of an entirely free of charge service. It gives more freedom to both me and my readers – we are only dating, no strings attached, we are not getting married for heaven’s sake. :)
Dear Chaya,
I agree with everything said above and would be sorely disappointed if this site disappeared. I also read all of your postings asap, and reading the comments, and recently adding to them, makes me feel less alone with this disease. This has become my support group. Keep up the good work and know that you are greatly appreciated.
Thank you for all that you and Radha do, and thank you to all of you who have shared your personal experiences with your comments.
Kathy in Maine
u are doing a great service – both of you…..it comes from the soul from you.
I am a student of the disease and appreciate every article you author….
your perspective gives all of us… at least – a vision different.
that is good.
i do not have the intellectual capability to understand much of what you write – but
really appreciate that someone is writing and someone cares….i read your missives every issue and have now for a cpl 3 years….
Thank you Miss Chaya – you have certainly made a difference in the course of my ….blessing/curse? disease……I am one of the …what do you say? blessed ones – have only done PCR and later a much nastier regimen for laryngeal cancer. But overall – i have been blessed…not the least of which by having a place like this to go to and read and learn – from people who are trying to make a difference – that has been great………it has been a soul lifter,if you will – i thank you, your husband, and your daughter.
Your intellect is well respected here…God Bless
Chris in NC – Durham
I have not digested your post made while i was making mine – but if i get the gist……….
i am ready to do whatever i can to insulate you from threats of lawsuits.
This is a huge factor in the cost of our health care to begin with -but for gosh sakes butt out of us who are in terminal diseases…… you know – people could really get upset……..right?
Right people? could you really get upset and stuff anyone who is trying to shut Chaya up?!!!!!!!!!!!!!!
you can do it if you mobilize and make your voice heard.
this lady has made a huge difference to all of us – she has given us a different perspective…..a much needed perspective – one that has countered the conventional medical wisdom of you are dead it is just what amount of time before it happens….that doesn’t condemn them it just recommends her for looking – looking – looking
we need to be sure that Chaya has full and free speech – buck up and let her know – it may take a sizeable amount of money to protect her from the lawyer a-holes
let’s at least see if we have enough fighters to see if we can start to do something – if Chaya would not like it here – my email is trimm@mindspring.com…. lawyers are the bane of our society – certainly there is no place here for this kind of black curtain
This is offered in total because of my respect for what PC and Chaya started and what Chaya and their daughter are continuing.
Folks – i wager that we could fund an insurance policy that would allow Chaya to continue her very valuable work with the same discretion that she has until now………..
do you want to see her not say what she thinks?
and – i have to say -i am already looking for somebody to take this over – but….i will see it thru.
Trimm:
Take it easy, I don’t want you to blow a gasket :)
No one has sued me – yet. And no one will, provided I don’t go off half-cocked foaming at the mouth. But this country is quite trigger happy when it comes to lawsuits. I understand the owner of the website “Quackwatch” fields hundreds of lawsuits for slander. Hassling with that kind of ugliness is not my cup of tea, even with gallant defenders like you jumping to my defence. You are kind and I appreciate it. Truly, it is not that big a deal. I am doing fine.
Please hold your fire and help us when we need people like you with passion to get a letter writing campaign going – if and when we get trouble from FDA regarding Humax-CD20 approval. I will be sure to write and tell everyone about it when we get a decision one way or the other in early October.
Chaya and family,
You are our light! This site is a gift for so many — especially for those of us who are new to CLL. Your prompt response to me the other night about my father’s e.r. visit, this personal communication from you is remarkable. I read all of the updates immediately. You’re an incredibly generous soul! Thank you.
Chaya,
Just wanted to let you know that to me and my husband you are so much more than JUST a cll caregiver. (I am my husbands caregiver and it is not a easy job—also the pay stinks) For us you have become a great teacher, who explains things so that we can understand and truly learn about treatments and options.I have taken topics and updates both to the oncologists when we have went to also keep the Dr. informed on new things coming down the pike.Oncologists deal with so many cancers it is probably not possible to keep up with them all. You have lost so much and you still give us all so much. Thankyou Chaya for you intelligence humor and giving spirit. Kim Fraley
Chaya,
I thnk it is awful that people want to prevent you from providing valuable information to us. I have learned so much more from your writings on CLL than I ever have from my doctors.
Wayne
Once again for the record, no one is stopping me from doing anything. Limitations in what Updates and CLL Topics can do are solely limitations I see in myself – my present level of energy and drive. I don’t have to gaze at my own navel for too long to realize I lost a lot of oomph when PC died. You guys are kind to a fault, I really appreciate your cutting me some slack. We will muddle through together somehow, OK?
I am heading out to India middle of the month to spend some time (months) with my Mom. But they have pretty good internet connectivity there and the transition should be seamless. I expect I will continue to write at about the same clip I have been doing thus far, I will still be answering emails from you guys. Phone calls are a lot harder, cost an arm and a leg, and India is roughly 12 hours out of sync with USA!
Chaya,
Thank you so much for all the information you have posted. Obviously, it takes a lot of effort to keep up with the news in the field. I don’t recall seeing your name posted in Forbes on the lists of the most wealthy in the country; you work hard to collect information and explain risks and possible benefits of various studies.
I am currently taking part in trying to help by contributing blood for a study being done at the UAB School of medicine; I have also volunteered but not yet been accepted for a different study (Nevada). There really should be some advantage to having an early heads-up about having cancer, rather than the old watchful waiting being distressed routine. Two years of that can produce a bit of tension,although I see that some have been doing this a lot longer than I have. I, for one, want to do something! I will sorely miss your up-front and sensible critiques about studies for a cure or prevention for that which is not at the present time curable/preventable.
There are no guarantees in life, and there are always risks involved with everything one does. If one dies in a trial, at least information that may help others may be gained. Those who come running up tugging lawyers behind them are even more despicable creatures than the trial lawyers who wish to benefit by causing misfortune for others. The lawsuit happy folks always want to blame someone for those things that cannot be helped. If one already knew the answers, we wouldn’t have to do research.
Regards,
Betty
Chaya,
You mean so much to so many. Thanks for all you do for us. I’m almost 12 months post 6 rounds of FCR and doing well. Thanks for being there with me.
Mike
Statesboro, GA
Myrna,
I had a mini transplant (brother donor) over four years ago. I would be pleased to share info and/or answer any questions I can, if that would be helpful to you. Feel free to email me: bolark60@yahoo.com.
bob larkin
North Branford, CT
Chaya, Congratulations on not only an extraordinary half year, but the years of education and advocacy that you have provided. You are THE top source for solid, researched information. As someone else said, I trust your information and your thinking. It doesn’t mean I don’t do my own and raise my own questions, but I so appreciate solid thinking. What you do is SO helpful to all of us out here either with CLL or who love someone with CLL. I am so glad you are continuing and that your daughter has stepped up to help you with this. I and so many others truly appreciate it.
Thank you, thank you, thank you-both! I’m sure PC is smiling and so very proud of you both!
Dawn Lipthrott
Winter Park, FL
Chaya,
Thank you and your daughter for providing those of us without medical training the means to understand more about the disease that afflicts us. Thank you also for your advocacy in this field. It must be very difficult, even with your mental capacity, to be an advocate. There are so many competing interests in the medical field that a state of contention is heightened. PC’s spirit is alive in what you and your daughter do. Godspeed!
Chaya,
Have a good trip. Kick-back and take a well deserved rest.
Thanks for everything,
Jim
Chaya,
As a 7 year Cll veteran, and in my second month of FCR treatment, I must say that in the last few months since I have discovered your site I have learned more than in the previous 6 years of my disease.
I was also helped by your sponsorship of the Mayo Green Clinical Trial since I was involved in phase I of that trial.
Your site is also partially responsible for me deciding on my FCR treatment.
So you have had a direct impact on my life and for that I want to express my profound earnest appreciation.
Thank you Chaya,
God bless your time with your mother.
Mark
Chaya,
My husband was first diagnosed in 2003 and needed to start treatment later that same year. He was part of a late phase clinical trial of FCR at MD Anderson that put him in complete remission for 4 years. He’s now undergoing treatment with Treanda. How did I not know about your site until recently???!!!! A friend with CLL had just told me about you and I am so grateful for the information you provide – and, in terms that I can understand! Thank you so much for the wonderful work you do – what an obvious blessing you are to so many people!
Sincerely,
Susie
Chaya,
You have done so much for all of us. Being newly diagnosed in February, finding your site was the best thing that happened for me. Because of the time you spent with me via email reading lab reports, explaining tests, etc., I was able to intelligently request additional tests from my oncologist that she didn’t feel were necessary. I even impressed myself when I was able to explain the tests to her! You have been that “voice in the wilderness” for all of us, and I hope in your darker days we provide the same for you. Enjoy your time in India. Take some time off – Send fewer emails, do less research. We will be fine, really. But we will look forward to your return in whatever capacity you choose to continue in. With great admiration, Nancy Hammill, Georgia
Dear Chaya:
What can I say other than echo the many “thank you’s”, and extend my gratitude to Radha…I am sorry I did not take the survey. I am so busy with making a living I sometimes fall behind on my readings. Joys of being self employed…
I live in the US but get treatment in Brazil. I am fortunate that my hematologist-oncologist respects my intellect and up-to-dateness (thanks to Chaya!) and is always willing to discuss and modify treatments. Although I pay consults out of pocket, I have at least 1 hour with him at a time, so I plan my visits carefully; I take written documents as well as my summaries and list of questions and suggestions. I am a dilligent practioner of botanical/herbal supplementation, which he is -surprisingly- also interested in.
I want to especially agree with Nancy H– take this time with your mother as a semi-vacation and write less, email less. I’m sure those who are in urgent need of help will let you know. The rest of us can wait until you return for our usual dose and pace of knowledge and expertise, CLL-wise!
Kindly,
Cristina in Savannah
my email: crispiva@aol.com
diagnosed 1998
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