Welcome to the New Decade!
I hope you guys enjoyed the holiday season, good times with family and friends. Ready to get back to work? I am, if you are willing to stick with me. It is never a dull day in the CLL arena and I am working on a couple of interesting clinical trial reviews that may be just right for you.
I am willing to bet we will see major improvements in the new decade and many patients will actually get CURED. Of course, not all the tentative new approaches will pan out. It will take smarts and a certain amount of cussedness to survive and thrive when things are changing so fast. I will try my best to keep you smart and focused, provided you stay engaged and optimistic.
We published 61 articles in 2009. Updates now has just under 3,000 registered members. The discussions that follow each article have become an important part of this website. Your first person accounts bring a level of interest and authenticity that my articles alone cannot match. Together we have built a strong patient community resource that is educational, supportive and last but not least, credible. Working together we are stronger, our voices are heard more clearly and our agenda is given a chance when decisions are made. Going forward I hope more of you will join in the discussions, adding your own unique voice to this community effort.
New Face of “Updates”
Well, we survived the first year and it is time to make a few necessary changes. I think you will like them.
- We have decided to make our articles accessible to all visitors who wish to browse them. Registration is no longer necessary to read my articles. In that sense Updates will be like our flagship website CLL Topics, accessible to all comers. You will find it is also a lot easier to print articles, just click on the little printer icon at the top of each article.
- Only registered members will have access to the thought provoking discussions that follow each article. We want to try and provide your comments some level of protection from random web crawlers and robots looking for any bits and pieces of personal information to exploit. Radha (our webmaster) wants me to tell you not to shy away from joining the discussions because you have lost your password or having trouble logging on. She is more than happy to help you with your logon problems, just let her know OK?
- Newly diagnosed patients are often bewildered and have a hard time figuring out what to read first. Radha has designed a whole new page for this special group of CLL patients.
- You will notice the “Donate” button is back up on the front page. We took it down July of last year after we met our financial goals for the year. Updates runs on the support of our loyal members and we thank all our wonderful donors who have kept us going in 2009. If you value what we do, I hope you will support us with your generous donations in 2010. If you have questions or run into problems donating please write to Peter Fortman; he is our treasurer (and best son-in-law in the whole wide world). Pete is pretty good at sorting things out; my finances would be a bigger mess without him keeping me straight.
Best wishes for a happy and healthy New Year, from our family to yours.
Chaya, Radha and Peter.
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30 comments on "“Updates” Starts its Second Year"
Hooray !! All sounds good. Heartfelt thanks (thanks and more thanks for all you do) and hugs to Chaya, Radha and Peter.
Lynn
I wish you a better year ahead; and thanks for your interesting articles and the clear, unsentimental dejargoning of some of the highly tendentious trials.
Personally I have decided to stay miles away from any medication, and also miles from the target, tickbox driven system I have come up against.
I shall keep reading and digesting your very well explained and researched points.
Keep well and stay optimistic. Personally I am not; of my max 10 years, one is now gone; I shall carry on, keeping the condition secret from my surroundings; so that I may have as normal a life as possible for as long as possible, I cannot stand the often faux sympathy shown to cancer-victims, often like lepers used to be; only now that is curable.
You really are a remarkable person Chaya.
Mette
The year has just flown by…I am so grateful for all the information presented in 2009. Without the material presented in Updates, I would have been clueless about where to begin searching for help or how to keep up with new progress. This disease has been time consuming for me; thank you for the helping hand.
May you prosper throughout the coming year,
Betty
Chaya, to you, Radha, and Peter; I wish the best of everything possible in this coming new year!
I like the new “Newly Diagnosed” section! I am a member of a support forum and we often recommend your site for those that are newly diagnosed. The set up will make it much easier for someone that is confused and at a loss…and great information as well……who could ask for more?
Thank you all for what you do for us. I for one do not know where I would be in this vast sea of information without captains like you to guide me!
Elaine
Dear Chaya,
We have over the past five years communicated by email, through your wonderful, informative and welcome CLL Topics and even once via the old communication system called the telephone.
You have been an inspiration to me and an important part of my hunger for information, my determination to be 100% involved in every thing connected with my health challenges and my desire to hang around long enough for that elusive cure!
I am today 31 months into remission after FCR enjoying life, enjoying helping others facing similar challenges and looking forward to a 2010 full of love for my family and a continued healthy bone marrow,
Thanks for being there for us all, Happy New Year
Derek
Chaya,
You are the special angel for Cllers. Thanks for your wonderful work on our behalf. Happy New Year!
Chaya,
Thank you for staying focused and in our corner, even after your own personal tragedy.
Let us hope that 2010 will bring some new hope and relief for CLL patients all over the world.
Happy New Year
Fred
Chaya:
A happy and useful New Year to you and yours.
Your Newsletter is a great help for all of us with this affliction.
Mette,
I also kept my condition from everybody and continued on with life as normal for the exact reasons you stated. After my first round of chemo and I had a very bad reaction to it and was in the hospital for 12 days everybody then found out. There were some people who were mad about the way I handled it and others were hurt! But if I had it to do over again, I’d do it the same way, hang in there!!
Gil
Dear Chaya:
i was initially diagnosed with stage 4 CLL in February, 2006 (nearly 4 years ago!). during the past 4 years your publications and updates have been a timely and reliable source of ongoing reliable information which both my wife and i.. Thank you so very much for doing what you do.
please keep the publications and updates coming! they are so very valuable, not only for survivors (like me) and family members, but especially for newly diagnosed patients and their families.
As requested, we just made a donation on line to help the cause and to continue this wonderful resource which you provide! hopefully many others will also do the same!
Hopefully some major break troughs/advancements will be made during 2010 regarding CLL.
Wishing you and your family a very happy and healthy new year.
Thank you so very much!
CLL: Pittsburgh, PA
And I’ve just made a donation as well. Chaya, thanks for allowing us to contribute for all the benefit we receive. This site is so unique and of such value. There are other sites for emotional release / venting or purely anecdotal sharing. This site has Chaya’s focused intelligence and clarity that provides a calm and reasoned setting for learning and civil discourse. In some funny way, it reminds me of the way libraries used to be. Chaya, I am truly in awe of what you do for us.
Chaya –
Best wishes for the new year to you and your family. I have made a donation to help make sure that we stay in business. Thanks for all your tireless work and great information.
Wish you a happy healthy 2010 Chaya. I’ll plan to donate again this year to keep this very important work going. Would not be surprised if you have double the registered members this time next year.
I hope and pray there is a cure this decade and all individuals and families impacted by CLL have real hope.
Has it been a year already? “Updates” started the same time I learned I had CLL. Both “updates” and “topics” are absolute, top of the line CLL information sites. Thank you all, and have a very good new year!
Jim
janjan
When I read the word “CURED” I got the chills. If only that could happen. I have been living with CLL for 20 yrs now and only the last 4 have been a problem with then enlarged nodes around my neck. Chemo in Fall of 2009 brought the nodes and wbc down but it only lasted one year. Have an appt. at UCSD Jan. 12 to get their opinion.
May we all have the strength to be our own advocates and find our own best path to take. Thank you for your research and help.
Janet
Chaya
Thankyou for such an informative site & the way in which you make it easily understandable.
Its only been 4 months since diagnosis but ive accepted this disease far better than the many years it took me to accept my Crohns & not fight it.
For those that hide it i say from experience its better to tell people, also accepting it yourself, then do whatever to make it stress free.
Yesterday was my last day at work after 33+ at the same firm, ive taken early release & hope to draw a half pension in 12 days (my 50th).
I feel like i’m starting a new life in every sense, doing what i want to do & when i want to do it.
Happy Healthy New Year to all & may i add don’t put off doing today what you may never do tomorrow.
Chaya, Radha and Peter,
Great advantages, the new ‘Newly Diagnosed?’information and the possibility to provide all the the important articles without registration for the broad web community. I strongly believe that these two inviting steps will acquire a lot of new registred members for this great CLL-homepage.
Did you already discussed the possibility of a separate forum beyond the comment-section where registered members could ask and discuss their individual experiences or questions around CLL up to recommendations for psycho-social care, literature or even smalltalk?
Thank you for your passion for CLL-Community and a Happy Healthy and successful 2010.
Maxi
Thanks Chaya, Radha and Peter,
for all the work you do. I think the changes are good and will benefit many, I think it is wise to keep the comments for login members which makes one feel more secure about communicating.
Radha has done a very good job on the newly diagnosed patients page it is the sort of thing I would have benefited over 7 years ago when I was first diagnosed so it is very encouraging to see how things improve in life for the new generations.
Just my opinion, but I think how you got CLLtopics alert is just perfect, I think there are many CLL groups that cater for social and other CLL issues that people can comunicate with each other, I myself am a member of 5 such groups each one with a particular interest. Perhaps Radha’s newly diagnosed page could list or link those forums for those newly diagnosed people that have the need of psycho-social care, literature or smalltalk, just a thought.
Thanks for all your hard work and the continuing support to CLL. The last decade has been so intense, lets hope we have the energy to go on with the New decade as well as we did with the old one.
best regards
Chonette
Hi there!!
Thanks to you Chaya for all the good information you have supplied me with during the past two years.
I have now had the diagnosis CLL for about two years and my last blood count was still good.
I see in one of the comments somebody named Mette has more or less the same “outlook” although I have not given it a “10 years” max.
If Mette wants to share her experiences with me; she is more than welcome to that. I assume she is Norwegian and being the same maybe it is good to get in contact.
My e-mail adress is:leif.roervik@online.no
Have a happy new year and once again thanks for your efforts!!!!
Best regards
Leif
Chaya
Great articles you provide us information that is so helpful. keep up the good work.
Happy New Year
Barbara
Chaya, Radha, and Peter,
Thank you for your hard work to keep this life saving resource going. I know it is not easy.
Happy New Year
Brian
Fabulous! Thanks to all,Chaya, Radha and Peter
Happy New Year
Monique
Chaya
Happy New Year to all. I do appreciate all your articles.
I have been on Bendamustine. I really had no choice. I flunked leukeran.
Rough reactions at first but doing better. My neck nodes are shrinking and that’s a plus.
Chaya, I carry all your Bendamustine articles with me when I see my oncologist.
Take care and many Blessings.
Rita
Chaya,
Thank you for making this site available to us.
I was diagnosed with CLL over 10 years ago and it has been ‘progressing’ very slowly so far but I am 71 and rather worried about what lies ahead.
My visits to my oncologist seem all too short for everything I want to discuss. This site helps me me make the most of these visits.
Unfortunately I got a very bad case of shingles in 2009 – it has left me blind in one eye and unwell for months. I am still not as well as before the attack. It was too late when I only read the information about shingles on this site. But I am glad I have been warned about skin cancer as it is already a risk in Tasmania which is not hot enough to keep people out of the sun but has very high UV.
I wish you success in what you do to improve our chances and quality of life with the information you provide here.
Happy New Year – and may it bring hope of a cure at last
Mel (Melita)
Chaya,
Thank you for your wonderful work. I was diagnosed 2 years ago and find CLL Topics so helpful. I tell my doctor all the time about what I have read on line. Actually, I get more info from CLL Topics than my doctor.
I live in Tampa Florida. Is anyone aware of any support groups in that area? I am in the W/W stage and would enjoy sharing experiences with others.
Suzanne
Hi Chaya,
Thanks for another year of helpful information and Happy New year to you.
Your dedication to this site, along with that of your daughter and son in law, is simply amazing especially given your own personal tragedy which would have caused many not to even want to think about this disease let alone carrying on as you have with research.
Heartfelt thanks
Graham
Now that we have another number to call a New Year, I will use the renewed Hope it inspires to share the belief that from now on things will be different.
We are looking forward to new and wonderful things. We need this idea to live our every moment more fully. New drugs, new mindsets, new research approaches, more holistic treatments.
I’d like to express my deepest gratitude to Chaya, Radha and Peter. In this new year, I’d like to wish you and our CLL community so many things. But nothing would be enough…
So, I simply wish that you have many wishes. Important wishes, and that they may move us at every moment toward our good health and happiness.
Chaya and family, thank you for all you do.
To all—may we have a happy and healthy 2010 and may we work towards a cure.
Chaya,
3,000 in one year. Congrats. You are the best–smart, organized and generous. Have a great 2010, Beth Havey
Its great 3000 members in one year. I wish more and more in thousands in 2010
Wish You all vey happy new year
Swarup
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