It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad – this will not take long.
As you knew, we planned to keep all three of our websites (CLL Topics flagship site, Updates and Harvey’s Journal) up and running for the foreseeable future, for as long as people might still find the content on these websites of some use. Best laid plan of mice and men, as they say. For reasons too technical and boring, our domain name got hijacked. For example, if you type "updates.clltopics.org" now you won’t be able to get access to the Updates website you were used to.
So, here is what we did instead. We changed all our website addresses to a .net ending instead of the old .org ending. And that takes care of the problem. Given below are the three new addresses as well as my new email address – all of them using the .net ending rather than the .org ending. Please do me a favor and click on each of the website addresses and confirm they are working right. If you run into problems, please send our webmaster (and my daughter) Radha an email. Her address is also listed below.
Our member email list has not been updated in some time. I am sure many of you are no longer at the email addresses we have on file for you. So I am well aware I will not be able to reach everyone by sending out this message. You can help me by circulating this message and re-posting it on any other CLL websites and blogs where you think our folks may see it.
Out of sight is not out of mind and I think about my CLL Topics days quite frequently. I have had a lot of career changes over my life but the one single thing I am most proud of is being your patient advocate for several years. I cannot begin to tell you how much it meant to me. After saying my goodbyes to you all I moved to sunny Southern California. Palm Springs area to be precise. The weather is gorgeous for eight months of the year and then it is blazing hot for four months. This is very much a retirement community and it is wall-to-wall with duplicate bridge clubs. I spend a lot of my time reading, playing bridge, taking my dog Buddy for walks and generally being a mellow old lady.
I do try to keep up with new developments in CLL therapy options, but not with quite the same monomaniacal obsession I used to back then. It is heartening to see many new options opening up for our guys. Just the other day I saw that in the future Medicare will cover the costs of CAR-T cell therapy! How things have changed. Remember back when single agent fludarabine was the slam dunk therapy option for new CLL patients? With any luck, you guys will benefit from all the new therapy options and the next generations of CLL patients (your kids and grand-kids) can look forward to even better choices.
Should any of you happen to visit my neck of the woods and wish to meet up with me, give me a shout and we will see if we can set something up.
Be well,
Chaya
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Chaya’s incredible information helped me so much when I was first diagnosed with CLL and continues to do so for many, I’m sure. How wonderful to hear from her and know her life is going forward. Thanks for posting this Len. Best regards to Chaya from all of us. ❤️
Len - Thank you for posting this! I remember the day I tried to go to Chaya's site and it was gone. I'm so glad that it is back up. I doubt that she will see any responses here, but I know she would appreciate everyone's kind words, thus her e mail in the message.
Thanks so much for this - great to still hear from Chaya.
Fran ☺️
Like many others, Chaya’s information was really helpful, especially in dealing with “watch and wait,” something I was never inclined to do. Also found her tracking spreadsheet with it’s commented fields invaluable at a time when providers did not give that access readily.
Glad to know you are doing well, thank you for the help you provided.
Len - I can't tell you how grateful I am that you posted this. Chaya is such a hero and my husband and I are very indebted to her dedication and generosity in providing much needed information.
Len, the sites open but (for me ) the search function in the upper right corner of each page did not open to the *results*.
Ex: I looked up the word *ibrutinib* and all the results ended in *.org* - and would not open.
The *search* is an important feature in Chaya’s site. The complex ideas were so well researched & often taught with cheeky humor. Chaya’s lecture on * mutated vs un- mutated * is a classic example.
So nice to know Chaya is happy & well. Her presence in my life was an immeasurable gift of kindness, knowledge and healing. The entire CLL community owes a great deal of gratitude to Chaya & Family. She opened the windows and let the fresh air in.
Anyone who had the good fortune to attend her seminars, left the classes fully charged to be in control of their destiny. At the very least, we would be our own patient advocates - knowing - if need be - Chaya was a phone call away. (Whew!)
I am so grateful to the generosity of the Family & the personal time extended to me by - Chaya, Radha & Peter.
Haven't been on the site too much lately with my disease being fairly stable and other health issues gaining my attention, so 10 months late just wanted to say before there was Dr. Koffman's cllsociety.org and before HealthUnlocked it was all Chaya all the time for me (my doctors coming in a distant 2nd). The name will always be special to me.
Chaya and P.C. got me through my initial years after dx and gave me hope. A huge thank you. It's great to hear Chaya is doing well and making sure the sites are archived.
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Update and seasons greetings.
UK NICE Approves Ibrutinib +Venetoclax for First Line treatment for ALL Patients from today
