I have to admit I was cringing with embarrassment as I watched this video. I did not sound or look anything like I imagined I did. This was my first public appearance at a patient conference and I enjoyed meeting all of you. The video had to be broken into 6 segments because it was too long to fit into one Youtube segment. Yeah, I know. I am long-winded. Be kind in your comments guys.
The speech was dedicated to the memory of P. C. Venkat (1949 – 2008): Terrific father, wonderful husband, over-the-top dog lover and patient advocate extraordinaire. I will miss him for the rest of my life.
Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
50 comments on "Patient Advocacy for Times of Rapid Change"
Thanks again for all you do.
I make treatment decisions based on your research and reporting.
Just made it through another round of Rituxan only.
Little bit of somebody else’s blood and it is all good.
Dave Mikol
I am off to my Canadian Cancer Center 3 month check up in the morning and was in the midst of preparing quotes from Dr. Hamblin et al regarding updated diagnostic and prognostic ‘gold standards’ for discussion. Thanks for the perfectly timed moral support and encouragement!
Chaya,
Fabulous talk! We are so lucky to have you.
YvB/Netherlands
Just watched your video and felt a strong confirmation of my attitude: trying to understand as much as possible of the knowledge of my specific CLL (unmuted) and use this in relation with my (local) oncologist/ hematologist. This caused a mutual respect and openness, what makes dealing with the CLL more acceptable. I just finished my first treatment (FC)in a clinical trial (Hovon 68, FC/alemtuzemab)) and felt exactly what you described as motivation for joining, hopefully our future generation will profit of it !!! Nice, to see you on video, after we have exchanged already information on several issues (like shingles, Epstein Barr Virus), I admire your very positive and strong dedication to this subject/ disease! This surely gives us patients enormous moral support !
Thank you Chaya – you are a most remarkable and amazing woman. You are truly an inspiration to us all!
Louise Lipsey
Chaya, you are amazing as ever, thanks for letting the rest of us listen to the Ontario conference.
I had not realised patients do not often get thanked for their part in trials.
While I was still in London after my SCT I attended a “transplanted patients evening” organised by The Royal Free Hospital, we were 28 patients there, some under 100 days, like myself at the time and others, several patients 3 and 4 years post transplant.
I so well remember how the people that organised the session, thanked us for having been through the SCT, how she said we were amazing and it was us that made their work possible, I was very touched by their words as I felt at the time it was thanks to their tremendous care that I was recovering, yet the Transplant team was telling us how we were all an inspiration to their work.
Thanks for all your hard work, you look terrific on the video.
Chonette Taylor (UK)
You are wonderful Chaya! Without any doubt I trust your advice more than anyone.
Paul Garland
El Paso, Texas
Dear Chaya:
I discovered you on the Internet and was saddened that I found you after you had lost your husband. I have consumed most of your archival materials and have found them to be very helpful. I am a female professor who has been recently diagnosed with leukemia. Apparently, we are a rare breed.
My son is forming a non-profit for leukemia and I plan on going to Arizona within the year. I would like an opportunity to meet you, if we can work that out.
Just wanted to drop you a note to tell you that I feel a connection with you and your journey and I will be forever grateful for that.
LV
Chaya,
It was so good to put a face and a voice to you! I am a newly diagnosed CLL patient, 62 year old female, trying to figure out my path. I am currently on watch and wait and go for my first followup blood test later this month. I have my ups and downs, especially with not knowing what the future will hold. I still work full time, and keep myself in good shape.
I am gaining knowledge from this wonderful website and its members. I am trying to stay positive and your conference speech was truly informative and inspiring. I have no family, but I do have great friends.The problem is,they do not understand the disease and I don’t want to talk it about it on a daily basis. So.. thank you for the spport and God bless!
thank you for your continued dedication.
lloyd shane
Chaya,
Wonderful video. Thank you for your advocacy. I cannot adequately express my sincere appreciation for your continued role in this battle. I have been battling CLL for nearly six years now- with a nasty prognosis-Unmutated, ZAP70+, 11q del, refractory. I have used CLL Topics as the basis for understanding my illness and treatment- and recommend it to new CLL patients as a necessity. I also reccmmend finding a CLL Specialist.
Finding where you are is important in life and especially so in this CLL battle. You can’t start your journey until you know where you starting from.
My journey started with a Florida “Strip Mall Oncologist” who immediately recommended Campath, and only offered cold water in both his patient bathrooms for washing your hands. I don’t even frequent gas station like that…
I have been fortunate to have partnered with Dr. Byrd at (what I call) the St James Retreat- at Ohio State University. – or Byrdland. I am currently sitting in my rented apartment in Dublin Ohio- undergoing a Cal 101 trial (weekly clinic the first month) and looking forward to returning home to Florida…with monthly check ups.
In 2007 I participated in the Byrd Flavopiridol trial- to get to a good remission- so I could do a MUD BMT. Secondary Kidney cancer kicked that off course.
At age 55, I credit finding CLL Topics early on- basically your and “Harvey’s” contribution, an important part of my survival…
God Bless,
Randy Shannon
Ohio-Florida
Hi Chaya, thanks so much for sharing your conference with us. You are an amazing, brilliant and beautiful woman and patients with CLL are blessed to have you as an advocate/researcher! I hope if there is one thing a person takes away from your presentation it is the fact that YOU as a patient or YOU as a loved one have every right to ask questions of your physician, pre treatment, during treatment and post treatment. If your physician feels threatened or annoyed at your questions, then obviously you are not seeing the right specialist for you. I realized this too late while I was dealing with my cancer treatment and vowed that the negative situation I found myself in would never happen to my family or friends. I can’t say it strongly enough, “do your homework”…google all the latest CLL research, read publications like blood and asco, write notes or copy the information so you can share it with your oncologist. Knowledge is so….empowering.
LEEB
You are so right that the doctors never mention the danger of skin cancer in CLL patients. It is my family physician and not my onc/doc that has found and treated my many skin cancers. In October alone, I had 8 biopsies – 6 positive. I had a melanoma, 3 basal cell and 2 squamous cell cancers. I had surgery on my scalp for the melanoma (my second melanoma) and on my arm for the basal cell. Next week I am having Mohs surgery on my eyebrow for a basal cell. I live in Florida but have not purposely gone out in the sun for the past 10 years. Being a blonde, blue-eyed fair skin person adds to the problem.
Your website is the best site for information which is easily understood. Keep up the good work. Your speech was extremely interesting and very well presented.
Thank you so much Chaya, for your tireless work keeping the CLL patient world informed and motivated.
I was surprised at the figures you cited for participation in clinical trials, but I can also see how the circumstances around them might tend to limit that participation. People need to know up front that the trial is not designed to help them (although it could), but it is meant to glean knowledge that might help other CLL patients in the future.
monag764
Worried about your delivery?….you were amazing! I thoroughly enjoyed your talk and of course your site which I only found recently due to a fellow CLLer’s recommendation. I learned so much. Thanks
Send these Youtube links out to the whole world! Every illness deserves to hear these words about Patient Advocacy. Every illness deserves a patient advocate like Chaya. Perhaps others will be inspired to do for others what she is doing for us.
Aaron Allbright
Thanks so much, especially for mentioning shingles which I had in 2006–I have just switched for the third time to Fox Chase Cancer Center–will be meeting with my new doctor on January 6th–Hope he’s ready for me–after listening to you, I’m ready for him! My last doctor was so blase about this disease–he said it didn’t run in families (I’ve had two sisters die from it) He never mentioned skin cancer or shingles and spent approximately 6 minutes with me–you are a Godsend–thank you so much–I hope I’m writing to you 10 years from now!
M.E.
Thanks for letting us listen to your conference in Ontario, Canada. I also trust your advice more than anyone.
Monique
John and Judy
You look fantastic and sound even better. Sedona calling.
You ROCK Chaya. That was a very informative presentation.
I want to give you an update on my situation which may help any CLL patients with extremely severe skin rashes.
You called me a “lucky one” during our May 28th dinner in Orlando and your June 8th email to me followed up. My Onoc. called me one in a million due to all of my “challanges”.
My CLL and ITP are under arrest primarily due to two series of Rituxan infusions. I’m “lucky” because I also have or had type II diabetes, high blood pressure, various skin cancers, surgery due to wet macula degeneration (due to an ITP bleed out), ulcers, sleep apnea, double pneumonia, binocular diplopia, etc.
I was able to deal with all issues except for the skin rashes. About seven different physicians diagnosed the rashes as various type of exema. I had hundreds of incredibly itchy rashes constantly for over two years, many of which were infected. After about two dozen failed fixes through medications my Onoc’s. PA suggested it was another autoimmune disease. She had me start on Cyclosporine, (an autoimmune suppresant), along with Acyclovir, (an anti viral to avoid shingles). After 10 days of these drugs my “exzema” has almost disapeared.
I hope that any others with sever skin rashes my benefit from my experience.
Chaya, thanks and keep up the good work.
Cary
Cathy
I just finished listening to your talk, Chaya, and my hat is off to you – you are amazing. GREAT JOB!
I agree with the comments above, we in the CLL community are indeed lucky to have you as an advocate. We all need to learn to be advocates for ourselves, to educate those strip mall oncologists, to get the very best care possible.
I am happy to report that my local oncologist was one of those who did jump on the skin cancer bandwagon, and I’m now seen 4 times a year by a dermatologist.
She also jumped on the frightening statistics regarding pneumonia, and the need to act quickly. This summer I battled pneumonia while traveling. I was away from my usual doctors, and was so thankful for her advice about looking out for myself, and doing so quickly, not taking ‘no’ for an answer. Better safe than sorry. We are our own best advocates, and we need to be tough!
Thank you, Chaya, and God Bless,
Cathy
I think you’re beautiful,,, inside and out.
janejs
Thank you for sharing this program!
I loved the way you look and sound. You are a true friend to this community.
I learned from your take on clinical trials. The entire package was informative and very clear, which is a hallmark of your advocacy.
I appreciate you and your life-saving information.
Linda
I am glad to meet you, so to speak! It is wonderful to put a face to such a wonderful and wise woman. Thank you for all you do for us Chaya!
May the Father bless you!
Elaine
Thanks again, Chaya.
We CLL patients are so fortunate to have an advocate like you. I appreciate so much that you have kept fighting for our benefit, when after the heartbreak of losing P.C., it must have seemed easier to try and move on to other things and to forget about CLL and all the sad memories.
I think you should be sainted for all you do – and I’m not a Catholic!
Kaymac
Great talk- I have been following you for several years (diagnosed 2002)- and was glad to finally “meet” you. You are my ultimate reference manual. Keep up the good work.
Thank you
Mike
WillB425
Chaya…wow….geeze…you’re a super public speaker as well. Content was right on…so dull spots. Good stuff.
William
You are just as powerful in person as you are in written word, if not more. Only negative was that I winched when you dissed President Bush & Republicans but expected to hear similar equal opportunity diss about the other political party – a diss that never came :-((.
I instinctively applauded at the end of your video because it was fantastic – you are fantastic – and I’m an even bigger fan now that I can put a face and voice to your literary excellence. Your words of encouragement/advocacy further help embolden me with my medical appointments.
Heading to Bethesda Wednesday for my second visit for the history study I got in, thanks only to you for alerting us they were looking for early stage patients to follow. In addition to helping myself, the CLL Community, I’m using these trips to take grandkids for a visit to our wonderful nations capital – even though it’s hard to find a true Conservative there these days. :-))
Ken Miller
Olympia, Wa
Chaya – very moving, direct, compelling, and warm. You go right to the heart of things, which takes courage. Thank you for always being out on that limb for all of us. We laughed…and cried.
Love Barb & Blair
Chaya,
Thank you for your presentation. I have been through so many of these doctor/patient events where I was not expected to offer anything to the doctor in the way of knowledge. I have had to learn the hard way to speak up, and yes, prior preparation before going into an appointment is critical. I have approximately 275 hours of study in CLL and it is like a huge onion in my office with just one layer peeled. I am fortunate in one way as I have had the financial facility to work with CLL people at both MDA and SCCA. As a 22 year old kid building a weight system in my summer home in VT said to me when I complained about the cost of the system, “How much is your life worth?” Life is precious and it is worth battling. Your comments are reinforcing my attitude and I thank you for them.
Barry Baylor
Oak Harbor, WA
Dear Chaya,
On my next visit to the hem/oncologist I have to speak slowly, otherwise I might start each sentence with:” Chaya says…” “Chaya says….”
Your commanding stage presence and intensity mixed with wit and outreach will inspire me to speak up for myself,I hope.
Thank you,thank you, thank you for all the tools you provide us with.
Ursula
Chaya, you can now be reassured, you have no reason to “cringe”. A wonderfully clear and informative presentation. Your warmth shone through, lovely to see the person behind this great site.
Thanks,
Mary
Chaya
What a vibrant talk. Thank you for sharing this video with us so those of us could actually feel like we were there. I think it is important that patients get involved and while their Drs do know more and have more experience than us, we can certainly ask questions that make our Drs remember things we need to do. Because of your messages I just left a dermatologist office last night and while there are no real issues because of what you have advised about fighting two battles, I wanted to be more active. And no, I have not had a Dr tell me that skin cancer is prominent amoung us CLL people, I read and took the action I need to take to prevent these issues. Thank you so much for making me a more informed person. You truly are a beautiful person!
Chaya,
As the above members have stated you are one remarkable woman. I feel you give us what we need to empower us to look further for ourselves about our own type of CLL that each of us has.we We share the common acronym CLL but we do all have our own piece if it in a different way. I try to bring many of your helpful insights to my doctor as well. So with that I say thank you for letting us here this wonderful talk from the Ontario conference.
Blessings
Anita
Hi Chaya & Friends,
Just for the record Chaya, my wife and I agree that you fit into the spring chicken catagory much more than otherwise.
We also agree that our new drug discovery process is slow and inefficient compared to the amount of new discovery now being generated by our research people all over the world.
thanks for your efforts. Wondering about the details on the next CLL conference. When, where, and other details needed to plan a trip there.
Thanks,
Bravo! Bravo! Bravo!
From one non-MD doctor to another, that talk was excellent. Such a soul you have.
I’m reminded of a line in one of Lance Armstrong’s books, where he says ‘if you’ve ever wondered what an angel looks like, I’ll show you a picture of one’ and following is a photo of his chemo nurse.
Chaya you are an angel.
After listening to that talk, I will put down my anger at my diagnosis and I will enroll in the two familial studies for which I keep getting messages left on my machine.
Thank you.
Dearest Chaya:
You taught me how to be strong and to be an advocate for John. He is in remission and enjoying work, grandchildren and life in general. Each day is a blessing, but the awareness is always there. THANK YOU. THANK YOU, Beth Havey wife to CLLer John diagnosed 2002
Dear Chaya,
Thanks so much for helping those of us who missed it to ‘attend’ the conference with you. Your courage and clarity, and passion, are to be treasured. It’s lovely to have a literal voice (and face) to put on the ‘voice’ that comes through all of your written communications.
Thank you for having the courage to talk to the medical community, as well as the patient community. I keep thinking that if we had a more fashionable cancer, or a more fashionable disease like the H1N1 flu, we would be seeing huge efforts to find better treatments, sooner. By organizing as a massive worldwide community, we have power that each of us as an individual cannot. And, as you say, each patient also has to work with (and challenge, and question) our own doctors and medical teams.
Your call to informed and educated action is reaching an ever-expanding audience. I am glad that at least some of the medical community is communicating with you (and even, slowly, with us).
Dear Chaya,
Thank you for your honest, warm and informative speech. I am 59 and was diagnosed with CLL three years ago but plan on fighting this disease. I really enjoyed your statement about changing watching and waiting to watching and get ready.
You are a terrific advocate and the information on the site is very helpful in dealing with CLL.
How could we not be kind? That was a wonderful talk! And it’s great putting a voice and face to a name we all love and respect. Thanks again for all you do for us, Chaya.
Oh Chaya, it was a wonderful presentation. You are a voice for all of us. Best practices needs to be the way to go for ALL CLL patients. We wanted to go to Canada for this but couldn’t; this is the next best thing. God bless you.
lovesue
Hi Chaya
I am very sorry I did not attend this conference. My CLL had returned and I was in treatment once again. Weare very lucky to have someone like you looking out for us. Please continue doing what you are doing. I hope if there is another conference next year, I will be able to attend. You have taught me a lot about my CLL. I look forward to reading your UpDates. Once again, THANK YOU very much for all of your help.
Bob Tobin (Maryland)
Excellent Chaya,
Nice to put a face to the one I’ve read all these years.
Love the humor as you help us all deal with the hard facts of CLL.
I am sending you a private email also.
maka
Betty
Wonderful of you, Chaya, to continue to advise us about CLL.
I was diagnosed at age 54 and am still fighting at age 70. FISH was not around when diagnosed but I later asked my community oncologist to be tested (trisomy 12). I was seen at U VA at diagnosis and we talked about Chlorambucil vs. Fludarabine, the gold standard, back in the 1990’s. I decided on chlorambucil much to my community doc’s disapproval.Three years later after relapse,rituxin was the drug of choice,so I have had rituxin (5 years remission) and another rituxin round still in remission. Could the FCR treatment work well for those of us who have been around the block a few times when the time comes for treatment?
Betty, Virginia
Betty:
Remission statistics for FCR in chemo naive patients are significantly superior to those obtained in patients who have already been treated by prior chemotherapy – as in your case. How much of a penalty there could be is hard to tell for an individual case, all we have are general statistics.
Great advocacy primer Chaya. I love your down to earth style and dedication to clinical trials. Not sure about the tranplant aspect, (have seen some bad GVHD). Personally will have to weigh that when I get there. SHould be some interesting sessions at ASH. Just heard some preview talks to be given there this past weekend,
CLLmom
A great big thank you Chaya for all your work on behalf of all of us. I learn more from you than my own doctors.
Marci
As a recently diagnosed ppt, this discussion is meaningful to me. Thank you all for your community. Linda
Chaya
I am newly diagnosed with CLL, and just cannot imagine how I would have coped without the knowledge you have provided. Thank you so much for all you do on our behalf.
Nancy Young
Chaya,
Thank you for all you continue to do. You have been such a blessing to me and so many others.
David Burkett
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