It blew me away
Meeting so many of you face-to-face was a pleasure and I am grateful to the organizers of the conference for inviting me. There were some pretty famous CLL experts as well at the meeting. The most treasured moment for me was when it was announced that conference was dedicated to the memory of PC and other patients. People stood up and gave a standing ovation. Wow! He would have been so proud.
Here are the slides and text of my talk. I am afraid it all sounds a bit tame and dull when you read it here. You had to be there to get the sense of how empowered this crowd was, how much passion and solidarity there was in this patient group. This was my very first speech to a CLL group – and I am very glad I accepted the invitation. It has given me a new lease on energy.
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Thank you for that kind introduction, and thank you for giving me the opportunity to speak at this forum. It is both an honor and a pleasure.
There is an error in the short bio of me in the brochure. While I am not a professor of immunohematology at Southampton UK, a very good friend and mentor is the genuine article, the real professor of immunohematology at Southampton. Terry Hamblin requires no introduction in any CLL crowd. Please join me in wishing Terry good healing and a fast recovery as he goes through his second chemotherapy session.
Back in the 70’s there was a book called “Future Shock” by Alvin Toffler. The author talked about information overload and things spinning out of control when we have to face rate of change that is ever accelerating.
If Mr. Toffler thought things were changing too fast back in the 70’s, all I can say is he ain’t seen nothing yet! 70’s feel positively slow paced compared to what is going on in the world right now. Today I would like to speak to you about information overload in the CLL world. I would like to propose to you that now more than ever, patient education and advocacy plays a crucial role keeping patients’ welfare and agendas firmly in focus.
Back then, a simpler time and a simpler cancer – or so we thought. Gone are the days when Watch & Wait is the obvious choice for all newly diagnosed patients, to be followed down the road by a prescription for chlorambucil pills when palliative measures were needed. Cheap and automated blood tests had not been invented, and back then there was a whole lot less “watch” and a lot more “wait”.
At a time when we did not know much about B-cells – a 1960 textbook described B-cells as small, unremarkable cells of unknown function – it is little wonder CLL was considered “a good cancer”. After all, people did not die immediately after diagnosis writhing in dramatic pain! It was the “old man’s disease” back when a sixty year old man was definitely “old”. I don’t know too many sixty year olds who automatically classify themselves as old anymore.
We are also talking of an age where the social contract between physician and patient was very different. There were no HMOs, no complicated insurance systems. The man wearing the white coat was admired, respected, trusted without question. Often his role was not just that of a physician but also a social worker, a psychologist, good neighbor and father confessor.
Not too many of us enjoy that kind of a relationship anymore with our doctors. Who has the time? As medicine became more of a business with emphasis on efficiency, bottom line profits and cost control, the inevitable squeeze on time has taken a toll on this once precious one-on-one contract between doctor and patient. At least in the USA a very litigious society has made it impossible for any one to stay naively idealistic for too long.
And then Al Gore invented the internet. (You think?) And the world as we know it changed forever.
It became possible for people spread out over the whole world to gather together in cyber communities and share their information, view points. My organization CLL Topics is a perfect example of what the internet has made possible. I have “known” many of you in the audience for years, even though this is the first time I am meeting most of you. Many of you are closer to me than my biologic family.
An article published on CLL Topics is read and discussed by thousands of patients around the world literally hours after we go to press. The internet is a hugely powerful medium. As with all things powerful, there is possibility for good or evil with this technology. For every legitimate and credible patient education and advocacy organization, there are a zillion sleazy outfits willing to sell you anything from happiness in a little blue pill and a no hassle cure for your incurable cancer. More than ever, “Buyer Beware” is the best advice I can give you.
Campath and Rituxan have changed the landscape of CLL therapy. There is reason to hope these and next generation monoclonal drugs in combination with more conventional chemotherapy drugs will translate into increased overall survival. This has already happened in NHL, witness the recent unequivocal comparisons between CHOP and R-CHOP. A rigorous double arm study in Germany has confirmed FCR works better than FC in CLL patients, with better response statistics and longer remissions.
Not long ago chlorambucil was the gold standard. Now we have a bewildering array of therapy choices. While research documenting the explosion in our understanding of the disease, and better options available to combat it are wonderful to behold, there is a growing disconnect between this cutting edge science and the actual clinical practice of it at the local level.
No doubt expert institutions in North America and elsewhere are able to respond in real time to the rapid changes in our understanding of new drugs, new prognostic information, risk-adapted therapy strategies that maximize bang for the buck.
But the vast majority of patients do not have access to expert centers or experts. Especially in the US, majority of patients are treated by over-worked general oncology practitioners at the local level. Many of them graduated from medical school well before Rituxan was a gleam in Genentech’s eye. They may see a couple of CLL cases each year, lost in the crowd of more common solid cancer patients. Even hematologists see a bewildering variety of acute leukemia and lymphoma cases, the odd CLL patient gets the speech about it being the “good cancer to have”, told to go home and relax and stop bothering the busy doctor.
As a patient advocate, I would like to draw your attention to the increasing confusion that patients – and all too often, their local oncologists – are experiencing when it comes to therapy choices. When it comes to state of the art management of this erstwhile “good cancer”, gentlemen, it is a jungle out there! And your patients are paying the price for this confusion and information overload.
Real-time and well publicized “Best Practices” guidance will save lives, there can be no doubt about that. As patients, we march to a faster paced drum beat, our very lives depend on rapid percolation of information from the experts down to the local level. Our patients are ticking time bombs in that sense. Since CLL Topics is an international organization – we have members in more than 80 countries – I tried to find pictures of marching bombs with different country flags, but the only ones with short fuses were the ones with the American flag. In keeping with the stereotype persona of yanks, I suppose.
An article that I read early in my CLL career and one that greatly influenced my thinking was aptly titled “Prognosis at Diagnosis”. This article written by my wonderful friends at Mayo Clinic brought to the forefront the modern approach to CLL, with the full weight and prestige of the Mayo Clinic behind it.
No longer is this a disease with slam dunk game plan and one-size-fits-all therapy choices. We now know a lot more about what makes CLL tick. We can actually optimize the game plan for individual patients by using risk adjusted therapy choices.
Recently, I counseled a patient whose staging was changed from a friendly Rai Stage 0 to a scary Rai Stage 4 on the basis of one number in one CBC report. It seemed that the patient had a platelet count of 97. 100 is the lower cut-off for healthy platelet count range, and based on this single number the strip-mall oncologist diagnosed thrombocytopenia, mandatory Rai stage 4 diagnosis and recommended full strength FCR therapy immediately.
I call this doctoring by the numbers. It did not matter that platelet counts are notorious for inaccuracy (platelets tend to clump and the machine counts a clump of several platelets as one platelet). There was no adenopathy, no B-symptoms, nothing else to suggest things had gone to hell in a hand basket. When pressed for time, it is easier to make decisions based on numbers than putting brain in gear. I am glad to report my friend avoided being a victim of information overload, a second CBC done the next week after my prodding showed platelet count at 107. Phew. But I want you to avoid making the same mistake. 107 is not significantly more than the cutoff number of 100, and the trend in my friend’s numbers showed a gradual downward slope. He will need help down the road, but this is not a 4-alarm emergency. Not yet.
It bothers me that newly diagnosed CLL patients get little if any guidance on how they can help themselves. By my rough calculation the percentage of doctors who warn their CLL patients about the increased risk of skin cancer is less than 5%. In spite of repeat Best Practices recommendations from experts on the risk of viral reactivation, patients continue to get treated with T-cell depleting drugs such as fludarabine and Campath with not a thought about a painful attack of shingles. Valtrex has become almost a maintenance drug; long term use to prevent genital herpes is pretty well established. How about considering its use in CLL patients being treated with deeply immune suppressive therapies?
My husband had a particularly aggressive form of CLL. He died last year due to infectious complications in the process of a stem cell transplant. We came so close to beating back this incurable cancer, getting rid of the CLL sword hanging over his head for seven years. But it was not to be.
His death and my personal tragedy have not soured me on the technology of transplants. Mini allo transplants have come a long way. A recent European consensus report suggested it might be time to consider mini allo stem cell transplants for high risk patients in their first remission. For these guys the tea leaves are easy to read, there is not much to be gained by W&W, they are better off using the window of opportunity presented their first and perhaps best ever remission. I look forward to similar consensus reports seconding this approach for US and Canadian patients. It is time, we need our expert transplanters to step up to the plate and exercise leadership.
We can wax nostalgic all we want about the good old days when doctors were more like Marcus Welby and patients were well behaved, respectful and easy to treat. We live in a different world, and both patients and doctors have to adapt to this new paradigm.
I see it as a partnership, with rights and responsibilities on both sides of the examination table. Patients have most skin in this game – there can be no question about that. They deserve to be heard, they deserve respect. This is a bare minimum and if you cannot work that out with your doctor I suggest you get yourself a new one.
At the other end of the sharp infusion needle, patients need to be aware their doctors are struggling with time constraints that are often beyond their control. Your responsibility is to be well organized with your questions. Any patient that goes in “cold” into a medical appointment is wasting the precious 15 minutes of consultation time. CLL Topics provides members with a template chart program where patients can record their historical blood test results so that trends can be seen at a glance without having to shuffle through several thick files of paper.
Respect is a fragile thing, and it cuts both ways. If you go in to see your oncologist right after reading about this miracle raw veggie diet that cured a cancer patient some where and you bug your doctor about its value in your case, don’t be surprised if he does not take your questions and suggestions seriously in the future. Be warned: you are judged by the “facts’ you buy into, and there is plenty of snake oil out there. Cancer patients are a vulnerable lot, and there are plenty of people who are willing to take advantage of that.
We are all familiar (or we should be!) with the modern prognostic indicators such as IgVH, FISH, CD38 etc. But there are several politically not quite so correct prognostic indicators that are almost as important. Among them are a certain level of skepticism when reading stuff on internet chat rooms, hanging on to your wallet when it seems too good to be true, a willingness to learn and take control of your own healthcare, never letting your wishful thinking getting in the way of pragmatic decision making, and most importantly, realizing this is an incurable cancer. What you (or your doctor) do not know can kill you – or at the very least subtract several good years from your life.
It might seem to you that the deck is stacked against individual patients, you are out of your weight class in this partnership. But I want to tell you it is possible to establish trust and a good relationship – if you are willing to work for it. And as a card carrying CLL patient, it is important to have a willing and able medical team in your corner.
There is only one route to improved therapies for CLL patients, perhaps even a cure. And that involves well conducted clinical trials with live human patients. Mice and glassware experiments can only go so far.
It often takes years for researchers to recruit sufficient patients and that adds to the cost in time and money. Recruitment rates are plummeting. Only ones who seem to be able to recruit are drug company sponsored trials that hire professional head hunters who get paid thousands of dollars per patient they recruit.
There are many road-blocks to patient participation. Protocols are getting ever more complicated, it is next to impossible for layperson patients to give informed consent. Widely publicized scandals create a lack of trust. Stressed out local oncologists have little to gain by recommending their patients to clinical trials at the expert centers.
My pet peeve is rarely discussed. Lack of respect for patients. It is as if they threw a party but forgot to tell the guests about it. Every one has a seat at the table, researchers, regulatory agencies, drug companies, investors with money riding on the trial. Every one other than patients who risk their lives by signing on the dotted line.
A while back I surprised an expert and a good friend when I asked him why it is that published articles reporting on results of clinical trials almost never thank the patients who made the trial possible in the first place. At the end of the article the authors thank their institutions, other colleagues, even the secretary that did the manuscript work. Everyone except the patients. We cannot fix any of the existing problems with clinical trial recruitment until that attitude changes. Patients have more skin in this game than anyone. We deserve a seat at the table, we deserve to be heard and respected, if this process is going to work.
Prior to the egalitarian effects of the internet, medical information was rarely accessible to the layperson. Continuing Medical Education (CME) was a one way street, delivered by the experts to the local providers of healthcare. Perhaps this worked adequately when research moved at a slower pace.
But the present explosion of information has made for huge gaps in this conventional approach. Cutting edge science is taking longer to travel from the expert to the local provider, and not keeping pace with the actual use of the drugs, often on an ad-hoc and off-label basis. Much of the precious monitoring information is not being captured for post marketing surveillance programs by over-worked and under-trained local practitioners.
I would like you to consider a new paradigm, an unofficial pathway to CME that is happening with greater efficiency. Every time we come across a “Best Practices” paper from an acknowledged expert in prestigious peer-reviewed journal, we review it on our website. We work at internet speed, our reviews are often up on our website months before the hard copy of the journal makes its way to the local oncologist. Our strength lies in our ability to translate medical jargon into plain English, and our very wide readership in the patient community. After reading our reviews, thousands of our members request copies of the original articles, print them out, and present them to their local oncologists at their next appointment.
This is CME with a modern twist, from the bottom up. I strongly urge physicians not to resent this or see it as encroachment on their turf. This can be the basis of a beautiful friendship between you and your patient. Imagine how easy it is to teach a motivated student, one that is going to be a pleasure to work with.
Patient advocacy groups such as CLL Topics also help in the process of long term monitoring and surveillance of potential adverse effects. Patients write to us, very frequently. I answer close to a thousand substantive emails each month, members looking for help that they were not able to get from their local healthcare provider. As my contacts within the researcher and expert community have grown, I am able to bring special situations to their awareness, make introductions when I can.
I am happy to report, what used to be my short list of “good guys”, experts that would respond to our request for often times pro-bono help is not so short any more. I hope to keep improving on this front, so please do not hit the delete button the next time you hear from CLL Topics. We talk to many of your patients, we understand their needs and we understand yours. Patient advocates are the quintessential good faith broker that can / must work effectively with both sides.
I think most of us can agree we are certainly living in interesting times and sometimes the sheer pace of it all can get to be quite a challenge. Information is no longer a sip at the drinking fountain, it is a busted fire hydrant blasting you off of your feet.
So, if the CLL information overload is adding to your sense of insecurity and you are feeling less than spunky,
And you just can’t seem to catch a break; every time you think you are going to kick that perfect field goal Lucy keeps yanking away the football at the last moment..
If you think professional articles are not written in English, you are right. They are written in a language called Jargoneese, and only the guys who have learned the right handshake in medical school can understand it.
If you are smart enough and you can generally tell your elbow from a hole in the ground, but that is not the case when it comes to FISH and IgVH gene mutation results..
Too many choices have you flummoxed and wondering what the heck you should do, we can help you get all those silly ducks in a row
Provided you do your share of the heavy lifting. For starters, can you tell the difference between a beer-belly and a swollen spleen?
Hint: A beer belly is just a beer belly, not clinical manifestation of the dreaded swollen spleen. If this is your situation, the right prescription is fewer beers and more exercise, not a splenectomy.
CLL diagnosis is a wake up call, a swift kick you know where, it is time to quit being a couch potato.
And I don’t want to hear any of your guff about me taking my own advice! A patient told me Oprah and I have more than a few things in common: we both use our first names only most of the time, we both have a built in tan, we both need to lost a bit of weight, and we both love telling the rest of the world exactly what they should do to make their lives better..
Seriously, I have long felt “Watch & Wait” is too passive. It should be “Watch & Get Ready”. Get ready to take on this disease and beat it. If you smoke, quit. If you are overweight, you now have a good reason to get into shape. If you are over-stressed, take a good hard look at your life and decide what is really important to you.
Get out those sneakers and get ready to fight for your life. You will deal with CLL a whole lot better if you are in generally good shape.
All those things your mother told you – good food, plenty of rest, avoiding illnesses, regular and vigorous exercise – all these are now even more important.
Many of the drugs used to treat CLL are pretty tough on your heart, lungs, kidneys and liver. Patients who are fighting on more than one front are much less likely to do well.
If you run outside, watch out for excessive UV exposure. I have lost too many CLL friends to metastasized skin cancer. Remember, only mad dogs and Englishmen go out into the noon day sun. And there are very few Englishmen in this audience, I will wager.
Your doctors obviously play an important role in keeping you healthy. But it is time patients started taking some responsibility for themselves.
Infections are the single biggest risk factor CLL patients face. More patients die from pneumonia and pulmonary infections that any other single item. The person who is most important in preventing infections is YOU.
A little common sense, a bit of social distancing when dealing with sick relatives or friends, germ factories masquerading as ever so cute grandkids, a whole lot of hand washing and alcohol gel bottles, making sure everyone in your family gets the flu shot each season – all of this can add years of healthier life even with CLL.
I get a kick out of it when drug company reps call me and ask for stuff – just get my secretary or staff to take care of it.
With PC gone, CLL Topics is manned by me and our Aussie dog Jasper who insists on barking loudly whenever the phone rings. I guess she thinks she is the receptionist. Our daughter has stepped into her father’s shoes and is our new unpaid webmaster. My wonderful son-in-law (equally unpaid) takes care of the business stuff.
We have been around for 6 years now. If you type CLL Patients into Google, CLL Topics grabs the top two or more citations. This is the case with just about all combinations of words, CLL and Rituxan, CLL and fludarabine, CLL and whatever. We have a reputation for credible information and we reach thousands of patients round the world.
I hope you will visit our flagship website CLL Topics, our new Updates site that allows two way discussions, and last but not least, Harvey’s Journal. Harvey was PC’s pseudonym (he and I both liked the old classic Jimmy Stewart movie with that name) and this journal recounts his transplant experience. I will warn you, this is not pleasant night time reading. No rose tinted glasses to distort the journey of our fallen hero.
The conference organizers were kind enough to include PC in the list of patients to whose memory this conference is dedicated.
I can do no less.
He was a terrific father, a much beloved husband, an over-the-top dog lover; and he felt he was at his best, top of his game, when he was being your advocate.
If you liked the gentle hues and lovely artwork on CLL Topics, if you felt there was an artistic touch to the site that softened the harsh realities of CLL, you were responding to the spirit and soul of my gentle husband.
His online pseudonym was “Harvey”, named after the six foot tall imaginary rabbit in the old James Stewart movie of the same name. Those of you who have seen this wonderful movie may be able to see an ever so debonair six foot tall rabbit standing next to me as I conclude my talk. He and I both thank you for your time.
57 comments on "Niagara Falls CLL Conference"
Wonderful as usual. Disy Yarbrough, TX
Excellent…excellent…excellent. Good stuff, your subject(s) were well covered.
WillB425
Brava, I believe is the feminine accolade? no less than expected and what a wonderful tribute to you and “Harvey”. Thank you Chaya. How I wish I could have been that to meet you face to face, see the reactions, but you did us all proud. You sure told it like it is !!! So glad it re generated you. You deserve all of that and more.
beth
Chaya – sorry I couldn’t make it but thanks for posting your presentation. You said it all.
Mike P
I so wanted to be there but campath trumped my desire. Thanks for sending us this … you always shine, you always help, you are one of a kind. Thankyou Chaya,
Bob Larkin
Great job, Chaya. You have the patients’ attention, now if the doctors and researchers would get on board. Hi to Harvey!
Dear Chaya,
The Venkat family is a blessing to us all.
Thank you for being who you are and for doing what you do.
Namaste,
Bruce Hopkins
Wonderful Chaya! I only wish I could have been there…….maybe sometime you will speak in baltimore or san diego?
Of course the picture of ‘harvey’ and pup brought tears to my eyes.
Thank you for still being there for us.
Darlene Dorsey
Just a perfect and beautiful read before bedtime! You did great Chaya! Kudo’s to you….we are so lucky to have you as our Advocate! Rock on,
Jenny Lou
Wow….I re-lived seeing you give your speech at the conference while I was reading it just now. Powerful and emotional words and thoughts. You “brought it all home”. And I agree, an empowered crowd it certainly was. I think about meeting you and the other Cll experts and patients at the conference every day. Although I took notes during the presentations, my general take-away from that wonderful conference is “we are not alone”. Everyone was so approachable and willing to advise, compare stories, and interact with each other. I could go on and on about what a great experience the conference was, thanks to you and the other participants. Thank you so much Chaya for being there, giving this speech, and for being you.
Doug (middle name) in NM (NAU ’75)
Thanks Chaya for another kick in the fitness pants.
I guess I don’t care if you are out of shape, because you don’t
have to ‘get ready’ as I do. Not all coaches play great games.
They inspire players to be better players.
Dave Mikol
A+ Super content and visuals.
I really wish that I could have been there to see your presentation and meet you in person. Keep up the good work is but an understatement … you’re the best!
Jon
Nice to see it again. Your usual strong clear work
Many, many thanks Chaya…
Beverley
I was riding an emotional high last week, after that fantastic conference. Then I met some young physicians at the NIH and I came down to earth pretty quickly.
We discussed much of the same issues. To say we did not see eye to eye is an understatement. I talked about a project I have been considering for a while: reviewing all the clinical trials out there that include CLL patients, give them some sort of a rating based on good science, usefulness, patient friendly design, that kind of stuff. I have not yet decided whether I am going to do it – I have enough on my plate. Maybe this is a project for the next generation of patient advocates.
One of the doctors asked me what gives me the right to review clinical trials, let alone rate them. What gives any consumer group the right to rate the products they “buy”? What gave Ralph Nader the right to review anything? How about this, we are the consumers and that gives us the right to ask questions and seek information that is useful to us in making decisions?
Actually, the more important question is this: how can they stop me, or whoever comes after me, from doing this and other similar projects? In the final analysis, how can any of these guys muzzle patient advocates like me? What can they do, fire me? Sorry, I do not work for them. I work for you. And as long as you guys read what I have to say, how can they stop you form hearing my thoughts on the subject? As for my hostage, he died last year.
This paradigm shift has happened; the train has left the station. No one can change things back to the way they used to be, when patients had no access to information other than the stuff they got from their doctors.
The constructive thing to do for all of us – patients, physicians, patient advocates – is to work together to make it work better. Fortunately, that too is happening but in fits and bursts. Many of the heavy hitting CLL experts now work with us and I am only too happy to correct my understanding of the science when I make mistakes. Senior management in drug companies write to me when they have something they would like to bring to the attention of the patient community. I guess the younger physicians I met at the NIH and other newly minted MDs like them will take a little while longer to get the point: you cannot work in healthcare unless you are willing to work with patients, hear their concerns and respect their rights.
It boils down to the same thing I talked about at Niagara Falls: mutual respect, constructive partnerships and a seat at the table for all stake-holders. Less hubris, more compassion please.
It’s thekenoguy, just go back from bout 1 round one with FCR, bout 2 round 1 tomorrow, and bout 3 with round I tomorrow. Feel ok right now. I was the small town guy who went to the dig city, big names in the CCL world. At Ct scan last month found suspected and confirmed statge 1 A with no metastacies. Cut it out and hasn’t came back yet. Fully recover and not just started with CLL treatments today (FCR) So far so good. A word to live by if I may. The Dr’s planned on the infusion 10 days ago. Yesterday I call my insurance company and no on from UCSD had called, even though I had told them I need a prior auth. I don’t know what it is with some poeple. They always pretend they no for sure. Prior Auth told me that health plan requires no prior auth. I called healthplan and they me that UnitedHealthCare Plus requires no prior auth. I called health plan 3 times and I was told all times that I would be on the hook for the whole bill it I did not have PR. I went to infusion and told them the have dropped the ball, there has been no PR or at the very least a phone call to insurer.
In fact at one point the case worker got I my face and pointed down the hall and go ‘sit’. She said she had just walked in and will give me the number of the prior auth dept. She didn’t in 15 minutes so we went home.
I went to Health insurance web site approved at 9:27 Tues morn 05/05.
/We we walking out to the car at time. I call infusion and they said they were looking all over for me because the PR was there. If the would have just thought we they found out to just call the cell. I was a 1/2 block away at the time. So I finally got bact there and go tmy first treament.
Yes, there is always a point im my stories. I knew the situation. The Dr’s staff were guessing. They never lifted a finger to correct the
problom. I called the ins.. and told them please tell the infusion what they need. Do you know the cost of Rituxan?
Stand by you gut.. We have read about CLL we know more, we now the updated version, we can even use references thanks to Chaya. We have found that we know more than the ave nurse who has here breaks set and knows when that paycheck is coming. The differece…is right here.
How I wish we’d been there! Thanks for your slides. It read great. I have a clearer understanding of Advocate’s roles. I’m sure the group dynamics were palpable.
Likewise we honor you and PC.
Thanks so very much for all you do and all you an PC have done!
Too bad NCI newbies rained on your parade. If they only knew what those attitudes cost patients. It could be one of them their loved ones next. They’re young so I have hope!
Linda
Chaya,
If the conference had only had two speakers, you and Dr. Brian Koffman (gotta love him), it would have been well worth it. As it was, so much knowledge and talent in one setting was unbelieveable.
As I wake up daily and sit down with the computer, the first thing I see on the screen is a photo of you standing with my wife and me outside the hall. Thanks for letting us take that with you as it serves as a reminder there are folks like you who give of themselves so much.
One last thing: our group agreed the FOOD ranked right up there with all the presentations. :)
Jim
Thank you, Chaya, for stepping up to the plate for my husband and all CLL patients. NIH docs–bah on them. Arrogance! How true that researchers never thank the patients — clinical trials are LIVING BREATHING HUMAN BEINGS giving their lives for the greater good. How I wish Tom and I could have been there to meet you.
Yes the paradigm has shifted, we must be empowered in ALL healthcare decisions. Your presentation was outstanding–and it wasn’t “tame” at all.
Chaya,
I would have loved to have been at the conference, but work and obligations, plus my impending retirement and all the plans around that make traveling difficult.
I find the attitude of the “young doctors” you described to be apalling. Unfortunately I see the same attitudes in young professionals in the business and technical world as well. They seem to have an impatience with us “old folks”, and tend to discount our experience and background in favor of institutional education and book learning.
I would hate to think that an entire generation of young professionals has this attitude, especially those in the medical field, and in clinical research.
What we need today are competent, understanding and socially aware young doctors and scientists, who can at least show a little empathy for the people they treat, and have respect for people like you who dedicate their time and energy to act as an advocate for folks with CLL and other diseases.
I, for one salute your efforts, God bless you, please don’t be discouraged.
I hope you’ll make your way to the Dallas area someday Chaya, I’d love to meet you and hear you speak. Mike
Chaya,
Excellent…wish I could have been there. Thanks for all you do in the CLL community.
Because of you I am informed and better able to deal with my fight.
Please keep up the good work
David
Hi Chaya,
Thank you so much for being there for me and for so many others.
Derek
Hey Chaya –
Thanks for fighting for me.
You’re tops.
Chaya
I had planned to go to the conference but plans changed. I am so sorry I was not there.
I read your presentation with tears in my eyes. Thank you for being there for me.
Blessings,
Rita
Chaya:
Your speech to the conference was oustanding. While dedicating the conference to PC must have been wonderful, it must have been difficult for you to continue and follow through. You have been so wonderful bringing all the new and most up to date information to the forefront for all of those suffering with this hideous disease.
I, myself, am not a sufferer but watch and wait (and must admit at times hover) over my husband who has struggled with it for almost 4 years now.
You and PC have given the CLL community so much and for that I will always be eternally grateful. You are a strong, very thoughtful person and a robust advocate for all of those suffering from CLL.
I could never thank you enough nor could all of those who read your articles!
Sandi
Chaya,
Your presentation was great! You covered some important issues that are not talked about enough.
Any projects you take on will be appreciated by CLL patients. I always value your opinions and have learned the most about CLL from you.
I wish each unusual CLL case could be a clinical trial. That the odd cases be pushed to the top of discussion from doctors. If only the horrors that happen to patients because of certain treatment were out in the open maybe the drug companies would be forced to produce safer products. CLL patients need more treatment options soon.
Keep up your spirit and values. We all need you. Colleen
Thanks Chaya, truly excellent as usual. However perhaps the balance is moving towards patients a bit. Last week (in the UK) I got interviewed by a market research company acting on behalf of a drug company who wanted to know how patients treated with their products got on! (AND I got well paid for a 40 minute phonecall!) But I would have done it without the incentive as it was a good interview which one hopes will benefit other patients in future (No Ritux without antivirals!!!)
Thanks again, and very best wished to you
Lawrence, North Cornwall, UK
Chaya,
As usual your presentation and thoughts were excellent. Thank you again for all you and PC did for my wife Barbara.
Keeping up this site and the fight after losing PC has to take its toll on you.
You have my admiration as well as my best wishes.
Steve
I am really sorry now that I couldn’t have just hopped in my car and buzzed the 80 miles down the Thruway to attend that conference. So, thanks for the transcript and the slides.
I did have my quarterly appointment with Dr. L yesterday, and I have to admit that I really enjoy the “visits”. They are friendly, and never seem to be rushed. They answer all my questions, we communicate regularly by eamail, and even have a link to CLL Topics on the computers that are in every examining room (I put it there when they opened the new center last year, and no one has yet removed it)! I have also been on Valtrex (and Diflucan and Bactrim) since my first PCR treatment two years ago, and yesterday was offered a chance at an ongoing trial where they are experimenting with using a killed virus shingles vaccine for immune suppressed patients (it has already been successfully tested on HIV and BMT patients, and they are moving on to CLL).
But that’s another story. Back to my present topic. I sent Dr. Liesveld an email this morning asking, first, if she had attended that conference, and second, at any rate, would she be interested in the transcript.
But, I wanted to ask you first if it was OK if I passed it on to the appropriate doctors and fellows at Strong Memorial Hospital. They would need to register on your site to read it, and I doubt they would take the time to, unless they have it right in their hands. I have already printed it out for my folks to read. So, do I have permission to send it to the Wilmot Cancer center?
This brought up another idea. As I read the transcript, I was thinking that I wish that I had something like that in booklet form to read when I first was diagnosed. It would have given me a much better understanding and probably eliminated a lot of the questions that I took up my doctor’s valuable time with! The booklets and information they did provide me with were much too general, outdated or incomplete.
So, any thoughts about adding to your already busy schedule and publishing this speech in booklet form to be distributed to hospitals and cancer centers (especially cancer centers)?
Harley
Chaya,
Yes, a resounding THANKS from all of us caught with CLL challenges (Family, caregivers, “clients”)!!
We were at Niagara & the conference reinforced much we knew, but gave us energy to keep seeking. It was
so good to talk with you & hear you give help/suggestions to people from your experience/knowledge.
“WATCH & GET READY” is a MUCH better term. WAIT is too passive!!
A concern for us is that each CLL specialist center in the US (& probably Çanada??) has their own idea of which way to go to treat CLL: MDA, Ohio State, Mayo, CA each have differing ideas of which approach:
Chemo or just plain Rituxan/Humax/Campath or combinations of things.
I know it depends on each individuals case, BUT, with the same set of circumstances, we have been given different suggestions, and radically different staging levels from 4 to 0. This leads us to be ever more vigilant, & to keep searching for doctors & treatment options AND trying to keep ahead of it with learning all we can, of which you & your family have been a large part. We have read all we can & talked with CLL people for 4 years now, so have a fairly good grasp of facts.
One of my concerns is that there are more & more ÇLL “experts” (a very good thing!), but so many different views of which treatment options are most effective & best. How are we to know?? It has something to do with your comparison study idea, & maybe reviewing the trials is the place to start.
BUT for those dealing with imminent treatment (perhaps/maybe??), is there any way to do comparison of the existing varying suggested treatments??? There seem to be many acceptable choices.
You are a leading role model, & I would expect to see you/&/or your daughter speaking up/out in Washington, DC, and even now at the NIH/NCI as well as at CLL conferences, now that we all know what a dynamic speaker you are!!! You have a passion as many of us do also. You have a great platform already formed.( I think some doctors feel threatened.) Because of you, the applicants for the NCI History Study trial went from 8 people last year to 238 (more by now for sure), in 1-2 months this year after you announced it.
That’s powerful communication that you have! We are grateful! Shirley
Thanks for all you do for us. God Bless
Well done Chaya!!! YOU madam have given ME the chutzpa to gather protocol information from centers like MDA and DFCI and we will be reviewing it with my husbands local oncologist today just to make sure he is on the same treatment page as renown CLL research centers. It is my humble opinion that the phsicians who arrogantly questioned your voracity to review anything have an issue NOT YOU. Keep on keeping on Chaya, we need more people like you in the world! Eileen
Chaya:
So wonderful to hear your powerful message. There will always be two camps of doctors: ones who welcome a dialogue and ones who are threatened by it. Hopefully the new generation will balk less at informed patients. As a trainer, I am always being introduced to new exercise routines or workout websites by my enthusiastic clients. I never fail to follow-up. I look deeper and sometimes I get a hell of a new exercise for my tool box! I always tell my clients: “If you are working with someone who claims to know everything, run for the hills!”
Love
Barb & Blair
Mocha
Chaya: I can’t thank you enough for all the information you provide to all of us with CLL out in the cyberworld. Because of you and PC I have decided to take the jouney to participate in the history of CLL trial at the NCI for those of us in wait and watch. Theresa White and her associate Rani really communicate with what to expect. It is because PC pioneered through this process and gave his life trying that I too feel that I must get involved. Unless we do, we can not complain. I feel I am very fortunate to have this opportunity. People ask me how did I find out about it and I say I have a friend who has a web site who keeps me well informed. It is because of this diagnosis that I have become more involved with the cancer world and have done things I may have not done before. I have got the company I work with, to raise money for the Relay for Life, I have helped raise money for those afflicted with other cancers, and run and raise money for breast cancer, and my daughter (bless her heart, raised money for leukemia and ran a marathon in Seattle). I always felt I lived a good life no smoking, ate well, so how did this happen. Now I know it is a wake up call to get involved and help with the cause and not complain why me!. But if it were not for this web site, and while I have never met you, I consider you a friend. PC even responded before his stem cell transplant and I cried because I felt so close to both of you. We all have to get involved, know what we have to do and be prepared. I often see patients who can not even tell me the first name of their Dr, and don’t know the names of medications or their side effects. I try to educate them to know and be more informed of their health care and not totally rely on their physician. I again have chosen very good physicians who spend time with me and of course wonder why I know so much about CLL and I give you all the credit. An informed patient is good. I changed onocolgists once because I was told not to read on the internet. He was the Dr. and I should depend soley on him. I can’t do that. I want to know everything and you have helped me understand the fish testing which I would not have understood without your writings. Thank you so much to you and your family for all that you do for us.
Harley:
Please feel free to circulate the talk to your physicians, if you think it will do some good. As for publishing it in a paper booklet format, time and money prevent me from taking on that project. But it is an excellent idea, I have long thought of expanding the “CLL Primer” we have on CLL Topics website and publishing it. PC was the guy who did all the publishing stuff. You are looking at half the team now.
Harley, you are my kind of a guy and I thank you for being proactive! Imagine how much power we can muster if each member of our community takes a similar attitutde about “Teaching & Training” of our physicians. How about that folks? How about a little T&T to go with the W&W that we have to endure? Or is that way too disrespectful of our medical care establishment?
Chaya,
Thanks for giving those of us who couldn’t attend the conference the opportunity to read your presentation and view the slides.
Tim
Great talk and great slides. You should be commended and obviously that is what many people are doing.
JH
Chaya,
I do think what Harley said is a given positive to new CLL patients and for those of us that need a boost in the right direction. I thoroughly enjoyed this speech and the slides to go with it. I wish too I was bale to be there. I live in Florida and unfortunately unable to get there. I will say this though I do agree on the clinical trials and hopes of more local physicians encouraging them. I am on a list myself for a clinical trial in Bethesda,MD and hope to be helpful in participating in it as often as possible.
Thank you for this very educational report from the Niagara Conference.
I appreciate all that you do, and so unselfishly.
I am going to try and print this out too and give it to my brother in law who also has CLL.
Dear Chaya,
I really enjoyed reading your transcript from the conference. Since my diagnosis just over a year ago your site has been a well of information and inspiration.
I was scheduled to attend the conference however I was able to arrange an appointment at the Mayo in Phoenix and being from Canada I leapt at the opportunity. I do have a Hematologist here however he is somewhat reserved and he offers no information unless prompted with specific questions. This led me to arrange the complete blood work up and appointment at the Mayo. I learned more about the cause and affect of CLL in ½ day at the Mayo than I had in over a year up here and knowledge is peace of mind. By the way, your site was recommended by the Physician I met with.
Thanks again for all the hard work you, your daughter and son-in-law, (and Jasper) have done.
A great presentation, as usual. You are a Saint in providing all the CLL infomation to us. Thank you, again.
Late last year I was transformed–not into a chimp, but a low grade lymphoma. My onc doc is not very informative, so I have to look for any information. Unfortunately, I do not understand most of it, but you have certainly made it all clearer. Thank you, again.
Jack L
Chaya
Thank you so much for taking good care of us as our patient advocate. Your presentation hit the nail on the head about having a team approach to our care and that trials should contain appreciation for our participation. The new docs at NIH need a few lessons in humility and there should be a course on dealing with patients.
Please continue helping all of us. I am so glad that you met so many people that you only knew by name at the conference and now have faces to put with those names. We love you!
Thanks much Chaya for your presentation which is so relevent for both the professional community and us patients.
Being one of the fortunate patients to have lived with CLL for over 20 years I appreciate your alert regarding the NIH trial study which I have applied for.
Thanks for all you do for our edification and well-being.
Blessings and peace.
Dale
Beth Havey
Dear Chaya,
THANKS! This was great. And because I am me, I teared up at the end. Back in 2002 when John was diagnosed, you might remember our oncologist’s nurse told me that maybe I needed another doctor. The guy she worked for was the best in town so I argued with her. The reason she felt that way?? I asked too many questions, brought in too many articles, did too much research. I actually wrote a MY TURN for NEWSWEEK talking about the experience but they didnt publish it. I was too early on the scene, pointing out that medicine is now a partnership. My father died in 1950 of a heart attack. One of the reasons I am an RN is that I WANTED TO KNOW WHY??? Patients and families have a right to information and to sharing and deciding together on treatment. Yes, things have changed. Thanks to advocates like you. You are the best, Beth
It is too bad that a young Physician can’t understand why we would want to investigate and rate the many clinical trials out there for CLL. I am sure that if it was his skin in the game he’d feel much differently. Everything you say about Pateint advocacy is correct. Because it is our skin and our lives, we will see CLL options and technilogical advancement very differently and more clearly than any other interest. At least that is my opinion.
I’m a big fan of your idea Chaya to rate the clinical trials. You have a solid track record of reporting the facts, as best as know, and that would be essential in fairly and honestly rating the various Trials. It seems feasible that we can fairly rate each trial based on present science, the strategy of the drug, and an honest assessment of risk verses benefit.
Ready and willing to volunteer as needed.
Thanks and best to all.
Leo
Chaya,
Great work, again. Please do keep it up. The Oncologists seem to throw stuff on the wall to see what sticks on CLL patients. If only they would do 1% of the research that you do.
Dear Chaya,
Thank you so much for posting your presentation. I am so grateful for the work that you are doing on behalf of CLL patients all over the world. As I’ve shared with you before, my husband, John, the love of my life, died suddenly on Dec. 30, 2007 of a massive heart attack, so I know all too well the difficulties you face getting through each day without P.C. You are a courageous woman and a beacon of light to me. Know that I and countless other CLL patients draw upon your strength as we navigate this difficult journey.
Don’t change your style!
Blessings,
Kathy
Chaya, thank you for everything! Wonderful speech! I have learned much thanks to you and “Harvey.” (I happen to love that name! My dad’s name was Harvey and he was a man I adored and admired so much!)
I am one very fortunate woman! While my doctor is fairly young, he is willing to listen, to talk, and includes myself and my family in any major decision making dealing with my CLL. While he is not an “expert” in CLL, he is a rarity in that he is very caring and is willing to contact the “experts” at M. D. Anderson, where he trained, if he is unsure of any aspect of my CLL.
Thank you for willingly being a “CLL Warrior” for all of us!
Elaine
Chaya, I am glad to see that your work is getting the recognition it deserves. The NIH will catch up. Thank you, Elaine
Chaya,
We met in Niagara at the conference, I’m the woman diagnosed 11 years ago at age 24 (!). I loved your talk then and I loved reading it here again. I look forward to joining this community. Thanks for sharing Harvey’s story.
Heather
Chaya, thank you for all the information I have managed to gather on here. I am a 63 year old woman who was flattened by my doctor last year when I went to see him because I was so tired all the time and had been getting loads of infections for a long time, including shingles. As I have an under active thyroid I thought my thoroxine aught to be upped. He wiped the floor from under me when he told me it was not my thyroid by the chronic leukeamia I had had for five years! He did not even know which chronic leukeamia. He sent me to the haematologist who said it was CLL stage O as I did not have many enlarged lymph nodes, one in my neck and one a bit below my collar bone. You guessed it – watch and wait! I came on the net, found you, and got every bit of info I could. I am still worried though, they seem to think I have been at this stage for a long time, which is obviously a good thing, and as I said don’t have many swollen lymph nodes etc, but I am not quite sure how they know this. The examination was only fleeting and mostly under my arms and how they can tell with the rest of me I have no idea, as I am not one on life’s tiny people and have a few layers covering things. I also have days when I am so tired I shake all day and cannot do anything. I have seen the endochronologist who has upped my thoroxine a bit – from 50 to 75, not a lot I know. I try to do as much exercise as I can as I have a lurcher dog I love to death and take him out twice as day. I don’t even know what my blood count is, last time I went to the haematologist she just said, don’t worry, not changed that much! I do know my red cell count is ok, so perhaps I am worrying for nothing. I have a lot of stress with a very sick daughter who lost her spleen and know gets every infection going, and although she does not live with me I spend a lot of time helping her as she also has epilepsy and a blood disorder that means she gets dvt’s. She lost her spleen because she had a cyst growing in it that got so big it was going to burst. Turns out I have a cyst in my spleen as well, found when they did an ultrasound of it. Hey ho, so what else can happen. I would be happier if they would do a scan to make sure I have no more swollen lympth nodes because then I would be sure the exhaustion was not down to the CLL and I did not have nodes they dont know about. Sorry, I have rattled on and on, but this site has given me so much information and I am so grateful for all the work you do.
Thanks for listening, thanks for the information and thanks for keeping going.
Sandy
Sandy:
I am guessing you are from Canada – based on your Brit spelling of the word “haematologist” :)
I am not too familiar with the healthcare system in Canada – I know it differs significantly from the US version. For that reason it would be less than helpful for me to suggest therapy and testing options. If some of you reading this thread are Canadians and you have suggestions for Sandy, may I request you post your comments here.
One thing I think it is safe to recommend: you have an absolute right to get your own medical data. I urge all our members to ask for and keep a paper copy of each and every test result. Be polite but persistant. You have a right to this information and don’t let anyone tell you otherwise!
I hope some of our Canadian members post their comments, I can use the education as well.
Hi Chaya,
Heck, should have said where I am from! Not a Canadian, the brit spelling is because thats what I am. I live in Essex in England and came onto the internet because I really was not given much information at my first appointment. I have had one other, which was even worse. Now I am on a telephone system, the specialist has given me a form to have my next blood test, then someone from the clinic will call me a week later to let me know the results and discuss if I have any problems. If there is no change and I am feeling the same that is as far as it will go and another form will be sent for the next blood test. I know I am only at the beginning of this journey and think I am probably one of the lucky ones who have a long time between stages. If it was not for the exhaustion I get on occasions I would not be worried. Well, I am going to ask very politely (as we Brits do!) for all my test results when they phone and will not take no for an answer, then I can plot my trends for myself. I do like to be in charge of my own destiny! Thanks again
Sandy
Hi Chaya,
I really appreciate your slides and especially the aphorism to watch and get ready. This has been my plan but god only knows if when treatment is prescribe how I will react. My sense is that meditation, visualization and learning to monitor and change my catastrophic think will help a lot. There is a new form of psychotherapy called committment therapy that is interesting and helps one to own their illness so that they can fight it in way like one does in the martial art of AIkido. Will share what I learn.
I also wonder what if any progress has been made on two complementary medicines: the clinical trial of Green tea at Mayo and if any progress has been made to find a way to test Honokiel?
Thanks.
Jerry
The Mayo green tea trial report will be published around the 20th of this month and I will then be free to review it on this site.
As for the honokial work, it seems to have disappeared into limbo. So it goes. Lots of flashes in the pan that do not pan out (ahem).
Chaya,
I have been away traveling and am catching up on email. So sorry I missed this wonderful conference. I plan to retire next yr and hope to be able to attend in the future. I am grateful that you are sticking with us. I think of you as our strongest advocate and advisor.
Many, many thanks.
Chris Randolph
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