June 19, 2010 Workshop
I thought we had a good workshop yesterday. There were around 50 or so patients and their caregivers. The workshop lasted from 1:00pm to 4:00pm – I think it could have gone on longer but that was when we had to vacate our rented conference room. Many generous folks brought treats and goodies to eat during the break – thank you!
Below are the slides and comments from my presentation at the beginning of the Workshop. The discussion session that followed was very interesting, a lot of back and forth between the participants. In future workshops my preference would be to increase the time spent in the discussion sessions and drastically cut back on my opening remarks. Given our limited resources of manpower and funds, I do not think I can manage monthly workshops. Tentatively speaking, the next workshop will probably be in early August.
I want to point out that there are other CLL workshops you should be aware of. Diane MacKinnon hosts monthly workshops in the DC area. Click here for the details. I understand John Balan organizes regular workshops in the NJ and NY areas. You may want to contact him for the dates, venues etc.
Welcome. Thank you for coming to this first CLL Topics workshop.
Let me introduce our team. It should not take too long since there are only three of us. Most of you know me – at least by name. I am Chaya Venkat. I started this patient advocacy effort after my husband was diagnosed with CLL in the summer of 2001. Whatever we do right or wrong on our website or this workshop, the buck stops at my laptop. I take full responsibility for our content.
Please say hello to my daughter Radha. She is our webmaster, she is in charge of all things having to do with the website. My husband PC was our fist webmaster, editor and publisher. I am very proud that Radha chose to step into her father’s shoes when he passed away June of 2008. If he and she were not there to build and maintain the soapbox of CLL Topics and Updates, I would be mute, I would have no way of reaching any of you. The third person of our team is Peter Fortman, our treasurer and the best son-in-law in the whole wide world. He is the one who takes care of our finances, keeps track of the business issues, donations, taxes etc. That’s the size of our team. Unless you want to count Jasper, PC’s therapy dog. Jasper thinks she is the receptionist – she discharges her duties by barking loudly whenever my phone rings.
Let’s get started. This is a workshop, not a lecture. The idea is for you guys to set the agenda, decide what issues need to be addressed. But since this is the first workshop I thought I would get the conversation going with a short presentation. Feel free to ask questions or comment as we go along. In future we will solicit topics of discussion ahead of time from attendees.
What do we want from our doctors?
At first glance this seems to be a simple question. We want our doctors to take care of us, help us beat the odds and fight this disease. We want them to be smart, well informed, compassionate, and wise. We want them to give us answers to the many questions we have about what ails us.
But obviously things are not working out just right. There are unmet needs and confusion about our respective roles, given the level of frustration felt on both sides of the examination table. Things are changing rapidly in the health-care arena and no one is quite sure of the new rules of engagement. What we have here is a failure to communicate you might say. So, I thought I would start off our discussion with a few slides outlining what I think we want from our doctors. You may disagree with my point of view, you may want to add or subtract from this list. Speak up. The whole point of this and hopefully future workshops is to serve your needs, what you think is working right, what needs to be improved in your health-care as you face down this disease.
I want to reassure you, there is no recording of this conference. No one is taking notes, no one is taking down names of participants. I will put up my slides and these opening comments on the website – my privacy was shot a long time ago and I no longer worry about it. We take patient confidentiality very seriously and nothing you say here will be reported by us. You took the time out of your busy life to attend this workshop; it would be nice if you can share your thoughts on the workshop as a whole as well as the discussion session with the rest of our membership. I hope many of you will do that. But whether you choose to comment here or elsewhere, that is your decision.
We need a rock solid diagnosis.
Until quite recently, not much was known about CLL. Just a few short years ago CLL was just one more member in the family of non-Hodgkin’s lymphomas. Even more recently, even after CLL was split out as separate cancer, SLL was still part of the NHL family. Now the consensus is that CLL and SLL are the same thing, even though they may have slightly different ways of showing themselves. Our understanding of CLL and what makes it tick is increasing rapidly. With understanding comes the ability to fight it more effectively.
How can you fight an enemy you cannot name? There are too many B-cell cancers that can look like CLL to the untrained eye. Mantle cell lymphoma is one such kissing cousin. It is a more aggressive cancer, needs different therapy strategy and you are not well served if your CLL diagnosis is an error and you actually have MCL.
Today, given the level of access to modern diagnostic testing, there is no excuse for incorrect diagnosis in the vast majority of CLL cases. For most CLL patients, it is possible to get a dependable diagnosis of CLL with little more than a CBC (complete blood count) and a flow cytometry. Both are blood tests, both are pretty much automated by now, both are offered by all the major commercial testing labs. It should be slam dunk for your oncologist to order these tests, get the results and read the tea leaves for you in a matter of a week at most.
True, a small percentage of patients present with very atypical disease, where the diagnostic tea leaves are a little harder to read and these guys are best served by going to an expert center where they can do more advanced testing. SLLvariants of CLL may also pose a problem in early stages since SLL patients have the vast majority of their cancer cells tucked away in swollen lymph nodes or spleen, very little of the disease shows up in their blood. A blood test on early stage SLL will not be very useful. For these guys it may be necessary to do a lymph node biopsy and use the biopsy material for the diagnostic flow cytometry testing.
Watch out for the guy who orders unnecessary tests! I have often wondered why so many doctors order tests that are not really needed. In third world countries like India there is often a link between the doctor and the testing lab, with lucrative kickbacks for each patient the doctor sends to the testing lab. In this country the incentive for over-testing is probably not quite that obvious. Perhaps it is concern over potential lawsuits and doctors cover themselves by doing more tests than necessary. Or it may have to do with sheer laziness, not engaging brain before writing the prescription, practicing medicine by rote. It takes time, patience and years of experience to do a careful physical examination, poking around looking for swollen nodes and measuring the size of the spleen with nothing more than experienced fingers. It is far easier to tell the patient to go get a CT scan. Whatever the reason, there is an explosion of over-testing in this country. Please read our article on the risks and rewards of CT scans. Expensive medical procedures are not necessarily in your best interest. There is nothing that can be learned from biopsy material from a lymph node that cannot be learned from a simple blood test at the time of first diagnosis, not unless the patient is an SLL patient with all of the disease present in swollen lymph nodes and no trace of it in the blood. Everytime your doctor orders a test, it is a good idea to understand how it is actionable. What is the point of doing the test, how will it effect treatment decisions? Unless the testing is being done in the context of a clinical trial, there is no reason to test just to satisfy the curiosity of the doctor.
Our first local oncologist was not one that I would recommend to any other CLL patient. My husband PC went through a painful and completely unnecessary lymph node biopsy. He was also told to get an ultra sound and CT scan. This was just at diagnosis! Completely unnecessary, expensive, and exposing the patient to inherent risks of anesthesia and radiation. It really pi$$ed me off that with all these additional tests the local oncologist still got it wrong, PC was diagnosed with stage 4 non-Hodgkin’s lymphoma. It took a trip to M. D. Anderson before we got the story right. PC had Stage 1 CLL.
Prognosis at Diagnosis
The fact that you are here, that you are members of the CLL Topics community tells me one thing. You are not the ostrich variety of patient. You want to know, you want to have some control over your own healthcare, you believe knowledge is power. In other words, you are my kind of people.
Until recently, until patient advocacy groups and the more vocal patients began to raise a stink about it, majority of local oncologists called this disease “a good cancer to have” and that was the extent of prognosis information patients got at diagnosis. Calling CLL a good cancer is condescending and insensitive at best, downright wrong at worst.
I think feel-good clichés are inadequate when patients face an incurable cancer. True, some folks have a very indolent variety of CLL, may not need therapy for a long time. For them CLL does not significantly impact either quality or quantity of life. But for the rest of us chickens, CLL will impact your life, and the life of every one who loves you. Average life expectancy after CLL diagnosis – this is an average, your mileage may vary – was about 8 years. Was, because it has been going up with modern understanding of the disease, its complications and how best to treat it. That is the good news and we should all be aware of it, celebrate it.
Roughly a third of patients diagnosed with CLL will have very low keyed variety of the disease. These folks are in what we call “Bucket A” risk category and they will not need therapy for a long time, if ever, and they will not face much decrease in quality or quantity of life. Another third of patients will have middling disease, Bucket B. They will need therapy down the road. But chances are good that they will get decent remission and trundle along for quite a while without too much trouble. It is the last third of patients that will face the true wrath of this disease. These “Bucket C” patients often face therapy decisions very soon after diagnosis, they are most likely not to get long lasting or trouble free remissions. They will go through layers of salvage therapy, relapsing more and more quickly after each round of treatment. They face more infectious complications, pay a bigger penalty in terms of loss of quality of life. Telling these folks that they have a “good cancer” is adding insult to injury.
Under-treating an aggressive form of CLL can be a devastating mistake. Equally important, over-treating an indolent form of CLL with too aggressive chemotherapy regimens is like shooting yourself in the foot. I often use the analogy of a hornets’ nest, sleeping quietly in the sunshine. Why would you want to take a big stick and shake it up, get the critters all mad at you? That is the equivalent of over-treating an indolent form of CLL. Here is the take home message. It is next to impossible to make smart therapy choices until and unless you know what kind of CLL you have, your particular risk bucket. If you happen to draw the short straw and are in the high risk group, it is important to know that right up front. Fludarabine is probably the most commonly used chemotherapy drug in CLL. And it does not work in patients with the dreaded 17p deletion (FISH test). Why would you want all the toxicity and risk of adverse effects associated with single agent fludarabine therapy, if it is not even going to work for you? You might be better off using one of the chemo-immunotherapy combinations such as FCR, which have been shown to have more oomph in these high risk cases. And if you are a young patient with a lot of life left to live, you may want to think about a stem cell transplant down the road. See what I mean about knowledge being power?
Prognostic testing is not cheap, only some of the commercial labs offer full set of testing. Over the last decade a number of prognostic markers have been suggested. We reviewed the most promising prognostic candidates in our article “What type of CLL do you have”, way back in 2003. More recently, just in the last week or so, Dr. Terry Hamblin wrote for us with his take on where things stand today, what has withstood the test of time. Interestingly enough, he too picks the same list today as we did back in 2003.
So, what is the short list of prognostic tests? We are talking of FISH test, IgVH gene mutation status test, and flow cytometry to see if you are positive for CD38 and ZAP70. Beta-2-microglobulin (B2M) is measured by an inexpensive test. That’s the lot, that’s the list of prognostic indicators that will give you a good sense of the lay of the land. Each and every one of these is a blood test. But if you are a SLL variety with all of the disease in swollen lymph nodes and no trace of anything in the blood, obviously prognostic testing cannot be run on blood, it will need a bone marrow or lymph node biopsy to do these tests. It is also not possible to do blood tests for these prognostic markers if you are a very early stage patient with hardly any CLL cells in your blood, yet. Wait a bit until the disease has had a chance to become obvious in blood counts before getting the prognostic tests run.
Some HMOs balk at prognostic testing, for cost reasons. A small number of oncologists can’t see the point of all this new fangled stuff that was not mentioned back when they went to medical school couple of decades ago. A few don’t want to order the tests because they are not sure they know how to interpret the results. In each case, my advice to you is to try your powers of persuasion and negotiation. They say you can catch a lot more flies with honey than with vinegar, though I do not have personal track record on that front. When all else fails, there is always the tried and true remedy of voting with your feet and finding yourself a new doctor who is cool with modern approaches to treating CLL. Finding a new doctor is a stressful thing, and it may involve inconvenience in terms of longer travel time etc. But in the long run it is not to your advantage to be treated by a physician who does not have your confidence.
But I want to talk about doctors that do not believe you have a right to that information. A kind way of putting it is they don’t want you to worry your pretty little head about it, you are not smart enough or competent to understand how cancer prognosis is going to effect your life. My question to these guys is a simple one. Who elected them god? It is your body, your life. You may decide you do not want to know – and that is your right, your prerogative. But no one can or should be able to deny you access to information about your own diagnosis and prognosis, if you want to know. Hey, you may be every bit as dumb as your doctor thinks you are (not!)but you may have this spouse of kid that is a real genius and can sort all this stuff for you. Or you can read up about prognostic indicators at a credible patient advocacy site. How can your physician be presumptuous enough to make the decision about something as important as your access to your own medical information, after seeing you for a fifteen minute consultation? Last time I looked, not too many oncologists have advanced degrees in psychology. In any case, no reputable psychologist will make such a snap judgement call on his/her patients’ competence.
On the other side of the fence, I often hear complaints from doctors about unrealistic expectations some patients have. No one has a perfect crystal ball. No one can tell you with 100% surety how this disease going to behave in your particular case. Prognostic markers will give you some sense of the odds – how it may behave, how it behaved in statistically large samples of patients with similar prognostic profile. But statistics are just one way of handicapping the horse race. They cannot tell you for sure which horse is going to win, which one is going to stumble getting out of the starting gate. Holding your doctor accountable for guaranteed outcome of prognostic testing or therapy is both unrealistic and unfair. The best your physician can do for you is give you a good sense of the lay of the land, based on years of experience – and modern prognostic testing.
One last sobering note. CLL is still an incurable cancer. It still kills people. Age at diagnosis matters. Most young guys diagnosed with this disease will face huge decrease in their overall life expectancy as a result of this disease. Someone who is 85 and just diagnosed with CLL – especially if it is a low risk variety – the penalty in loss of life expectancy is vanishingly small. But for some one in his 40’s, a projection of average life expectancy of 10-12 years is a huge blow. Even the best and most knowledgeable doctor cannot change that fact. He can help you play the hand you have been dealt to best advantage, make sure you live as long as possible and with the best quality of life possible. He may guide you through a allogeneic stem cell transplant (“mini-allo” transplant) that may actually CURE you, get this monkey off your back once and for all. But when all is said and done, your physician too is another human being with no magic wand to make all this go away.
The well informed doctor
So let’s talk about a well informed doctor. What can he do for you? What can you expect reasonably from your oncologist, over and beyond an accurate diagnosis and your possible prognosis?
He can warn you of what to watch out for. He should warn you of the risk of secondary cancers. He should tell you about skin cancer, how it is much more likely to happen in immune compromised patients such as you, how it can be a lot more aggressive and dangerous for CLL patients. He can read you the riot act about avoiding excessive UV exposure. He should test you for vitamin D3 sufficiency, especially if you are good about avoiding sun / UV exposure like he told you to do. He should make sure you are on vitamin D3 (cholecalciferal) supplements if you are sub-par on this important vitamin.
He can tell you about pulmonary infections. How majority of CLL patients die of infections, especially pneumonia and other pulmonary infections. He can give you guidance on how to avoid getting infections, how to improve your odds of staying out of the hospital during flu season since you are not going to benefit all that much from flu shots. (But you should still get your flu shots, for whatever little good they may do you. It is even more important that everyone else in your family gets flu shots, so that you can get the benefit of “herd immunity”). He should warn you about the risk of shingles if you have been exposed to chicken pox in your younger days. He should make sure you are protected with prophylactic medication (famcyclovir, acyclovier etc) if you are a high risk patient, especially if you are going through T-cell depleting therapy using drugs such as fludarbine or Campath.
He can tell you that just because you got CLL, that does not mean you are now exempt from all the other stuff that go can go wrong for human beings getting on in life. You still need regular checkups for breast exams, prostate exams, colonoscopies etc. You still need to worry about being obese, about lack of exercise, about poor diet, stress, smoking etc. He will ask you about any over the counter medications you are taking, talk to you about the risks of “poly-pharmacy” – taking too many pills at the same time, without careful evaluation of how they may interact with each other. As a cancer patient, it is even more important that you hang on to your wallet and don’t buy a lot of snake oil stuff that can really hurt you in the long run. In other words, he will treat all of you, the whole person, not just your CLL.
He can say and do all these things, he can be a paragon of virtue and competence, and it will be of no use at all unless you have your ears and mind wide open to receive this good advice. If you are like most of us, stressed out and unable to concentrate when faced with a cancer diagnosis, if doctors’ offices send you into a trance where your brain stops working and you cannot remember a thing the Man said afterwards, make sure you take someone with you who can be your eyes and ears, someone who can take notes that you can refer to later, when you are calmer and more able to concentrate. Sometimes doctors are comfortable with you taking a tape recorder with you into the consultation, so you can record the conversation. But please be sure to ask permission before you record – it is common courtesy, and possibly the legal thing to do.
When Watch & Wait ends
Frustrating as W&W is to most patients, believe me it beats the alternative – by a mile. With the exception of a minority of CLL patients who have a truly “smoldering” variety of CLL, most patients will eventually reach a stage when they are going to need therapy to rollback the disease. That is when the hard work you did in selecting a good physician and building good interpersonal relationship with him/her is going to pay off, big time. The time to do the hard work is well ahead of time, not when you have reached a crisis point and need to react quickly. You know the parable of the ant and the grasshopper. Plan ahead.
This is a complicated disease with few slam dunk answers. Nothing is plain vanilla black and white, everything is a frustrating shade of grey; a matter of weighing risks against rewards. Sometimes none of the choices are particularly attractive, patients can get caught between the devil and the deep blue sea. It is your doctor’s job to explain your available options, clearly lay out the risks and rewards associated with each choice. Should you go with the tried and true “gold standard” or should you explore the road less travelled? What is likely to give you most bang for the buck? Are there good clinical trials that may offer you a chance of getting access to state-of-the-art drug technology, along with a nice bit of good karma for doing the altruistic thing for future generations of patients?
While they can lay out the options and explain the risks and rewards associated with each of them, most doctors have a preferred choice, the therapy that they think is the best option for you. Consensus decision making is not easy and our medical schools do not train doctors to be good at it. Should your doctor lay down the law, there is nothing left to discuss, it is his way or the highway? Most of us feel intimidated in situations like that. We have been conditioned to be respectful to the guy in the white coat. Surely he knows what is good for you?
But there is this little problem. You are the one with CLL, it is your body, your life, your family is the one that is going to be grievously hurt if you kick the bucket. You have far more skin in this game than your doctor. Surely that means you have some say in the decision making? Does your doctor have the listening skills and the ability to come up with a consensus plan that both he and you can agree on? How about the other side of the coin, the doctor that lets you get away with any silly thing you suggest, does not bother to correct your mis-conceptions? If he does not push back when you suggest wheat grass and juicing as an alternative to necessary FCR therapy, something is not working quite right in your relationship. This dynamic tension between listening to the patient’s preferences and needs, but fulfilling his role as the trained and experienced physician – it is possibly the most important thing to look for in your oncologist.
Once the decision is made, that is just the start of a complex process. Drug dosage details, scheduling, insurance issues, prophylactic medications that the patient needs to be told about – tons of things that need to be thought through and carefully communicated. If you are like me, detailed understanding of what is going to happen, some level of control over the process – this is necessary for sanity. Get into the habit of writing down stuff, filing information. Maintain a medial log, whatever it takes to capture all the information. Down the road you will be glad you did.
Every once in a while there is a news report about how many patients die in this country due to silly and avoidable errors made in hospitals. Wrong drug is given, the dosage is not right, they got the patient’s name mixed up, they cut off the left leg when it was the right arm that was supposed to be amputated – scary and needless errors. I believe things are getting better, most hospitals are introducing ways of checking and double checking stuff. All the same, when PC was going through therapy, I had a cheat sheet with me each time. I knew exactly what drug he was supposed to be getting, at what dosage, what precautions were to be in place, what pre-medications he should be on to reduce risk. This is something that patients’ find hard to do for themselves. CLL takes a lot of stuffing out of our guys, both emotionally and physically. If you are a patient going through therapy, it is a huge advantage to have your significant other there to hold your hand, watch out for the details, talk to the doctors and nurses, drive you home and make you your favorite comfort food with a large dollop of tender loving care.
Managing expectations is important. What does your doctor tell you about the possible results of the chosen therapy? Does he sugar-coat the potential risk factors, adverse effects, does he project the most rosy of all outcome scenarios? If he does, then his patients are sure to be disappointed down the road. An optimistic approach is necessary, but not condescending, over the top sugar coating of facts. Reality will set in, sooner or later, and the patient is left feeling like road kill that has been run over by an eighteen wheeler. Managing expectations is hard enough to do, and it becomes a lot harder if the patient is unwilling to listen or accept any reality check. In other words, the doctor has his share of responsibility in this two way communication, you have your share of responsibility as well. It works best when both you and your doctor are willing to participate in the process.
The Patient from hell
I get a lot of emails from patients anxious to tell me about their experiences at the hands of incompetent or insufferable doctors. I am willing to bet there are many more such stories that I never hear about, the patients involved are too shy to speak up, too intimidated, or no longer able to speak in their own defense because they are no longer living.
What might interest you is that I hear almost as many horror stories from my contacts among local oncologists and CLL experts. Each one has a favorite story to tell about the “Patient from hell”. Sometimes it is just a question of incompatible personalities. But more often it is a matter of unrealistic expectations.
With the best of intentions, even the most experienced doctor cannot save the life of a terminally ill patient. CLL is an incurable cancer. My phone book is full of numbers and email addresses of good friends who can no longer answer the phone, who have no use for email addresses in this world. Remember this mantra – doctors are human too – and you will not become the patient from hell. You will not expect your doctor to have god-like ability to control life and death, you will cut him some slack for having human emotions of tiredness, bad temper and frustration once in a while like everyone else. You will understand he too has his biases, his built in blind spots and prejudices, just like everyone else.
Can your doctor be your best buddy? No, he cannot be and you should not want him to be. Remember the old adage that no doctor should treat a member of his own family? There are plenty of good reasons for why that is so. Physicians need to maintain a clear head to make smart decisions. There is only so much emotional bandwidth each of us has, only so much grief we can handle at any given time without losing it. Would you want to be treated by a physician who has just lost his best buddy patient before he walked into your hospital room? Would you want him making critical life and death decisions with regard to your care, while he is on an emotional roller-coaster of grieving for his previous patient? Doctors who cannot maintain a certain amount of detachment soon burn out. Look for that kind of unconditional love and support from your family and your close friends – not your doctors. That is not their job, it is not their proper role.
I must confess, this is an area where I speak from some amount of personal experience. Patient advocates and nurses too face similar risk of burn out. By the very nature of our interaction with patients, we have to be emotionally closer. Clinical detachment that doctors can develop as a way of protecting themselves does not work as well for nurses – or patient advocates. For me it has been a constant struggle not to get in so deep that I cannot resurface to help the next patient that needs me. Sometimes it has been a touch-and-go. I have been doing this for a mere 7 years, most of my patients I know as online contacts. ICU nurses who put in long hours each and every work day, see their patients and their families up close and personal, and do it for all of their professional lives – these are the unsung heroes of our health-care system. The next time you come across a really good nurse, please remember to say thank you.
What is the role of patient advocacy?
If you broke your leg and went to the doctor, the process is a simple one. An x-ray will confirm the diagnosis, your leg gets put into a cast and you are given the usual instructions to stay off it for a few weeks. No big deal, some pain but not much angst. No need to call in the experts, unless there is something very unusual about the broken leg.
CLL is a very different situation. First, it is a complicated cancer in the sense that no two patients are exactly alike in their prognostics, symptoms and how they respond to therapy. Second, we are learning more and more about this disease as time goes by. The rate of change in our understanding of CLL is mind bending. It is next to impossible for most local oncologists to stay abreast of the latest cutting research being done at the expert centers.
Conscientious doctors depend on national meetings like the ASH (American Society of Hematologists) and ASCO (American Society of Clinical Oncology) to hear about the new developments. Continuing Medical Education (CME) programs are geared to help physicians stay sharp. Medical journals like “Blood” and “Journal of Clinical Oncology” provide excellent reading opportunities. All of these are necessary and important for your doctor to be up to speed on new developments.
But what happens if this downward trickle of potentially life-saving new information from the expert to the local guy slows down or stops altogether? Running a busy oncology practice is a full time job. What if your guy cuts a few corners when it comes to keeping up with his CME exams? That is where patient advocacy comes in. We are in the middle of this triangle of experts, local oncologists and patients. We have contacts with local health-care providers, we talk to all of the experts, and most importantly, we talk with the patients. We can teach you what you need to know, we can tell local guys what their patients need, we can help expert centers recruit patients for pivotal clinical trials. We can make the process work better by facilitating communication between all three stake-holders.
All this stuff is important. But there is one aspect of patient advocacy that takes first place in my head and my heart. Doctors and experts have plenty of support, lots of spokespersons looking out for their interests. Patients are often the “little people” overlooked in the process, no one invites them to a seat at the table, no one has their agenda at heart. That is my role. To speak for you when you cannot, listen for you at meetings to which you are not invited, warn you of things that can bite you personally in the backside – that is at the heart of what I try to do.
Several pharmaceutical company reps asked me if they could attend this workshop. The answer was a firm and unambiguous NO. This is a patient meeting, last thing you want is to listen to a bunch of salesmen. But down the road, I want to try and get local CLL experts to make guest appearances at future workshops. How does that grab you? Do you think that will be useful, or do you want to keep this strictly for patients and their families? Let me know.
Thanks for coming, thanks for your support that makes it all work.
Happy Father’s Day. And for “Harvey” and all the fathers who are no longer with us – we will not forget you.
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52 comments on "What We Discussed at Our First Workshop"
Dear Chaya,
Many thanks for your great work you and your daughter did on this Workshop. It was awesome! I can’t tell you how much it benefitted me, and I know it was a great help to the others at my table as well. We are hoping that you have these on a regular basis!
With gratitude,
-Donna
Words cannot express the gratitude due you for the lifeline you have been through all the emotional storms created by this diagnosis, but a simple thank you must be offered for all you and your family have done.
It must be difficult to juggle all the different perspectives and agendas that CLL generates. Thank you for keeping us all at the core of your decisions. I wouldn’t want to hear from any drug rep (unbiased? I don’t think so, even if they have a good product). Experts in the field? That sounds like gold. That kind of extending-of-the-hand goes a long way to bridging the divide. Knowledge helps calm anxiety and clarify choices. Thanks Chaya!
Since we live too far away to attend it is wonderful to “hear” your lecture and see the slides. You do great work. I am an RN with a spouse with CLL (bucket B) and Follicular Lymphoma as well. He has done well since his chemo but still has infrequent bouts of pneumonia in spite of all precautions to stay healthy!
We are very fortunate to have an excellent oncologist who consults with the oncologist we saw for a second opinion at Dana Farber.
Thanks again for your wonderful work!
Dear Chaya, My husband (who is the CLL patient) and I would like to add our heartfelt thank you for your devotion and the wonderful gift of knowledge you have given to us through your work.
We would also like to welcome you to the Washington DC area and hope to be able to thank you in person at the next workshop.
My husband will be starting Dr. Cheson’s Bendamustine/Ofatumumab Phase II clinical trial tomorrow.
Yours very truly,
Laurie Landy
bob pedersen
Dear Chaya, my wife found your site and gave it me with hope that I would read and understand from the other side of the examination table, what CLL is like and its consequences. I have read your newsletter each time with interest. Often I have taken a copy to my oncologist, who is also familiar with your writings.
I was diagnosed with CLL in 2006 at the age of 53, after routine foot surgery (bone pathology). I have been a Type 1 diabetic since 1973.
In late February 2010, WBC > 135, I began FCR treatment, with weekly blood transfusions (9 overall). After two (2) regimines, FCR treatment was stopped after WBC fell below 2.1 and Hgb 13.8 with WBC rising very slowly. A second biopsy was ordered and the results show evidence of CLL or MDS. I am not sure what the future brings, other than a chance of hope and maybe a cure.
Keep up the wonderful work, and may you have more good days than bad.
Sincerely
Bob
Chaya,
There is one thing that I DO NOT like at all about this meeting. The fact that I live too far away to attend! I really wish that I could be there for every single one! I know that the attendees appreciate how lucky they are to be near your new home Thank you for posting your meeting for us to read. Very good advice!
Rock on and take care,
Jenny Lou
Chaya, Thank you for the summary of the meeting. I wish my husband (the patient) and I could have been there. He is starting is 20th year with CLL & now Lymphoma. He has had every treatment available, some almost killed him and he cannot have them again. He will be starting the last approved chemo on Friday. Just a run down on time frame, diagnosed at age 52 and no treatment for 2 years. Started oral medication and almost immediately developed autoimmune hemolytic anemia…after about 30 transfusions, his spleen (the size of a 2 litre Pepsi bottle) was removed….he finished whatever chemotherapy he was getting at that time. He had a 6 year remission.
In 2000 he started therapy with Cytoxin, developed pneumonia, was hospitalized and developed pulmonary fibrosis. After spending 30 days in hospital, he was sent home with oxygen and was on steroids for year. He does have some lung damage, but has virtually recovered from that. He has hardly been out of therapy for any length of time since then.
My final comment hs to do with ADVOCACY. If I were not there to advocate for him, he would never have known what questions to ask or what answers might be right. He has never read word ONE about his illness. I have found CLL Topics invaluable. It has given me insight into many things I would not have known. I THANK YOU AND YOUR LATE HUSBAND. KEEP UP THE GOOD WORK.
FRAN
Chaya, I echo Jlou! (I can’t help but wonder if sometime down the road a video type conference via the internet would be possible?) Still, thank you for posting this. It has made me realize all the more of how fortunate I have been on this journey. My original doctor missed diagnosing the leukemia the year before but, once he did diagnose it, he called a local clinic with visiting oncologists. By the luck of the draw I ended up with a wonderful doctor. He has been everything you have described a good doctor should be! He has talked with me about treatment options and although I am in remission now, we have discussed the possibilities of transplant should I fall out of remission. While he is not a CLL specialist, he does have contacts and uses them!
Thank you again!
There is always a personally relevant gem of useful info in every article – and this is no exception. After 6 x FCRM I wish I’d found the gem about antivirals when on “F” earlier .. compared to many a fee weeks of pneumonia, anemia followed swiftly by shingles is not much to write about .. But the gem is that certainly the latter might have been avoided with prophylactic treatment .. Dr told me this today .. after the diagnosis ..
.. so my message is to read read read the updates and politely challenge ANY areas of doubt in your mind. This articles is INVALUABLE to new CLL folk as a summary of what to look for and what stance to take. Many thanks for this – and for the opportunity to “vent” to unseen others who can probably relate to the views given .. it is a very important role of the forum I think.
Chaya,
I live too far away to attend so was glad to be able to ‘read all about it’. Your messages are so important for those who have had this diagnosis for a short time or a long time. Thank you
Chaya:
As always, “thank you”! Even though i was not able to attend this meeting (as i live too far), – the information which you included in the web site and your power point slides were “right on target”!
You have been our (my wife and i) “guiding light” for the past 4 1/2 years, since i was diagnosed with stage 4 cll.
Thank you so very much for what you do!
Alan
Chaya-
Thanks so much to you and your family for Saturday’s amazing workshop. The greatest benefit to me was the realization that my current oncologist is not right for me and I have started looking for a doctor who better meets the criteria you presented. Thanks again for all you do.
Jim
I too enjoyed the Workshop last Saturday and echo the heartfelt thanks to Chaya. I particularly appreciate Chaya’s reference to the Patient from Hell who has unrealistic expectations of his/her doctor. At the same time there is also another type of Patient from Hell, so called by some doctors, who insists upon a reasoned explanation and data driven solutions. An interesting read about such a patient who may have saved his own life by being proactive and questioning is presented in the following book: (available at amazon.com)
Patient from Hell: How I Worked with my Doctors to get the Best of Modern Medicine and How you Can Too [Paperback]
Stephen H. Schneider (Author), Janica Lane (Author)
Though it concerns a lymphoma patient who also was a science professor at Stanford, there are lessons here in his experience for us all.
Thank you, Chaya, for all you do and the information you convey to all those that are interested in the subject.
Stay well,
Monique
I attended and appreciated the workshop very much. There were so many good take-home messages. Clearly, the more one knows, the more one can make informed decisions about one’s own care. We can’t expect our doctors to have the same intense interest and same criteria for making our decisions about our care.
A few items from Chaya that resonated in special ways:
* Every test should be actionable. What’s the point? To affect treatment or to satisfy the curiousity of the doctor?
* Don’t over treat, don’t under treat. There are serious downsides to both.
* While taking care to avoid dangerous sun exposure, we can become at risk of vit. D deficiency or insufficiency. Chaya encouraged us to be tested, to take supplements (at the right dose) if needed, and to be retested (!) to determine if the dose was correct.
There were many useful comments from the workshop attendees during the discussion sections. Some that stood out for me were:
* Quest Diagnostics can and will send patients their test results directly (not just to one’s doctor) in some states, but not others (e.g., PA- yes, VA- no)
* Practical ways spouses/partners/care givers can help: data management, appts, logging lab test results, drugs, phone numbers, driving, sounding board, etc.
* Explanation of why Azerra avoids some of the side effects of rituxan ( it does not have the murine protein that triggers allergic reactions)
* Discussion of plusses and minuses of relative vs. unrelated donors for stem cell transplants. (Unrelated but “matched” donors have the advantage of having a slightly different immune system, so might be more effective. Related donors might have lower chance of graft vs. host disease, but might have less effective graft vs. leukemia ability if too similar to patient)
* Increased sensitivity of polymerase chain reaction (PCR) tesing vs. CBC only to determine remission status after treatment.
* Shared experiences on who and when to tell what about diagnosis, especially family members and employers.
* Shared experiences on how to prevent/treat bug bites.
* Clarification on “mixed markers”. If someone has one marker associated with a relatively good prognosis, but another associated with a relatively bad prognosis, does one trump the other? Answer: it semss that IgVH seems to trump the others. With respect to treatment choices, 17pdel dictates treatment because fludarabine is not effective.
* Update on cancer registry data: They store personal identifiers (they need to be sure they only count cases when newly diagnosed, not wiht every lab test) but only make statistical group info publicly available. BUT (not shared at workshop) registries sometimes allow bonafide researchers access to identifiers so they can invite people to participate in studies, so it is possible, though rare, that you could be contacted to participate in a study based on your name being in the state or hospital cancer registry.
Looking forward to future workshops,
Thank you!!
Shelia
Thanks for the great and informative workshop. We are lucky to live so close. The information provided was very helpful. Some things such as the Vitamin D testing and secondary cancers were new to us.
It was nice to meet you and others that attended.
Dan and Tracy
I echo the fact that we live so far away (Alaska), and wish I could attend such informational meetings. I’m learning the hard way (my husband has CLL/SLL) about all the secondary problems we have to watch out for. It’s been a rough year learning how to be careful about infections, pulmonary and others. I so appreciate your website, and thank you for all this great knowledge, earned the hard way.
Best to you,
Debra
Best to have been there for sure, but this report and comments seem like a good summary for those of us who could not attend.
But a question on UV sensitivity. All CLLers are more vulnerable than normal people or only those who have been hammered with the toxics they needed to take? For normal people there are seemingly credible reports that some sun exposure is better than none (about 20 minutes per day for large percent skin exposure) and is more effective than D3 supplements…a change from earlier recommendations and perhaps still not agreed to by most dermatologists who are focussed only on skin health. Consistent with the idea that moderation is ideal for most behaviors. My personal family physician buys into this some UV is good idea.
I have a friend who is going through chemo for a lymphoma. His Vit D levels were barely detectable they were so low when he was first diagnosed. Incidently, he work is with computers in dark rooms all the time.He was told that 80% of patients with all types of cancer are found to be very deficient in Vit D. So maybe us CLLers need suppliments AND 20 mins a day ‘real’ sun as well?
Hope to be at your next get together Chaya.
I was wondering tho…….what cost is it to you for the rental of the facilities? I don’t think it unreasonable for those of us that plan on attending to bear some of the cost. We hopefully all donate to ‘our’ cause through your cll topics update but I know expenses must run high for you to work for us.
glad so many appreciate how much you do for us…..hope to see you soon. (having ‘another’ mohs surgery, this time on my scalp – this will be the 5th one from my neck up:-( so talking about the secondary cancers and sun exposeure is so very important!!
Darlene
Dear Chaya,
Congratulations on your inaugural East Coast conference!
For conferences in the future, kindly consider a free conference call – telephone seminar – that would facilitate discussion with people from all over.
For your earnest consideration —.
Thank you!
Sally
Dear Chaya,
Many thanks for the great work you, your daughter and son-in law did on this Workshop! Informative, necessary, helpful, beneficial and “alive”!
If it’s possible – keep workshops going! and if you need help – just ask.
Thanks again,
Greg
June 21st, 2010 at 9:27 am
Dear Chaya,
Attending on the 19th was both a honor and pleasure to meet You and everyone else. I found the first workshop to be full of practical and easy to understand information. The atmosphere was relaxed and the presentation was simplified further by Chaya’s amazing ability to cut straight to the facts. Being in the company of others with varying experiences was to me a bounty of valuable information and to be able to share that was fantastic.
Thanks again
Bo
It was a pleasure meeting everyone, and thanks to your whole family.
On the Vitamin D, I’ve been studying it for a lot of years especially with my breast cancer diagnosis 14 years ago. When I first had it tested, my numbers were very low, and I’ve been supplementing since with low dose 1000 IU. Your advice for everyone to be tested is the way to go and to get retested too. Medicine now jumps on these megadoses of vitamin D if results are low. That to me involves extra study for CLL patients to megadose because there is a Dr. Marshall who feels that autoimmune disease is made worse by high vitamin D if the vitamin d receptors aren’t working. You find that out by testing both 125 D and 25 HD. The last time I had my d tested I asked for both tests. Cll can bring about auto immune problems so this is a major situation for us. To use myself as an example, with steady low dose D my numbers were 80 and I thought Oh no maybe my receptors weren’t working so I cut back on D and had both tested 6 months later. Both my results were around 52 so I felt that my receptors might be working just fine at this point. My inflammation markers were starting to climb though another thing to consider with CLL to test C reactive protein for inflammation and sed rate. Vitamin D being more a hormone than vitamin s actually affects so many body processes. Just like the cholesterol band wagon when medicine jumps in they go off the deep end sometimes. Just my two cents. Marilyn
P.S. One would have to nudge to get both tested. They might balk. But it is just a blood test.
Here are two leftover questions comments of mine?
1. A question I had is where are people getting the green tea extract. Can it be gotten where the clinical trial people got theirs? How much are people taking?
2.Here’s where I am having a problem with bucket one where I probably am. Could change any minute right?
Medicine is more than willing to have an acceptable risk of brain encelphalopathy and certain death as a drug side effect, but comes down so hard on possible non toxic treatments. Since a lot of chemo drugs came from research on plants to begin with, it seems to be there must be some fairly non toxic plants that have possibility. I know magnolia for one has helped my counts. I consult with one plant expert, and I know that there is a fine line between proven and unproven therapies, but I have a history of medicine willing to take risks for me, I’m not willing to take with drug side effects. That seems to put me in a precarious position. Scares the hell out of me really. (I would frankly not be writing this had I listened to medicine 14 years ago. I’d be dead.) TO me this is caught between a rock and a hard place! I understand the concept of acceptable risk, but as you say we all need to make our own decisions as to what is acceptable or not. I am certainly not pushing any agenda or anything like that. I’m just trying to come to terms with this diagnosis and where I’m headed and it’s just frightening for someone like me that has been part of medicine myself, but has trust issues with lots of things based on my own experiences and a whole slew of other BC survivors Marilyn.
Thanks everyone – for attending the workshop and for sharing your thoughts online.
We pride ourselves on being a totally volunteer driven organization. If you want to bring some goodies to the next workshop, feel free. Just let us know ahead of time. If you want to support us financially, that too is welcome, just hit that “Donate” button. I do not believe in hounding people for donations – feels too much like the guilt trips that PBS pulls in their all too frequent fund-raising campaigns.
I will see if we can go more high-tech with our workshops, but I cannot promise it will happen. Let’s see how it shakes out. As I said before, I am willing to consider workshops in other locations provided you guys are willing to come together as groups and take over all the arrangements. The best I can handle are future workshops in my own neck of the woods. I am also willing to meet with our members on a one-on-one basis, write to me ahead of time to set up a meeting.
To answer a few of the questions raised above: clonal evolution is more likely in patients who have been treated with immunosuppressive therapies. But it is important to remember that some of the more high risk category of CLL patients have an unstable genome that is likely to gather additional chromosomal abnormalities over time, even if the patient is chemo naive. That is why it is good practice to get a FISH test done just prior to start of therapy so you have a good idea what you are trying to take down.
It is very easy to get really scared of chemotherapy adverse effects. And sometimes it is justified to think twice before making therapy decisions. But the other side of the spectrum is equally dangerous. I do not know of one single “herbal” treatment that can cure or even control high risk CLL. True, smoldering CLL folks have the luxury of trying all sorts of stuff touted on the internet and provided they are not doing anything too dangerous, their CLL will stay well behaved – as it would have even without the “herbal intervention”. Even the green tea extract EGCG study at Mayo (which was funded and sponsored by CLL Topics, backed by patient donations!) helps at best to control the progression of the disease in patients without the really high risk prognostic profiles.
We also wrote about magnolia bark extract magnalol on http://www.clltopics.org because it sounded interesting. I am sorry to report nothing has come of the original research reported by the Harvard scientists. There are plenty of seemingly good ideas out there that do not pan out in the long run. The real trick is not to get hung up on concepts that do not meet the test of rigorous clinical study. You really do not want to bet the farm on superficial information.
One of the issues we discussed at the workshop is the difference between anecdotal information and statistically valid clinical information. If you toss a coin and twice or three times in a row you get heads, that does not mean every coin tossed in future will come up heads. In fact, your commonsense would tell you that if you toss the coin sufficient number of times it will come up heads roughly half the time. Unless the coin has been tampered with.
I have known any number of patients who got burned by taking very early stage and very small number of patient responses more seriously than they should have. Don’t get me wrong, early good results surely beat a kick in the head. But the smart thing to do is to wait until we get a bit more data that gives some statistical gravitas to the information. It is easy to get too invested in “cool” science – and most of us are guilty of falling for interesting “buzz” at the expense of downplaying lack of statistical significance. Please read my earlier article on the subject of prochymal cells. Reasonably large scale phase-2 studies suggested it might be a breakthrough in controlling GVHD and I waxed eloquent on the subject. A very few days after I gushed about it, the phase-3 trial results were reported. Sorry, flash in the pan, one more miracle of the month bit the dust. I wrote immediately, apologizing for my prior article.
Once in a while I am surprised in a good way. I was not an early fan of FCR. I thought it was too aggressive for treating CLL. I was wrong. In trial after trial, FCR has shown its value in the list of therapy options we have. It is not without risk, it is not easy to go through 6 cycles of this protocol and it is not for everyone. But for those who need it, be glad we have it. Median life expectancy of CLL is increasing year by year because we have better therapies, better ways of monitoring patients and taking care of secondary infections etc. Don’t short change yourself by letting the confusion and fear take over. And don’t buy snake oil sold by charlatans looking to make a buck on account of your vulnerability.
Thank you for sharing Chaya! I live about 6 hours away and it is nice to be able to see what you discussed on here vs driving down..though in the future, I would love to attend in person.
The drug reps and lab researchers I have met – I find not pushy – and it gives me a chance to thank them for saving my life some day – so I would not mind meeting and chatting with them..but agree with you – we do not want to be at a sales pitch meeting!
I like your idea of having your local docs in attendance – esp if you can ask Dr. Weisner(sp?) from NIH – he’s wonderful – and optimistic – which we all need! It’s depressing to hear that our lives may/will be cut short by this cancer -I firmly believe we are part of the CURE right now – and the more we are heard – and the more we can learn the better! This is not an old man’s disease! I am 47 and do not plan to die from CLL – so am very grateful for all YOU do for us – and hope that within 4 years we are taking a low toxic drug to help keep this quiet – like diabetics take insulin and CML patients take Gleevac. Asking for a lot -but if we do not ASK – push – and be heard – who is going to work hard at finding us a cure – we cannot go quietly!
From what I hear lately – there are some very good drugs coming down the pipeline – we need to help push them along – have you watched the movie ‘extraordinary measures”? We need to be extraordinary – like you are Chaya! We are your troops Chaya – let us know what we can do to help!
Shannon – aka – “a patient from hell”!!
Chaya,
As several of the other repondents, I find your site invaluable.
It was quite interesting to read how you constantly remind “them” that the CLL-patient should be in charge of their own bodies and lives; too often it appears that “someone somewhere” purports to know what you think, need and want. So refreshing to see that one is not the only one to disagree with that kind of attitude.
The less is more when it comes to testing is also great; that way less damage is done; and things like node-biopsy can be rather damaging, not just superfluous but can leave nerve-damage and seriously interfere with “drainage”.
I am so grateful for all you doby bringing papers to ones attention and “predigesting” the and translating some of the jargon!
Thank you again and “stay well”, Mette
Dear Chaya
I would like to emphasise how important the things you highlighted in your presentation are – in particular necessary/unnecessary testing, being comfortable with the consultant and early/late treatment.
My husband was diagnosed in Spain and their favorite diagnostic is CT scans – I think my husband has had 5. When his WBC reached 100 the consultant wanted to start treatment, even though all his prognostics (Zap 70, Ivgh & B2M) are good, no lymph nodes > 1cm and he felt as good as he always has done. Dr recomended FCR – with a FISH test AFTER if he did not respond to treatment! We went for a second opinion – he also wanted to start treatment (after another CT scan!) as ‘organ failure will soon start to happen’. That was the end of the line for us. We are now back in the UK where we have had 2 meetings with a CLL expert. He says my husband is still approx 2 years from treatment, which will probably be FCR but with a FISH test BEFORE to confirm if this is the right approach – music to our ears.
I do not believe that without your website we would have had the knowledge, and courage, to take this step. We badly miss Spain but from now on, it’s a holiday home.
Thank you so much
Doff
This article is a good review of CLL. I may be approaching the end of W&W and am trying to put together an outline of all the things I should be asking my oncologist. As so many items appear in different articles, I fear I may overlook some of the important items I should be checking on, such as his (the oncologist’s) preferred treatment (FCR sounds very encouraging), his tests, and I’m sure there are more I should add to my list.
I certainly appreciate all of your effort in keeping CLL patients up to date on evolving treatments, but if you think offering an abbreviated outline of things to ask the oncologist would be of value to your readers, I would feel better prepared in my next visit to evaluate my situation and future action.
Thank you for your consideration,
Roger K.
Thank you for this article it was awesome. I would love to attend but I am 10 hrs away, maybe there could be one in Ga. one day. Thanks for all your hard work and research so that we will become wise patients.
Chaya, Thanks to you and your family. Thanks for the notes and graphics from your workshop. The feedback sounds great. I appreciated the way you summed up important issues in our fight and who to trust and on not being patients from hell, but being informed.
Linda
Chaya,
Thanks for this wonderful article and the wealth of information that you have provided. I would love to attend a workshop but the distance would make it difficult.
Thanks for all of your hard work and keeping us informed.
Karen
23th June
Thank you Chaya,Radha,Peter Fortman, for continue the awesome CLL topics in honour of P.C. Venkat.(1949-23th 2008).
Jorge & Ana
Dear Chaya,
First of all, thank you, Chaya, for your brilliant website.
As cancer patients, we can not, absolutely must not, cede our intelligence, our very beings, to discursive researchers.
We must keep exploring therapies ourselves.
About eight years ago, Drs. Singh and Lai (renowned wormwood researchers from the U. of Washington) conducted an unpublished study on the effects of 2 hours of low-intensity electric current on human lymphocytes and human leukemia cells. FINDINGS: After 24 hours, the concentration of leukemia cells exposed to the current was only 58% of the non-exposed leukemia cells. Thus, the study suggests that current can selectively inhibit the growth of leukemia cells and does not significantly affect normal cells. … But does this study mean that CLL will be cured by zapping? Absolutely not. But is it intriguing? Absolutely.
In a 1980 study, ozone, in a dose-dependent manner, selectively inhibited the growth of lung cancer cells, breast cancer cells, and uterine cancer cells. Exposure to ozone at 0.8 part per million inhibited cancer cell growth by more than 90% and normal cell growth less than 50%. … This research was done in my city. Did I hear about it? No. I only heard about it a couple of years ago … Does this study mean that ozone will cure CLL? Absolutely not. But, is it intriguing? Absolutely. We all know about the association between the toxin, benzene, and leukemia. There are some wonderful benzene and ozone studies. It will be interesting to see if ozone will some how be employed to clean up the oil spill in the Gulf.
Again, we have to keep studying, studying, and studying.
It is the only way we will triumph.
With a bouquet of thanks to Chaya,
Sally
Thank you Chaya, for the posting of the meeting I was disappointed we had to miss. I so looked forward to meeting you, your family and my fellow CLLers. We hope to make the next meeting in August. And we are all for donating toward the rental of a facility, good idea — as is the conference call idea.
I was wondering if anything came up at the meeting from recently diagnosed Stage 0 patients. Even though told (more times than I care to count) that I have a “good” cancer, there are moments of panic, especially the demons that come in the night, but at least now, after four full months, I don’t think about it 24/7.
However, although I am told I am asymptomatic, I still experience changes (nuances) and am concerned about them since none of my doctors pay them much mind — damp night tops that awaken me , dry mouth, hoarse voice, etc. I would like to hear from others in my stage, have a dialogue about their concerns, it might put our minds to rest, do away with the occasional panics. It’s taken me a while to write because I feel there are far more serious circumstances than mine. I probably take more vitamins than I should or need, eat primarily greens, am a semi-vegan (only fish and organic chicken or turkey), juice daily, have virtually no sugar or refined products, exercise almost daily — sometimes think I should just throw it all to the winds and have a buttery croissant or chocolate bar.
Looking forward to hearing from others.
P.S. The suggestion of a list of questions to ask our doctors is excellent, I write things down but somehow get flustered and don’t get it all out there.
Dear Chaya,
My husband has CLL. Thank you for the time and dedication you put forth in maintaining this website. Having this disease can make one feel very alone. Having an advocate who presents information regarding this disease is most reassuring and helpful in seeing a clearer picture of the illness when fear and concern, at times, can render you numb and confused. I am looking forward to continued reading of the workshops and hearing from others with CLL and their caregivers.
My wife and were very pleased to attend the June 19 Workshop.
Chaya is just as professional and informative in person as via the CLL Topics website – hard to inagine anyone doing it better.
Our thanks to Chaya, Radha, and Peter.
My only regret is that I did not take advantage of the opportunity to talk to other patents attending the Workshop.
To onlyme,
Go have the croissant AND the chocolate bar. It is certainly a good idea to keep as healthy as one can when living with the W&W period, but that would be a good idea even if you were not sick. What is important is to LIVE, stay focused about your disease, and maintain a positive attitude. I am in Stage 0, have been so since 2007 when I was first diagnosed. I’m 63 years old. If you want to chat, I would be glad to share my experiences so far with you.
Chaya,
A very informative article as usual. Education and awareness is truly the armor that we CLL patients must wear in order to protect ourselves from bogus claims. Again Thank you and God Bless You.
Thanks Chaya for all that you do for us.You are literally a lifesaver! Off topic –
Dr. Hamblin is having surgery today. Please keep him in your thoughts.
Chaya,
I wish I lived closer. Thanks for sharing your presentation on line. It is excellent. You truly do so much for us and are a great educator and advocate.
Chris R.
Pradickes~
If you are in position to do so, please let Dr. Hamblin know that- for reasons both selfish and unselfish- we who are so in his debt wish him the best result possible. May he live long and in good health.
To Pradickes –
I am new to the community but I do know how important Dr Hamblin has been to our battle. “qb” put it well – “we who are so in his debt wish him the best result possible.” (Thank you “qb”)
Suggestions for future workshops below:
The workshop was enlightening and beautifully presented for a first endeavor, including the slides, the content and the dynamic presentation of our President and Warrior Diva Chaya (a name not meant to be impudent but warmly heartfelt as a huge compliment to Chaya’s fierce determination). Chaya is a global force to be reckoned with.
The generous and active participation, by many articulate patients, contributed to a very informative day.
Thank you, Chaya, Radha and Peter for continuing your involvement with such passion and defiance.
I am new to the efforts and have felt quite isolated since my diagnosis in March 2010. The presence of other patients and the knowledge of their journeys, shared with great openness and a desire to bring their experiences to others, helped me to get a grip and snap out of it.
Suggestions for future Workshops:
• Anonymity is valued but I would have gotten more out of each patient’s comments if I knew two things: deletion and mutational status. Some offered this information openly and it helped me to assess the information they were sharing.
• Would this be too invasive on someone’s privacy to acknowledge their status before standing and commenting in a workshop of this nature?
• Would participants be willing to wear a tag at the workshop – no name – just deletion and mutational status – color coded – so we could find each other? It seemed to be the question of the day when we spoke to other patients. This and where are you being treated, with what and by whom.
• Knowing if someone is in a clinical trial and sharing these experiences, may also be helpful to a new patient. Maybe a time could be set aside to discuss the actual participation of patients who are in clinical trials and attending the workshop. Would other find this helpful?
One more thing – I was astonished at how well all of the patients looked. This was quite heartening and really inspiring.
Chaya, you give graciousness and dignity to this battle. Thank you for this forum to rant and rave against the night.
To Marilyn HL,
Good comments on Vitamin D, thank you.
I wanted to mention if you get a C Reactive Protein done please make sure it is a Cardio CRP. This is the sensitive marker of inflammation. It is mentioned in European scientific literature but – to my knowledge – it is not highly regarded here in the USA as an important marker. I don’t know why. Most Doctors balk and say it is just an expensive SED rate.
It has been the canary in the coal mine in my CLL diagnosis. I observed the unexplainable rise in my test results over the last few years. It has been as high as 13 and down to 6. It is now rising again with my WBC.
If you are familiar with Dr. David Servan-Schreiber’s story and book, he refers to a Glasgow study touting the importance of Cardio C Reactive Protein levels.
Chaya – at the workshop – mentioned the theory of microtumors present in all of our bodies which are fueled by inflammation. Dr Servan Schreiber’s book discusses this theory. His own medical history is intriguing and worth the time to read to understand his interests. (Chaya – please correct me if I misunderstood your reference to microtumors – thank you.)
http://www.anticancerbook.com/
(see Chapter 4 – Notes 33 – 36 in 3 journals – Integrative Cancer Therapies (2002), British Journal of Cancer (2004, 2006)
Dear Chaya,
I appreciated your prompt reply the other day. I understand what you are saying completely, and I greatly empathize with the bucket B and C patients and what their choices have to be. But that leaves us Bucket A people with a diagnosis with no cure, chance for advancement, and medicine can do absolutely nothing for us. (And as another patient pointed out a bunch of frightening symptoms and changes) I have the same ones she is talking about and more. I firmly believe that here is where integrative medicine can make a big difference. I fully know being in Cancerland 14 years that this branch of medicine can take people’s money with little benefit. But I also know of many women with breast cancer (BC) who outlived their prognosis by years and years with appropriate and balanced integrative medicine.
The fear part that I have stems from my own experiences and countless others, but also from studying endlessly these 14 years. There is one positive to the fear part and that it is highly motivating. It motivates to adapt a wellness program of diet and exercise, and supplements which I firmly believe should be guided by a physician. I have medical training (RN) but I have always been guided by a doctor that knows more than I do about wellness. And someone that knows plants.
Now the plant issue. The pharmaceutical industry has no interest in a natural product that can’t bring in big dollars for them. In fact what turned me into a writer for integrative medicine was an article I read in 2002 which was entitled “Cancer Opportunities for the Millennium.” I wanted to throw up. Then when I was diagnosed with CLL and put in google alerts much of the alerts involved the money that was going to be made in the CLL field.
A lot of money that even NCI had for alt med was just squandered. And a lot of studies duplicated. But the problem with double blind studies in alt med or integrative medicine is everything works synergistically. You can’t separate out the parts in double blind studies. There is also bias on doing these studies. For example, I am reminded of the beta carotene study in smokers where they gave synthetic beta carotene and the people kept on puffing and they said that beta carotene caused lung cancer etc.
I am also reminded of them pumping hormones into women for 30 plus years on pharmaceutical’s own anecdotal studies. When they did the right ones they found out that there was a risk of BC and heart disease and stroke. Big Pharm does studies to suit themselves sometimes. This is why I have trust issues.
So after all that where does it leave us with bucket A? All of us are indebted with the green tea study your foundation funded. That’s a really big thing.
Right now my doctor has me on a supplement program to try and stabilize any more breakage in the telomers of my DNA. It seems to me that preventing DNA and RNA hits are important for all the buckets of CLL. I could go on an on about this because it’s the same as any cancer prevention. (Diet exercise, supplements chosen by doctor, pure water, and watching for the toxic exposures like radiation, benzene pesticides etc.) Frankly, everyone with CLL is like a canary in a coal mine. It’s the tip of the iceberg with the number of cancers growing and growing. All of the buckets can gain from severe life changes. I know they saved my life before. For Bucket A that’s all we have. The first thing out of my mouth after the BC diagnosis was what is causing this massive rise in BC? The oncologist said don’t worry about it. That was not acceptable. CLL open’s another Pandora’s box of worry for the sake of my children and grandchildren.
I do apologize for going on and on, but I’m not just a bucket of fear, but a bucket of questions trying to figure all of this out. You have been a big help and I thank you so much. I would have had to spend countless hours in a hospital library and you have it all right here.
Blessings to you. Marilyn
I love that Jasper is the receptionist….;) made my day!
Annette D.
Dear Chaya,
I would like to join Roger K. in asking for some help in putting order in our thoughts . My husband, 66, is approaching the end of W&W and we are trying to put together an outline of all the things we should be asking his oncologist. I read over and over all your articles for the last 4 years, but there are so many items, that I fear I may overlook some of the important items I should be checking on. I started to make a list though.His oncologist thinks it will be 6 cycles of FCR but he sent him to do FISH again before starting treatment. Gideon’s prognosis is not very good – very bulky , splenomegally, ZAP70+56%, CD38+56%, WBC 130,000, PLT 94, weakness and fatigue and SCC. But he would like to know about the side effects and what he should expect and I have to know whether I will be able to work or do I have to quit my job.In short, to evaluate future actions.
So we need desperately an outline of things to ask the oncologist.
We would like to be prepared to our next visit .
Thanks to your articles my husband’s oncologist thinks I am in the medical field and treats us with “respect”.
With huge gratitude
Annette D.
Annette, Roger et al:
Here is my problem in doing what you are asking me to do. Each CLL patient is different, with different health profiles and different needs that they should discuss with their doctors. In trying to be helpful I do not want to make the mistake of generalizing too much and thereby cause harm.
I provide you the information you need to know, in as simple terms as I can manage – without dumbing it down to the point of uselessness. It is then your job to sift through the information and collate what is useful and relevant to your situation. There is no way I can figure out what is relevant to each of you and what you need to discuss with your doctor – not in a generalized one list fits all format.
That is why I think my one-on-one meetings with patients are so helpful, since it allows me to focus on the needs of the individual patient. Email and phone consultations work as well and for those of you who are in my neck of the woods I am willing to meet you face to face if you make an appointment ahead of time.
I do spend 5-6 months of the year in India (taking care of my elderly mother) and during those times the only way to contact me is through emails. This year I will be heading back to India in the middle of September. You should not see any interruption in Updates service since I have broadband access to the net at my mother’s home as well.
Chaya:
Thank you for conducting this workshop. As usual, crystal clear focused thinking in presenting the issues at hand. I am too far to participate in MD, but appreciate the sumamry and commments.
I was moved to tears about the Patient From Hell. Human relations are fragile and need nurturing. You, Chaya are part of our treatment as well, and although you don’t even know most of us, you have a role and have involvement in our treatments via tracking of what works and what doesn’t, and doing the thinking we can’t do for ourselves. Most of us are not chemists or bioligists or doctors, so we can’t make as much progress by ourselves. Thank you for being here for all of us–none of us could ever, ever do what you do for any of ourselves or spouses or relatives.
But back to Patients and doctors and caregivers: we need to take responsibiity for being a positive part of the treatment. There is an infinite number of things we can do, and it starts with treating yourself with kindness and respect. Be kind, be careful, make yourself heard to the best of your ability. The very next thing is to be kind and respectful to your doctors and caregivers. Even if they are not up to par. Make changes, but treat them with kindness and respect. I have a great deal of compassion for doctors, although know many of them would not make my cut (Marilyn, I’m with you!)
I am a family member to a CLL patient. I found your website shortly after my brother was diagnosed. I like him had no idea what he was facing until we both read your pamplet “Newly Diagnosed”. He is in stage 1 and is in the wait and watch stage. I have gained so much strength from you and your family.Terry (my brother) has a great outlook on his future. I want to send all your followers my prayers. All these tests and results are making his head spin. But with the resources you have given to us has helped him beyond my wildest dreams. All I can say to you is your the angels we have been praying for. Good things I pray will come your way,for all the good things you are providing so many people. Again THANK YOU.
Becky Anderson
Indpls. In.
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