“The Missing Voice of Patients” in Drug Safety Reporting
That is the title of an important paper published in the New England Journal of Medicine just last week. You can read the full text article at your leisure, for free, by clicking on the link.
Each and every one of us who had to make therapy choices has agonized over adverse effect listed in clinical trial reports, worrying over the toxicity profiles and hoping that some how we will be among the lucky ones. That somehow we will be in the top of the class when it comes to response and remission, but the nasty stuff of adverse effects will pass us by with merely a nod and a wink.
Who collects the data on adverse effects? Who gets to say whether the fatigue was just garden variety tiredness that only a wimp would complain about or really mind-numbing nightmare that makes it hard just getting out of bed?
Pain and suffering are hard things to measure. We each of us experience the world through our own eyes. Each of us registers pain through our own nerves, in our own bodies. Your bruised big toe is a lot more painful to you than someone else’s fractured leg. All the same, I assumed some effortis made to collect adverse effect data based on what patients described, that there was some semblance of authenticity to the reported data. I was naïve. I was wrong.
Watching Pain, Dispassionately
Here is how it is done. I must warn you, reading this review is going to be a little bit like watching sausages being made. Someone told me that once you watch the process you will never be able to eat sausages again – your innocence is gone forever. What do I know – I am a life long vegetarian. I never ate sausages anyway.
- “Adverse effect information, largely collected during clinical trials, is based almost entirely on clinicians’ impressions of patients’ symptoms – not on patients’ own firsthand reports of their experiences with the drug”
- The assumption is that it is safe to trust physicians report the subjective experience of their patients without bias.
- Yet, as this paper points out, there is substantial evidence to disprove this assumption. Physicians systematically and consistently down-grade the severity of symptoms experienced by their patients.
- It has been shown that patients’ self reports frequently list symptoms and adverse effects that physicians’ reports fail to capture at all, which means these adverse effects are not addressed at all in future generations of patients.
The Art of Listening
Call me a nostalgic romantic, but I am convinced there used to be a time not so long ago when physicians and patients had a much closer and more trusted relationship. We were not too intimidated to talk, and they took the time to listen, really hear what we were saying.
MSKK (Memorial Sloan-Kettering Cancer Center, New York) did an interesting study. 467 patients with breast, lung, urinary or gynecologic cancers were asked to report their symptoms at each clinic visit. The physicians and nurses treating these same patients were also asked to list adverse effects in the usual manner. Below is how some very common adverse effects were rated by the patients and their physicians. The gold curves are patient reports and the blue curves are physicians’ reports.
I was blown away by how consistently the gold (patient) curves soared over the blue (physician) reports. Just for example, physicians reported a mere 5% of the patients experienced appetite loss 25 months from the start of the study. A whopping 35% of the patients reported the same adverse effect. The same trend is observed in each of the categories.
It is clear that physicians’ reports are not capturing all the adverse effects experienced by patients. Patient generated adverse effects reports might have resulted in earlier detection of some highly publicized scandals, such as suicidal tendencies related to some antidepressants in younger patients. So, why is this not standard practice, get cancer patients undergoing therapy to fill out adverse effect questionnaire each time they visit the clinic? You would think this is a pretty logical thing to do.
There have been numerous objections to adopting a patient-focused approach to safety monitoring. Opponents have trotted out “regulatory constraints”, “confidentiality issues”, “feasibility concerns” “increased administrative costs” and lack of properly constructed “questionnaires”. What a bogus list of complaints! Each and every one of these road blocks can be overcome, if only there was a real desire to hear what patients have to say.
Is there anything we can do to change this status-quo? I do not know. We need to brainstorm together as a community, get some consensus on how we feel about it, how strongly we feel about getting our first-person feedback heard when adverse profiles are being compiled. I want each of you to think about what you are willing to do, your individual contribution to the greater good of this patient community. Our ability to influence things is only as great as our determination to be a determined and cohesive group, each of us working to provide grassroots support for the advocacy efforts that our community takes on as a whole.
On A Personal Note…
I am struggling with the stressful job of packing. The date is set. I will be leaving my home in sunny Sedona (Arizona) and moving to Columbia (Maryland) in the first week of May. As I sort through papers and stuff, deciding what to keep and what to discard, I am going through a kind of emotional archaeological dig – debris from more than a couple of decades of my life with my husband PC. Some of the memories bring a smile to my face, some are downright painful. So it goes. But it is time for me to move on; downsize, minimize and simplify my life. And be closer to my daughter and son-in-law.
One of the advantages of living on the East Coast is that I will be in the thick of things, a mere stone’s throw (more or less) from the NIH and its impressive library etc. As soon as I am settled in my new home I will be volunteering to put up CLL patients visiting the NIH and needing a place to stay for a day or two.
I also plan to have monthly CLL meetings for patients who live in this general area. Over time, as we gather momentum, it will be fun to invite some of the East Coast CLL experts as guest speakers.
Living in Columbia, MD will also give me a chance to see more of you on a one-on-one basis. Sedona is a vacation destination and I have met some of you over the years while you were here on holidays. Now I can make myself available for personal meetings with more of you – those of you who want to.
The world being what it is today, my daughter worries about my security and insists that we retain full rights to control and limit participation in either the monthly meetings or individual consultations. At the very least, participants will be limited to our long term members / donors. That protects all the participants, none of us want snake-oil scammers or drug company reps crashing our meetings. I will publish all the details a little later.
Wish me luck in my new home to be.
68 comments on "Physicians: Please Walk A Mile In Our Shoes"
Reading that you are moving east has put a HUGE smile on my face. You will do much good in the teaching hospitals in the northeast corridor.
I so admire your endless spirit, courage and dedication. The East welcomes you with open arms. I would love to make the trek from Connecticut to one of those meetings.
Bob Larkin
Another wonderful article, Chaya. Thank you for bringing it to our attention. I will look over Tom’s charts and comments and see what the curves are.
Good luck on your move to the East. I feel it is a good move for you. Can’t wait to hear about it!
Jenny Lou
May you have a safe journey and a sound landing.
Anne Haehl
Good luck as you embark upon a new phase in your life. Thank you agai for all the good information. Mumsie in Florida
Best wishes for a smooth transition to this next phase of your life. I am in the NIH “Natural History” clinical trial and would hope to get in a visit with you sometime when I come out to NIH.
Mari Golub
Thanks for all the kind words of encouragement, from the bottom of my heart.
But what did you guys think about the NEJM article on biased reporting of adverse effects? Any one has bright ideas about anything we can do about it?
I hope your move to Maryland will be smooth and hassle free. Please accept my warmest wishes for a wonderful new life there.
Thank you again for all the wonderful things you do for us, your unselfish dedication is truly appreciated.
Chaya,
Good luck on your move. We did it twice in two years. Throwing out stuff attached to your past, both happy and sad, is in the long run good for the soul. I think your new residence will be a great plus for all of us who treasure your work and views.
Barry
Hi Chaya,
Regarding your article on the NEJM article, and the ‘full text’ link:
Quite the read. It’s kind of like going to a doctor with all your notes and questions in hand, that may, but probably won’t all get answered or clarified. Then you read a print out of the doctor’s notes and you go, ‘Huh’. You may think you’d been mixed up with someone else? Were you even heard? But don’t sweat it, after all you’ll go back in a few months and maybe then you can get clarification then. Hey, there is always the drug insert to read if you have questions, right?!
Maybe patients should take a tape (oops, digital) recorder and record doctor visits for later review. Like with sports, an instant replay for clarification.
Chaya, as for moving closer to your daughter – I am happy for you. I look forward to reading your future articles, and hope to learn more about NIH’s approach to CLL and all the things you share. You will always be as close as CLL Updates. This sounds like a wonderful opportunity for you. Blessings. maka
ps: I did not begin the trial (maybe more on that later).
Thank you, maka,you expressed my appointment experience exactly. Apparently there was no need to even record my concern about a symptom steadily increasing over the past year. But I imagine I am not the only patient to worry about creating an adversary of someone on whom you must rely.
I am sorry to say I have no clue what can be done about this.
Chaya,
Thank you again for the breath of fresh reality. Trying to get a hold of this whole CLL thing is like trying to hold warm jello in ones bare hands. I have learned so much from you and this website. It’s down right scary to think about what my life would be like at this point if all I had to hang onto is what I have been told by my physicians. I’m not surprised by those graphs. Especially the one about fatigue levels. Have you heard much about pain and CLL? The fibromyalgia pain level has really increased since my diagnosis of CLL. Do you know if there is a relation? I’ve handeled the fibro pain with self hypnosis and cymbalta these last few years. But, that’s just not doing the trick these days. (I haven’t started the chemo. yet.)
Thanks again, Chaya. May God continue to bless you in all that you do.
Becky J.
As for the suggestions, I had this to add. If patients kept an online journal that they shared with other patients they would gather courage from each other to be more firm about the doctor taking their experiences seriously. Additionally if they printed a copy or shared a written report with their doctor and asked for it to be filed with their report. The doctor would find it hard to refute a written document of symptoms. I don’t know how feasible that is. But then we’ve go by so many things that weren’t feasible at first, haven’t we?
Chaya, thanks for another interesting article. It seems that this points out a very interesting problem, but solving this requires the cooperation of the doctors and their office staff, to be able to collect the data from both the doctor and the patient on each encounter, voluntarily.
I doubt the patients by themselves, can solve this problem.
Glad to hear that you have finalized your plans to move back to the East coast. You will surely miss Sedona, where you and PC had dreamed of spending your retired lives together.
At least you will be near your daughter and son in law, as you transition into the next phase of your life.
Best of luck as you move on in your new life. God bless you.
Avijit
Chaya,
I hope this move will bring you joy, comfort, and the companionship of family. It sounds like a good decision and a positive move. And, true to form, you are already planning ways to make it constructive and productive, and to continue your very special mix of patient support (in both senses of the word “patient”) and challenge to the medical and research community to improve the science and humanity of their work.
More power to you…and us!
Chaya,
I have yet to read the full article so will adjust my thinking once I do, but my initial response has to do with how we report things in a survey vs. how we report to medical personnel. (And this may be a very limited personal perspective.) When you are diagnosed with cancer, people start in with the battle metaphors. We “battle” cancer, are “fighters”, etc. Winning is the only acceptable outcome. After all, as one friend told me, Lance Armstrong was only given a 5% chance of “beating” cancer. So when we go to doctors, we are the cancer warriors, newly drafted with a draft card you can’t burn and no deferments. When asked how we feel, we have just been through a waiting room where there are people who make you glad you can walk into that office, never mind the deadening exhaustion you feel. When asked how you are doing, like a good cancer soldier, you say fine and underplay the reactions. To be fair to the doctor, even if you don’t s/he has just seen others much worse off. This has to have a numbing effect. Possibly patients underplay their symptoms in attempts to be brave and doctors measure them compared to others in various states of decline.
We need ways to help doctors see us “fresh” and as individuals. We need to eschew the war metaphors. It is bad enough to have cancer but if the path heads inevitably to death, why do we need to feel like losers along the way? This is in no way giving up but neither is it a video game scenario. I prefer to see my body as an organism with cells that are doing their job well and some that have morphed into a negative form. I work to keep the healthy cells in the majority by doing all I can to feed them and not feed the unhealthy ones, e.g., vegetarian diet, exercise, sleep, meditation, etc. This won’t do the job in and of itself but at least I feel some sense of control and do the best I can to nurture the positive. And then I walk through that waiting room or get that infusion and feel grateful to have one of my daughters or my husband with me when others are all alone. I also underplay my symptoms sometimes because i don’t want my family to hear me complain. It is a crazy set of behaviors but there it is.
When I first went to Dana Farber and then Sloan Kettering for a second opinion (due diligence), I was appalled at the “cancer industry” and I by no means intend to cast aspersions on the dedicated healthcare professionals but I know pharmaceuticals, among others, make good money off this scourge. Cancer is a big piece of our GDP. As time goes on, I see the suffering less. I deny it as self-protection even though I promised myself I would remain alert to the suffering of others and not lose my compassion despite my own situation. This is a challenge.
I know these are rather circuitous thoughts but so is the cancer journey as you know better than I in many ways. I feel lucky that my kids are capable adults; I feel despondent that I may not see my grandchildren grow up. I am fortunate that I still work; I am exhausted and don’t know how long I can keep it up and can’t afford not to. And on it goes for all of us.
I am so pleased for you that you will be closer to your family and do hope to meet you one day. Warmest wishes as you sort through a rich life of happy and difficult memories. Your husband would be so proud of all you do and we are all so grateful.
Judith
Judith:
I too have often wondered about the “war” metaphor that colors so much of life with cancer. It would not be my first choice of a metaphor. Like you, I too think it is counter-productive in many situations.
“War” metaphor immediately legitimizes other concepts such as take-no-prisoners attitude towards therapy choices. I wish I had a dollar for every newly diagnosed type-A personality CLL patient that I had to gradually wean away from the concept of bringing out the biggest and baddest guns to kill the CLL dead, ASAP.
I think some of this has to do with our cultural backgrounds. Most people in Western cultures see death as a failure. Patients (and their doctors) are portrayed as having lost the battle when death occurs. I for one hate this concept, because it guarantees that each and every one of us is eventually a loser. There is a time and place for everything under the sun – including death. That is why I am very careful to have my wishes and instructions clearly spelled out in an advance health care directive and grant my daughter my medical power of attorney – so that she can make decisions for me if I become incapacitated.
This is not a fun subject to discuss, but perhaps not irrelevant to most of us old codgers, especially in the context of being CLL patients. How many of you have advance health directives? If not, why not? I have seen too much of the inexorable and rather mindless way “the system” grinds on to leave these important issues to be decided by a bureaucratic hospital committee. I would like to set limits myself as to what can be done and what I do not want to be done as I approach the end of my life. Control freak right to the end, that’s me.
I am also quite unsurprised by this report. Part of the story may be a desire by practitioners to feel that what they do is useful. My understanding is that this report is not specific to CLL. According to recent reports at this site, standard treatment for CLL has demonstrated at least some ability to extend life significantly, even if there are high risks and side effects. But it seems that this is not true generally when it comes to chemo for most cancers. Reports and books by Ralph Moss make it clear that from a patient point of view standard procedure is a poor choice much of the time. That is the degradation in quality of life is not worth what is, in truth, is a very short extension. So, under estimating the down side of treatments tends to justify them.
My question for this particular group is: it worth fighting to change the practitioner reporting scale? For the whole community of cancer patients I think the answer is yes…it would lead to better decisions by patients. For CLL, if the issue is which treatment, old or new, rather than maybe refusing standard treatment, then maybe what is most important is is consistency in the reports of negative side effects.
For myself, I favor fighting for reporting that is more accurate from a patient point of view. That is because I tend to put more value on quality of life than length and want to know the real story of side effects. I, in fact, may be much slower than most CLL patients to start standard treatment.
Priti, A previous hema doc did my BMB, FISH, F.C., etc. As I was moving to another state with in months of these tests, I hand delivered all the results, with discs and slides to the new doctors. I was told these would be scanned into electronic records. Great.
Silly me, I believed this had been done and honestly thought those caring for me had this information in regard to my care. I made reference to some aspects of these labs during visits to try to understand things better, and for years no one said they did not have this information. It kind of felt like a brush-off, like I was asking unnecessary questions, or things I didn’t need to be concerned with, but I didn’t understand the real reason at that time. Funny, but one time when I brought this up, the new hema doc said he personally knew the hema doc whom I’m told him had done my tests. Great, again.
Then sadly, a couple years later, while reading through a pack of records I’d requested for another issue, I noticed that the hema doc notes stated that the patient had not had these tests done. When I inquired, it was brushed off as no big deal, it was overlooked, or human error. I was also told that often times these things might pile up on a doctor’s desk and s/he wouldn’t get around to adding them to the patient’s record. We’re human, mistakes are made. I understand that and brought in another set of copies for the doctor as well as his nurse.
Now I’m checking the records much more carefully. But sadly, this absurdity would go on for another couple years though again I believed this was being done. I’d take in copies of all these tests, then later read my records that the patient had not had these tests done. I’d call, inquire, ask questions. Wash, rinse repeat – do the whole process over and over again. I asked what the problem was and how this could be messed up so many times. Another doctor mentioned that electronic records were only as good as those entrusted to scan the information into them.
So finally, last year, I went to medical records. I asked to speak with the supervisor in charge. I showed her the half dozen or so pages of these important labs results and asked her if she would please check. Had, at any time, in the past half decade, any or all of this information EVER been scanned into my records. The answer was “NO”!
I asked her if she could scan the pages and put them in my records. She gave me a receipt showing that she had done this. Following a routine w&w visit a few months ago, the doc’s notes now mentioned how the results of all these tests were relevant to my CLL. No fat pockets = lab rat. No other options were offered for any treatments for my CLL.
(I am not in this study: Though they did have a need to repeat these labs last week as part of pre-trial stuff. I thought it odd that in the middle of the IVIG, BMB, too many labs to count, a CT, and and EKG over a couple days while completely fatigued, a ‘quick’ visit to their financial office was wedged in. I asked my physician’s nurse and the trial person what it was about, but was told ‘just routine for the study’.
Besides this being more stressful than all the medical issue combined, what I learned was that the only part of the trial that they would pay for was one of the drugs they were studying for the trial. Others drugs would not be covered, nor were all the tests I’d just had (but I could not get an answer to my direct questions until I’d signed the forms, AND, prior to the financial visit). Also, not covered were any medical conditions or problems that developed as a result of the trial drug dosage, short or long-term residual effects or problems, follow up labs or test, etc. So basically one needs to pay, a lot, to be a lab rat!
And Judith, YES, let’s work to get rid of the negative terminology. They candy coat war with words like ‘staging area’ (like its a play), to get ready for the theatre (ditto). Those surviving/living beings with cancer or other major medical issues are seemingly put at war with our very bodies, and basically labeled as failures for daring to get ill in the first place. It seems the wonder drugs claim to be helping to win the war (at all costs), while the ‘war on drugs’ is a loosing battle. Why don’t they call war by its rightful name, it’s WAR, and start caring for the patient – I mean really caring!
I’m sure you’re all up to date on the modern, deregulated version of the ‘hippocratic oath’.
The Hippocratic Oath: Modern Version
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.
A Modern Version of the Hippocratic Oath
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
The classical version of the Hippocratic Oath is from the translation from the Greek by Ludwig Edelstein. From The Hippocratic Oath: Text, Translation, and Interpretation, by Ludwig Edelstein. Baltimore: Johns Hopkins Press, 1943.
The modern version of the Hippocratic Oath was written in 1964 by Louis Lasagna, Dean of the School of Medicine at Tufts University.
Hippocratic Oath: One of the oldest binding documents in history, the Oath written by Hippocrates is still held sacred by physicians: to treat the ill to the best of one’s ability, to preserve a patient’s privacy, to teach the secrets of medicine to the next generation, and so on.
There are many versions of the Hippocratic Oath. We here present two versions. First, the “classic” version (or more precisely, one translation of the original oath). And then, following it, is presented one of the fine “modern” versions of the Hippocratic Oath.
Classic Version of the Hippocratic Oath
I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfil according to my ability and judgment this oath and this covenant:
To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art – if they desire to learn it – without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but no one else.
I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.
I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.
I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.
Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.
What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.
If I fulfil this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.
Strange how the ‘modern’ version leaves out the ‘best known prohibition’ in the original: “to do no harm”.
Just to wish you well for your move. It’s always a huge wrench to move and then there’s all the packing and unpacking – being an A type CLL sufferer I tend to view this as something getting in the road of getting on with life.
I’ve spent all my life mountaineering and playing rugby so am used to suffering pain. However, with ribs aching with fluid filled lungs when I had pneumonia, after my second course of chemo, was a bit hard to tolerate. Perhaps it was the geometric nightmares that accompanied the fever which made it hard to stand but I waited almost 24 hours before getting some pain killers so I could get to sleep. Perhaps to just to endorse your observation on what A type personalities should do when suffering CLL. View it as an endurance race – not a war – stay in the game because progress leads to better outcomes. It’s eight years since I was first diagnosed at about stage 3/4. I’m looking forward to a transplant the next time it comes back. When I was first diagnosed this treatment was not available in the UK for people under fifty. It now is and with good outcome prospects so stick in there Alphas
In the meantime I’ll have to oack and sell my house as my wife has left me so that’s another endurance race.
Best of luck and thanks hugely for your contribution to the CLL community.
Judith, you have expressed brilliantly almost everything that I was going to say.
I’ve been down the chemo road twice – horrible fatigue, neuropathy etc. But, on every appointment, I put on the make-up and high heels – despite feet that felt like lumps of wood and joked and chatted with my oncologist. To do otherwise, would seem to me to be a terrible moan. We have all learned that – “How are you” is a greeting, not a question.
I don’t think there is an obvious answer to this problem – how we feel is too subjective, and just too boring for a doctor to listen to endlessly. And what can be done about much of our discomforts anyway? Scans and blood tests are much easier to deal with. Time and again I have been told ‘this is how we proceed’ – very robotic, but what’s the alternative?
Chaya, lots of luck and everything good in your new life.
Mary Connell
I too am in the process of moving to the East coast (of the UK), 5 years at present house & i’ve collected so much junk along with memories from the last 30 plus years.
As i’m downsizing i’m being ruthless in what i keep.
Thanks once again for all info you provide us with.
First of all, Chaya, BIG THANKS for an excellent article as usual.
Secondly, Best wishes for the actual move, but don’t let the necessary trawling through the archives get you down. I know what it is like – I had to sort out my mother’s stuff after she died (age 89) followed by my own enforced house move the following year, and I think the stress may have exacerbated my then undiagnosed CLL. But one gets through it, so my main message is, don’t let it stress you!
And of course, I hope the actual move goes well. It will be good for you to be near family.
Thanks again, and take care of yourself
Lawrence
(Cornwall, UK)
Hello Chaya,
Firstly, the very best for your move; you will no doubt settle in well; you have already come through, it seems successfully, one of life’s most difficult events.
The article is most interesting; particularly as it highlights areas which seem to be perceived diamatrically opposite by patients and some practicioners. From experience I can confirm that a person/patient’s interpretation of what is acceptable or beneficial, is often quite different from what a “system” deems beneficial or necessary.
It would be a huge advantage if genuine patient experiences were recorded and accepted as valid contributions to practice development; just to accept that patients have a right to a say and are whole human beings, not just containers with some interesting “bits”, would be an advantage. After all, this is the patient’s WHOLE body and LIFE which is being “treated”/put at risk, not just the particular “bit” (nodes, blood-particles or whatever.
The “war” which has to be won/lost may be unwinnable; it might be possible to make the passage to the end more tolerable though. It must be possible to stear a middle path between treating the patient as either a soldier or a “sufferer” which aknowledges that the patient is a human being, neither a warrior nor a commosity.
maka, You make some very astute and fundamental observations; I do hope that someone on “the other side” of the fence, takes note; I wish you the very best.
As ever, be well, keep hope, and thanks again Chaya,
Mette
Chaya,
Best of luck with your move. Since no one can really every take everything with them from one move to the next I know you must be making some terribly difficult decisions regarding your possessions as they related to PC.
Having lived on the east coast all my life I believe you will really love it, especially the changing weather and crisp fall air every year. If you make your way up to New England please visit and stay at our guest house. You should have my email. I am about to embark on a new journey as well. This Tuesday I will be entering Brigham and Women’s for a mini allo transplant to cure both CLL and the more recent MDS. Thanks to you, I am going in as informed as I can be. CLL Topics is always the first place I go to answer my questions. I look forward to meeting you or hearing you speak in the future.
Marci C
I do think treatment needs to be quality over quantity every time. Pain is a subjective thing. I had three home births without pain relief. I saw it like running a marathon – you wouldn’t dream of taking pain killers to run a marathon, even though when the runners in the London marathon ran past my house, some of the over 60s competitors would be in great discomfort.Help with the emotional side of pain is vital, the Maggie Centre, anti stress cancer clinic was wonderful with no drugs at all. Every hospital should have one. Also acupressure sea sickness wrist bands work brilliantly for nausea without any side effects.Has anyone else found them useful?
Good luck with your ‘soul food’ move Chaya.
Molly
I’ve been fortunate to have Dr’s that listen and seem to take me personally. I’m also quite vocal! That’s due in large part because I’m well informed and ask (what I think) are good questions. I’m well informed because of your work and research. You always say we are our best advocate and I go into every consult with that in mind. I may not like what’s happening to me, but if I understand it and agree with the logic, then I’m all in.
Thanks for your time and caring.
Tim
P.S. Ron G. and his family in our thoughts today.
First, good luck with your move. You just missed the snowiest winter on record for your new home. Having family close by is a joy.
In addition to adverse drug reactions, other areas of medicine are prone to physician vs. patient reported differences. For example, cardiac care for women is being updated so that doctors heed more closely what the woman patient says. For years, women were mistakenly thought to have far fewer heart attacks than men because women would tell their doctors they were not having a lot of pain, while men would say the pain was terrible.
Chaya–Good luck on your move…yes! And I admire your continued attention to those of us who would have trouble locating and evaluating this information that we need so badly.
Eve
Validating article Chaya! I always request copies of my husbands MD notes, consultation notes, labs etc. When I finally decided to review my own medical records after cancer treatment, I found numerous errors of omission, especially symptoms I shared with the physician or nurse, inaccurate notes making me believe they confused me with another patient. With my husband’s records, we find frequent what some would consider “little” inaccuracies, like gender of his siblings, dates of hospitalization, antibiotic he was given prior to our visit and we do mention these inaccuracies and omissions at his next visit, yet the next set of records we obtain copies of state the same inaccuracies.
I wish you a safe and uneventful move “back east”. You are a woman of undeniable strength and courage Chaya. Both CLL’ers and caregivers are eternally grateful for your committment to our community, not to mention the support, encouragement, research and “pearls of wisdom” you so generously share with us all. Blessings
BEST WISHES TO YOU MARCI C! Please let us know how you are doing after your mini-allo transplant. Blessings, Eileen
All the best to you in your move to the East Coast…I hope to someday meet and thank you in person for your dedication and hard work on behalf of us all. I am blessed to be in NY and have Kanti Rai as my Dr. (diagnosed July 2006)…
Chaya,
I picked up on your last question regarding advance health directives. I’m 70 and have been in W & W for the past ten years w/o symptoms or treatment. I’ve been tweaking my health care directive to my family for the past two years, but it’s difficult because I don’t really know what to expect when/if I have to begin treatment. I would welcome a critique.
Best wishes for your upcoming move. I’ve moved over 17 times during my Navy career so I know what you are going through.
Bill
Good luck on your move Chaya. I keep all of you in my daily prayers.
My husband had a rapid downhill course from a just a year of watch and wait for CLL to chemo resistance, transfusion dependence and a sibling matched stem cell transplant as a no other option treatment. Post transplant there was the misery of GVHD and ascites lymphoma. We never qualified for a drug trial during this time. I would still have liked to have had his responses and outcomes measured and reported some how so that could be part of the body of knowledge about the disease and drugs used. He had one visit from a research team about quality of life and CLL( while at Univ. of Chicago). I would like to see drug companies having an instrument that measures patient’s experiences not filtered by what the physician thinks the patient is feeling.We loved our doctor but she never quite got how miserable he was compared to how he looked on labs.
Best wishes on the move, Chaya.
I have much to say about this but will try to keep my reply concise.
My father has been a practicing physician for some 40 years, working 7 days a week. Many of his patients are terminally ill. He lives the Hippocratic Oath every moment of the day. Before I entered grad school I asked him the single most important thing he could teach a new medical student. His answer, to be able to admit ‘I don’t know’ and refer to someone else.
Doctors have to take what is subjective and make it objective. This is no easy task. On top of that, the legal system here in the USA allows anyone to sue for anything.
Can our current medical system and drug safety reporting be improved? Absolutely. However, I am fine with the statement above that clinical trials are based on clinician’s impressions. We need to continue to improve these impressions so that they more accurately reflect the patient’s status.
When I go in for my 3-month onco visits, atleast 2-3 times PER visit, a secretary and/or nurse will say ‘So you’re here for chemo?’ or ‘Which chemo protocol did you receive today?’ It makes me want to scream at them and ask them if they know anything! I’m not getting chemo! This happens at a CLL specialty center. There are so many problems to work on; many of us need to slow down, watch and hear what is truly going on around us.
Chaya, WELCOME TO MARYLAND! It’s a wonderful state. You’ll be 3 hours from the Atlantic Ocean, one hour to beautiful corn and farm country, two hours from the mountains, and 3 hours to NYC. It’s an awesome place to live. (And you’ll have a personal vet at your service.)
Thanks for directing us to this important article.
Seven years after treatment I am still sending to CLL listmembers who request it the journal that I kept for CLL Topics during my participation in the MDAnderson RFC trial.
Re the “battle” with cancer, Dana Jennings, who has chronicled his prostate cancer in the NY Times, recently wrote a column on this terminology. It was sometime in March and can be found through the Times website.
Chaya, good luck with your move. It sounds like the right thing to do but I know that it is wrenching to leave the home where you lived with PC.
Cathie
Chaya
I don’t blame you for wanting to be closer to your family. I certainly would feel the same way also and would want to be close to my family also. But we will miss you in the West.
Being a nurse, sometimes patients want us to figure out what is going on with them but they don’t tell us all the facts. I had an employee who walked all the way to my office (I do occupational health) with chest pain and sweating. He did not tell me what was going on, I had to pull the information out of him and luckily I made the right decision, and called the EMS. Later when he came back to work from having a stent and heart attack, he said no one helped him when as he walked through the facility but he never told anyone he was in need of help; nor did he tell me that he was having chest pain. He only said he knew once he got to my office that he would get help. I can only tell you that it truly was a guessing game which came out ok. He said he knew he was having chest pain but he would not really tell me. So I can understand why there is such a gap in what the patient documented vs what the Dr or nurse documented.
On the other hand sometimes the practioner does not really listen to what the patient is telling them also. So better communication between the patient and the Dr is important. I feel I am very lucky because while I am still in wait and watch, my Dr spends times and listens to me and sometimes my husband says it is like a party going on and I tell him what do you expect, it may be something I have to deal with the CLL but I need to be positive and happy also and make the most of it.
Thank you again for all of your information. I have made my husband read the articles also so he understands this CLL also and when we do go to my practioner, that he asks informed questions. He says wow this information is so detailed and has so much information in it. The information you have provided helps me make more informed decisions. Thank you so much.
chaya
Ihial2
I took your advise and joined the discussion. As you know I am a new member all the way from TElAviv and I look forward to a mutual relationship. In the meantime I want to wish you a happy transfer to the east. Speaking from experience as a diplomat in NYC for a number of years I am sure you will like it. Until then I hope to remaim in touch.
Thank you for your cooperation and that of Radha. After reading the article I will post my comments.
Yehiel
Chaya–
Thank you so much for sharing this article and your thoughts, plus giving me the opportunity to read other readers’ comments.
You are a winner and a positive force for good wherever you are. You will enjoy your new home.
Carter
This is an eye-opening article… on more than one level.
My husband, who is also very ill, was the first to point out to me that when you have an appointment with your doctor, “How are you?” isn’t really a social greeting. First, you must really be prepared to tell him/her what your situation is…being a physician does not make one a mind reader. Since I was brought up both Lutheran and Southern, my first impulse is to say “fine, fine, I’m doing good, and you?” Manners taught me all my life were to keep your troubles to yourself; nobody really wants to know. However, we must make exceptions when answering your physician(s). So, I suppose the blame must not be placed entirely on the physicians… we do our part too.
When in the hospital with pneumonia recently, the young resident M.D. on the night shift asked a few routine questions about what treatments I was undergoing for my multiple problems, I told him for CLL, Dr. X was doing doing W/W, Dr. Y was treating me for (XXX), etc. I was shocked by his statement when he announced “there is no treatment for (XXX); you are dying.” My answer was “Yes, I am aware there is no cure or treatment for this rare disease (XXX)…but the physician can make me feel a lot better while going through the process, and there is a lot good that can be said about that.) He did not answer and left. I just hope he develops a better bedside manner before he is turned out on the public. And he did not bother to treat my immediate pain. Sigh!
Betty
Excellent commentary. I wonder if it can be almost an admission of failure for a physician to talk with a patient about adverse symptoms he or she is experiencing, as the he/she sees his or her role as the one who is supposed to make things better, not worse. I feel the terminal part is the hardest for physicians to face, in my experience. Also, if a chemo treatment doesn’t go well, or a patient is refractory…. can a physician communicate and listen well enough?
Best wishes on your move, Chaya. I found going through stuff of a family member (my Dad) when moving him out of his home, to be the most painful experience of many at that time. All of his stuff had meaning for him, and that, with the memories, are what is left of a long and valuable life. Keep the most treasured little things, while you move. A move can bring freshness, as time moves forward, without forgetting.
Chaya
My belief is that neither the doctors or the nurses understand just how bad the fatigue can be for CLL patients so they downgrade that symptom. This study shows that all cancer patients have fatigue & many of the other symptoms we experience. I believe that most of us are asked to measure some of these issues on a basis from 1-10, and maybe we need to be more vocal & emphatic about what we say and make sure that it is written down.
Enjoy the East coast! I know that you will enjoy it & we look forward to seeing you there!
Chaya,
Best wishes on your next phase of your life. Thanks for all you do for cll patient.
Stay well and happy,
Monique
I don’t know how many people would chose to leave Sedona for the East Coast after a couple of winters in the latter jurisdiction. How is your dog reacting to all the packing? I hope the family connections make up for the trauma of change. Best of luck. Maybe I’ll fly down to one of these monthly meetings.:)
Chaya,
I am finally taking the time to thank you for intervening on my behalf and helping open the door to see Dr.Weirda @ MDA, my outcome with first FCR was very good. His team was very attentive and reactive. I could not have been more pleased with the entire week’s outcome. I was pretty beatup of course but rallied back to a normal feeling within 4-5 days. I requested my followups at a facility closer to home and now am by tommorrow finishing FCR round 2. I am still maintaining my energy level and no real adverse effects as yet. Reading these entries from my more seasoned CLL associates does make me concerned re: future but for now I only have the here and now. I do take my iphone and record each visit with the doctors, and staff. Its amazing what you hear later when one has time to absorb it more intently. I am very vocal and thanks in a very large part to your unselfish ‘life-line’ CLL topics am empowered. Knowledge is power and sharing in this forum is our only real link to the reality of any disease. Power to the people who participate and make their doctors aware that we are reading and staying in the loop. We should be partners not adversaries but as I always say, it’s the squeaky wheel that gets the grease, so get it anyway that works for you. I love your soul, Chaya, you are a gift to us all!!
Thank you for this article; I was saddened but not surprised. And now it seems clear why the term ‘well tolerated’ for a drug is used in pharma literature. No-one asked the patient!!
Part of the problem is not being fully informed about the range and depth of side-effects of chemo drugs given to CLLers and of course each of us can have totally different side effects from the same drug. And doctors are so busy they seem to be not able to ‘deal’ with a patient’s side-effects.
I don’t really know what the solution is, other than to keep repeating the information to the medics.
Currently trying to recover from 2nd round of R + B, having had 3 x FCR which was not working. The fatigue and pain have been intolerable at times.
Chaya, all best wishes for your move to the Eastern side of the USA. Thank you for all your work. Jaqui
Chaya,
Brilliant article, as usual! It is the story of my life during the past week…physicians paying absolutely no attention to the patient and the patient’s level of pain…only the procedure.
Best wishes for an uneventful move back East. I had to go through my late husband’s things from 2003 through 2008. It’s a tough process, but will lighten your heart when it’s complete. It is a layer of life that is very challenging to deal with. Know that once it’s done, the good memories are still there with or without the accompanying “stuff”.
Thank you for your terrific continuing work. We couldn’t do it without you.
KP
I look upon the divide between doctor/staff and patient as the prime symptom in a broken health care system, at least for the US society and from my experience in NY State.
While I have met fine doctors and compassionate staff as individuals the pace of the treadmills leaves little time to dwell on the impact of symptoms suffered as consequences from treatment.
My concerns raised about the conditions of my kidneys were either ignored or minimized by the doc/staff in the 2nd tx round in NY. This resulted in my near crippling or death. The symptoms from the various drugs outside of the chemo/mAb therapy were ever as bad and maybe worse than the tx drugs themselves.
With the coming of computer networking in the hospitals and care facilities the excuse for not documenting ALL patient reported reactions should be nil.
There is a great need to find meaningful patterns in well documented patient experiences to find better drug protocols that include the pre-meds and the post Tx prophylactic drugs. To illustrate this was the substitution for drugs used at a CLL specialists clinic in the first cycle for a different set of drugs based on the “because we do things differently here” answer to my questioning of the substitution. The 2nd cycle was at a teaching hospital yet there was no effort made to share information or insight from the expert from whom I obtained the 1st cycle tx in spite of my asking.
May your move be smooth and welcome to the east.
The article was thought provoking. Thank you.
Terry’s oncologist seems to take it as an given that he has fatigue. Sometimes Terry reports it and other times he says he’s okay or fine. The oncologist always looks at me after those statements. My facial expression often reveals an opposite opinion. If Terry forgets a symptom or illness he doesn’t object if I mention it. Mostly I want him tell his own story in respect for him as a person and as a capable man.
Sometimes I think he may feel okay or fine because he is used to fatigue. About treatment the oncologist said Terry would be shocked at how much treatment would relieve his fatigue. However, he has yet to mention side effects.
There are other reasons for fatigue. We are realizing that his sleep is disturbed and he will discuss that at his next appointment. He experimented with sleep medication and found relief. His morning energy lasted much of the day. He wisely wants advice on that subject.
It is easy when one has a serious chronic disease to attribute symptoms and problems all to that one disease. I’ve done it. I learned a symptom or problem could very well be the chronic disease or it could be something else partially or entirely. Terry has Type II Diabetes as well as CLL. His diabetes is usually well under control. It is subjects like this I feel should be clearly spelled out by patients during appointments, even reminders if necessary. Terry often brings in a short list of questions or items for discussion. If the oncologist draws a diagram or writes on the exam table paper we tear it off and bring it home to transcribe into his records we keep at home. With electronic record keeping he is always given the hard copy of his labs. He only has to ask to receive immediate copies of reports such as those for scans.
I know side effects will be on that list if treatment comes up in the future. For now his oncologist feels the benefits don’t justify the risks. Those were his words. He said that just the day after I read your CLL Alerts article containing those words. It increased my appreciation for the oncologist. He will have to clearly outline the risks before Terry agrees to any treatment.
Linda
Chaya,
Thank you again for all you do. Moving is one of the most difficult tasks we undertake, physically and emotionally. Stay well. And…welcome to the east coast! Please, please keep up your wonderful work. You are our “go to ” person that we need so desperately.
Thank you.
CZ
Chaya
I would like to thank you so much for what you do for us.
I live in New Zealand and the mutation test is not available to us here so I am going to Australia to have it done. Your website has given me confidence to ask and follow through on getting more thorough prognostic indicators.
If you ever came to New Zealand I would be honoured if you stayed.
Your efforts are our behalf are so gratefully appreciated
Hi Chaya,
I always appreciate the information you give us. Best wishes on your move and your new life in Maryland.
Thank you!
Rich
As a patient community, guided by someone trained in the scientific exploration technigues and principles,we can develope and standardize the language for describing the qualitative effects of therapy. With the use of a common standard language, preferably with a lot of overlap with medical jargon, it will become easier to convey what we feel to the folks who treat us.
Once we have a standard common description for side effects, some meaningful quantitative surveys can be done within our community,after all we are a significasnt CLL data base collectively.
Elek
Chaya,
Good luck in your move. We have relatives in that area of MD, and it is an interesting area, and you will be in the thick of things. It is great to have you in our corner and helping us. I wish you the best.
Chris R.
NY and Az
Chaya,
My best to you on your move. It will be worth it.
Again, a very timely article. I could write a book.
Take care and many blessings.
Rita
Chaya:
This has to be a bittersweet move for you, but in the end a very wise choice. John and I face the same decision in a few years. He will retire and I know I want to be near one of our children, as right now we are not near any of them! Godspeed you in your move. I know there is much about the eastern seaboard that you will love. My brother lives in DC and teaches at Georgetown. You never know. We might connect up one of these days, Beth Havey
Best of luck with your move Chaya. Having been through dozens of moves myself, my only suggestion is to pace yourself and prepare over time to avoid being overwhelmed. That’s great that you’ll be closer to your daughter.
cary
Good luck on the move. I made my first visit to Sedona last year. I also served on NIH and NIMH grant review committees for 12 years, so I must have visited the Washington area at least 40 times over that period. You are moving on and up. You’ll love it.
Marshall
Chaya,
I’ve had some of the experiences reflected in Judith’s and Maka’s posts, and I share their and your concerns. But how do you beat such an entrenched system and bias for relentless treatment?
I reluctantly started treatment only after postponing it for years and after my hematologist said that my blood factors other than WBC were looking bad. My attitude was that if I felt good, why not put off the inconvenience of treatment until it was irrefutably necessary? I didn’t want to be debilitated. My doc honored my preference, but with reluctance of her own. I was Stage IV and still felt good at the start of treatment.
Fast-forward a year or so after the last treatment, and my WBC is climbing again, though not yet as high as when I started treatment. Disappointing maybe, but not a surprise. This time I’m getting more pressure, despite restating my preference to wait. I don’t want to spend countless hours in a chair watching a drip. I’ve got stuff to do, plus it’s spring and by now I always start training for bicycle tours. I feel good, don’t look bad, and I have sufficient energy.
Suddenly, in the doc’s view my reasons for watching and waiting are less credible. I don’t want to jeopardize our heretofore good relationship. Obviously I have a bias of my own: I want to live my life without feeling trapped in a morass of medical procedures and insurance forms, irrespective of how long that might be. It’s apparently a hard message to hear.
to molly fletcher:
I am using anti-nausea wristbands right now, and have found them very effective.
My niece was with me at one of my last treatments & when I mentioned nausea she said “I have something for that!”
Better than another drug, definitely.
-Julie
Dear Chaya,
I can’t thank you enough for your articles and your commitment to all of us with CLL. I feel so much better prepared when I meet with my Oncologist.
I agree totally that the Oncologist does not have a real idea 0f what the patient is experiencing even though the information is put forth by the patient. I had a discussion about the term “well tolerated” in regard to my experience with a clinical trial drug and after discussion, it became clear that my oncologist had a totally different interpretation of this term. He somehow did not include issues relative to the impact of the drug on the bone marrow,but more on one’s superficial wellness. I felt that I did not tolerate the drug as I was tired, sick and eventually hospitalized.
I’m hoping for some information for persons such as myself who are nearly 80 and have been treated a number of times. I fear that I will have difficulty recovering from standard treatments.
Wishing you a smooth move to the East and near your family.
Murre
Thanks for another great article, Chaya! And very best wishes to you in your move out east.
Wishing you luck and peace in your move. How lucky I feel when I read your article and realized we have been fortunate to have two oncologists who listen and respond to everything we say and feel.
Debbie
I imagine that we need a new form for entering our personal experiences with CLL and treatment. I don’t know how other Drs. are when seeing a patient, but I do know that Dr. Keating listens AND looks at the patient. Sometimes I wonder if how the patient looks is more important than what the patient is saying.
Tom is one of those patient’s who will say he is just fine. (southern upbringing) He has said this to Dr. Keating while running fever and he has said it to Dr. Keating while he couldn’t move his neck due to tumor flare. I remember one time in particular when Tom was relapsing and still saying he was feeling pretty “good”. Dr. Keating looked at him and said, “You know Tom, men sometimes have a hard time dealing with cancer and go into denial. Are you in denial?”
Then Dr. Keating looked at me and said, “Jenny Lou, what have you noticed different about Tom in the last month.” Of course, I had noticed a whole lot including more fatigue, night sweats, day sweats, appetite change, etc. When I vocalized them, even Tom looked up and said, “Yeah, that’s how I’ve been feeling.”
MDAnderson also has a nurse who only fills in a chart according to how Tom tells her he is feeling…this is every single visit. Fatigue is the number one question.
The problem with patient reporting regarding CLL is this—CLL is such a slow moving cancer that by the time a patient’s energy level is nil, they don’t notice it as much as an outsider or spouse because they have over time gotten used to that lessor level of energy. I have heard many people, including Tom, make the statement that after they had treatment and entered a remission, they couldn’t believe how great they felt. They all said that they didn’t know they were feeling soooooo badly before treatment. Perhaps the spouse’s and loved one’s should also get to give their opinion on this area in the Clinics.
Thank you, Chaya, for your work, and everyone else for your comments.
Chaya, Good Luck on your move and the fast pace in the East! It will be nice to live closer to your daughter. I’ve enjoyed and learned from all your information and also pass some of it on to my doctor who does listen.
Take care,
Grace
Quite a response on this article! But it is not a surprise to see that the first several inputs were of concern and empathy on your move. So much time has elapsed I hope you are safely settled in your new home by now. I wish you the very happiest move close to Radha and I am certain you will be extremely productive in MD.
Most of what one may think has already been posted, brilliantly and eloquently, above. I must add my agreement that YES we need to voice our symptoms and assure they are being captured. Otherwise Big Pharma/research centers (sorry if I offend some with this bundle- it is not meant to offend, but is so for sake of brevity) will have diminished or no incentive to search for less toxic alternatives. Instead they will continue to look at us as mere numbers. Numbers are necessary for sake of comparison and measurements, but more stress needs to be placed on quality of life! It’s bad enough that our local oncologists have to rely on “second-hand” info that they barely have time to digest, discuss or even form their own critical thinking on. tsvieps and others– in total agreement.
Maka: great idea of tape recorder. Helps in entering your info in your own database, which helps plan the following consult.
I am fortunate to have a great oncologist who is also professor. While I rarely let him off the hook, I too am very careful not to destroy the good relationship. He accepts my charts, article links (thanks Chaya, many come from you) and more, with gratitude and joy, as well my pesty questions, objections and concerns.
As said above, doctors see the world in a different view from patients. I am motivated to share an interesting experience. In the waiting room I was chatting with a fellow CLL patient I had met there on a previous visit. He and his wife told me in detail about his transplant, and the nightmarish GVHD and other horrible effects, reactions to drugs, side effects from drugs to treat the symptoms, new symptoms, opportunistic diseases, drugs, new side effects. I was horrified, but they were so grateful for his eventual recovery that they both had the kindest things to say. During my consult that day the doc was reviewing my possibilities ahead (we make a long term game plan that we regularly update) and talked at length about transplant, but the focus was about how far they had come along and how effective it was. To make his point he described an anonymous “complex case” example, which I soon recognized as the fellow in the waiting room. You would have thought they were talking about two entirely different procedures: for the doctor all was part of the treatment and its ramifications, and that there were ways to deal with most things that come their way, and that side effects are no big deal because what matters is that there are ways to deal with them. (Reminds me of the war analogy and his ammunition arsenal!!) I was speechless but did not choose to disagree with the doc, as that is still a long term need, hopefully very far away!
Chaya, thank you for making us think, making us take responsibility on our ends. Take care and be well, do not stress if at all possible in adjusting to your new home.
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