“How long do I have, doc?” It’s a line from the movies that people with chronic lymphocytic leukemia sometimes repeat after they’ve been diagnosed, which is when life can start to seem like a B-grade B-cell melodrama.
It’s a natural question, and one that is unanswerable. CLL varies greatly in its aggressiveness and in patient response to treatment. I read the statistic somewhere that about half of all CLL patients will d
ie of the disease, and we now know that certain prognostic test results can indicate which patients may be more likely to have disease that will progress. But that doesn’t mean they’ll die; even patients with the worst prognostics can get lucky and have a stem cell transplant that cures their CLL. Ultimately, “how long you have” is still the province of Fate rather than man.
So, to the oft-asked question “How long do I have to live?,” I offer in reply a paraphrase of John F. Kennedy: “Ask not how long you have to live. Ask what you can do to help yourself live longer.”
In that spirit, here are some suggestions that may help keep the dragon, as some people are wont to call leukemia, in its place:
1. Get yourself a good local doctor. Qualities to look for: thoroughness, thoughtfulness, a willingness to listen and learn, to read stuff you bring in off the internet, to explain things clearly, to work with a CLL expert. Qualities to avoid: rigidity and dismissiveness. In his book Come Hell on High Water (A Really Sullen Memoir), Gregory Jaynes writes about a fellow passenger on a ship: “It occurred to me that he has the self-confident bearing of a successful and God-like physician, either that or an extraordinarily secure idiot; for most of my life I’ve been incapable of telling the two apart.” Doctors aren’t infallible, and a good one -- no matter how accomplished or famous -- brings to his work a healthy dash of humility. CLL is tricky and the landscape of care is in an almost constant state of change, so it should humble everyone who toils with it.
2. Consult at least one CLL expert, preferably two at different institutions. Experts often disagree and their views may be colored by the research their own cancer center is doing and the clinical trials they are conducting. (When visiting a CLL expert, avoid getting caught up in the moment and agreeing to jump into a clinical trial without giving it some thought and research.) All this makes the good local doctor all the more important: It helps to have an honest broker who can, with impartiality and from the vantage point of distance, help you sift through both expert recommendations and the latest ideas for treating the disease.
3. Go with a friend. I hope you have a spouse or a relative or a friend who is willing to hold your hand, lend a shoulder to cry on, go to the doctor with you, help you take notes, ask questions, and sort through what CLL means on all levels. Caretakers provide emotional support as well as a second brain when dealing with complex medical issues.
Remember to give them your love and gratitude, as well as this important gift: time and space of their own, away from CLL. (And if there is no one close at hand, patient websites such as CLL Forum have a number of members who are willing to help from a distance; for face-to-face contact, the Leukemia and Lymphoma Society provides local support meetings.)
4. Do everything you can to find or maintain the best health insurance possible. What good is the best treatment or most important test if your insurance won’t pay for it? Finagling good insurance is worthwhile, even if it means a career change or moving to another locale. (Readers of this blog know that my current insurance won’t pay for stem cell transplants and that I have to do something about that. Stay tuned.) A very useful website covering insurance laws and options in all 50 states is this: http://www.healthinsuranceinfo.net
5. Have your prognostic tests done so you have some idea of what you’re dealing with. These tests are IgVH mutational status, FISH, and CD 38. Making a treatment decision without knowing these is foolhardy. There is a growing body of evidence that these tests can indicate which patients are more likely to have progressing, even aggressive, disease; this evidence also shows that there are different responses to treatment depending upon these test results. The risk-based approach to CLL is the wave of the future and the future is here now. Quest Diagnostics is covered by most US insurance plans and can run all three of these tests; you usually can have the IgVH test done for free as part of a visit to a CLL Research Consortium center. Dr. Terry Hamblin’s lab in the UK can also do the tests. (ZAP-70 is a valuable test but it is in the working-out-the-testing-kinks stages; it is best done at a research institution such as UC San Diego as opposed to a commercial lab such as Quest.)
6. Become familiar with the criteria for starting treatment, especially the NCI guidelines, and remember that good doctors believe one should “treat the patient, not the numbers.” Take a look at Dr. Hamblin’s three-part blog post titled What is the aim of treatment? Learn to fines
se the treatment choices in front of you, to judge their potential risks and rewards, to consider how they can be timed and staggered for your greatest benefit. Consider the opportunity cost in waiting too long or starting too soon. These skills are something that come with knowledge and experience, yet they are essential to charting the right course. Even then, there are no sure answers, just educated guesses (and making the occasional mistake can be part of the struggle). If you are in "watch and wait," use it as a time to learn.
7. Take the long view. Ask what treatment you’ll do when you relapse from this one. Make a flow chart if you have to. Strategize for the future. CLL is like baseball -- it has nine innings, not one, and it can even go into overtime. You can win the first inning -- and in CLL treatment, you almost always do -- but that won’t help in the long run if you lose the ones that follow.
8. Use the internet. Run your questions and ideas by your fellow patients in discussion groups such as CLL Forum and the ACOR list, read sites such as CLL Topics and Dr. Hamblin’s blog. Between these four sources alone there is enough information to answer all your questions, bring you up to speed on the latest in CLL care and management, and offer a valuable perspective on the choices in front of you. All you have to do is read and participate. Is your life work a little homework, a little networking on the net? Whatever you do, don’t keep your own counsel. It is said that a lawyer who represents himself has a fool for a client. The same can be said of a CLL patient who reaches conclusions and doesn’t run them by others, including doctors and fellow patients. No matter how smart or clever you think you are, CLL is a tricky business and you will benefit from sharing your suppositions with others.
9. Avoid comorbidities. Take care of yourself -- adding lung cancer or heart disease or diabetes to the CLL equation only complicates matters and narrows your choices. In other words, quite the freaking cigarettes and don’t embrace your inner glutton. T
he more fit you are, the better you will respond to therapy and the greater your chances of a successful transplant, if it comes to that.
10. Be proactive. If you get a strange symptom, take it seriously. If your doctor’s office is slow to respond to something, or if a nurse appears to be confused about things, or if your health insurer balks about paying for a needed test, set them straight. You can often catch more flies with honey, but be a pain in the ass when you have to. I saw a T shirt once that read: “The more I complain, the longer God lets me live.” There is a certain truth to that.
11. Don’t get freaked out by your "new normal" to the point that you make decisions based on fear or panic. Do things such as yoga, exercise, and meditation to maintain a calm, centered focus and to keep CLL in its place as only one part of your life, not the whole of it. As one patient recently put it, "Every morning I look outside to see our beautiful world. Great weather, terrible weather, it doesn't matter. I step outside and draw in a huge breath and thank God for letting me have another day here on earth. That takes the edge off anything that might cause grief the rest of the day. It's already started out as a good day." If and when the monsters start lurking in the night, remember my favorite panic button quote, from lung cancer survivor Greg Anderson in the book 50 Essential Things to Do When Your Doctor Says It's Cancer: “Panic is a projection that is not real. We are not just our fears. Our fears do not necessarily determine our future. This is significant.”
12. Don’t give up. Where there’s hope, there’s life. If you doubt what I’m saying, read Dr. Jerome Groopman’s The Anatomy of Hope. People beat the odds daily. You can, too.
13. In the final analysis, always trust your own intuition, and make no important decision without consulting it. If something doesn’t feel right, don’t do it. When you find a course of action you truly believe in, put your soul, as well as your body, into it.
It’s a natural question, and one that is unanswerable. CLL varies greatly in its aggressiveness and in patient response to treatment. I read the statistic somewhere that about half of all CLL patients will d
ie of the disease, and we now know that certain prognostic test results can indicate which patients may be more likely to have disease that will progress. But that doesn’t mean they’ll die; even patients with the worst prognostics can get lucky and have a stem cell transplant that cures their CLL. Ultimately, “how long you have” is still the province of Fate rather than man.So, to the oft-asked question “How long do I have to live?,” I offer in reply a paraphrase of John F. Kennedy: “Ask not how long you have to live. Ask what you can do to help yourself live longer.”
In that spirit, here are some suggestions that may help keep the dragon, as some people are wont to call leukemia, in its place:
1. Get yourself a good local doctor. Qualities to look for: thoroughness, thoughtfulness, a willingness to listen and learn, to read stuff you bring in off the internet, to explain things clearly, to work with a CLL expert. Qualities to avoid: rigidity and dismissiveness. In his book Come Hell on High Water (A Really Sullen Memoir), Gregory Jaynes writes about a fellow passenger on a ship: “It occurred to me that he has the self-confident bearing of a successful and God-like physician, either that or an extraordinarily secure idiot; for most of my life I’ve been incapable of telling the two apart.” Doctors aren’t infallible, and a good one -- no matter how accomplished or famous -- brings to his work a healthy dash of humility. CLL is tricky and the landscape of care is in an almost constant state of change, so it should humble everyone who toils with it.
2. Consult at least one CLL expert, preferably two at different institutions. Experts often disagree and their views may be colored by the research their own cancer center is doing and the clinical trials they are conducting. (When visiting a CLL expert, avoid getting caught up in the moment and agreeing to jump into a clinical trial without giving it some thought and research.) All this makes the good local doctor all the more important: It helps to have an honest broker who can, with impartiality and from the vantage point of distance, help you sift through both expert recommendations and the latest ideas for treating the disease.
3. Go with a friend. I hope you have a spouse or a relative or a friend who is willing to hold your hand, lend a shoulder to cry on, go to the doctor with you, help you take notes, ask questions, and sort through what CLL means on all levels. Caretakers provide emotional support as well as a second brain when dealing with complex medical issues.
Remember to give them your love and gratitude, as well as this important gift: time and space of their own, away from CLL. (And if there is no one close at hand, patient websites such as CLL Forum have a number of members who are willing to help from a distance; for face-to-face contact, the Leukemia and Lymphoma Society provides local support meetings.)4. Do everything you can to find or maintain the best health insurance possible. What good is the best treatment or most important test if your insurance won’t pay for it? Finagling good insurance is worthwhile, even if it means a career change or moving to another locale. (Readers of this blog know that my current insurance won’t pay for stem cell transplants and that I have to do something about that. Stay tuned.) A very useful website covering insurance laws and options in all 50 states is this: http://www.healthinsuranceinfo.net
5. Have your prognostic tests done so you have some idea of what you’re dealing with. These tests are IgVH mutational status, FISH, and CD 38. Making a treatment decision without knowing these is foolhardy. There is a growing body of evidence that these tests can indicate which patients are more likely to have progressing, even aggressive, disease; this evidence also shows that there are different responses to treatment depending upon these test results. The risk-based approach to CLL is the wave of the future and the future is here now. Quest Diagnostics is covered by most US insurance plans and can run all three of these tests; you usually can have the IgVH test done for free as part of a visit to a CLL Research Consortium center. Dr. Terry Hamblin’s lab in the UK can also do the tests. (ZAP-70 is a valuable test but it is in the working-out-the-testing-kinks stages; it is best done at a research institution such as UC San Diego as opposed to a commercial lab such as Quest.)
6. Become familiar with the criteria for starting treatment, especially the NCI guidelines, and remember that good doctors believe one should “treat the patient, not the numbers.” Take a look at Dr. Hamblin’s three-part blog post titled What is the aim of treatment? Learn to fines
se the treatment choices in front of you, to judge their potential risks and rewards, to consider how they can be timed and staggered for your greatest benefit. Consider the opportunity cost in waiting too long or starting too soon. These skills are something that come with knowledge and experience, yet they are essential to charting the right course. Even then, there are no sure answers, just educated guesses (and making the occasional mistake can be part of the struggle). If you are in "watch and wait," use it as a time to learn.7. Take the long view. Ask what treatment you’ll do when you relapse from this one. Make a flow chart if you have to. Strategize for the future. CLL is like baseball -- it has nine innings, not one, and it can even go into overtime. You can win the first inning -- and in CLL treatment, you almost always do -- but that won’t help in the long run if you lose the ones that follow.
8. Use the internet. Run your questions and ideas by your fellow patients in discussion groups such as CLL Forum and the ACOR list, read sites such as CLL Topics and Dr. Hamblin’s blog. Between these four sources alone there is enough information to answer all your questions, bring you up to speed on the latest in CLL care and management, and offer a valuable perspective on the choices in front of you. All you have to do is read and participate. Is your life work a little homework, a little networking on the net? Whatever you do, don’t keep your own counsel. It is said that a lawyer who represents himself has a fool for a client. The same can be said of a CLL patient who reaches conclusions and doesn’t run them by others, including doctors and fellow patients. No matter how smart or clever you think you are, CLL is a tricky business and you will benefit from sharing your suppositions with others.
9. Avoid comorbidities. Take care of yourself -- adding lung cancer or heart disease or diabetes to the CLL equation only complicates matters and narrows your choices. In other words, quite the freaking cigarettes and don’t embrace your inner glutton. T
he more fit you are, the better you will respond to therapy and the greater your chances of a successful transplant, if it comes to that. 10. Be proactive. If you get a strange symptom, take it seriously. If your doctor’s office is slow to respond to something, or if a nurse appears to be confused about things, or if your health insurer balks about paying for a needed test, set them straight. You can often catch more flies with honey, but be a pain in the ass when you have to. I saw a T shirt once that read: “The more I complain, the longer God lets me live.” There is a certain truth to that.
11. Don’t get freaked out by your "new normal" to the point that you make decisions based on fear or panic. Do things such as yoga, exercise, and meditation to maintain a calm, centered focus and to keep CLL in its place as only one part of your life, not the whole of it. As one patient recently put it, "Every morning I look outside to see our beautiful world. Great weather, terrible weather, it doesn't matter. I step outside and draw in a huge breath and thank God for letting me have another day here on earth. That takes the edge off anything that might cause grief the rest of the day. It's already started out as a good day." If and when the monsters start lurking in the night, remember my favorite panic button quote, from lung cancer survivor Greg Anderson in the book 50 Essential Things to Do When Your Doctor Says It's Cancer: “Panic is a projection that is not real. We are not just our fears. Our fears do not necessarily determine our future. This is significant.”
12. Don’t give up. Where there’s hope, there’s life. If you doubt what I’m saying, read Dr. Jerome Groopman’s The Anatomy of Hope. People beat the odds daily. You can, too.
13. In the final analysis, always trust your own intuition, and make no important decision without consulting it. If something doesn’t feel right, don’t do it. When you find a course of action you truly believe in, put your soul, as well as your body, into it.
"Watch and wait"
3 comments:
Most excellent post David,
It is a great reminder. After months of learning, it is a good idea to go back to basics. You need to throw that post back up there every now and then.
Cheers,
Carlin
Always, your postings are direct, helpful, encouraging and inspiring. Thank you, David.
all the thousands of mill. Indians and Chinese will pay a resonable price for CLL.treatment.Not what the US chemoindustry ask!.
There is little shipping of Rituxan to these continents.
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