<p>silliconvallymom, thanks for the tips. definitely will look into it.</p>
<p>hanna: thanks for the offer. i will PM you.</p>
<p>I sent you a PM!</p>
<p>It’s been 17 month since I was diagnosed with very advanced stage cancer. During this time, I had a major surgery and near nonstop cancer treatment with a short remission last summer. Treatment for my recurrence that started last September so far can be considered both a success and a failure. A success in that the cancer did not spread like a wild fire and I am still healthy otherwise – a funny thing to say, but nevertheless true since I feel well and energetic enough most of the time to do most of the things I want to do. A failure in that after eight months of nonstop treatment, I have not been able to achieve another remission. Furthermore, I have by now failed three treatments in rapid succession (including the latest one I started only a little over a month ago). On the book, this puts me in the category of very high risk patients with poor prognosis going forward. Statistically speaking, just having a recurrence after such a short remission pegs your life expectancy at 12-18 months let along failed treatment for recurrence. Indeed, some patients whose profile mirrors mine closely have been more or less given up by their physicians. According to them, I should be writing my own eulogy by now. Or, planning my own funeral. “Doing events” has never been my forte, but I love writing, and I believe I am better at it than Amir. So, given a choice, I would rather write my eulogy than orchestrate a perfect funeral. Yet, neither I nor Dr. S. feels this is in the cards anytime soon. I have managed to completely delude myself into thinking that I can hang around long enough, hobbling or not. I am still stubbornly clinging to the myth that cancer has been a net positive force in my life – so far, that is. Ask me again when and if I can barely get out of bed. </p>
<p>Throughout last year and half, I have learned a lot about myself. At the risk of sounding like I am patting my own back, I would say, so far, I have handled my adversity well enough –I certainly did neither fall apart nor bury my head in sand in denial. Everybody has a different coping strategy. Mine involves a heavy dose of objectification and detachment when it comes to treatment decisions and disease management. I try to treat it as a business problem to solve – or, alternately a research project. This helps me understand what it is I am dealing with, and which course of action gives me the highest probability of marginal improvement in the situation at hand. My attitude has been —“consistently make a decision that will produce the best marginal gain at any given moment. Cumulatively, this brings the best long term odds”. In order to do that, I must ensure that my judgment is not clouded by my emotional response to the situation.</p>
<p>So, I turned my medical condition into a research project just like what I used to run when I was getting my Ph.D. and a business problem to solve just like when I was running a large scale business with hundreds of millions of dollars (and more!) at stake. Based on everything I read and researched, I feel that I have a lot of options, but it requires a well thought out strategy. Dealing with cancer with my trajectory is more of an art than science as there is no clear, standard protocol with proven success. The “art” in this case, is that of a finely tuned strategy of fashioning an acceptable balance between the risk and the reward. </p>
<p>Having a lot of options is not same as having infinite options. Since the recurrence last September, my attitude about managing my treatment options has gone through a phase of major adjustment. When I was going through the front line therapy after the surgery, there was a hope that maybe I will be the lucky one with very long remission — near permanent remission. For that remote possibility, I was willing to give it all I’ve got. Hit it hard and maybe I will emerge victorious forever. A carpet bombing strategy is what I pursued. Nonstop weekly chemo of harsh drugs – rain or shine! I earned my remission, and I thought it was mine to keep. Alas, it was not to be. The enemy went underground, and popped up again when my guard was down. Since then, it has been two steps forward one step back. Then, one step forward and two steps back. Realistically, the odds of me getting into remission and staying there for a long time are exceedingly low. The most likely scenario of my long term survival means coexistence with cancer, not eradication of cancer. I realize now that I am engaged in a guerilla war against an intransigent enemy adapted to sustain itself indefinitely and oh, I have the civilian population living in a conflict zone I must protect. Indiscriminate carpet bombing is no longer a viable strategy. It creates a tremendous collateral damage and no lasting results. Now, I need to find a way to hold the enemy at a bay till reinforcement arrives in the form of a penicillin equivalent for cancer, which may not happen in my life time, or at latest till the next air drop of critical supplies in the form of incremental improvement to the existing treatment protocols that may each buy me a few more years at a time. A few more years at a time for ten times are almost as good as a cure, and I will be glad to settle for that! </p>
<p>Under this circumstance, rules of engagement have to change. My strategy for long term survival is different than what I had a year ago. The strategy now revolves around finite resource management – finite resources being my body’s ability to withstand so many chemical assaults (chemo drugs), and the total number of drugs that I can cycle through. I cannot afford to use them all up for one glorious night of shock and awe, and killing all the civilians in the process. It is now a matter of how to deploy minimal resources that give me the most bang for the bucks. How to stretch available arsenal as far and long as possible. How to provide a cover for the civilians trying to grow crops in the field for subsistence. How to deploy a stop gap measure to buy time before the next big move with guns blazing. How not to deploy heavy artillery only to shoot at rabbits and squirrels. In short, how to do it in a minimalist, sustainable fashion. This is a hard discipline since it is so against my nature. I have lived my life with a motto “nothing worth doing should be done in moderation”. I have to learn how to be moderate so that I can live longer. A hard adjustment. </p>
<p>Then, there is also a mundane and practical side of “living”. I remember watching a documentary about a day in the life of a refuge in a displaced persons’ camp. In the midst of deprivation and suffering, there were a wedding, a divorce, a child birth, and kids getting their lessons in a make shift school tent. In short, a life and its essential routines and rituals have to be respected. When I had a modicum of a hope to eradicate cancer for near permanent remission, if not outright cure, attacking with everything I’ve got was the highest priority. Let’s evacuate all civilians so that I can bomb the hell out of the entire city! All other schedules and events had to be rearranged so that I could stick to the regimen without a single day of delay or deviation from the treatment protocol. It is different now. It looks like I will be living in a conflict zone for a long time. I can hold my breath only so long. Inhale… Exhale… Life’s routines and rituals must be accommodated. If I want to go on a two week vacation with my family, well, the treatment schedule has to be adjusted to accommodate that. If I have to miss a couple of weeks of treatment so that I can tend to the important life events for me and my family, so be it. I can no longer put the rest of my life on hold while I fight this war. Living in a conflict zone is now my lot, and I need to “live” as much as possible while I strive to hold the enemy at a bay. Luckily, I find this adjustment quite manageable – so far……</p>
<p>With the failure of the latest treatment, I have also reached a point where I have to step outside the boundary of conventional medicine. Based on all indicators on the book, statistics for me looks exceedingly grim. I can’t fight this statistics using conventional medicine alone. It reminds me of some of the business problems I used to deal with. There are routine conundrum of garden variety business problems. You cut cost. You think of a more effective marketing scheme. You try to generate more revenue by stealing another 2% market share from your competitors. It works. Then, there are business problems that can’t be addressed in this manner. You need to redefine the business model. A radical change is perhaps necessary. This is where I am in terms of managing the cancer. At the current rate, I may be rapidly going through all the tricks in the bag of conventional medicine. Something has to change the vector of this trajectory, and the odds are poor that I will find it within a comfort zone of conventional medicine. Time to step into the wilderness. Gold prospecting, anyone?</p>
<p>Conventional medicine is “approved” medicine, which took, years, decades to evolve. Any new bleeding edge development on the periphery of conventional medicine will take similarly long to be approved for cancer treatment. I have seen some promising early stage trial outcomes of different treatment modalities. The problem is, I don’t have the time to wait. I need them now, and the only way to get them is to step into the wilderness outside the fort. Especially interesting are the drugs that were original developed for different medical conditions that early stage research showed promising results for anti cancer activity. Unfortunately, many of these drugs do not have a prayer of getting approved for cancer treatment. The reason is, many of these drugs’ patent expired long time ago. No patent. No profit motive. No profit motive, no phase III clinical trials that cost anyway between $300-400M. No phase III clinical trials, no FDA approval. No FDA approval, no insurance coverage and no inclusion into the “approved” arsenal at major cancer centers. In short, these drugs can only be used as off label drugs, and most mainstream doctors are reluctant to prescribe them for a variety of reasons, not the least of which is the liability issue. FDA approval provides the doctors and their institutions a protection from medical liability suits in case the treatment did not work as intended or in case there are unforeseen side effects. </p>
<p>When I told Dr. S that I would be looking into non-conventional, experimental treatment on top of the usual repertoire of cancer treatment regimen I was getting from him, he introduced me to his former colleague, Dr. C. Dr. C was a physician at Memorial Sloan Kettering Cancer Center, but left to explore more experimental treatment avenues without the barrier created by the institutional guideline. So, I went to see him, and he recommended an off label drug therapy. The drug was originally developed mostly for children with a form of a genetic disorder. The drug’s patent has expired. Several early, small scale clinical trials show a great deal of promise, but due to the lack of phase III trial and FDA approval, it is off limit to most cancer patients. Very few physicians know enough about it and feel comfortable with it to prescribe it, and most cancer centers will not deal with off label drugs of this kind. Furthermore, even a generic version of the drug is very expensive and not covered by the insurance plan, and as such most patients cannot afford it even if they could get it. I have started this drug therapy a week ago on top of the regular chemo treatment I am on. There is evidence that some patients given up by their doctors went into decade long remission with the help of this drug. However, that is anecdotal evidence. There is no guarantee that it will work like that for me. Yet, I am looking at my survival strategy, and it involves managing a series of stop gap measures that will buy me a year or so at a time. Even if it just buys me enough time for my body to rest before a new round of powerful (read: toxic) treatment has to be deployed, I would say, it’s a tactical victory. If this drug does not help, then I move onto more such drugs. </p>
<p>Among advanced cancer patients looking for a treatment outside the boundary of convention medicine, sharing that approach with their mainstream oncologist is a very sensitive one. Many of them get non conventional treatment behind the back of the doctors. Likewise, they do not discuss the conventional treatment with their non-mainstream practitioner. In my case, I am very fortunate that Dr. S and Dr. C think very highly of each other. Both know what I am doing with the other doctor, and both of them are monitoring what they are doing with me vis-</p>
<p>You are an inspiration. I have not read all the posts in this forum, but just the last few pages; the metaphors you have chosen, the path you are taking, the way you have chosen to live life to the fullest with this heinous disease is remarkable.<br>
I hope you write a book.
I hope even more that your wife and mistress conspire to create a space that becomes conflict free.</p>
<p>Beautiful writing, sunriseast! Thanks for sharing your latest news. Wishing you every success in the struggle for co-existence with your foe. </p>
<p>I have read of some sort of vaccines being produced in Israel, but don’t know what stage the testing is in. Apparently they are individualized for each patient? It seemed very promising.</p>
<p>Israel is a hot bed of cutting edge medical research, along with high tech stuff.
There are several vaccine innovation emanating from Israel. One that I was very interested in is in an early stage of clinical trial. Unfortunately, it’s not available in USA. Either Europe or Israel. My husband is an Israeli. If I become desperate enough, I will go there and go through the trial. My in laws told me that they have a room waiting for me in their house (my beloved sister in law and her husband). I am not there yet: since I have a lot of options to exhaust before I commence a cross Atlantic venture.</p>
<p>BTW; There are couple of women I got to know who have been almost on the exactly same trajectory. They are both highly intelligent and seeing some very good doctors and non-mainstream practitioners.</p>
<p>We have been virtually “sharing” our wives and mistresses by exchanging notes about our consults and the opinions of our respective medical staff. Does this make us “swingers”? ;)</p>
<p>Wow, sunrise. How we wish we could help you fight this war. But, we are only able to stand on the sidelines and cheer you on.</p>
<p>sunrise, we are all rooting for you! Your plans, as always, sound eminently reasonable. It is distressing that there is no incentive to test and get approval for some promising off-label drugs for use in cancer. I wish that the profit motive could be removed from our entire health care system, including pharmaceutical development.</p>
<p>If anyone can beat this persistent cancer, you can. You are an outlier in terms of approach, intellectual firepower, and strength of character - why shouldn’t you be an outlier in terms of outcome?</p>
<p>the whole profit motive is a very complicated issue. </p>
<p>Regarding the orphaned off label drugs whose patents expires and thus provide no profit incentive for the drug companies, one way to address this is special “re-granting” of patent if the drug is proven effective against medical conditions that they are not currently approved for by the FDA. </p>
<p>This will provide the profit incentive for the company to initiate Phase III clinical trial with a hope for FDA approval. </p>
<p>This will require a new legislation though. Potentially controversial. But, if existing drugs with a good safety profile and little side effects can help a lot cancer patients, it’s a win win for the drug company, insurance company, the government, and MOSTLY the patients.</p>
<p>I have been thinking a lot about this issue lately. If the drug that I am on is proven effective for me, this is a cause I would be willing to take up. I need to see how this works for me first. if it does not work, I won’t have the credibility to push this issue. A cause needs a face - a successful case to demonstrate the benefit of such a legislation.</p>
<p>PS: anti malaria drugs, HIV drugs are some other drugs that are showing a great deal of promise. For the same reason, nobody is doing phase III clinical trial. Meanwhile, new fangled drug, for which Roche paid $2B to buy the original inventor (Genetech) of the drug, is getting all the media attention and bio med version of high gear, glamorous marketing. It even got fast tracked by FDA, and yet, when you actually see the clinical research outcomes, the results are NOT impressive at all. This drug has a fresh patent - as such it deserves all the marketing glitz Roche can drum up. Countless studies sponsored by Roche and I bet tons of wine and dine conferences for oncologist.</p>
<p>Such is the profit side of the pharma industry. I don’t believe removing the profit incentive is the answer. The pros still outweigh the cons of the profit driven incentive system for developing new drugs. What I would like to see changed is a way to “re grant” a profit incentive so that promising, orphaned drugs can have a chance to be tested in a large scale, which is a requirement for FDA approval.</p>
<p>My son has type 1 diabetes, and I am honestly very doubtful that a cure will be found because there is no profit to be had. The cost of his insulin and pump and cgm is high, even with insurance. Why on earth would anyone want to stop this influx of money!</p>
<p>Very frustrating. When he was first diagnosed I read everything I could find about “cures” on the horizon but now I absolutely don’t believe there is any incentive to find one.</p>
<p>OP, adding my voice to those who think your posts are beautifully written and are keeping you and your family in thoughts and prayers.</p>
<p>Thanks for keeping us posted, sunrise. I think of you often and wonder how you manage to stay so positive. I am praying for a miracle for you.</p>
<p>I had to post to bump the thread. Needed to check on sunrise and send healing bump. Stanford announced some really promising anti-cancer treatments recently. Anyone check them out? Not in people trials as yet, but very promising.</p>
<p>Adding good thoughts to the well deserved bump</p>
<p>another bump for Sunrise…</p>
<p>Greetings! sorry for no update for a while.</p>
<p>I had two friends visiting me last week (about 9 days). Both of them date back about 40 years: our childhood days back in Asia. One is a faculty member in Minneapolis-St Paul. The other a faculty member in Asia. The three of us were very close when we were all going to school in Asia and kept in touch.</p>
<p>Especially the friend from Asia came all the way to see me in light of whats going on. Obviously, I was very touched.</p>
<p>So, we went on a whirl wind tour of Shanandoah national park, West Virginia, and Washington DC. I drove about 7-8 hours every day for a few days. My H was livid that I pushed myself thus. He is saying I told you so because as soon as I came back, I got very sick with an upset stomach, which later turned out to be (courtesy of MSKCC X ray machine) not an upset stomach but twisted bowels that connect to the stomach: a bowel blockage- hence vomiting and not being able to move food beyond stomach, and abdominal pain. This is the same thing that happened when I was in CA a month ago, and a couple of times before that. Well, at least, we know what this is all about now. Dr. S showed me the X ray image, and it was a fascinating stuff to behold - the twisted portion of the bowel was distended and about 2-3 times the size of the stomach. No wonder I felt like my whole upper belly blew up like a balloon. Are you grossed out yet? Before all this cancer saga started, I used to joke that I could digest a piece of brick. </p>
<p>By the way, my cancer antigen blood market continued to go up even after I started the
experimental off level drug. However, my research revealed that in some cases, bowel blockage causes inflammation and inflammation in turn causes the cancer blood marker go up. We will need to do another test to see whether the new drug should also be deemed ineffective or not. Regardless, there are still quite a few options, and I am not terribly concerned. I continue to feel good otherwise. By now, I am trained to think that this
is a truly a long term project, and I need to keep on trying to find what works for me. As long as my body holds up well, I am in good shape.</p>
<p>All this is just a little hiccup. What remains in my mind after this visit with my friends was how caring and attentive they were for me. They babied me like a little sister, like a mother with an infant. Somehow, I am always so surprised when people show such kindness to me. Deep down, I guess I dont think I deserve it because I am not by nature a very attentive and nurturing on a gut level. I must say, I am a conscientious person one
of my truly rare virtues. As such, I would never try to withdraw a small fortune from a bank account where I did not make any deposit. So, it is always a mild shock to me when I am showered with an act of kindness
… My two friends touched me deeply.</p>
<p>It does not look like we are going to Europe as a family this summer. My two kids’ schedules couldnt be coordinated. I am still going to Asia with S1 this is something really to look forward to. While there, I will be meeting with some magazine editors and publishers to explore the possibility of publishing my essays. I have a lot of work to do since I need to bring a good number of essays with me. The English essays I wrote cannot be directly translated. The cultural translation has to be done. As such, for all practical purposes, I need to write them anew in my native tongue. Believe it or not, I write much better, much more fluidly, and much more intimately in English, so I will have to put a lot to it to write in my native tongue. I am already a published author in Asia, so, I just need to get my bearing back.</p>
<p>I have notified Rutgers Law that I will be delay my law school admission 1 year. I applied to two schools, both of which accepted me. Rutgers (NJ flag ship state U) is my choice because its nearby and most importantly they have a part time and full time program between which you can switch any time. This is an important factor since in my condition, its not guaranteed that I can go through 3 years of law school without any treatment intervention.</p>
<p>All in all, I still feel very blessed in so many ways . However, it would be nice if I can find a treatment that works and will at least put me in remission for a while, if not for long term. that said, since my body is handling all this so well, if I find a stable solution without much disease progression, that’s almost as good. After 1.5 year of near non stop chemo with only a short break, I can still do 1.5 hour aerobics a day, drive 8 hours a day several days in a row, and remember all the little things and calculate simpler double digit multiplications in my head (no chemo brain). So, I am extremely fortunate.</p>
<p>Sunrise I’m so happy you had such a wonderful visit from your friends what a blessing such old friends are.</p>
<p>
</p>
<p>You must realize that by allowing your dear friends to comfort you…you are actually giving them a gift. So happy that you were able to act so carefree and travel with them, even though you later paid for it physically.</p>
<p>sunrise, it’s wonderful to read your updates. I’m sure your friends were so good to you because you’re very good to them. Enjoy your trip this summer and best of luck with the essays. I hope you find translating them is a theraputic exercise. </p>
<p>:)</p>