my diagnosis of advanced cancer: how to help my kids

<p>thanks everybody for great suggestions for road trips! The road to Hana is heartbreakingly beautiful indeed! We have done that a couple of times. Also, the road trip across the island of Hawaii - though rental car companies say you are not allowed to drive through this road, I think every body does it. We did ;)</p>

<p>I will definitely take all of your ideas into consideration. </p>

<p>I really like the idea of aimlessly meandering through the back roads in deep south. I have never been to that part of the country: no destination for high tech business trips there. Definitely something I would like to do - this is high on my list of “to do”.</p>

<p>Dear Friends,</p>

<p>Latest update: I have joined a clinical trial for cancer vaccine at Memorial Sloan Kettering Cancer Center in NYC. This is a trial for high risk women who just achieved their first remission. </p>

<p>During the last 4 weeks of my chemo treatment, I thoroughly researched all the options for continuing treatment (in case I don’t go into remission after the standard chemo treatment) and options to boost my odds for long term remission in case I go into remission. I got this going because regardless of the outcome of the chemo treatment, I wanted to spring right back to action to maximize my odds immediately without wasting any time.</p>

<p>Luckily, I did not have to revisit the continuing treatment option (even though I did much, much more research on this scenario). </p>

<p>The default option for those who go into remission is passive (though vigilant) monitoring for any sign of recurrence. That was not acceptable for me. </p>

<p>Any medical intervention has its own risk. As such, it all boils down to the risk/benefit analysis. If my cancer was the kind that has 95% survival odds for 5 years, the best thing is to monitor passively, since the marginal benefit of medical intervention may be at best negligible or even negative. </p>

<p>Based on everything I read, I am a very high risk cancer patient with a near 100% rate of recurrence within a couple of years (at least based on available studies and what not). For someone like me, the risk threshold is very high, meaning, a risky intervention is well worth the potential benefit. </p>

<p>I had two general categories of intervention. One was maintenance therapy: basically, what it means is that they give you chemo drugs on an on going basis at a much lower dosage. The other is joining a trial that tests the effectiveness of recurrence prevention options. I decided to join a trial. </p>

<p>My logic was straightforward. If I were a business, I am a business about to go bankrupt (high risk). A normal turn-around strategy based on cost cutting, better marketing, better quality control, streamlined distribution channel management is no longer sufficient. I need a paradigm shifting solution that will change the “vector” of the trajectory. In short, I need a new business model.</p>

<p>Even within the trial category, I chose the vaccine trial, rather than a trial involving new kinds of drugs. I concluded that a vaccine trial fits the metaphor of paradigm shift better. Instead of a drug that may be slightly better than its peers in killing off cancer cells, a treatment based on the vaccine angle focuses on the body’s own ability to fight off aggressive cancer cells. Think of it this way: rather than trying to come up with a better drone that will kill more terrorists while minimizing civilian casualty, you can arm and train the local police and military force who will take care of the terrorists on their own. </p>

<p>So during final several weeks of my chemo, I researched and picked out two trials. One is a phase II trial with random assignment (meaning, you may or may not get the vaccine). The other is a phase I trial where everybody gets the vaccine. The moment I was declared in remission, I applied to both: I had a slight preference for the phase II trial, but I may be assigned to the control group (no vaccine), and if that happens, I wanted to participate in the phase I trial. Lo and behold, I qualified for the phase II trial, but was assigned to the control group. So, the choice was made for me: the phase I trial at Memorial Sloan Kettering Cancer Center. This one has very stringent eligibility criteria, and today, I was told that I qualified. So, I AM IN. </p>

<p>Going through all this, I realize more and more how active and well thought out initiatives by the patient make all the difference. Most doctors do not recommend trials to their patients: there are so many trials going on, so other than those they are personally involved in or aware of because their institutions are involved in, doctors themselves cannot possibly keep up with all that is going on. Especially trials for those in remission has a very narrow window for qualification (8-12 weeks from the last chemo infusion). It takes about 3-5 weeks after the last infusion to confirm that the patient is in remission. It takes several weeks to go through the application/qualification process. So, unless you thought through all this while still getting the chemo treatment and know exactly what needs to be done, you won’t be able to join. Furthermore, I am glad that I applied to two trials simultaneously. If I had applied to only the one I had a preference for, for which I was assigned to the control group, it would be too late by now to start applying for the MSKCC trial. </p>

<p>So, I am officially a guinea pig now. Wish me luck on this new journey!</p>

<p>sunriseast, I am in awe of you for researching, thinking ahead, and having such a good plan.</p>

<p>I am sure if I had chemo I would have a foggy brain and not even want to think about any further action!</p>

<p>Good luck! :)</p>

<p>Congrats on getting into a clinical trial you believe in! I hope it will help you as you work to nurture yourself and live a full and active life. I admire all you have researched and your amazing journey to date. You are a great role model to your family & all of us!</p>

<p>Good for you for doing a trial!</p>

<p>I am surprised the Phase II trial told you that you were in the control group.
Most Phase II trials are randomized double blinded.</p>

<p>Sunrise, wishing you much much much luck!</p>

<p>Phase III trials are definitely mostly placebo controlled double blind studies.</p>

<p>Many Phase II trials are “open label” meaning they tell the patients which trial arm (experimental or control) s/he was put in.</p>

<p>The whole game theory applies to the decision regarding whether to join a trial and if so what kind of…</p>

<p>I don’t know what to say other than thank you for being a guinea pig. Thank you a thousand times over. You will have to keep us posted. I hope all goes well for you.</p>

<p>sabaray,</p>

<p>I don’t think I deserved to be praised for joining this trial. I am doing this strictly for myself, not to advance the cause or help others.</p>

<p>The by product of me doing this trial will advance some scientific findings and may end up helping other women, but since that was not my goal, I can’t claim any credit.</p>

<p>Nevertheless, thank you!</p>

<p>There is always some self-interest in joining a trial, at least there was for all the ones I & our family have participated in. They try to design the trials to be attractive enough to draw people because few are purely altrusitic anyway. Thanks, Sunrise, for all you do to let us know your thoughts and how you’re moving forward. Many of us proceed along similar journeys and it’s nice that you are so open and sharing.</p>

<p>I have been in several trials, as have H & D. I think they are generally good, as long as our docs feel the benefits outweigh the risks for our particular issues & situation.</p>

<p>You continue to amaze, sunriseeast! If anyone deserves to beat this thing, you do!</p>

<p>I am in awe of your focus, attitude, and research skills, not to mention your writing skills. If I may ask, how did you find the trials?
Best wishes for a successful result.</p>

<p>over30,</p>

<p>I had given myself a crash course on ovarian/uterine cancer during last 6 months. In the process I learned that during last 10-15 years, there has been a very limited success on the “new killer drug” front. The usual “let’s find a drug that will kill the cancer cells better” approach has been explored to the Nth degree, and the marginal gain on this front is becoming less and less meaningful. </p>

<p>I realized that that if there were to be a paradigm shifting success on the treatment front, it would be in the immunology related treatment - vaccines and what not. this is where the maximum gain will be made since it has a tremendous headroom for further development.</p>

<p>As I mentioned in my previous post, I am a very high risk patient. I had to explore a paradigm shifting solution, NOT a solution that will produce incremental benefits, even if it’s more of a sure thing. </p>

<p>So, once I decided on the vaccine trial, I surfed the net thoroughly and came up with the two that seem best suited for me. And, in the end, I chose one that will give me the vaccine, NOT put me in the control group.</p>

<p>by the way, Memorial Sloan Kettering has a completely digitized on line access for all the test results, treatment activities, billing, etc.</p>

<p>You have NO IDEA how I was literally aroused as I was going through the on line account activation process and finding all the lab results right then and there at my finger tip. They even provide a trend analysis on your key numbers. For a type A freak like me with a fetish for numbers and data, this is an unbelievable treat. </p>

<p>Ahhhhhhhh the white blood count here.
OOOhhhhhhhhhhh the red blood count there.
ah, ah, ah cancer antigen marker number!
Yooooooooooo albumin count!
Ummmmmmmmmmmmmmmmm glucose count…</p>

<p>Need I go on? I feel like Sally in the movie “when Harry meets Sally”</p>

<p>Don’t laugh and snicker. We ALL have our own perversion. It’s just that I am more open and willing to admit it.</p>

<p>Thanks for the response. I wasn’t sure if there were “secret” medical sites you used.</p>

<p>over30,</p>

<p>actually,there is a web site where you can go and look for trials that are of interest to you.</p>

<p>all trials have to be approved by FDA (I believe: some kind of government agency), and there is a central site where you can go and search for the right trial for you.</p>

<p>It’s: [Home</a> - ClinicalTrials.gov](<a href=“http://www.clinicaltrial.gov%5DHome”>http://www.clinicaltrial.gov)</p>

<p>however, you have to know pretty much what you are looking for since the search is non-evaluative and results are completely driven by key word search. Meaning… you have done all your homework, all your research, and all your self education, and you use this sight to see what kinds of trials are available that meet your criteria. You also have to be able to decode gobbledygook geek lingo that is the description written on the web to decide whether that’s a right trial for you.</p>

<p>Sunrise, even if you are driven by your personal reasons to join this trial, you still deserve huge applause for doing this. Being a guinea pig for a Phase I trial (which determines safety of a medication) is not a decision most people would make in a heartbeat. The biotech and pharmaceutical community is very thankful for people like you.
All the best to you in your journey.</p>

<p>Naturally, no one would do the trial unless they could benefit, but to do so will hopefully benefit many others, so Sunrise, you are doing a service to others. Good for you. I hope this turns out well for you, the drug, the research etc.</p>

<p>Hello Sunrise East</p>

<p>I have been following your story and truly admire your tenacity and attitude. Great news about being accepted for the trial. As someone recently told me in the health care field, “you have to be your own advocate.” Most people aren’t able to do that. </p>

<p>I am sure I don’t have to tell you about the great reputation MSK has in cancer treatment. Your positive attitude, tempered with a realistic eyes open view, will serve you well.</p>

<p>Thinking of you as you forge ahead.</p>

<p>Thanks everybody for the “praise” for joining the trial. As I mentioned earlier, it’s really for me that I am doing this, but thank anyway.</p>

<p>Some clarification on the meaning of joining a clinical trial:</p>

<p>I have a very realistic expectation. The odds that the vaccine I am getting will turn out to be a magic bullet are pretty low. </p>

<p>Everybody agrees that if there were to be a major paradigm shifting breakthrough on the cancer treatment front, it would come from the immunological side of the camp (vaccines, etc). Vaccine trials have been going on for some years, but, they have yet to find that singular magic bullet yet. Eventually a major advancement will be made, but we don’t know which one it is and when it will be. One more reason to hang around long enough for the next major breakthrough. I would hate to be that chess piece on the board that was taken out right before the whole game changed. If not outright cure, which, based on the current map of the landscape, is not likely for me, a carefully managed status quo that buys me time while the research community is working their butt off is a very good strategy for me.</p>

<p>I am very optimistic about my prognosis, but that optimism is based on doing 10000 things right that will each up my odds by 0.1% at a time. I am a statistician at heart, and I don’t believe in a single magic bullet that will solve the whole problem, a divine intervention, or a miracle from nowhere. Each and everything that I do that will just slightly increase my odds will eventually, collectively, let me be a long term survivor. This is what I am aiming for. This is what I practice every day, from doing a regular exercise to eating super healthy, to keeping up with all the advancements and development in the research community, and constantly learning more about the bio/chemical nature of this companion of mine that I did not chose to be with but coexist with I must. </p>

<p>Joining this clinical trial reflects this same attitude and plan on my part. No magic bullet, but another factor that may contribute to that “collective improvement” in my odds. </p>

<p>Optimism must be earned, and justified by the actions. This is the anatomy of my optimism.</p>