<p>Sunrise- I am so happy for you. Once again, thanks for sharing.</p>
<p>sunrise, that’s terrific news! Thanks for sharing. I envision you as an Amazon warrior with a bow & quiver full of arrows. You are fierce.</p>
<p>Hurray! This is wonderful news! I’m so happy for you and your family. :)</p>
<p>I’m so happy to see the latest good news!</p>
<p>Fantastic news! You know, in a way, getting booted off the other trial was a good thing because it opened the door to this new drug which seems to work even better. Like that old saying, “Where God closes a door, he opens a window.”</p>
<p>Sunriseeast-</p>
<p>I have read every word of your journey on this board. As others have said, you are a warrior and an inspiration!</p>
<p>I am so thrilled to read this latest FABULOUS news!!!</p>
<p>sunrise, I am so happy for you! Really wonderful news.</p>
<p>Glad to hear of your amazing response!</p>
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<p>Arabrab</p>
<p>My doctor is part of the research team. I will let him deal with my data he sees fit.</p>
<p>Regarding a different criterion for assessment, the CT scan is still a gold standard to detect the development of new disease and gauging the progress of it. There are couple of exceptions, and these exceptions all applied to me to create a perfect storm of me being booted out of a trial that was actually working very well.</p>
<p>The two factors that contributed to this erroneous conclusion was:</p>
<p>(1) My body is able to create tumors at a lightening speed once it gets going. My cancer moves from zero to 100 miles in no time. Usually, most women will see the cancer blood marker inching up for months before anything shows up on the scan. In my case, it took less than 3 weeks from a perfectly normal (actually on a very low side) blood marker to a half inch tumors showing on the scan. Once it got going, it started to grow leaps and bounds. The treatment started to kick in 3 weeks after the scan that was taken to confirm recurrence, and that was the scan the clinical trial team used as a baseline. I bet 99% of the cases, this is a good enough a base line. </p>
<p>The problem in my case was, I could feel my cancer meter registering increasingly stronger cancer sensation all this time, and I bet the tumors managed to proliferate pretty significantly during this time. As such, when they scanned again 7 weeks after the treatment and compared that against the scan taken 3 weeks before the treatment kicked in, any conclusion was on that comparison would be a moot point for me since the the baseline scan was NOT a good baseline for me. I tried to explain this multiple times, but they wouldn’t budge. They said: new tumors showing on the new scan that were not there in the previous scan. treatment failed.</p>
<p>I think one suggestion I would make is, to account for rare cases like me, the should use the scan as a baseline taken immediately before the trials starts.</p>
<p>(2) Another exceptional case for me is that I am not like most cancer patients whose tumors gradually shrink when the treatment is working. In my case, when the treatment is working, the tumors become metabolically inactive (meaning, dead) first while keeping their original shape and size, and then, the body flushes out. As such during the early phase of the treatment, the CT scan does not tell me whether the treatment is working or not since the CT scan just shows the “mass”. It takes PET scan to see whether the tumors are alive or dead. </p>
<p>In my lastest PET scan, none of the three tumors that showed up on the CT scan (about an inch each: three of them) lit up sufficiently to have a quantifiable measurement, though the PET still shows traces here an there. Meaning, they are mostly (but not all) dead but still hanging around there without losing any of their mass and size. This conclusively proves me right: that is, the previous treatment was very effective. Again, mine is a pretty rare case. I knew this is the way my tumors operated because I have seen this movie before: during my front line therapy earlier this year. </p>
<p>Well, the trial design and assessment criteria are all right for 99% of the patients, I bet. I just turned to be an exception, and if I had not been collecting all sorts of data and compiled my own unique patterns and trends, I wouldn’t know any better than to accept their verdict. A squeaky wheel gets the oil!</p>
<p>I rarely post or visit CC. Yet, it’s your post that keeps me coming back for updates. Your latest post made me sob with tears of joy.</p>
<p>Keep fighting! Yu have an army behind you and rooting for you.</p>
<p>Fantastic. Truly astonishing. Have very happy holidays.</p>
<p>Wonderful wonderful news!!! Hope you keep writing your book - the researchers need to have more input from patients like you!!</p>
<p>Good news! Please consider sending your info to another part of the research system in case someone else jumps on the PET scan idea sooner than your doctor’s input would do so. It is so unfortunate for you that you had to be one of those with cancer but so lucky for the rest of us and future patients someone with your abilities to analyze things and write about them did. Please share your CC writings with the world. </p>
<p>Enjoy the holiday season to the fullest.</p>
<p>I kept the CC friends up to date on latest turn, but I went AWOL with my off line friends. This is the update I am sending to them. You know what happened lately here, so you can read the first paragraph and skip straight to the ending…</p>
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<p>First of all, I would like to apologize to my friends and family members for not having sent any update for a while. I pulled the classic Dickensian “seduction and abandment” trick off on you all. After all, I turned my medical saga into a mini reality show - only through a written medium though: I would never debase myself or insult the intelligence of those who love me by having full on YouTube moments that lack any self introspection on my part. And, after you all got really hooked, I pulled back just when the plot started to thicken. I have reneged on the responsibility as a producer, a director, a lead actress, and a reporter of this reality show. I violated the most sacred tenet of a show business. That is, the show must go on – no matter what. The fact that main character was having a crisis should not be a reason to stop the show!</p>
<p>Well, in my defense, I would say, last few weeks have been rather rough on me – and, my husband too, of course. And, I needed some space to sort a lot of things through. When I face a crisis, I experience it intensely and fully. Then I go into a problem solving mode. At this phase, I need to objectify the situation I am in so that I can solve the problem in a dispassionate and objective manner. I have to maintain some distance from well wishers. I can’t afford to get sucked into emotional loop over and over again by getting sentimentally engaged with my friends and family members. I do apologize that I abandoned you, but I hope you understand I needed to get through this phase in a way I know how to. </p>
<p>I shared with you in my earlier updates that the treatment on the clinical trial was a bit arduous: I did not have any side effects to the main chemo drug (Doxil), but the experimental immune enhancing drug knocked me out cold for several days after each weekly injection. However, I really did not mind it at all. It was all worth it because I felt that the treatment was working. I felt better day by day. My appetite was coming back. My internal Cancer-O-Meter was registering fewer and weaker signals. Every feeling and sensation from my body shouted that the treatment was working. I had absolutely no doubt that this treatment would put me in remission, and was already thinking about what kind of maintenance strategy I should devise so that this second remission would last long.</p>
<p>Then I had a status check CT scan on Nov 8th. Much to my surprise, I was told that the treatment was a failure, and they would have to take me off the trial since while on treatment, the cancer progressed, as evidenced by two new tumors each the size of a large grape. It hit be like a brick. Both because it was so incongruent with what I was feeling and sensing, and because of the grim implication of it. </p>
<p>I could easily see the familiar pattern. Women with my diagnosis failing one treatment after another is sadly a common occurrence. After all, five year survival odds with my diagnosis are at best in mid teens and at worst in low single digit. How you do think that number remains so low if all of us keep on living? When I beat the odds and managed to get into remission after the first treatment earlier this year, I really thought that I would be the one to emerge as a statistical outlier. Instead, in a short four months, I found myself on board a train speeding away in an opposite direction from my intended destination, full of other similarly unfortunate passengers who, by being on that train, would allow a few lucky ones in a less crowded train moving in the other direction to balance those of us out and preserve the mythical statistical average. So, when I started on a clinical trial protocol, and when I felt that the treatment was working, I felt like I got a second lease on life. That, I will be the one who would beat difficult odds again: after all, the odds of responding to the second line treatment after such a short recurrence is in low twenties or teens in general, and much lower for those who started with my type of advanced diagnosis. </p>
<p>So the news of “failed treatment” hit me really hard. Where have I gone so wrong, how could my body have told me all these lies, and how could I have been so blindsided? My doctor had absolutely no doubt that the trial was a failure and I needed to get on a new treatment. When I explained to him that I was feeling better and better every day, he attributed it to the scenario that the treatment was working for a while and made me feel better but it stopped working – that happens too, I must admit. The air tight evidence of a “guilty” verdict from my doctor was the undisputable mid treatment CT scan reports that showed two large grape sized tumors in addition to the one that was on the original scan taken at the time when recurrence was confirmed. The “disease progression” while on treatment is an automatic condition for clinical trial termination, and the operational definition of disease progression is new tumors on the CT scan.<br>
I brooded - a lot. And I cried a bit. Then I started to think…. Always a sinister and dangerous hobby on my part. I went back to all the clinical data I have been collecting on myself since this whole journey started last December. I am a researcher at heart, and I turned my medical condition into a grand research project. An important aspect of a successful research project is meticulous collection of all relevant data. When I started the treatment for my recurrence, I requested a lot of additional items to be added to my blood tests, and I started to “study” them to see if there is a pattern or a trend emerging. And, YES. I found several interesting patterns and trends my doctor missed. He is very good, world class. Even so, everybody’s body is different. Everybody’s reaction is different. He takes care of many patients. I take care of only one patient: ME. I could see what the doctor missed. I analyzed several variables that for me seem to rise and fall in a near perfect correlation with the cancer activities. All this confirmed my assessment, that is, the treatment was working, and I was responding very well and on my way to remission. </p>
<p>More important than anything objective and quantifiable by modern medical equipment and test devices is my own Caner-O-Meter. I can actually feel the presence of cancer tumors. My Caner-O-Meter registers signals, like zapping electrical sensations, where the tumors are. I had very strong and clear sensations at the time of initial diagnosis. After surgery, most of it was gone, but still enough left. Then once the front line treatment started earlier this year, these sensations started to abate. That’s how I knew that the treatment was working then, and I was right. I knew when I recurred before any test and scans. My Cancer-O-Meter was already telling me that there is something going on. That meter started to register increasingly stronger signals till the treatment started to really kick in. Then, the signal got weaker by the day. This is what convinced me more than anything else that the treatment was working.</p>
<p>The only piece of puzzle that did not fit is the CT scan results that showed new tumors. Indeed, if these new tumors developed while I was on treatment and if they are metabolically active (live and malignant), no matter what all other data I collected say or how I feel, I would have to agree with my doctor. But, I had a very good reason to believe that these tumors were not created while on treatment, and a suspicion that they may not be all that metabolically active (meaning, on their death bed). This has to do with the fact that they baseline CT scan they were using to gauge the effectiveness or lack thereof of the new treatment was taken three weeks before the treatment started to kick in. For a vast majority of patients, this is good enough a baseline since tumors do not develop so fast and three weeks does not make a much difference. Furthermore, for a vast majority of patients, when the treatment is working, the tumors started to shrink, and this would show on the CT scan. </p>
<p>It so happens that I am an anomaly. My body defies conventional assumptions. My cancer can move from zero to hundred miles in no time. For most women, the cancer antigen blood marker (CA125) rises slowly for several months before anything shows up on the scan. In my case, it took less than three weeks from perfect blood test to several tumors on the CT scan. Furthermore, when the treatment is working, my tumors do not shrink for a while. They get deader, but they don’t shrink. Only when they are metabolically inactive, the body mops it away. I have seen this during my front line therapy earlier this year. My surgery left a good lime sized tumor behind that couldn’t be resected. Two month into the chemotherapy, it did not shrink. In another two months, it completely melted away. Highly unlikely that the treatment only started to work during the latter two months. A most likely explanation was the tumor first died, and then the body flushed it out. </p>
<p>I explained all this to my doctor, but he was very skeptical. Furthermore, regardless whether he agrees with me or not, I had to be taken off the trial since the protocol is strict, and by that definition (CT scan based), the treatment failed. He gave me two choices for the next move: another clinical trial consisting of an experimental drug, or a conventional treatment. This time, I chose the latter. I am a high risk patient, and I couldn’t afford to rely on a single agent treatment of an unproven drug. I am also at an early phase of my journey. Not having exhausted all available, proven drugs that might work for me, I am not desperate enough to go completely experimental in my treatment. I needed and could afford to rely on a conventional treatment this time. So, the new treatment started on Nov 18 – my birthday. There was an administrative goof up, so I ended up staying at Memorial Sloan Kettering from 9 till 6. The nurses gave me a piece of leftover cake from the farewell party for one of their colleagues who was heading to California. A truly memorable birthday, I must say. </p>
<p>One thing I asked of my doctor was to give me a PET scan. The CT scan shows you the location and size of the tumors. The PET scan tells you whether they are metabolically active. Normally, the CT is a gold standard since it gives you more accurate information about disease progression or lack thereof. Since the odds of tumors hanging around after they are dead are very small, the PET scan is not used on a routine basis. However, I felt that I am an exceptional case. I needed the PET scan to find out what really happened with the clinical trial protocol I was on. I needed to know whether it was indeed a failure or not. If I were right, the PET scan will come out mostly dark (the active tumor light up). If the scan lights up like a Christmas tree, I would know I was wrong and the treatment indeed failed.</p>
<p>I needed the answer one way or the other. Not to prove who is right: I or my doctor. There are very practical reasons. First, I needed to know whether I could continue to trust my subjective assessment. If I was right, I can continue to rely on my instinct and the trends and patterns I see among a myriad of medical data I have been collecting on myself. This is a powerful asset. If not, I should be very careful not to be deluded into thinking one way or the other when the other data do not back it up. Second, if I am right, I need to make sure that in the future if I ever join another clinical trial, they take a baseline scan immediately before or after the trial protocol starts. Otherwise, there may be a repeat scenario of being booted off of a trial treatment that is actually working. Third, I could repeal and make a case for getting back on trial if I prove that I was booted off of a life saving trial protocol for a wrong reason, and the subsequent treatment is failing – this would be done on a humanitarian ground. Last, and most importantly, if I was right, and the treatment was working, then the Doxil, the main chemo drug of that protocol, could be used again later when/if I need further treatment. This is a very important point. Women with my diagnosis succumb when they run out of drugs that work for them. No more arrows in a quiver, and you become part of the statistics. This is why the verdict of “failed treatment” was so scary. If I was right, I can rescue “Doxil” from the trash can of drugs that were deemed to not work for me and put it back to the quiver. One more powerful arsenal I can deploy later.<br>
So, the PET was taken, and I waited for a week for results. A nail biting period. The results came out. There were some scattered spots which lit up dimly (borderline significance). This did not surprise me since my Cancer-O-Meter was still registering some weak signals here and there. However, none of the tumors on the CT scan managed to light up. In my mind, this conclusively proves my point. That is, the tumors were created before the treatment started to kick in. The treatment was effective, and the tumors were mostly dead though they showed up on the CT scan.</p>
<p>My doctor is still skeptical. He still compares the latest scan to the scans taken three week before the treatment kicked in. However, he did mention that going forward, he would consider Doxil as one of my options. A good friend of mine who is a gynecologist practicing in Manhattan told me that Memorial Sloan Kettering is fairly rigid, and this is about as good a concession as I am likely to get. This is good enough for me. It’s not important to prove who is right or wrong. It was important for me establish firmly that Doxil is an option for me as an effective treatment going forward when and if I need it in the future. </p>
<p>But with this good news, I was still not out of the woods yet. I needed to wait and see if the new treatment was working or not. As mentioned earlier, the odds of any second line treatment working for someone like me is pretty low. It would be really regrettable if the new treatment was not working – it would mean, I was booted off of a life saving treatment that was working, and was put on a treatment protocol that is not working. What a shame that would be! My Cancer-O-Meter told me that the new treatment was working , but I can never be sure.</p>
<p>The new blood test results came out this past Friday – this is an indication of how well the new treatment is working. The cancer antigen number dropped like a rock! In fact, it dropped faster than anytime during my very successful front line therapy earlier this year. This new treatment is also working! So during last 5 weeks or so, I went to hell and back. I was labeled as an advanced stage cancer patient who is starting to fail on treatment for recurrence (we all know what this means) to a patient with aggressive tumors but the tumors that respond to all sorts of treatments – anything they throw, it works. A night and day difference, given that my realistic scenario for long term survival is a well managed chronic disease with a variety of viable treatment options.</p>
<p>So, I am in a celebratory mood this weekend. Yet, I know how precarious this is. For patients like me, the treatment that appears to work initially can stop working later even during the same treatment cycle. Furthermore, even if I go into remission again, it is extremely unlikely that it will be a permanent remission. A realistic scenario of long term survival for me would consist of a series of a meaningfully long remission followed by recurrence and a successful treatment that will again put me in remission and buy me more time. There will be periods of rough going, but hopefully good times will outweigh the rough times. It is a series of seduction, abandonment, and seduction again. Coming out ahead with the disease once again in a dormant form would be a delicious seduction. But I understand this fickle lover of mine will abandon me periodically. But I hope he comes back. I hope he seduces me again. I hope each phase of seduction is sweeter, and last longer. I hope each phase of abandonment is shorter and less bitter. But more than anything else, I hope through repeated cycles of seduction and abandonment, I maintain a sense of hope, dignity, and love of life. I hope I will be loved and I will love those dear to me. I hope I will never lose the sense of wonderment for what life has to offer. I hope I will never lose my wanderlust that so far took me to many hidden corners of this world. I still have to visit all the countries that end with “stan”. I have much to hope for and much to live for. And, for that, I will gladly live through cycles of seduction and abandonment. Actually, the prospect of abandonment makes each phase of seduction that much sweeter and poignant……</p>
<p>So, throughout last year, I seduced all of you with a tantalizing invitation to dance with me in this journey, and for a while, I abandoned you. But I am back. Love me as I am while I am here to seduce you once again into this intimacy.</p>
<p>Excellent news! Keep fighting, your journey is inspirational.</p>
<p>YAY! We love good news! We’re richer having read about your journey, and we are willing to read whatever news you want to share. But so glad you caught a good break.</p>
<p>Post # 1114 is an incredible post…</p>
<p>I am glad to read that Doxil can be used again…</p>
<p>Wow. Your friends will be very glad to get this message! :)</p>
<p>By the way, I forgot to add: I am doing remarkably well. Just like during my front line therapy, I am thriving on Chemo. Full of energy, and no side effects. Only blood count dropping, but that can be managed with caution and, if needed later, blood count boosting shots. This new regimen is causing water retention so I am bit puffy, but that is easily reversible as soon as the treatment is over. </p>
<p>During last 12 months, I had a major surgery and non stop chemo one way or the other except for the four months break. Yet, I am none the worse for the wear and tear. In fact, with my super healthy eating habit, I feel better than ever. This is why I think I have a good shot at being a long term survivor - my body can handle non stop, punishing treatment. The trick is not to run out of options… Hence, the significance of “restoring” Doxil to my quiver…</p>
<p>Thanks for your kind words .</p>
<p>Wow, the stuff about your “Cancer-O-Meter” is amazing.</p>
<p>Good wishes for a full recovery and have a blessed holiday with family and friends.</p>