<p>sunriseeast,</p>
<p>Your posts have been so inspirational to me as I go through my own cancer journey this year. I see you as a role model for handling adversity with dignity and grace. Thank you.</p>
<p>Those of you who remember what happened to me last time - I was booted off of the clinical trial because the CT scan revealed two new tumors they believed developed WHILE I was on the trial protocol.</p>
<p>The disease progression defined as such is an automatic condition for trial termination. </p>
<p>I rejected that assessment based on all other data (TSH hormone level which for me moves up and down together with my cancer activity, cancer antigen blood marker, my own general sense of well being, AND my own internal cancer-O-meter that registers activities of the tumors and report to me about the intensity). My explanation for the appearance of “new” tumors was that they developed BETWEEN the time the scan was taken BEFORE the treatment started to kick in (about three weeks). Given how aggressively my cancer moves, three weeks is a long time for it to do crazy things. (by the way, most women with my diagnosis have blood marker rise for several months before anything shows up on the scan. In my case, it took less than two weeks from normal blood test to 13 x 8 mm tumor showing on the scan). My assessment was, the “new” tumors were actually “old” tumors created before the treatment started to work, and if anything, the treatment was working.</p>
<p>Furthermore, I have a past history from my front line chemo therapy that shows that unlike most cancer patients whose tumor gradually shrinks when the treatment works, mine DIE first without any shrinkage in size and then the body melts it away later.</p>
<p>The doctor would not agree with the assessment. Besides, he had to go by strict guideline on this trial: his hands were tied. So, I was booted off of the trial.</p>
<p>But, trial or not, I needed to know what’s really going on. If I am right, I can continue to trust my own subjective assessment as a diagnostic and prognostic tool. If I am right, it means that the drugs that were part of the clinical trial can be used later if/when I need them since I can see that they worked. </p>
<p>Well, one way to see what’s really going on was to get the PET scan. CT scan shows you the “mass”. PET tells you how metabolically active it is. So, I got the PET scan. The results came back a few days ago. It supports my conjecture. Thought it’s not completely clean (meaning, negative), it shows reduction in cancer metabolic activities. This was compared to the PET scan taken on three week before the treatment kicked in. I bet: had I had a scan right before the treatment kicked in, the new PET scan would have been a VERY SIGNIFICANT improvement over that. My cancer-O-meter was literally going crazy day by day between the time the original PET scan was taken till the treatment kicked in. If the clinical trial protocol had not been working, the PET should have shown MUCH BRIGHTER spots all over the place - I should have lit up like a Christmas tree! (“lit up” is bad: it’s an indication of metabolically active cancer cells).</p>
<p>I believe the baseline scan for gauging the effectiveness of the clinical trial protocol was too old for the speed my cancer progresses. </p>
<p>Well, I was booted off the trial anyway, and I can’t go back in, but it was good to know that I can continue to trust my subjective assessment of how things are. Most importantly, I “rescued” a powerful drug from a trashcan. In all likelihood, my cancer will be managed as a chronic condition and in order for this strategy to work, I need as many “arrows” in my quiver as possible. Running out of workable treatment is a really grim news.</p>
<p>Meanwhile, I am on a new treatment, and my cancer-O-meter tells me that it’s working. The signals are now coming VERY infrequently and VERY faintly.</p>
<p>So, during last four weeks or so, I went to hell and came back. I was a patient who keeps failing on new treatments (pretty depressing and grim) and now I am a patient with aggressive tumors but the tumors respond to any kind of treatment - whatever treatment they throw in, it works. A night and day difference, indeed. I feel like I went to hell and came back.</p>
<p>Furthermore, I also do not accept the verdict that the drugs that were used for my original treatment are no longer usable because they failed to put me in remission longer than 6 months. When I was declared to be in remission, I had an instinct that I was not done yet: I started off with a large lime sized tumor, and I felt that I need a couple of more cycles to really get to the root of it all. My doctor did not agree, and since nothing showed on the scan, and the blood marker was normal, we terminated the treatment and declared victory. Looking back, I think my instinct was correct. As such, I refuse to believe that the drugs that miraculously melted away a large tumor were suddenly deemed “ineffective for further treatment” since they gave me only three month remission. I think the drugs were very effective: I quit too son.</p>
<p>If you let me pat my own back a little here: this is a story of how important informed patient’s self advocacy is and how subjective assessment of a patient well informed and in tune with their body can trump at times the results of tests and what not.</p>
<p>How about a BIG pat on the back for you! I have been waiting (im)patiently for your good news, as you clearly are far more attuned to your body than your medicine men. Keep up the good work! ;)</p>
<p>Sunriseeast: thank you for continuing to share your journey with us. You are such a source of strength to so many of us, whether we face a similar struggle, or just dealing with the challenges of life.</p>
<p>Thank you also for showing how we absolutely must be our own advocate and fight with all we have got to give our instincts priority. </p>
<p>You are an inspiration!</p>
<p>sunriseast, a big pat on the back and sending cyber hugs to you too!</p>
<p>sunrise, thank you! I’ve been somewhat worried about your silence, but know you, I was keeping my fingers crossed that you were simply too busy to post… Your story is an inspiration to all of us and a reminder to not be afraid to be our own advocates.</p>
<p>“Meanwhile, I am on a new treatment, and my cancer-O-meter tells me that it’s working. The signals are now coming VERY infrequently and VERY faintly.”</p>
<p>Fingers crossed.</p>
<p>sunriseast–you are simply awesome!</p>
<p>thanks everybody.</p>
<p>Actually I don’t think my doctor would agree with my assessment wholeheartedly. Nothing short of a clean, negative scan would convince him that the treatment they deemed to be a failure was actually working.</p>
<p>However, I am satisfied with the latest turn. He does not have all the data I have and wouldn’t be able to see the correlations and patterns that I see. As good as he is, he has many patients to keep track of. On the other hand, I have only ONE patient to take care of: ME. So, nothing escapes my attention. Besides, I was trained as a statistician. I love numbers and trends and they love me back: they reveal their secrets to me. I was charting all the numbers, even the numbers that the oncologists don’t automatically look for (like TSH hormone level), and found a very clear correlation between them and “my” cancer. that’s how I knew that the treatment was working - and, of course, my cancer-O-meter…</p>
<p>The issue of who is right is not about vanity. It’s actually very important for prognosis. If they deem certain treatments a failure, they would remove these arrows from the giver. As it stands now, the worst nightmare for a advanced stage cancer patient is to run out of the arrows. So, we should NEVER throw away a good arrow. This was why was so important to me to find out whether the treatment was indeed a failure or not.</p>
<p>You are an inspiration!</p>
<p>Welcome back! Let me pat you on the back. With both hands. In a hug. :)</p>
<p>I’m so relieved that you found a new treatment. May you continue to prove the doctors wrong. </p>
<p>:)</p>
<p>What wonderful news, sunrise! I’ve been waiting to hear from you, hoping for this good news. I agree with your interpretation of ALL the data, and it is wonderful news that all of the drugs work well on your tumor. </p>
<p>About the residual bright spots on your PET scan - is there a chance that they reflect inflammation from your body “cleaning up” the tumor cells? </p>
<p><a href=“http://jnm.snmjournals.org/content/35/10/1653.full.pdf[/url]”>http://jnm.snmjournals.org/content/35/10/1653.full.pdf</a></p>
<p>“… Even within tumors, the totality of FDG uptake is not completely within the tumor cells themselves. Indeed, about 24%of the FDG concentration in a tumor mass, is actually in macrophages, and other inflammatory cells within the tumor itself … The biochemical process of glycolysis is reproducibly detected by this tracer. Glycolysis is accelerated in neoplasia, but it is not surprising that it is accelerated in other major disease processes as well, including … inflammation”</p>
<p>The author is chief of nuclear medicine at Memorial Sloan Kettering.</p>
<p>nymom,</p>
<p>thanks!!! This makes me feel even better… that is, the actual amount of metabolic cancer cells may be even lower than what the PET scan tells me. Indeed I think I responded to the previous treatment, and I think I am responding to this new treatment too.</p>
<p>Sunriseast: I’m so glad that things have taken a turn for the better! Keep on fighting and advocating for yourself.</p>
<p>sunriseeast,
YOU ARE MY HERO!!!</p>
<p>Sunrise, I am so proud of you for your self advocacy. You are completely right. It is not a matter of vanity it is about keeping open your treatment options. Stay focused, positive and calm and keep trusting yourself. It sounds like your doc is a pretty good egg and willing to listen. </p>
<p>Well done!!</p>
<p>sunriseeaset, I’m glad you have the courage of your convictions and the experiencial background with statistics to back you up!</p>
<p>something to laugh about…</p>
<p>Over the weekend, a couple visited us. She used to be my husbands girl friend. I became best friends with her. She is happily married now. Would you believe that she and I have a same birthday (OK she is a year older than I). Would you also believe that my husbands another ex girl friend also has the same birthday??? </p>
<p>Anyway, we ended up talking about my medical adventures. Finally, I said: OK, enough about my medical problems. Lets talk about yours. Can we start with hemorrhoids and erectile dysfunction?</p>
<p>We had a good laugh I try not to miss an opportunity to make a lemonade out of lemon…</p>
<p>Sunriseeast: You rock!!! And you missed your calling: Warrior Woman.</p>
<p>All that we are is the result of our thoughts; it is founded on our thoughts and made up of our thoughts. With our thoughts we make the world. If a man speaks or acts with a harmonious thought happiness follows him as his own shadow, never leaving him. The Buddha</p>
<p>In other words, YOU ROCK.</p>
<p>So glad to hear that you are able to maintain your amazing spirit and positive attitude. You are such an inspiration to me (and to many others). I wish I could be more like you. I am struggling–but then I think of your journey and I try to re-direct myself.</p>
<p>Thank you for sharing. You are one in a million. Sending continued good thoughts your way.</p>