<p>based on PM’s I am getting, there are lurkers who are dealing with cancer. So, I would like to just share some additional information about gauging the effectiveness of the treatment.</p>
<p>The scans. CT scan shows the presence of mass. PET scan tells you whether any mass is malignant or not (malignant cells light up). </p>
<p>Normally, they use CT scan to gauge the effectiveness of the treatment. if the tumor shrinks, great. If it grows, well the treatment is not working. This works fine for most patients. In most cases, tumors start to shrink when the treatment is working. </p>
<p>Well, I am an exception case. When the treatment is working, my tumors go metabolically inactive (meaning starting to die), but the tumor size does not change initially. The dead cells just sit there, keeping the same mass and size. In this case, CT scan will tell you that the treatment is at best able to keep the tumors stable, but not working beyond that. However, if you take a PET scan, it will show that tumors were dying.</p>
<p>Well, I was booted off of the trial because they deemed the treatment protocol a failure based on the CT scan results. The PET scan I insisted on gave me clear evidence that I was right all along. It was pretty dramatic. Several inch long “new” tumors that showed on the CT scan were dark (meaning dead) - these tumors were the reason why I was booted off of the trial. One tumor lost half of the value (brightness, so to speak: meaning they are half as active as before). Another one was barely on the threshold of “malignancy”. </p>
<p>The PET scan clearly showed that the clinical trial protocol was working very well for me. </p>
<p>I am not too sorry that I was booted off of it since the new treatment, I think, is also working based on my cancer-O-meter. However, I think it’s a shame that the clinical data will consider me as “failed case” - I think their new drug and what not is actually effective, and can help other women. It’s a shame that my data, which should have been a resounding success - is being registered as a “failure” case. </p>
<p>For those out there who are going through this journey, information is power. Self advocacy can mean night and day difference.</p>
<p>I am a researcher at heart. I turned my medical condition into a research project. An important part of research is data gathering. I requested all sorts of items to be added to my regular blood tests to see what correlates with the cancer activities and what trends there are. Lo and behold. I am starting to see a very clear pattern and trends. </p>
<p>My doctor has a lot of patients to take care of. I have only one: ME. I can analyze the data, and see the trends and patterns that the doctors miss. For instance, thyroid hormone level has 100% correlation with the cancer activities for me. The trend is so amazingly clear and flamboyantly obvious, I am wondering why oncologists do not routinely add that test to the blood test panel. It’s an amazing diagnostic tool for me. I also learned that cancer blood marker test performed at different labs using the same technique can show 20-30% fluctuation. So much for all the meta analysis studies that discuss prognostic value of nadir cancer blood marker at the conclusion of the chemo therapy.</p>
<p>I am planning to continue to gather as much data as possible. Without all this data, I would have just accepted the doctor’s verdict this time around, and not have come up with the idea of doing PET scan. It’s not a ****ing match of who is right or who is wrong. The worst nightmare for an advanced stage cancer patient is to run out of treatment options. I just rescued a very good drug from a trash can of “ineffective drugs that don’t work for this patient”. It’s important for me to know what kind of treatment actually worked and what didn’t so that I know what options I have going forward.</p>