Starting with the end of today here and now, we'll open this post with it's not all good news, but unclear until a deeper dive/read of the imaging taken on Monday... how bad... if at any bad. Wait, what's that mean? Exactly! How good or how bad depends upon our perceptions, entirely on each of our expectations blended with our hopes and interpretations of what we want/hope for. So were the results good?! There's no black and white, yes or no, so now to the beginning of this trip.
Madi and mama-bear left Sunday for SF. Madi had a CT scan on Monday and today Tuesday was the normal blood-work, EKG, and doctor appointment. This clinical trial coordinator provided a preliminary written report/assessment of the CT. The person who wrote that report compared Monday's CT, with the January 19th CT, and wrote the preliminary report as as he/she saw it, from the hip. Madi and mom were in the office for an hour... reports in-hand waiting to meet with the physician/NP. They'd texted a few paragraphs of a few pages to dad and for an hour we were each Googling to grasp an understanding of what the heck a 'patchy centrilobular groundglass nodule in the lower left lobe" means. Wait... "rogue lung" is her right lung. Is there a new nodule (tumor) in the left lung... or is this the left lobe of the right rogue lung? Another written observation was "Interval worsening of metastatic disease". Holy sh!t, that's hard to miss, and misunderstand, which is why we lay patients and parents need to exercise restraint not jumping to conclusions, and leave translating the data from data, to information by expert doctors. "Worsening of metastatic disease" implies the meds are ineffective. So wait, what... are they?!
In many perfect worlds, there would be no evidence of disease, the teaspoon of fluid drained every four days would be labeled "normal", and normally absorbed, so then ideally the drain tube can be removed from her chest. In this same perfect world the scans would be crystal clear and yes, and we would all sing wonders that there is a pill that eliminates all symptoms and evidence of this advanced, extremely aggressive metastatic disease in just two short months. Oh yea, and politicians would answer questions completely and honestly, and the parties would stop throwing rocks at one another.
To say the PA was upset that the preliminary report was offered to Colleen and Madi would be an understatement. Taboo I believe, for any non-physician to do what he did. We feel he's fond of Madi and believe he thought he was helping provide information but that's not necessarily the case.... in our opinions. He provided data that was interpreted by someone who only compared one CT to another, but without understanding her medical history. Our understanding was one 1CM nodule in Dec 2016, that grew to 4CM in January, and spawned other nodules. Had the person who interpreted the preliminary report ever seen images from this one in a million disease, or Madison's variation, about one in 20 million. Not likely, so perhaps he called it as he saw it, labeling it "Interval worsening of metastatic disease of disease" which rocked us until clarified.
So today was a nail-biter, all involved ready to start drinking by 10:30 AM. Heavily. What we saw in December and January... a dramatic increasing amount of fluid being drained every four days. Having started the trial meds Jan 31, we've seen decreases from ~3 cups of fluid being drained every 4 days, gradually reduced to a teaspoon. To the layman, what's that mean again? Exactly! It's subject to each persons hopes mixed with how they interpret what they read ... and what they (we) pray for. As a lay interpreter, the tumors appear to be infinitely less pissed-off given dramatic reductions of fluid pooling. That's good, yes? But wait, the notable tumors grew a tad. That's bad, correct? Depends on your own observations and expectations. So was today a good day or not? Depends upon you and your interpretations. What we perceived as explosive growth and spawning new nodules, was some slight growth. Heck, it's still early in the trial... we'll take that! We'll know more this Friday.
Notes taking by Madi and Colleen:
Madi and mama-bear left Sunday for SF. Madi had a CT scan on Monday and today Tuesday was the normal blood-work, EKG, and doctor appointment. This clinical trial coordinator provided a preliminary written report/assessment of the CT. The person who wrote that report compared Monday's CT, with the January 19th CT, and wrote the preliminary report as as he/she saw it, from the hip. Madi and mom were in the office for an hour... reports in-hand waiting to meet with the physician/NP. They'd texted a few paragraphs of a few pages to dad and for an hour we were each Googling to grasp an understanding of what the heck a 'patchy centrilobular groundglass nodule in the lower left lobe" means. Wait... "rogue lung" is her right lung. Is there a new nodule (tumor) in the left lung... or is this the left lobe of the right rogue lung? Another written observation was "Interval worsening of metastatic disease". Holy sh!t, that's hard to miss, and misunderstand, which is why we lay patients and parents need to exercise restraint not jumping to conclusions, and leave translating the data from data, to information by expert doctors. "Worsening of metastatic disease" implies the meds are ineffective. So wait, what... are they?!
In many perfect worlds, there would be no evidence of disease, the teaspoon of fluid drained every four days would be labeled "normal", and normally absorbed, so then ideally the drain tube can be removed from her chest. In this same perfect world the scans would be crystal clear and yes, and we would all sing wonders that there is a pill that eliminates all symptoms and evidence of this advanced, extremely aggressive metastatic disease in just two short months. Oh yea, and politicians would answer questions completely and honestly, and the parties would stop throwing rocks at one another.
To say the PA was upset that the preliminary report was offered to Colleen and Madi would be an understatement. Taboo I believe, for any non-physician to do what he did. We feel he's fond of Madi and believe he thought he was helping provide information but that's not necessarily the case.... in our opinions. He provided data that was interpreted by someone who only compared one CT to another, but without understanding her medical history. Our understanding was one 1CM nodule in Dec 2016, that grew to 4CM in January, and spawned other nodules. Had the person who interpreted the preliminary report ever seen images from this one in a million disease, or Madison's variation, about one in 20 million. Not likely, so perhaps he called it as he saw it, labeling it "Interval worsening of metastatic disease of disease" which rocked us until clarified.
So today was a nail-biter, all involved ready to start drinking by 10:30 AM. Heavily. What we saw in December and January... a dramatic increasing amount of fluid being drained every four days. Having started the trial meds Jan 31, we've seen decreases from ~3 cups of fluid being drained every 4 days, gradually reduced to a teaspoon. To the layman, what's that mean again? Exactly! It's subject to each persons hopes mixed with how they interpret what they read ... and what they (we) pray for. As a lay interpreter, the tumors appear to be infinitely less pissed-off given dramatic reductions of fluid pooling. That's good, yes? But wait, the notable tumors grew a tad. That's bad, correct? Depends on your own observations and expectations. So was today a good day or not? Depends upon you and your interpretations. What we perceived as explosive growth and spawning new nodules, was some slight growth. Heck, it's still early in the trial... we'll take that! We'll know more this Friday.
Notes taking by Madi and Colleen:
- Decrease in pleural thickening
- Nodularity is stable. There is a little bit of enlargement in a specific area. Will be remeasured and validated.
- The lead physician doesn't always agree with the radiology preliminary findings. Some slight increase in size in some tumors... He doesn't count it as "disease progression". (the fact there isn't explosive growth to the lay dad again, feels like good news. Many people are so full of hope expecting miracles by the 8th week may feel disappointed. Reported today, "the medicine takes a while to work" and "already seeing improvements in pleural effusions (chest fluid)".
- Doing clinically well: a good sign the drug is doing something positive
- We should have the final CT report by Friday (which will be explained by phone by the physician :-)
- Madison and mom left San Francisco with the imaging on CD. As per usual, we'll mail a copy to Madison's expert chordoma team at MGH in Boston, and another set to her local medical oncologist in Woodland Hills.
- She has 28 days worth of meds (versus only 14 requiring travel twice monthly), so going to San Francisco should only be once a month looking ahead. (woooo hooo)
|  Wait... main-lining... Vella wine in a vein via IV, is that really a thing?! Depends upon your interpretation of what "therapy" is... what do all y'all think?! |
Thanks for your support and prayers!
With Love,
The Jones Family
With Love,
The Jones Family
