Mets Day 639 - Talking with my doc about this week's scan

This afternoon Jennifer and I met with my oncologist, Dr. Aragon-Ching, to discuss last Tuesday's scan, and to consider my treatment options.  We had the misfortune of having an afternoon appointment, and ended up waiting for two hours after after our appointment time -- an unusually long wait even for GW.  While waiting, I had my blood drawn and labs run, and all my counts were fine.

When we were finally joined by the doctor, she gave us a copy of the NIH scan report.  It found an "unchanged 0.8 cm left sub clavicular nodule partially imaged on the first slice."  The lungs were clear, and everything else in the abdomen was "unremarkable."  Dr. Aragon-Ching said that this report was the best news that she could expect.  She said that there was no way to know if the cancer stopped progressing because of the ddMVAC chemotherapy, or if would have done that anyway.  However, she was inclined to believe that the chemo had some effect, because this scan again measured the node at .8 cm, which was slightly smaller than the pre-chemo scans.  This suggested that the chemo may have caused the metastatic cancer to not only stop growing, but to slightly recede.  She also said that it was unlikely that more chemo would have caused the cancer to shrink any more, so stopping the chemo after three rounds was a good call: I was able to enjoy the cruise and the holidays chemo-free, and didn't give anything up by not doing the last three rounds.

Dr. Aragon-Ching recommended that, for now, I not resume ddMVAC or have any other therapy.  Instead, she recommended that I have regular scans (every 2-3 months) and monitor my mets, and wait and see if it starts to spread.  It's highly likely to do so -- spreading is what this type of cancer likes to do -- but until it does, she saw no need to subject me to any further treatments.  She reiterated how all of my treatments are not intended to be curative (because doctors don't know how to cure metastatic bladder cancer), but are intended to be palliative by helping to perhaps slow the progress while easing my discomfort.  Ironically, through my entire cancer journey, all of my discomfort has been caused by the side effects of my cancer treatments:  the first round of chemo; the recovery from surgery and my continuing efforts to manage my neobladder; and the nadir of the ddMVAC chemo. 

Another benefit of not having had all six rounds of ddMVAC chemo, my doctor said, was that, if and when the cancer resumes spreading, we can go back to ddMVAC again, and see if it will work a second time.  She observed that, even though the ddMVAC chemo wiped me out with overwhelming fatigue, I never reached the limits of toxicity.  That option likely would not be available if I had done all six rounds, since I'd probably have reached maximum cumulative toxicity.  I was happy to defer the thought of further chemo into the undefined future.

I asked about the lingering effects of the chemotherapy.  I noted how my feet get colder faster, and take longer to warm up.  I've especially noticed this at night.  While I was in the middle of chemo, I sometimes would alternate holding the heating pad on my abdomen, and my feet.  I have not needed a heating pad on my abdomen since I ended ddMVAC, but my feet feel like blocks of ice at night -- far different than before the ddMVAC chemo.  Dr. Aragon-Ching said that cold feet is a type of neuropathy, a known side effect of ddMVAC chemo.  She said that, of the 5% or so of patients who have neuropathy, sometimes it is very painful, such as persistent pins and needles, or stabbing pains.  She said that some patients with neuropathy see the symptoms lessen over time, but most of the time it is a permanent shift.  I guess I'll live with it -- especially if Jennifer continues to let me warm up my icy feet on her. :)

More importantly, I am concerned about the ongoing shortness of breath that I routinely experience whenever I exert myself.  For example, yesterday I carried two boxes of Christmas decorations down to the basement, and was sucking air after the second box.  That's way out of character for me.  After a bit of snow fell over the holidays, I was gasping after a few minutes of pushing snow with a shovel.  Dr. Aragon-Ching initially guessed that it was a lack of conditioning, but I knew it was something more -- it's like my lungs could not exchange enough oxygen.  She observed that, in rare cases, the adriamycin (the "A" in MVAC) can affect the heart.  Even less common is the risk of PE, or pulmonary embolism, which is a blockage of the main artery of the lung by a blood clot.  She ordered a couple of tests -- an echocardiogram to check my heart, and a ventilation/perfusion scan (v/q scan) to check the circulation of air and blood in my lungs.  I'm scheduled to have both of those scans on January 23.  If anything suspicious is found, she'll go forward with a full-contrast CT scan.  In the meantime, she encouraged me to slowly ease back into some regular physical activity.  

She also renewed my prescriptions for Ambien CR and Lunesta, which I usually alternate taking each night to help me sleep through my unpredictable nocturnal incontinence.  

After we were done, she had me go over to the infusion lab so my port could be flushed.  It had been two months since it was accessed, and she did not want it to get blocked, like it did in 2012.  That took another hour or so of waiting for a 30 second procedure.  All in all, we were at the GW offices for nearly 4 hours.  Jennifer and I had been expecting to go out to lunch after were were done; it turned into an early dinner.  

On the drive home, we talked about what this means.  It's obviously good news that the cancer has not spread, but we continue to understand that it continues to be a question of time.  This scan alleviates short term concerns, but as John Meynard Keynes observed, in the long run we are all dead.  I don't know how long my run will be, but give thanks that for now the sun is shining.