ddMVAC chemo day 21: this regimen sucks

It's official:  this ddMVAC regimen is really, really hard.  The past seven days has been a lost and wasted week with little positive quality of life.  For the most part I have been unable to eat, sleep, read, move, talk, or even think.  I shuffle from my bed to a chair and ease myself down, breathing hard from the effort of moving 20 feet.  I go upstairs one step at a time, pausing to gather myself before I take the next step up.  I merely subsist, waiting for time to pass and for my body to recover.  There is little I can do to address my impotence, or salve my frustration at being unable to do the things I would like to do. 

Each round of chemotherapy has a cumulative effect, which means that it's harder to recover from round 2 than round 1, and round 3 will be harder than round 2.  There is the real risk that my body may never fully recover from the effects of this regimen, and that by doing this so-called therapy, I have done permanent harm to my system.  My hopes that my body could endure this type of chemotherapy are nothing more than a bitter metallic aftertaste.


Last night I sent my oncologists the following note:

Drs. Aragon-Ching and Apolo:

I'm just emerging from round 2 of ddMVAC, and feel like crap -- ongoing mouth sores, fatigue, GI system distress, lack of sleep.  My quality of life is not so good since I started this therapy.  I am seriously questioning how much longer I can stick with it.  I'm meeting with Dr.
Aragon-Ching tomorrow for labs and to consider my options.  Would it be possible to schedule a CT at NIH after round 3 so we can perhaps find out if my cancer continues to spread (like it did during GemCis)?

FYI, enclosed is a recent NY Times article (link here) on immunotherapy.  Dr. Apolo, you had mentioned immunotherapy as a possible option.  Has there been any further progress using this therapy with mets bladder cancer?

Thank you for your ongoing care,

Ken Brothers

Dr. Apolo responded withing 10 minutes as follows:



We can do a scan after cycle 3. Contact Kattie with the best dates and she can help you arrange this.
We have a PDl-1 study at the NCI and there are 2 at Hopkins. These are good options in the future but for now we have very little data in bladder cancer.

Today Jennifer and I met with Dr. Aragon-Ching, who said that she had traded further emails with Dr. Apolo regarding my treatment.  They both are concerned that this chemo seems to be demanding a particularly high price from me.  They fully agree with my decision to not do round 3 next week, but to give me at least an extra week to recover.  Dr. Aragon-Ching indicated that, if my mouth and throat sores caused by my mucositis do not get better, there is a chance that she might recommend that we pull the plug on this therapy after two rounds.  If I do recover, and I am physically and emotionally ready to do another round, then we'd do it on October 30, followed by two days of hydration.  I'd then have the CT scan the following week to see if my cancer has spread. 

I told Dr. Aragon-Ching that a small part of me hoped that the cancer had spread, because that would mean I would not have to do more of the ddMVAC chemo.  That of course is completely bass-ackwards, and makes no logical sense whatsoever.  But it captures just how deeply I loathe the corrosive weakness this chemo causes.