I know it has been a while since I took some time to write up an update, so for those curious there haven’t been any major exciting developments. We have continued the typical cycle of chemo every other week and the side-effects that come with that have persisted in their ability to annoy me and bring me down. Luckily we have been able to stay out of the hospital since our last little trip to the ER resulted in no definitively clear diagnosis (consensus around our house is that I had Hand-Foot-Mouth disease from Moira and her daycare posse of germ infested toddlers).
I have mentioned before that the living donor situation is one where we don’t get a lot of information openly shared with us. In fact, no information is shared with us unless we practically beg for it. The living donor office at the university handles all the communication and coordination with potential donors and determines their fit, without providing any information to me as a recipient. Kelly reached out to them last week for an update, and what we heard back was depressing. Of the 40-50 people who had so altruistically submitted their candidacy all but one remains as a potential donor, all the others have been ruled out for whatever reason (the primary reason, we were told, is my height, but there are others). We were told that this last potential donor has final meetings with the team in the coming week or so, so my fingers are still crossed, but it looks like we might just be playing the waiting game until a deceased donor match is discovered.
In the meantime we continue to consider other potential paths forward. A new technology, developed at the University of Michigan, called Histotripsy has seemed promising as it recently received FDA approval. This process uses super precise ultrasound to break up tumors in the liver and basically turn them into bubbles. Check out this link for more information:
At the moment the U of M medical center does not have a Histotripsy machine for use, but they should be getting one very soon (January likely). I have been told that I am at the top of the list to be reviewed as a candidate for this therapy when it arrives on campus. Given the number of tumors I have in my liver, they may have to consider a combination of ablation or resection for some tumors and then Histotripsy for others. These are sort of uncharted waters so we are figuring some of this out as we go along.
At my appointment with my oncology team this morning they informed me there is currently a national shortage of 5-FU which is one of the drugs I receive as a bolus at the infusion center, and then in my take-home pump for the next 46 hours. They are deciding case-by-case who should receive this medication due to the shortage and have determined that those who are receiving the drug as part of a palliative care plan would not be getting it. I am still getting this drug as “we have curative intent,” which was nice to hear.
Sometimes it is easy to get bogged down and feel like there is no exit ramp on this highway of constant chemo induced fatigue and depression, but there is. It is taking longer than I would have liked, but we are going to get there.
Hi Andrew:
THANK YOU for staying strong brother.
You are good dad and hubby.... proud of you!
I am praying God's Perfect Will is done through all this crazy trial.
If don't communicate before then ... you all have a great Thanksgiving.
Regards to your family ... hug everyone as tight as you can.
Kevin
I had hand foot and mouth this year and it was the sickest I’ve perhaps ever been. From my experience with the living donor office, their standards are very high. Mild elevation in liver transaminases and cholesterol is enough for them to rule you out.