googily

We certainly now have quite the in-house dispensary! (and I didn’t even list the benadryl or the synthetic pot!)

It has been very tough getting food in him, and liquids, but I am becoming more militant by the second.

Thanks, Catherine. I had been looking out for the steroid inclusion because of one of your posts about your mom at some point. We’ve already got the Rx to take it three mornings after the infusions.

We had our meeting with the oncologist at the local hospital today (affiliated with Hopkins) and my husband will be getting a port. Unfortunately this now means that the start of chemo is just over a week away, given the scheduling calendar for the port.

Even more importantly, we have finally gotten his nausea under control, though it has taken haldol and marinol (synthetic pot) with benadryl on top (without the benadryl, he was in bad shape). He’s got more energy, has started eating more again, and says he’s gained a little bit of weight in the past few days. It’s a nice emotional boost to feel like we’re making him stronger in advance of the chemo instead of watching him decline while waiting. (And the onc is clearly ready to pull out the heavy artillery to fight nausea once the gem/cis starts.)

And we found out that the Hopkins doctors have already begun the process to get some of his biopsy tissue to Foundation One. (waiting to see what the insurance company has to say about it, though!)

So, in a very bad situation, I feel like things are going as well as they can.

Just wanted to update (I’m the one who started this thread). My husband has now been seen by the Hopkins Liver Tumor Team, who confirmed the diagnosis of intrahepatic CC, with numerous metastases in the liver and local lymph nodes, making surgery not an option right now.

We were visited by four different doctors, and there was agreement between the team to start Bill on gem/cis, then after three rounds or so give him two Y90 treatments. The interventional radiologist said that the main tumor (about 8 cm) is highly vascular, so he feels good about the “road” for the spheres. The surgeon did say that if the chemo and Y90 response is good, he and the team would evaluate again whether surgery could be possible.

The oncologist also will be giving us a referral for genomic testing, and specifically talked about the IDH1 mutation as one to be looking for.

So, thanks to having buried myself in this message board for the past few weeks, these were the things I was hoping to hear (knowing that we were probably well past the hope of them coming in and saying it was resectable), so now we will get the chemo started and see what comes.

We may still get some second opinions (though right now we are worn out just from the waiting), but won’t let that delay starting the chemo.

Thanks, Lainy and Marion. We are waiting to be seen in about 10 days by the multidisciplinary liver team at Hopkins, which has all of the specialties Marion listed–it wasn’t anyone on that team, but was a liver specialist at a hospital in DC, who made the initial comments that could have been perhaps framed with a touch more grace (and she did at least say that an interventional radiologist may have a different opinion, as I mentioned up thread).

We will then get a second opinion at SK, and/or anywhere else–right now we don’t technically have a first opinion, other than the biopsy saying it’s adenocarcinoma in the liver, probably coming from somewhere in the upper GI tract, though the MRI listed peripheral CC as the #1 differential diagnosis.

Thanks also for the suggestions on the food–his appetite has been better the past few days, and he’s now going to start the pain meds which will hopefully make it easier to take in more food (even if the meds mess with his appetite, I will be pressing him to eat small amounts ever few hours).

Thanks so much for your replies, I really appreciate it. We will keep on keeping on until the Hopkins team appointment, at which point I hope all sorts of things will start happening on multiple tracks.