What next?

Thanks. I appreciate the concern. I actually have a message out to the doctor to ask if addressing the ascites will help any of his symptoms. I suspect that if he isn’t healthy enough for the chemo this week, the ONC will segue that into a discussion about hospice.

No real progress to report. His cough has diminished a bit. The doctor feels it is likely bronchitis. Other than that, he keeps getting weaker, sleeps all the time, has no appetite and only forces himself to eat so that my mother will eat something. He is unable to get into/out of bed or even a chair without help. Some abdominal pain, although it seems non-specific. Edema and ascites as well.

We are scheduled to go back to the ONC on Wednesday. He has decided against the liver directed therapy so ONC wants to put him back on the gemzar since it seemed to be the best weapon we have. (Very slight tumor growth in 6 months.) Not sure if he’ll be up to it or not.

I know these symptoms sound a lot like what others have witnessed with their loved ones and things aren’t looking great. I don’t know if it’s unusual, but his numbers on paper (liver panel, CBC, etc.) still aren’t all that bad. But lab results only tell part of the story.

Lainy,
Thanks. I do maintain a strong separate line of communication with the ONC (as I do with all the doctors) but haven’t talked post x-ray. The issue of hospice has been brought up by the ONC as well as the GP, the interventional radiologist and the surgeon, but there’s still a large amount of denial still at work. If it comes down to it, I will do the advance scouting if for no other reason than to have the next moves planned, whether they are needed in 2 weeks or 2 years.

My sense is, this just needs to be given a couple days to play itself out to see what direction this is heading. I know we all wish we had the script for how things are going to play out so we could act preemptively, but we don’t.

Haven’t posted much since there hasn’t been much new to post about. For the most part, he’s been doing well, considering. Normal routine of chemo and constant fatigue with general malaise seems to have been his biggest complaint since November. (He has lost almost 20% of his normal body weight.) The doctor put him on a daily does of steroids and that seemed to keep energy level from falling further. Because he’s been holding up fairly well, they felt he was a candidate for liver directed therapy since his last scan showed limited tumor growth and measurable tumor necrosis since the previous scan in September.

However, not sure if he picked up something in the hospital or if it’s coincidence, but following the mapping for his procedure, his condition has worsened by magnitudes. (They hadn’t gotten to the radiation stage so side effects from the directed liver therapy were ruled out.) He now sleeps a lot more, has had a couple days where he could barely get out of bed (or ended going back to bad), is back in his wheel chair to get around (he was able to use a walker at Christmas) and he developed this horrid, wet-sounding (but non-productive) cough. Hearing it, our first thoughts were pneumonia although the chest x-rays didn’t show anything. Concurrent with this decline and with two weeks of “very bad days”, his outlook and optimism has faded immensely and his comments have gotten more grim. He doesn’t have a fever but does have abdominal pain. No appetite to speak of either. (Up to now, he’s wanted to eat.)

Not sure if this is a passing virus (or bacterial infection) or if it has other significance, but the cough is troubling. Any experience with these symptoms?

Right now, the doctor is giving the antibiotics time to work to see if that takes care of the cough.

Marion,
A liver transplant isn’t currently on the horizon, but potentially chemo-embolization (or other forms of liver-directed treatments still tbd) to augment the systemic chemotherapy.

Thanks. As always, I will be asking plenty of questions.

Part of the reason for meeting with the interventional radiologist now is to bring him in the loop. Both the oncologist and the surgeon (who saw the tumor with his own eyes) feel my dad is a viable candidate for directed liver therapy if his overall health holds up. So we do have the CT scan that was completed in September as well as a first-hand report from the surgeon to give the interventional radiologist something to work with. In all likelihood, he probably wouldn’t start a procedure until after the second round of Gemzar, which would be about the same time as the next CT scan is scheduled to run. So, more or less, we’re trying to choreograph this on multiple fronts.

Another part is, after I asked the surgeon (who my dad respects) if directed liver therapy was an option and he said “definitely”, and my dad’s spirits lifted. When the oncologist repeated this endorsement, they went up another notch. So simply knowing we have one more weapon in our arsenal means the fight is far from over, so that helps too.

For what it’s worth, his ad hoc team of doctors are concerned about maintaining as much quality of life as possible and are aware that his circumstances as a senior are different than those of someone younger, but at the same time are aggressive enough to be willing to try things as long as my dad wants to keep at it.