Hello Mamamace,

Sorry to hear about the agony your father is experiencing.

I am dissapointed/confused as to why the palliative medicine team is not able take him on as a patient, especially giving his uncontrolled pain.

I would suggest, if feasible, perhaps seeking a second opinion if he is not satisfied with answers and treatment he is getting. Sounds like he just had a work up with an additional biopsy, so they are continuing to work up his case trying to figure things out, but are unable to keep him comfortable between answers. This is just screaming palliative medicine to me. My brother LOVED his palliative doctor, a good bit before he decided to enter hospice.

I hope the recent biopsy comes back non-cancerous, but maybe with some clues that they can figure out what is causing the pain.

With my brother it was a rapid, and brutal decline from aggressive small cell lung cancer with bone metastasis. The bone pain was agonizing for him.

They ended up doing "palliative radiation" (I had not heard of that before my brother this spring), where they radiate the bone tumors, not to cure or really even treat the cancer, but to kill off nerves and greatly relieve the pain. That helped him quite a lot. That was from the oncology team, and that was as his was advanced in his bones.

When he finally was able to home after the third round of chemo almost killed him (9 blood transfusions in a weekend as I recall, every chemo treatment resulted in an ICU oncology admission for like a week) he was taking a pause from the chemo and really established a good rapport with a palliative medicine doctor.

Once he got the palliative medicine doctor on board, he was pretty much "comfortable" except when moving.

Regarding the narcan, is it possible that was only part of the prescription, and the rest got hung up? Sometimes it seems things get confused. That's why a palliative doctor focusing solely on symptom management and quality of life, being your one stop clearing house can help. Sometimes due to treatment plans and other drugs it may not be possible for them to give their first set of treatments of choice, but that's the beauty of it. The palliative doctor can have those battles with the other doctors/pharmacists, their goal is making his life bearable NOW, or as soon as to NOW as possible. Or actively working to make his life more bearable, make improvements where possible.

I get why being in chronic pain can be so debilitating and demotivating. I can only just imagine.

We had to have the narcan on hand with my brother as towards the end he was on quite a lot of narcotics, and they kept getting heavier as entered hospice.

Is your father at a Comprehensive Cancer Center? Is it possibly to seek consultation at a CCC if he is not there now?

My brother never rallied his health up enough to see about trials and second opinions.

I know they talked a lot about "getting ahead of the pain" and "getting ahead of the nausea".

That is if he didn't stay on his regiment and the pain took hold, getting it back under control was always a nightmare.

So one thing the palliative doctor did, and mind you my brothers was an aggressive and rapidly advancing cancer, was once my brother's "break through" pain medication, dilaudid (hydromorphone, if I recall), had to be taken on a increasingly regular basis, was to up his fenatnyl patch and then I think the frequency of which he could take the break through medication.

You mentioned ER's, and that was what got my brother diagnosed.

He was all set up for more CT scans and other work up I think through his regular doctors, had a massive increase in pain, went to the ER they did some stuff, he was sent home but like 3 hours later he was back in the ER and they were running IV's of narcotics trying to get his pain under control. They ended up doing the STAT CT's there for the ER, saw what looked like tumors, admitted him, as his pain was still out of control. They ended up getting a cancer diagnosis after a return to ER visit for pain.

Anyway I am sorry you and your father and family are going through this.

The also look at things like acid reflux and doing things to make sure just regular old middle age stuff isn't causing his surgical trauma areas to be bathed in like stomach acid from just GERD?

Heartburn is bad enough, can't imagine having stomach acid on a base of tongue incision.

What about like a moral support group?

I took my brother to one cancer support group for men. He was just trying to process everything, and things were not looking good at all. He would not survive for the meeting the following month as he decided to enter hospice a couple weeks after that, and was only on hospice like a bit over a week. Again his was a horrible fast and agressive cancer, that was already through his bones (why chemo was really rough on him, his red blood and white blood cell counts were already horrid before chemo, from the cancer being in his bone marrow).

The men's cancer support group was led up by a social worker, and an oncology nurse, who was himself a cancer survivor. Sometimes sharing those types of concerns with those types of people in person, may give you and your dad other ideas of how to follow up.

Figuring out how the squeeky wheel gets the right grease, can take a bit of persistence.

Sounds like you guys are in the middle of a pretty heavy workup, so I am hoping that you get some answers and peace, and your father gets some comfort, rest and encouragement, SOON!