u/Humble-Egg-2607

I don't really know how to make a long story short, so please bear with me. Some of you might remember my history from previous posts. I have 2 separate cancers. DCIS RT breast that is pretty much irrelevant due to my 2nd cancer which is very aggressive and the only one I've been in any active treatment for.

The aggressive cancer is CUP (carcinoma unknown primary). I've had surgery and radiation. I'm stage 4 terminal. I was never a candidate for chemo due to unknown primary (it's not common). I've already signed my POLST DNR. My oncologist discussed palliative immunotherapy (keytruda) and we decided to try it.

I had my 1st (and last) infusion on July 21st. I went in for the 2nd infusion this past Wednesday, but my labs came back with a critically low potassium level (2.7). I had also become much weaker in the intervening weeks. So my onco DC'd the immunotherapy and instead I got a bag of potassium. We also made the decision (because he's aware that quality is more important to me than quantity) to turn my care over to my primary care provider. There are no further treatments. My onco also strongly suggested hospice care and discussed this with my PCP.

I should add that I also suffer from pretty severe malnutrition and a severely compromised immune system, so one or both of those will probably cause my death before the cancer (even though both are a direct result of the cancer).

Anyway. Thursday morning my PCP ran another potassium level. Still 2.7, so they sent me straight to ER where they did an EKG and hooked me up to another bag of potassium. By this time my level was down to 2.5, so they also gave me a bolus dose through my g-tube and admitted me to hospital on telemetry. They got my level back up to the 2.7.

Even though I'm a DNR they (and I) deemed it worth trying to prevent a cardiac event. Finally after another 24 hours with pretty massive amounts of IV and bolus potassium my level went up to 3.9 (within normal range) and discharged me Friday night.

I've been on increasing doses of gabapentin for pain management. It's not really effective anymore. In hospital they put me on IV Dilaudid. SO much more effective!

*Now, the gist of this is my question for anyone on hospice and/or pain management. What meds have you found the most effective? Especially effective with fewer side effects. And especially interested in how to control the amount I would have to ingest per g-tube due to swallowing issues. Any suggestions for IM meds or patches?

Technically, I have been a member of Missouri Synod Lutheran my entire life. Due to health reasons and also having personal issues with how my church seems to lean very conservative/right, I have not attended services for over 10 years. I have remained in some contact with my pastor, but don't feel comfortable discussing politics with him.

​

I live in a very red area, but I mostly consider myself progressive. I'm really concerned about if and how my church supports the current administration. Especially relating to topics like immigration and project 2025. How do they support someone who is by most accounts just a horrible human being?

I posted a little while back that (one of) my 6-month post Rads PET scan and f/u biopsy showed metastasis. I found out yesterday that it's definitely not the DCIS. Those areas have actually shrunk a little. After more testing & research, it's conclusive that the other aggressive cancer with unknown primary is back. I've already had surgery & radiation last fall. There really aren't any further treatments that are considered effective and my prognosis is very poor.

​

My oncologist has offered to try to get approval for me to try immunotherapy to maybe, at least, buy me a little more time. If I can't tolerate, they will have to discontinue that though. I know immunotherapy can have a lot of serious side effects and my general condition is very poor, but I'll toss the dice. In the meantime I'm working on end of life decisions. Hoping for the best but preparing for the worst has always been my motto.

​

I am curious about other people's experience with immunotherapy. I also very much value quality over quantity as far as life goes. Thanks in advance for any guidance, info and encouragement. Everyone on here has been so supportive through my journey.

I always think I'll try to be adventurous, but I always get the same thing.

Shrimp Chimichanga with cheese sauce, rice, beans, sour cream and extra pico de gallo. Hold the guacamole.

ETA: I should probably add that due to radiation treatments for head& neck cancer I currently have a feeding tube and have only started eating broth and soft foods. No sympathy wanted folks. But I have been having horrible cravings for foods I love 😜

It's been awhile since I posted. I've been on this journey for a little over a year. If you're interested in more specifics, my previous posts explain in more detail.

I have 2 cancers.

The first, which was very difficult to find, is DCIS, so has been non-aggressive. I'm currently undergoing testing to see if it's changed it's mind about that. If so, I can start chemo, etc. but no surgery because I'm too weak and malnourished for that.

The second, which was/is very aggressive, is neck & throat cancer with unknown primary. The unknown primary thing is bad. Very bad. And pretty rare (only 5-10% of all cancer patients). And I've been seen by multiple oncology specialists. No chemo because no primary. I had a pretty massive RT neck dissection 10 months ago, followed by pretty intense radiation treatments.

Also had PEG tube inserted and still have to use it. Even with that I've lost 100 lbs in the last 6 months. Needless to say, I'm malnourished and very weak. Labs are all over the place. It's been less than a week since I've finally been able to take sips of water instead of sucking on ice (that's been a game changer)

The ENT oncologist surgeon told me it had already spread to surrounding tissue and MAY have gone vascular. Found out that they expected it to show back up somewhere on my 3-month scan (it didn't) and that I would be gone by now.

6-month scan... Acute hypermetabolic axillary lymph node.

I've been getting the tests to rule out the breast CA, but my onco is pretty sure it's not. So am I. The lymph node biopsy came back metastatic non-small-cell carcinoma. My onco wants me to stay hopeful, but we both think it's the aggressive cancer. There's no treatment.

They are still trying to find the primary, but are not hopeful about that.

Mentally, I'm doing pretty okay. I'm making plans (funeral and bucket list stuff). I'm not afraid of dying. I'm sad to leave my family, especially my son. He's a grown man and my best caregiver. I was a single mom and he's my only child so we've always been very close. I'm also very close to my brothers, sis-in-law, and nieces & nephews. Pretty close to my extended family too. And I have a few close friends that have been uber- supportive.

The people on here... you have all helped me on this journey more than you can know. I can share shit here that I only share with my cancer counselor.

I'm not just giving up. I still have some things I want to do.

Thank you all for letting me share my journey through this wasteland with you. ✌🏻 & 🤟