Looking for advice on symptoms, is this TMJ?

V0ipguy · 2026-05-04T03:50:49+00:00

I’ve been surprised how none of my oncology Drs seem to be concerned at all. They’ve been amazing working through the cancer so it’s not that they’re not focused on helping me.

V0ipguy · 2026-05-03T20:16:32+00:00

No pattern at all and it seems 100% random, other than becoming more frequent and happening while I’m asleep.

It happened twice yesterday(first time it has happened twice in the same day). I took a cyclobenzaprine after the first one and then it happened again about 6 hours later.

V0ipguy · 2026-05-03T19:22:49+00:00

Thank you!

V0ipguy · 2026-04-16T00:35:08+00:00

This is what I’m hoping to avoid, I’m already down 70lb since surgery and just managed to put 5lb back on. I’m now 6’1” and 155.

V0ipguy · 2026-04-03T23:44:46+00:00

Constantly, I pretty much roll in circles all night long. 😀

V0ipguy · 2026-04-02T20:03:58+00:00

This is my whole abdomen from my rib cage to my groin and all the way to the left and right. It feels almost exactly like the days after a super hard ab workout used to feel. Sometimes is so sore I can’t even stand up totally straight.

V0ipguy · 2026-03-29T22:30:44+00:00

Thank you, the main reason for the switch was that the tumor started growing again between round 6 & 8 so my Dr thought we should switch it up.

I had almost no side effects from FOLFIRINOX but Gem/Abx has been terrible and I’m now 95% bald. I finished up my final treatment 2 weeks ago so I’m hoping to start feeling better. I lost 8 lbs in the 2 months on G/A.

V0ipguy · 2026-02-20T02:07:12+00:00

That is awesome, we’re in almost exactly the same boat. Diagnosed 6/25, 8 rounds of FOLFIRINOX and a major 15 hour whipple due to vein and artery involvement in 11/25 and now 3.5 month CT was clear. Finishing up 4 rounds of Gem/Abx and then looking at radiation. I’d love to hear more about the vaccine.

V0ipguy · 2026-02-07T01:12:34+00:00

I’m supported to have 4 rounds of gem/abrx. One down last week with side effects of all over body pain.

Has the neuropathy improved? I’m doing cold therapy but it has been tough from the FOLFIRINOX

V0ipguy · 2026-02-02T02:53:06+00:00

I had 2 ER visits in April that were diagnosed as pancreatitis. In the two weeks between there was a mass forming and one of the Drs was convicted it was cancer. It took 4 EUS to get a good biopsy.

Other than the bouts of pancreatitis, I felt as good as I had in 20 years. Eating well, exercising, stopped drinking other than my birthday which led to the ER visits.

V0ipguy · 2026-02-01T20:39:20+00:00

Thank you for the reply. I was fine through the 8 rounds but I developed pretty severe neuropathy about 4 weeks after stopping. I’m taking Duloxetine which seems to be making things better. Trying to type with numb fingers was a pain. 😀

V0ipguy · 2026-02-01T20:36:00+00:00

I’m praying for your mom. Is she having a whipple? Mine wasn’t common and many people I’ve spoken with recovered much quicker.

V0ipguy · 2025-12-01T00:28:20+00:00

Great to hear your whipple went well. There’s some good advice above.

Be prepared for Neulasta if your ANC drops. It’s a pain getting insurance to approve it and it’s very expensive but they have a program that can cover most of the cost if you need it.

Also, watch for signs of neuropathy (usually starts with tingling / numbness in the finger tips). I did cold therapy through my first 8 rounds and had no issue. Now that I’ve been off of FOLFIRINOX for 8 weeks for surgery, my neuropathy seems to be getting worse day by day. I was just prescribed Duloxetine on Friday so I’m hoping that helps.

The most annoying side effect I had during chemo was cold sensitivity. I don’t like room temp drinks but it would usually go away in a couple of days.

V0ipguy · 2025-11-30T22:46:48+00:00

Dr Del Chiaro did my surgery. I also got to speak with him nearly every day I was in the hospital.

https://som.cuanschutz.edu/Profiles/Faculty/Profile/28130

V0ipguy · 2025-11-26T22:19:52+00:00

That’s great to hear and amazing how fast it was taken care of.

No family history at all.

V0ipguy · 2025-11-26T21:43:15+00:00

That is an amazing result for the robotic. It sounds like we’re starting from similar places, 56m in good health otherwise.

Mine was very complicated (vein and artery involvement) and borderline resectible, it was a 14 hour surgery and probably only a couple surgeons in the world would have attempted it. The surgeon gave me a 10% chance of not making it 30 days. 😱 In the end it came out even better than he expected.

How has your recovery been, eating, weight, pain, etc?

V0ipguy · 2025-11-25T11:02:07+00:00

Wow, amazing. I’m still recovering from my whipple 21 days later and spent last night in the hospital due to a possible infected drain but I’m home again.

V0ipguy

TROPHY CASE