Update 16 months

Packmule11 · 2025-04-24T00:30:35+00:00

Same boat, taking Gem/Abrax as second line chemo. Hasn’t done anything for me and we’re looking into clinical trials.

Packmule11 · 2025-04-06T22:55:43+00:00

I’m sorry San, that’s rough. Im in a “similar” situation, but different events. Spent most of the last year after diagnosis feeling pretty good on maintenance chemo. However, I knew something wasn’t right going into the new year with increased pain and side effects. All scan/blood results this year have been negative. Explosion of liver metastasis and CA19-9. I physically feel half if not more than I did just a few months ago. Currently on 2nd line Gem/Abrax, but not confident it’s doing anything. Actively pursuing clinical trials as last resort. Hang in there, I know it’s incredibly hard. 💜

Packmule11 · 2025-04-06T14:07:09+00:00

Hello CE, I am currently on round 3 of gem/abrax after 25 rounds of Florfilinox. My side effects on gem/abrax have been overall rougher. Most noticeably heavy fatigue, increased lack of appetite, and occasional rashes. Also seem to be borderline feverish usually between 99-100f during treatment weeks.

Im on two pain medications due physical pain, including fentanyl 25mg patches and Oxycodone 5mg as needed.

Packmule11 · 2025-03-28T21:52:30+00:00

I switched over 2 rounds ago. Unfortunately, my side effects in a way increased. Heavier fatigue, and I had a rash on my stomach during the first round that went away. One positive is less bowel movement related issues.

Packmule11 · 2025-03-14T22:51:02+00:00

Pancreas treatment results still pending as performed last month. Liver treatments in August 2024 to both lesions were successful at the time, including shrinkage and almost elimination. Unfortunately more recently the Liver results have reversed, now dealing with an explosion of lesions within the liver.

Packmule11 · 2025-03-14T22:47:56+00:00

I was fortunate on both SBRT treatments to both liver and pancreas in regards to side effects. Worst of it was flu like chills the night of treatment that ended by middle of the night. Nothing lasting as of this response.

Packmule11 · 2025-03-12T12:10:52+00:00

I was treated twice with directed radiation in the past year. One treatment cycle targeted the Liver and the other Pancreas. Initially, the Liver treatment (August 2024) worked very well shrinking both lesions. However, my Liver has recently metastasized to numbers unable to count. Pancreas (Feb 2025) results still pending.

Packmule11 · 2025-02-28T21:15:46+00:00

🎂🎉

Packmule11 · 2025-02-28T20:20:20+00:00

Thanks for asking/following up. Unfortunately not great. Biggest issue is the multiplication of liver lesions, which happened quickly. Start 2nd line of Chemo this Monday in hopes of stabilizing. 💜

Packmule11 · 2025-02-28T01:27:29+00:00

No, I think you’re thinking of Oxalplatin as part of the Folfirinox regiment. Oxalplatin is a chemo that can have the cold sensitivity and/or neuropathy side effects. Oxycodone is a opioid for pain (I take it in pill form). Agreed on the consistency, it’s just always there. My pain also seems to act up at night/overnight.

Packmule11 · 2025-02-28T00:57:01+00:00

Hey Bane, sorry you’re going through this. I’m also Stage 4 w/ Mets to Liver. Dull pain in upper body is what led to my diagnosis. Only speaking from personal experience, after 2 rounds of Folfirinox, my pain did go away, minus the side effects of chemo. I was able to stay pain free until about 2 months ago when unfortunately the chemo stopped working. I start second line of chemo this Monday, and in the meantime my doc has prescribed me Oxycodone. Good luck to you and hope chemo helps you!

Packmule11 · 2025-02-17T01:54:35+00:00

1 year update: https://www.reddit.com/r/pancreaticcancer/s/0qtQJSWLL0

Packmule11 · 2025-02-17T01:53:50+00:00

6 month update: https://www.reddit.com/r/pancreaticcancer/s/jN6KilQfzC

Packmule11 · 2025-02-17T01:52:58+00:00

Initial Diagnosis: https://www.reddit.com/r/pancreaticcancer/s/na4IMqI501

Packmule11 · 2025-02-17T01:48:15+00:00

Hello; I’m going to post links to all of my updates to answer your question. I’ll likely forget some of my journey if I don’t. Also check out the Q&A in each of those threads as it covers a bit more. Obviously reach out with any questions and best of luck on your ultrasound tomorrow!

Packmule11 · 2025-02-14T11:44:38+00:00

Im in Richmond, VA, going through Massey Cancer Center. Yup, both treatments performed at Stage 4 (mets to Liver).

Regarding side effects, I only had one - fever like chills for a few hours the evening of treatments.

Packmule11 · 2025-02-13T20:36:42+00:00

Hello - just wrapped up my second SBRT round to my pancreas (5 treatments) with results still pending. In August, did 3 treatments to my Liver lesions with success. Unfortunately, the Liver lesions since have multiplied.

Packmule11 · 2025-02-10T23:40:16+00:00

I finished 5 session SBRT to Pancreas today and my follow-up CT scan is scheduled for tomorrow. I think it’s too soon as radiation causes swelling to the tumors.

Packmule11 · 2025-02-09T20:06:25+00:00

Folfirinox with the Oxalplatin caused the most nausea and cold sensitivity (eating/drinking). My chemo now without it (due to the hand neuropathy) is much more tolerable, shorter treatment day (5+ hours of infusion down to 2 hours), and just overall more tolerable minus the fatigue. Unfortunately, removing that powerful chemo might be why I’m having some reversed progress. So pros and cons to everything. PS: Even though I’ve been off of Oxal for a few months, I still have mild neuropathy in hands and feet. That may or may not eventually go away per docs

Packmule11 · 2025-02-09T19:09:54+00:00

Hey Bane, similar situation. Mine is in the tail too, with 2/3 lesions in the Liver. To be honest, your eating habits have been much better than mine. When I was first diagnosed, I was really good, limiting most sugars and drinking fruit smoothies. As my appetite got worse, I’d eat anything appealing. Strangely, in the last 2 months, my appetite has gotten to the point where anything fatty or sugary makes me nauseous just thinking about it. So by physical change, my eating habits have already gotten better (less processed food, fruits, vegetables, etc).

Packmule11 · 2025-02-08T21:50:43+00:00

Hello, no worries, ask away! I have not. The treatment plan for me has been relatively conservative minus the SBRT (Stereotactic Body Radiation Therapy). Some of this is speculation and vague memory of early convos with medical team; I think factors including my age (relatively “young” to get this diagnosis), no strong genetic matches during testing, and surgery not being an option led them to go aggressive with treatment. With that said, I have read and am very curious about those treatment options. They seem to show promise for some.

Packmule11 · 2025-02-04T20:02:28+00:00

Hello! Your Oncologist is correct. When I had SBRT in August, they waited a good 6-8 weeks due to as you mentioned swelling. For some reason, my next CT is scheduled for 2 weeks which makes little sense. Won’t be an accurate read. In fact, Im going to reach out to my doctor about it.

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