Anyone had pancreatic cancer mets to lymph nodes only?

How long ago was your husband’s surgery and how is he now doing?

His surgery was July 13th. He is doing very well. He had his chemo consult the other day and will be starting chemo the week of September 11th. He was originally going to be part of a clinical trial but they just called today to say that people who had a splenectomy cannot be a part of that clinical trial as of today. They find that it's too dangerous.
How are you doing? How are you finding the chemo? While chemo does seem daunting, my husband just wants to get moving with it.

My husband will be starting chemo in two weeks. How are you doing with chemo? I hope that you're doing well.

I just completed cycle 6. Doing OK. Increased chemo brain this round which had me down for a few days. Since we last communicated my oncologist has suggested a revised protocol. Moving from 8 cycles to 12 cycles if I can tolerate it. Not thrilled about the idea but there’s data indicating better efficacy with increased cycles. I’m going to try and get through it. Neuropathy is one of the most common side effects of one of the chemo drugs in the combo. Oxaliplatin. For most patients the neuropathy is temporary but in about 25% of patients it can be permanent. My doc would like me to continue as long as possible but if the neuropathy becomes debilitating he will stop. Fortunately this cycle the neuropathy has not been bad so far. I’ve been doing Accupuncture which I believe helps. Overall I haven’t had many of the side effects that they warn of. My gut has held up pretty well and I eat a fairly normal diet. I haven’t lost any weight so far. Everyone will have different experiences and even from one cycle to another I’ve had various experiences. It’s a long journey and it can be very discouraging. Support from family and friends is so important to try and stay positive. On the days that you feel better be sure to get out and enjoy the fresh air. Best of luck to your husband and let me know if you have any questions or feedback as he goes along.

I just realized that in your original post that your husband is scheduled for 12 cycles. That’s good to hear. Out of curiosity can you say where he is being treated?

I'm glad to hear that you're able to eat and haven't lost weight. Do you mind me asking about the neuropathy, how/where it's affected you? The oncologist talked about the cold sensitivity in the hands, feet and throat. But then she also talked about neuropathy affecting people in other places such as the spine, legs, arms. You've given a great insight about the accupuncture. I'll keep that in mind if he needs it.

That's what's so great about this forum, it's so helpful to hear suggestions from people going through the same thing.

He's being treated at MSKCC in NJ.

Good morning,
How are you feeling?
I hope that you're doing well.
Since we last corresponded, my husband has just completed treatment #6. Your situation is very similar to his, and if you don't mind my asking, I was wondering about your neuropathy which you had mentioned. Did it start slowly? Did it worsen quickly? Was it painful? My husband's having a difficult time with the Oxaliplatin and is noticing numbness in his fingers from finger tips to palm of his hand and he also feels at times that there's no circulation in his fingers and they are cold. We will be discussing this with the oncologist, but I'm trying to get as much information as possible ahead of time.
Thank you.

I started getting neuropathy in my feet after cycle 5 or 6. I first noticed tingling in my fingers a couple of cycles later. After cycle 8 it got worse in both hands and feet. It would subside somewhat before the next cycle. I haven’t had any pain but now the numbness is constant. They dropped the oxaliplatin after cycle 10. The last two cycles were irinotecan and 5FU. I have read and the oncologist agreed that it may get worse over the next month or two before it hopefully starts to subside. I’m two weeks out from cycle 12 and starting to feel back to normal with the exception of the neuropathy. I try and exercise regularly. Hoping that I’m one of the lucky ones that experience diminishing neuropathy over time. All the best to your husband as he goes forward. It’s a grind but hoping it’s worth it.

Thank you for getting back to me. I'm so glad that you're starting to feel back to normal. I hope that the neuropathy gets better. I wish you all the best and appreciate your help!

I had distal pancreatectomy and spleenectomy last October 2022. Ultrasound and other scans show 1 lymph node and possibly 2. Surgery discovered just 1 lymph/25 near pancreas with metastases. I see some people had more tested and that reminded me that my surgeon told me that they can't test every lymph node as it would take up too much time for the surgery (assuming they are thinking the body can only be under anesthesia for a certain amount of time?).
I finished my chemo in June of this year and had a few good months and then boom! my CA19-9 starting to go up from 6 to 23 and now 233 all with a month's time or less from 23 to 233. No tumor seen yet, however, my hunch is that it is in the celiac/hepatic artery or what was left of my pancreas. Very hard to get anything done at this point with the medical personnel, so I'm going to Cedar Sinai to get a 2nd opinion. Be vigilant and stand up to all medical personnel when needed to ensure you get the best care.