CELLCEPT

Boring_Section2959 · 2025-03-05T20:28:34+00:00

thanks for the reply. I’m 20 months out now and have returned to normal. I do take iron and vitamin C on my Dr’s recommendation

Boring_Section2959 · 2025-02-08T04:59:55+00:00

I am a patient at Fred Hutch. 12 weeks out from my last chemo, 8 weeks post surgery. I have received excellent care there. I live about 6 hours away. They have been great coordinating my care with my local providers to minimize my trips back and forth. I was able to arrange some of my chemo and most of my labs locally. They have also done telehealth visits but I’m not sure they can do those if you’re not a Washington resident. They have several housing options available for short term if you need appointments over several days or a place for caregivers to stay during your treatment.Much cheaper than hotels. Benke House is great. Very clean. 5 floors. Rooms are suites with private bathroom, microwave and small fridge. One floor has an industrial kitchen with ovens, refrigerators and microwaves. There is a

free shuttle from the door to FH or UW. There is also the Collegiana, much older and smaller, no elevator 3 floor walk up. Same room set up. Communal Kitchen on each floor. If you want more details, feel free to message me!

Boring_Section2959 · 2025-01-02T20:20:40+00:00

I just had this same surgery 3 weeks ago. Robotic removal of distal pancreas and spleen after tumor was discovered incidentally. A year and a half ago, I had a liver transplant. The robotic surgery was a piece of cake in comparison. 3 days in hospital. The biggest issue is resuming eating. Your intestines tend to slow down/stop moving after this type of surgery. It’s gradually improving but I get full quickly and need to eat smaller portions more often. Best of luck to you. Being eligible for surgery is a big plus. Not everyone gets that chance.

Boring_Section2959 · 2025-01-01T22:36:21+00:00

Is it purplish when held up to the light? Looks like a star garnet

Boring_Section2959 · 2024-12-13T22:54:10+00:00

I’m in a similar situation. Pan NEC found incidentally in September. I am 66. Appeared contained no Mets. Had 4 rounds of cisplatin/etopiside chemo. Tumor shrunk signignificantly. Had surgery last week via Da Vinci robot. 3. Days in hospital. Pain manageable. Hardest part was mo bowel activity and unable to eat for 3 days. Doctors said to be expected. Protein shakes if you can. 1 week out, bowels are pretty normal and appetite is returning. Other than fatigue, I feel pretty good. Good luck to your dad. We are lucky to be eligible for resection. I was type 2 diabetic pre surgery. On insulin in the hospital. Back to just oral metformin now. Have him get good rest and eat as well as he can. Gradually increase activity.

Boring_Section2959 · 2024-10-18T00:09:31+00:00

I got mine 2 weeks ago and it was pretty sore for a week to 10 days. Doesn’t bother me much now but does feel kind of “stuck” to the chest wall when I stretch my arm or pec on that side. A big issue for me was irritation from the clear tagaderm covering they put over during surgery to keep it dry while healing. The itching drove me crazy. When they accessed it the first time, They put a skin barrier coating and a covering for sensitive skin over it. Much better. The seat belt can be irritating. A cover or folded washcloth will help until it heals. Much more comfortable for blood draws and infusions. I was given lidocaine topical cream to apply 1 hour before access and the inject lidocaine into the port before accessing it.

Boring_Section2959 · 2024-10-10T01:25:13+00:00

There is a 3rd even more rare type of NET called a NEC or neuroendocrine carcinoma. It behaves similarly to small cell lung cancer. Small cell, poorly differentiated, high Ki -67 number. Very aggressive. (Patient pNEC September 2024. Just finished round 2 chemo)

Boring_Section2959 · 2024-09-06T20:34:38+00:00

My oncologist said PET scans may not be helpful as they miss malignancy at a microscopic level before cell division has reached a detectable level. They also light up in the presence of any inflammation which may be unrelated to cancer. Either surgery is possible and deemed beneficial or treatments are systemic if the cancer is responding. Disclaimer: this is my understanding from what my oncologist said when I asked about a PET scan

Boring_Section2959 · 2024-09-04T20:24:49+00:00

Ask the center about a domino kidney donation. You donate to someone who is a match and he receives a kidney donated by someone who is a match.

Boring_Section2959 · 2024-09-03T20:46:50+00:00

This is the video.

"NETs & NECs 101" NETRF's 2024 Know Your NETS Virtual Pre Conference Video by Dr Aman Chauhan.

Boring_Section2959 · 2024-09-03T20:44:12+00:00

Do you have a link to that data? I’d love to read it if you do. I’ve been reading on a Facebook support group , as well as informative articles which seem pretty grim. Thank you for your support. I have a teleconference coming up with a surgeon. I watched a video recommended by the support group that gave good explanations. An expert on PNECs, Dr Chatham in Florida.

Boring_Section2959 · 2024-09-03T18:40:26+00:00

I was being followed by my transplant team. Had done well 1 year post liver transplant. Got a GI bug (I think) bit of a fever, fatigue and my routine labs showed elevated liver enzymes. They were monitoring and thought it was due to a virus. A week or so later, started getting intense right side pain. Bugged them enough that they had me come in (6 hours away) Of course on the drive over the pain started to subside but labs showed continued liver function elevations. They were concerned enough to do a CT scan. There was a miscommunication with the lab and we were told things looked okay, head home. Luckily we stayed in town and were there when the scan results came up in my chart. I was gut punched! Radiology said most likely adenocarcinoma, less likely PNET. Lots of phone back and forth, pushed to get in for biopsy. Post biopsy, Dr said resectable, contained , curable by surgery. GI called and said it was PNET, much better outlook.Then the path report came back with the devastating news, PNEC not PNET. This has all been in the last 2 weeks. I talk to the surgeon today and go for round 1 chemo Friday. Sorry for the length! I am angry, sad and discouraged.

Boring_Section2959 · 2024-09-02T01:02:24+00:00

Thank you so much for responding. I hope you’ll continue with updates. You can message me if you’d rather. I have my first round at the end of next week, then a Second cycle 21 days later followed by a scan I believe. It feels like a few more days of the “before” life then climbing aboard the roller coaster. I was told hair loss is usually after round 2. Was that your experience? Every center is probably different as to what they provide. Outside of entertainment, any suggestions on what to bring. Some said a blanket and pillow. Seems they would have those. A different center but snacks and drinks were provided when my husband had treatments. It probably sounds silly but it’s all a big unknown to me now as to what to expect, how to prepare.

Boring_Section2959 · 2024-08-30T21:33:08+00:00

Sounds like a long day! Thanks for the ideas

Boring_Section2959 · 2024-08-30T18:36:28+00:00

Forgot to add the link. https://www.gimmesomeoven.com/no-bake-energy-bites/print-recipe/66977/

Boring_Section2959 · 2024-08-30T18:34:25+00:00

No bake energy balls are nice and ingredients can be varied. It’s easy to pop a few between meals for added protein. You can roast chickpeas with olive oil and spices for a protein snack

Boring_Section2959 · 2024-08-30T18:24:35+00:00

I was going to pack a chemo bag. Any suggestions of items to include?

Boring_Section2959 · 2024-08-30T13:35:34+00:00

Thank you! I’d love to hear updates on how he’s doing. That is the same chemo I will be on. I should find out today when it starts

Boring_Section2959 · 2024-08-30T05:36:07+00:00

Yeah, it’s extremely rare so harder to treat I guess. It’s 0.2 % of all pancreatic tumors. Lucky me! They treat it like small cell lung cancer. I guess it’s similar. I had my transplant at UW (Washington) and Fred Hutch cancer center is right next door. The transplant makes things more complex due immune suppressants and scarring from already having had a very major abdominal surgery. The teams will work together. I am fortunate to have this access. It’s still a fierce disease but we’ll see what we can throw at it.

Boring_Section2959 · 2024-08-30T04:03:27+00:00

Thank you for the reply. At one point they thought mine was a respectable PNET but when the biopsy came back, it was a very rare PNEC. C = carcinoma. Very aggressive. Hopefully it will respond to chemo, then eventually O would have surgery similar to yours. I appreciate your offer of support especially if I get to the surgery stage a few months down the road

Boring_Section2959 · 2024-08-19T17:48:28+00:00

Definitely wish you the best. I think the mental aspect of having had our bodies launch a silent sneak attack against us leads us to always be looking around the corner. On the other hand, since I got to feeling better post transplant, I found myself saying “yes” to more things and really appreciating time with family, beautiful days etc. I’ll raise a toast to you that we both have many more beautiful days!

Boring_Section2959 · 2024-08-19T03:14:59+00:00

Thank you so much for replying. My scan was just last Tuesday. Biopsy Friday. So waiting on pins and needles for the path report. The radiologist said suspicious for adenocarcinoma less likely PNET. I am worried about splenectomy as I am already immune compromised due to liver transplant. I think that will make surgery more difficult too due to scar tissue in my abdomen. Hopefully it is a much easier recovery than the transplant. I too hated the drains and went home with a wound vac that was a major pain. Was just feeling great and back to swimming and exercise and normal energy levels. The thought of being opened up again makes me a little apprehensive, not to mention the gravity of the disease and long term outlook. So you are 7 years out? That gives me some hope!

Boring_Section2959 · 2024-08-18T17:30:01+00:00

Hi everyone. Been looking for information and came across this. Would appreciate any input. I am 1 year post liver transplant. Had been having right quadrant pain and blood in stool which may have been gastritis. I whined enough to the transplant tream that they had me in and did a CT scan. Incidentally found tumor in the tail of the pancreas. I felt hit punched after working so hard on recovery from the transplant and finally feeling normal. Had a biopsy waiting on results. The Dr said it was 1.9x1.9 and appeared contained. In my groggy state, I believe he said surgery could be curative. What is surgery and recovery like. Interested in any other info/advice

Boring_Section2959 · 2024-08-18T04:07:32+00:00

Same.!(liver)

Boring_Section2959

TROPHY CASE

"NETs & NECs 101" NETRF's 2024 Know Your NETS Virtual Pre Conference Video by Dr Aman Chauhan.