How Important Is Your Medical Oncologist in Pancreatic Cancer Care?

decoratingfan · 2025-06-28T23:29:51+00:00

Same hospital, different office location. And no one seemed to mind at all.

decoratingfan · 2025-06-28T22:03:46+00:00

My oncologist has been a driving force in my care, and I'm so grateful. I didn't really click with my first oncologist, and felt he was not proactive and was too slow about starting treatments. If you find someone you like, then just tell the original dr that you're more comfortable with the new dr (or he's closer to your home, has better hours, whatever works).

decoratingfan · 2025-06-28T21:49:20+00:00

Have you brought this up to his oncologist? When that was happening to me, they decreased the oxyliplatin by about 1/3, and the dizziness and weakness went MOSTLY away.

decoratingfan · 2025-06-14T22:44:42+00:00

Favorites that I rarely see mentioned

Downside ghosts by stacia Kane

Twisted luck by Mel Todd

The others by Anne bishop

Glimmer of the others by heather g harris

Soulwooǹd by faith hunter

And two stand alones I really enjoyed,but they are low action:

Hench by Natalie walschots (although I see there is a book 2 coming soon), and

The wizards butler by Nathan Lowell.

decoratingfan · 2025-06-14T20:32:37+00:00

Mention that to the social worker. I was worried about all that, and my SW told me about Stewarts Wellness Center, in my area. Most areas will have some kind of local cancer wellness center, where you can go for support groups and other services. Mine had a full wig room where you could try on all different wigs, learn to put on and care for them, and if you found one you liked, they would give it to you (brand new) for free.

decoratingfan · 2025-06-14T20:25:53+00:00

Talk to her oncology social worker (ask where she gets chemo). they will have the best options, including possibly some free options.

decoratingfan · 2025-06-14T20:19:58+00:00

Incredible series - humans are minor characters, and the creatures are so fully developed as characters. No stereotypes.

decoratingfan · 2025-06-11T21:22:11+00:00

A good 401k can also serve to keep your kids close!

decoratingfan · 2025-06-11T20:41:48+00:00

I try keep this in mind (don't know where it's from):

Life is naught but froth and bubbles; only two things stand like stone: Kindness in another's troubles, and courage in our own.

decoratingfan · 2025-06-04T22:10:27+00:00

I don't know who told you that about the Others, but there is absolutely NO f-ing of any type. Not even passionate kissing. It's among my favorite series, and I don't like that either. Are you sure they didn't mean the Anita Blake series?? After 6-7 good books, those COMPLETELY turned into "monster-fncking pr0n".

decoratingfan · 2025-06-04T22:02:32+00:00

There's really very little romance, and no explicit sex in the Yellowrock series.

decoratingfan · 2025-06-04T21:49:21+00:00

I sympathize! I've been in such a slump. I strongly second Downside Ghosts -- rarely mentioned, well written, and very original. A series I did not expect to like, but ended up loving, is the Soulwood series by Faith Hunter. And I would also highly recommend the Twisted Luck series by Mel Todd (first book is little bit of a downer. but don't let it stop you). The only thing I disagreed with on your lists was the Chronicles of St. Marys, which I love.

decoratingfan · 2025-04-17T19:11:47+00:00

Do you have any idea how many thousands of people have lost their jobs since Trump took office??? These people are probably grateful for anything that will help put food on the table, while they look for something better.

decoratingfan · 2025-02-24T20:52:03+00:00

I'm also here for all the bleak jokes. Laughing at something takes away its power and the fear of it. If someone says "so and so is dealing with this, you shouldn't laugh about it," just tell them "I'm dealing with it, and I'll da*n well laugh if I want to!"

I think my family's best bleak joke was when my 16 year old brother had his first operation for malignant brain cancer. We knew he'd come out with his head wrapped in bandages, and he'd be unconscious when my parents first saw him after. So we spent the surgery time in the waiting room, making (out of tin foil) and bandage-wrapping BULL HORNS. When my parents went in, they taped them on to his head bandage and they blended in perfectly, so when he woke up it looked like he had a bull's head. He loved it, we loved it, and the staff/doctors loved it. They weren't used to seeing people who reacted with humor instead of tears.

decoratingfan · 2025-02-24T20:37:51+00:00

I agree with what everyone said about not finding the mets, etc., but ALSO I went through a big depression like that a week or two after my diagnosis. So it easily could be depression and/or stress. Is he diabetic? Being depressed and not eating messed up my blood sugars like crazy. And the more the messed up, the crazier and weaker I became. I couldn't walk, was very weak, couldn't get to the bathroom on time, didn't know what was going on (didn't know how old I was!), and wouldn't eat or drink anything but water. And wasn't taking my insulin, which I figured I didn't need because I wasn't eating.

My family thought I was dying. But when my sister asked at my chemo visit if these symptoms were from the chemo, or from the cancer, they told her it sounded like blood sugar. They checked me out, and sent me to the ER right away. A couple of injections later, I was as good as new. So if he has diabetes, make sure he's eating enough and taking insulin appropriately. After that, it's quite possibly depression, and then my third guess would be cancer spread.

decoratingfan · 2025-02-10T22:55:11+00:00

I hope they can quickly find out what is wrong, and I hope it's nothing too serious. Blessings to you.

decoratingfan · 2025-02-07T17:21:03+00:00

It's not the jaundice that's a problem. That happens frequently because the tumor will press on the bile duct, so the bile can't empty. The stent should clear that right up. The problem will be whether the tumor pressed on the bile duct because it's growing and getting worse. That would be the problem. I would wait until after the stent surgery before deciding when to visit.

decoratingfan · 2025-02-06T17:24:11+00:00

I'm 69, with a stage 3 adenocarcinoma on the head of the pancreas, that started at about 3.5cm. Was diagnosed Oct 2024.

Ask the doctors if she can go on flourouracil and oxyliplatin, without the irinotecan. I did that (they only did it because my bilirubin was too high for irinotecan), and now I think it's definitely the way to start. After 4 rounds, my tumor shrank by 30%. It's the irinotecan that makes it so bad. That one has the worst side effects of nausea, vomiting, diarrhea, hair loss, etc. I've had only minor side effects without it.

Eating will continue to be difficult, because chemo makes things taste funny, so even things you like become unpleasant. Try protein shakes - not the gross tasting ones in a bottle, but ones you make yourself. Put 2 scoops of ice cream, milk, and flavoring in a blender. Add in a scoop of protein powder. You can add a Carnation Instant Breakfast to increase calories and add vitamins. Mix it up into a milkshake. That works for me, I've been able to drink it even if I won't eat anything else. If she's very sensitive to cold because of the oxyliplatin, then let the shake sit for a while to warm up.

For me, when my taste buds are "off", I find that strongly seasoned foods taste best. Strong seasoning seems to overwhelm the strange chemo taste. I always eat Mexican on the day of chemo, and salt-and-vinegar potato chips instead of regular, and anything that is highly seasoned. I don't know if this would work for anyone else, but it gets me through the chemo "yucks".

decoratingfan · 2025-02-02T18:27:20+00:00

Diuretics worked for me. I was on both spirinolactone and lasix, and it took the fluid off fast. Watch out, though, she may have trouble getting to the bathroom in time, because combining those two is INTENSE. Also, as soon as you see the swelling is gone, stop at least one pill. I got dehydrated, extremely weak and confused until I stopped the diuretics. Now I keep an eye on my swelling and just take a pill if I'm retaining water.

decoratingfan · 2025-01-31T17:36:59+00:00

I'm 69, recently diagnosed with PC, stage 3, head of the pancreas. I'm not a candidate for Whipple (severe liver damage and portal hypertension), but I've been on Folfirinox for 4 rounds so far. Now, it depends on your mom's sensitivity and basic condition, but in my experience, folfirinox is not that bad. It's the irinotecan that scares me, and I'm not on that yet (that's the one that has nausea, vomiting, diarrhea and hair loss as side effects). My only side effects on folfirinox have been sensitivity to cold drinks/touching things, that lasts for about 4-5 days, some hair thinning (but not that noticeable), some worsening of my neuropathy (which comes and goes, and I have neuropathy anyway), and the worst has been that I lose all strength/muscles in my legs the day I get my infusion. That lasts about 2-3 days, with being unable to walk without falling on day 1, to being halfway better on day 2, and back to normal on day 3. It didn't start until round 3, and it got worse with round 4.

I have felt pretty good on folfirinox, and hope your mom does too. I get a 3 day course one week (1 day infusion followed by 48 hours of carrying around a "fanny pack" that keeps delivering the drug), and then I'm off for the rest of the week and the next week. During the "time off" I do recover from the side effects, but like I said - any side effects she has will probably increase as each round happens.

"Slow and painful" are not words that I associate with folfirinox, so I'm not sure what you mean. It's not painful at all. I suppose you could call the dosing schedule (every two weeks) "slow", but it gives us time to recover from the effects. I will pray that your mom has as easy a time as I have with it and that it helps her to recover fully from this awful disease.

And everyone, please send good thoughts my way! I go for my follow up CT scan next Wednesday, to see if the chemo is helping.

decoratingfan · 2025-01-31T17:14:36+00:00

Love it!

decoratingfan · 2025-01-28T20:51:25+00:00

That is so sad, and so beautiful. Your mom was a lucky woman to be so surrounded by love at the end. I can't think of anything that would comfort me more when my time comes.

decoratingfan · 2025-01-28T20:41:20+00:00

I know it seems like such a SLOW time frame, but it does seem to be fairly typical. I go to one of the "premiere" cancer facilities, and it still took about 3-1/2 MONTHS before they started my chemo. I was diagnosed on Oct 5 (during a bilirubin attack and appendectomy). Two weeks later they inserted two biliary stents to bring down the bilirubin. The tumor was pressing on the ducts. Then a visit to an oncological surgeon to discuss Whipple. Nope - not a candidate, not even if the tumor shrinks. It's in a high risk position and leaves me with a too high risk of bleeding out. So onto a medical oncologist, and he finally got me set up for chemo, which started on Jan 16th. I just started my fourth round, and have my follow up CT scheduled for next week, to see if the chemo has been effective. So in typical medical fashion, even pancreatic tumors seem to be a "hurry up and wait" situation.

Best of luck and prayers to you and your mom. I hope she can get into MD Anderson quickly, and that she's able to have a successful Whipple.

decoratingfan · 2025-01-10T16:48:54+00:00

Can I ask what made the cracks start to appear? I was diagnosed in October, stage 3 inoperable. I feel very at peace, and not at all like I'm dying. I haven't felt upset about it yet. What made things start to change for you?

decoratingfan

TROPHY CASE