Stage IV

Sorry about your brother's diagnosis! I'm a newbie at this, just being diagnosed at stage 4 myself in April. But it sounds like you all have a ton of questions. This board is a good place to start, as is Google. I would suggest you write down questions so you can ask his oncologist. I keep a notebook that I use at all my appointments, and I jot questions on sticky notes or separate papers so I'm prepared. As you all work through this, you may want to work with a National Cancer Institute comprehensive cancer center; there's a list online. Based on this board's activity, many people seek second opinions and travel to facilities to work with certain MDs, so that may be something to explore.

Re the nausea, yeah, modified Folfirinox has that reputation. Based on my tiny experience, if he was sick for only three days, that's great. I was nauseated for a week and a half after my first chemo and had diarrhea for a week of that as well. Did your brother receive prep meds before the chemo began? I get Zofran, dexamethasone and Emend via IV first. As you inquire about the oral meds, ask what's dosed before chemo. Perhaps there are some adjustments that can be made. Re surgery, there is a procedure called the Whipple. I don't know much because I don't qualify for surgery due to blood vessel involvement. If you search for it on this board and/or online, you'll find explanations that will help. I have not heard of dual thermal ablation, so thanks for that tip. It just went onto my own list of questions for the oncologist.

Look at Atlanta Liver and Pancreas Surgery with Northside hospital. Dr. Eddie Abdalla. 14 years prior to Atlanta with MD Anderson. Consults with a tumor board and will give you a thoughtful wise plan and an understanding of what it will take to get to surgery. Chemo first! It worked for me and got me to pancreadectomy and liver resection!

amchurch,

Sorry for the diagnosis, as well. You don't note where the mets are, how advanced the tumor is, or its location?

To have an improved chance, he needs to relocate to a major center - MSK, Anderson, Mayo, etc. This needs to occur as soon as they agree to accept him as a patient. Any center will be able to perform a laparoscopic Whipple - if they don't do these, then, IMO, they are not a center of pancreatic cancer excellence.

Go to the pancan.org website - call and talk with the various centers.

I had terrible nausea after my first folfirinox infusion. Lost 10 lbs in 10 days. My team did several things that has substantially helped. First, they have added saline infusions on the day of the chemo, on the day the pump is disconnected and in day five after the infusion. They also prescribed Olanzapine which has been a game changer (reduce nausea, increase appetite). On day of infusion they also are providing anti nausea treatment. Finally, I take Zofran 3x per day and compazine 2x per day. Since these adjustments, I have not lost more weight and I am able to work through out the two weeks after the infusion.

I receive my fourth infusion tomorrow. Hope this helps.

Pancan is very helpful in showing the volume of surgeries performed at various hospitals, some may be in your area. But it is very important to see physicians that specialize in this area. Preferably pancreas and liver, which is the first place it normally metastasizes. Surgery is curative, but not alone once you are Stage IV. The disease is systemic so we t must also be treated that way. This is not a one and done disease. But it can be managed just like many other things are, to give you your best life! You must get to physicians that have survivors in their practice! Not just GIs!

Thank you for this information @mimimmx. He lost about 12 pounds in the few days following treatment. As soon as he started feeling better, he has put 8 pounds back on. He's eating at least 2000 calories a day and drinking at least 1800ml water per day. On his day of chemo, he did have anti nausea and fluids prior to infusion. When they disconnected his 5FU pump 2 days later, they gave him more IV fluids and anti-nausea. They wanted to do more fluids 5 days later but he didn't at all appear dehydrated and he was eating and drinking like a champ. He got really annoyed because on his week off of chemo, he doesn't want to go into an infusion center...which I understand that. They recently gave him Olanzapine as well. Do you stay on the Olanzapine daily (they told him to take it at night) in addition to the compazine and zofran every day after infusion up until your next one OR only when nausea presents himself? You have been super helpful. Sounds like you are doing great during your infusions? Are you seeing someone at the Mayo Clinic?

Thank you. The mets are in a few lymph nodes in the abdomen. He had a PET scan and a few spots lit up in the lungs but they are so small they are too small to even biopsy to get an adequate tissue sample. Some of my radiologists said without an actual biopsy...those spots in the lungs could be infectious or granulomas. I don't know for sure. The tumor is 4.8x5 on the head of the pancreas. According to one of my rads, it appears to not be interferring with anything else and could be resected if need be. It is not in his liver. We have contacted Mayo, Dr. Mark Truty, and they are waiting on his medical records. Do you have experience with this personally? I really appreciate the great information you have provided.

Thanks for all this great information. You guys have all been extremely helpful. It feels as though if you don't advocate for yourself, you will not get the best care. It's sad. Local oncologist keeps saying Standard of Care. We want better than the standared of care. MD Anderson may be too far...not sure but Atlanta is not so bad. We have his stuff submitted to mayo clinic in Rochester, MN. We also are sending it to Sloan. He has his stuff so far sent to NY presbyterian/Columbia University at NYC to see Dr. John Chabot as well. I've been researching my butt off for him. He's off to the right start....chemo first. I'm so glad to hear your news. I'd love to be able to communicate with you with any questions we may have. IS there a better way than this discussion board? Thank you again. You all have given this young man and my family hope.

amchurch,

My opinion - if the center does laparoscopic pancreatic cancer resections, and specialize in pancreatic cancer, then they are an option. If they don't, then I would find one that is - now, the point is not that lap surgery is always used, but if they don't do lap pancreatic cancer surgeries, they are not a center of excellence. This, to me, is the defining component - it is hard, long and takes dedicated teams.

If the center of excellence that you can get seen by is out of town - go for the first visit, then plan on moving there. IMO, returning home for oncology and radiation is not the right thing to do.

Thank you for all this information. How are you handling things so far? Who else have you reached out to? I have asked him to start a notebook at all his appointments. He's a guy so not sure if he has lol. I, however have been killing myself doing research and trying to find alternatives. Listening to podcasts all day as well. Now I have heard modified Folfirinox before. What does the modified mean exactly? And yes he has been fortunate so far. Nausea for 3 days and diarrhea only twice. Prior to infusion he received anti nausea and fluids intravenously. But when you say prep meds....I think they have only been administering Zofran and Compazine. From where I work. I know a lot of patients cannot handle Compazine. He has no oral meds prior to chemo yet that I know of. And you are welcome. If you look up this dual thermal it sounds so promising but I'm not sure who offers it. If you find out anything...please let me know.