New diagnosis: locally advanced pancreatic cancer

For neuropathy try Boiron Hypericum homeopathic pellets that you dissolve under your tongue. You can order them from Amazon. Kali Phosphoricum is another homeopathic remedy that many people try as well.

I do know someone who cannot feel their toes 5 yrs later after 12 rounds of the 5-FU regimen. Neuropathy is the worst long term side effect of this treatment & it’s a crying shame that they are administering this treatment yet have no way to block the nerves from being damaged in your fingers & toes. 😡

I’m sorry for the delayed response, I’ve been away.
Neuropathy is ruling my life right now, pins and needles, numbness and a tight feeling in my feet are constant. I have tried PT, cryotherapy, acupuncture, gabapentin, Cymbalta (which seemed to be diminishing symptoms but side effects were worrisome) all which I have discontinued because I was not getting relief. I am presently taking lyrica but I see no benefit, I will discuss this with my dr when I see him next week. It limits me physically but I do try to continue living as normal a life as possible. I also have it in my hands.
As far as following up I currently am getting a CT scan every three to four months. My last scan done locally was misread as recurrent disease, I had my scans and reports sent to Mayo and Dr Truty and his team verified it was normal. I have decided to follow up at Mayo, I do not want to risk being misdiagnosed and having to go through unnecessary procedures, as almost was the case in March. I have a wonderful oncologist locally whose team is incredible but the level of expertise at Mayo is unmatched in my opinion. I just returned from a trip to Florida and am traveling to Paris and Italy in May. I never want to limit my life because I have learned it can vanish in an instant! It will be one year May 4th since my Whipple, and I am grateful everyday that I am on this earth to live life and enjoy my children and grandchildren. God Bless

What was your experience with MSK and Dr. Crane?

@ncteacher What did you decide to do? Have you talked to a major cancer center? Some centers will do more than others.

So much has happened since I did that original post! Quickly... The cancer center where I'm a patient is not listed as an NCI center of excellence, but after some recent mergers, it's now affiliated with an NCI center. (Does that make sense?) I can't complain about the care; it's been good. I did switch oncologists. My first one was extremely negative. My new oncologist is terrific. So far, I've had six rounds of modified Folfirinox. Last one was Wednesday 7/5. I got waylaid from the regularly scheduled round on 7/24 by what turned out to be a gallbladder attack (liver enzymes and white cell count were elevated, and I had extreme nausea). Long story short, I spent a week in the hospital and underwent a bile duct stent placement and gallbladder removal (laparoscopic). My next chemo is scheduled for Monday 8/21. I'm dismayed by the delay, but it's understandable, and I'm trying to use the time to recuperate and build strength so I'm ready to resume chemo. Best news of all: My CA 19-9 tumor marker has plummeted from 1736 in mid-March to 276 on 7/24. Still too high, but the cancer is (so far) responding to the chemo. Yay!

Lvtexas. Thats good news
I have unresectable mass
Have duodenum stent which lasted a year then second stent put in failed in month so difficulty in food getting thru. I am currently using IV TPN I also have bile duct stent , again made it a year or so but needed second stent as it also was being clogged.. i now have bile drain bag. Im assuming you are ok after gall bladder removal?
I had proton 5 day radiation back in Sept of 22 which gave me a good 6 months of quality time but since second dueo stent in April that failed its been downhill. Then the bile stent clogged up
Drs are trying to get my albumin # up so I have a chance of recovery if I get gastro junectomy. Where my junem( top part of colon) is reconnected to stomach bypassing duodenum. Has anyone had this done??

For any supplement you must inform the oncologist. Homeopathy is dubious at best. A major cancer center monitors your neuropathy and adjusts the doses as needed.

You must be getting your info from a medical doctor who knows zero about homeopathy! Lol Kali Phosphoricum pellets have been working for me within 3 minutes for cold sensitivity/tingling. No lingering side effects. Have only had to use them a couple of times. No adverse effects either. My oncologist also said no to ozone therapy which is an oxidizing treatment that works hand in hand with chemotherapy. I have read books on it, with studies included, written by Dr Frank Schallenberger, MD & HMD. My CA19-9 is drastically declining weekly and I truly believe it’s because of the ozone therapy treatments along with the chemo. My oncologist says that ozone therapy is not FDA approved (and he knows nothing about it). Well lots of harmful things doctors prescribe ARE FDA approved!!! Oxygen in your bloodstream kills cancer cells! I read & do tons of research. I do know that much. If you don’t do your own research & advocate for yourself you may end up paying the price. I am just sharing what is working for me. Everyone honestly should do what they feel is right for themselves. Best wishes & good luck to you!

I am a bit distressed by your belief, frygirl, that "Everyone ... should do what they feel is right for themselves."

IMO, folks should listen to science, in most cases requiring some form of interpretation - these folks are usually medical doctors. "Everyone" IMO should not do what they think is best, especially given the propensity of some to pick up on magical treatments found on the internet.

Unless you are a qualified medical professional (please let us know), and actually understand the interactions, perhaps you should not malign doctors and the FDA?p and science?

Again, IMO, if your CA 19-9 is declining, it is because of the chemo.

To allow others to judge your statements regarding O3, they should read this link, and the hundreds of others warning of dangerous side effects of ozone treatments.

I am finding that people “prey” on people with a cancer diagnosis. How do you know what’s real and what’s fantasy?