Pancreatic Cancer Group: Introduce yourself and connect with others
Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Pull up a chair. Let's start with introductions.
When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?
Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.
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When I was first diagnosed I was given morphine for pain. It worked, but it is slow acting and that meant a lot of ups and downs, including at night. My insurance got some reason didn’t cover an oxycodone product so my palliative care team member put me on a low dose fentanyl patch. That was extremely effective and when the time came, I had no trouble getting off by taking one step with even litter dose.
I would ask your PCP or Mayo team for help with pain management. Don’t suffer in silence! And good luck!
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2 ReactionsI’ve been diagnosed on Aug 18- through My Chart and have a liver biopsy scheduled for Friday. Called Mayo and they will take me as soon as my results are in. In the meantime, I am having so much pain at night and trouble eating. And high anxiety. Any help is appreciated.
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3 ReactionsJust diagnosed by MYChart on Thursday, Aug. 18. Had a brief discussion with PA who ordered the scan and have a liver biopsy scheduled for Friday Aug. 26. I feel my clinic, Park Nicollet has left me flying in the wind. I have questions and no answers. I was a previous patient for knee arthritis at Mayo so I called them. They want the biopsy results as soon a I get them and will slot me in for an exam. I’m exhausted as the pain wakes me up at night. Tylenol mostly helps. Think the pain is related to what I eat and right now nothing is appealing. I need some guidance.
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3 ReactionsHi Debbie, you were asking about enterade? My understanding is that enterade helps alleviate gastrointestinal side effects like diarrhea. Has it helped you?
@iinvesnu We started using Enterade for my wife after discovering it ourselves. She's been taking it 2x per day for 3 weeks so far. It seems to be helping. Won't know for sure until she gets weighed. We weren't expecting overnight results because her system has been destroyed by 3 years of chemo and bile dumping.
She doesn't like either of the flavors but finds the orange a little easier to take.
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3 ReactionsWe have placed an order for these. I will update on how well she does and if she can drink them. Thank you.
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2 ReactionsMy wife is also small and lost weight rapidly after surgery. She couldn't tolerate any of the recommended protein drinks because the folfirinox had altered her sense of taste and smell and just putting those products near her made her sick. We just discovered a product called Enterade which is designed to heal the digestive system and hopefully allow better absorption and nutrition. I'd suggest getting your wife on this quickly to see if you can avert further weight loss. My wife has been in treatment, chemo and surgery for 3 years and her digestive system has started to respond to the Enterade now in the 3rd week taking it 2x per day. You want her weight up before the surgery. Good luck.
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1 ReactionThank you. Taking this to my oncology team. Brenda
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1 ReactionWhen I was on standard Folfirinox from 2012-2014, I only required one administration of Neulasta to raise my WBC count. The 14 day Administration cycle of FFX was never impacted. My platelet counts fluctuated but never low enough to postpone chemo.
Normal rapidly dividing cells although affected by chemo are not impacted to the same degree as malignant cells. My reducing dosage and administering more frequently, the healthy rapidly dividing cell tropes are more robust while the malignant rapidly dividing cells are still sensitive to the toxicity of the drug.
It is interesting that using an antibiotic is more like the metronomic approach.You don’t get blasted with a massive bolus of an antibiotic. They use the Mean Inhibitory Concentration approach where you get a concentration of the minimum amount plus a little extra to be on the safe side to be bacterialcidal against the bacterial strain and at certain time points over the course of 1-2 weeks. Metronomic dosing is similar in this respect-enough of a concentration to kill malignant cells with less impact on healthy cells and easier on the patient.
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1 ReactionThis is wonderful and so glad for you. did you experience issues with platelets and/or Neutrophils? Do you think the metronomic dosing helps with these issues. I had no major side effects except the cell counts. 5FU gave me no issues either. Thanks for your comments.