Pancreatic Cancer Group: Introduce yourself and connect with others

Husband new to gem abrax. Finished 12 rounds folfirinox, whipple now couple of small liver metastasis. 3 weeks gem 1 off. 1st treatment very hard. Short of breath, very tired just not feeling well. Is this typical? Does it get better?

My husband never had whipple or Fulforinox and every person reacts very differently to treatments. He was exhausted and didn’t have much of an appetite in the beginning but with three anti nausea drugs and very low dose steroids it helped a lot. Still only gave him one or two good days until the week off though. The two weeks was a game changer for feeling better.

@chrkuh After first session of Gem-Abraxane my husband's blood results were disastrous. He needed a blood transfusion the week after first session and three daily jabs of a booster for his white blood cells. He could not walk 100 yards; he was breathless all the time. It got better. After 3 months (3-weeks on, 1-week off) blood results better. Energy levels picked up. He has been on it for 10 months now: side effects are minimal and chemo sessions are fortnightly (and can be stretched to 3-weekly once in a while). It is a new normal but he is here with me and we can do quite alot of the things we used to do.
You may want to ask your husband's oncologist to put him on iron tablets. That will help with the red blood cell count and therefore help with the breathlessness.

Thank you. Every step is so scary and unexpected. I am so glad to hear that your husband is working through these awful symptoms. They need to be so strong...and we for them. It helps to hear this is somewhat expected.

@chrkuh Knowing other people's experiences help. That is why I am on this forum - it helps me to read about other people's experiences. There are textbook answers that are so frightening. Doctors cannot know how each person responds. So I stay hopeful and positive, and take one day at a time - sounds easy; I know it is not but many here have done it.

I was recently diagnosed with pancreatic cancer. I’ve been seeing a functional doctor for treatment. My CA19-9 number has been coming down. But I suddenly developed shakiness and twitches and loss of appetite. I’m taking creon but it doesn’t seem to help so now I’m losing a pound per day. I’ve an appointment with a GI, but I have to wait to see a neurologist. Any suggestions? Thank you.

I was recently diagnosed with pancreatic cancer. My CA19-9 numbers were steadily dropping with a combination of chemo and alternative therapies. I was doing pretty well. I was getting ready for SOT and dendritic cell therapy. However I suddenly developed shakiness and loss of appetite. I’m waiting for the GI doctor to call me back about the loss of appetite. I can’t see a neurologist until the alternative doctor sends in a referral and I don’t know how long it’ll take to get an appointment. Maybe 4-6 weeks unless they consider me an emergency. I’m totally relying on God to guide me through this and to heal me.

Glycine? I have it, I thought it was just a sweetener. How do you use it, and how much ? Thank you.

You should go to a pancreatic center of excellence to get the best possible proven treatments - in my opinion. Time is of the essence. The sooner you get the best scientifically proven care, the better your chances of a longer life. God Bless.

@clfjhf
What is SOT?
I got twitches when I was on the gem-abraxane chemo. Now I’m just on gem due to an onset of neuropathy. I’ve only had 1 treatment like this so I don’t know if the twitches was just due to the abraxane; my guess would be yes. I get shakiness with low blood sugar and need to consume some sugar. Check your blood sugar when shakiness occurs in order to rule this out. I agree with gracect to stick with treatments based on clinical studies with successful outcomes delivered through an oncologist as time is of the essence. Wishing you good wishes on your journey.