Pancreatic Cancer Group: Introduce yourself and connect with others

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 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.

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.

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?

Let us both be hopeful! The fact that your husband started noticing things is a sign! When my husband noticed something I wore a couple of months back, I could have sat down and cried buckets! I know exactly what you mean about the "medical position" - cancer was not in our families; my father-in-law passed at 99 a couple of years back, my mother is 92. But if Gem-Abraxane keeps them both alive with hopes that the side effects get more and more tolerable, we can both live with the long-term chemotherapy! And pray for a cure. If you have read the posts by @stageivsurvivor, Folfirinox was not even approved just over a decade ago and I believe Gem-Abraxane is a recent thing as well.

My husband's CA19-9 numbers came down dramatically during those 6 months which is why he kept at the folfirinox. The doctor gave him the choice to stop as it really was terrible for him (and for me). He definitely could not walk a mile when on folfirinox. The G/A so far is definitely easier to tolerate, though still on the couch most of the time. But, he's back to noticing what is going on around him which is nice. Just pointed out the crescent moon and venus hanging in the sky. Nice to be able to converse again. Yes, I am hopeful. Just didn't think we would be in this medical position for another 10 or 20 years... I just lost my mom at 100 years of age, and we've always been so healthy that I assumed we had decades left for kayaking and hiking. You just never know...

Folfirinox was really tough on my husband - fatigue, significant weight loss and generally no energy for anything. He only did it for 3 sessions (once a fortnight) and I take my hat off to your husband for doing it for 6 months! My husband could not walk 100 yards much less the mile your husband did! Because CA19-9 numbers did not come down, oncologist switched my husband to Gem-Abraxane quite quickly. Side effects much more tolerable. First it was 3 weeks on and 1 week off, then it became fortnightly with the occasional 3-weekly to allow us to travel. Hoping that it will be the same for your husband. If your husband responds well, you may not be dreaming of walks. By the 6th month of Gem-Abraxane, my husband and I were doing daily walks of just under a mile. Caregiver's job is to do the nagging, the prodding, the encouraging, and the being hopeful.

Anyone familiar with intraductal papillary mucinous cyst of pancreatic tail?
I just got diagnosed and will meet the surgeon in 10 days.
What are good questions to ask?
Can anyone share their experience?
Thank you.

Great- hope it improves his quality of life !

My husband's CT scan showed no change. He will have low dose chemo every two weeks. Good luck!