Pancreatic Cancer Group: Introduce yourself and connect with others

Praying for good results

Hi @randyokey, there are several discussions about eating with pancreatic cancer. Here are a few you might find helpful:
- What to eat when diagnosed with pancreatic cancer?
https://connect.mayoclinic.org/discussion/what-to-eat-2/
- Husband won’t eat
https://connect.mayoclinic.org/discussion/husband-wont-eat/
- Still losing weight: Does timing of Creon help?
https://connect.mayoclinic.org/discussion/still-losing-weight/
How did the first chemo treatment go?

To marienewland:

Just to follow-up; I've been going to the Leonard Cancer Institute in Mission Viejo, CA.

My Whipple surgery was at the Providence Mission Hospital. Unfortunately, I had a nicked bowel and was at the hospital for 6 weeks with various infections. Someone suggested tis hospital instead of Hoag. However, like you, I missed my window to do the followup chemo and it also has messed up my "possibilities to be cancer free."

I was disappointed at the care from Providence hospital.
The Leonard Cancer Institute has been very helpful in my before and after care. I would recommend them. I'm almost at the point of clinical trials only. Current CT scan did not look too good. Waiting my CA19 results now.

Clinical trials can be life saving. The hospital in Duarte California has something interesting underway. As does Honor Health in Phoenix and many other places. You might start your search for the right one with a patient navigator at pancan.org
Ultimately, you do need to make the calls yourself but they can help narrow the studies to match your situation. Don’t give up, fight!

That is quite the surgery story, @jewelziet. Did they know that your Whipple would require longer than usual beforehand? How long ago was your surgery and how are you doing today?

Hi, I’m Ken’s wife Sandy, he was diagnosed in August of ‘23. He’s had 6 rounds of chemo and about to have a distal pancreatic surgery. Which is removal of spleen, tail and most of the body of the pancreas. Wondering about what kind of diet he should be following after surgery.

@colleenyoung Yes, my surgeon let us know ahead of time that surgery would most likely take at least nine hours and that he was bringing on a transplant specialist as well.

My surgery was on Aug. 15th, the first day of school for my four kids(5th grade - 11th grade). We managed to get the family through with smiles intact, but the kids are still processing. My youngest recently shared that the first day of school was really hard because she didn’t know whether I was alive or not.

My family all knows the stats for pancreatic cancer, so we’re living in the moment.

According to my doctors and my medical professional friends, it’s hard for them to believe I had the Whipple. They said I looked amazing. I can say that recovery was rough. There was a reason none of my medical professional friends or doctors told me what recovery would be like. It could be used as torture.

I’m currently working with a dietician as we wait for my brain to figure out the changes to my digestive tract. I dropped 8 clothing sizes since my surgery. Weight loss seems to have plateaued for now.

While I’m now able to help with school pick up and drop offs, I’m still not able to take on my former role of stay-at-home mom. My husband has been primary caregiver for the family, as well as in charge of my medical care. I struggle with exhaustion and pain still. My palliative care doctor believes my pain is due to nerves forming new connections. I’ve been off prescription pain meds since Sept?? I now prefer to tough it out and use cannabis at night after the kids are in bed. I don’t care for how pain meds or cannabis makes me feel, but I prefer cannabis over morphine. My palliative care doctor is fully onboard as well.

I’m still waiting for the neuropathy in my hands and feet to dissipate, as well as my cognitive fogginess.

I’m an artist and I lost the ability to do art while on chemo. Not being able to feel the soles of my feet is challenging as well. The other day, I fell out my front door since I couldn’t feel the ground.

Honestly though, I’m doing much better. Chemo was really hard. I had severe diarrhea and had to use Depends at times, I ended up being physically capable to using a cane to using a walker. All that is behind me, but I’m still a bit unstable on my feet due to lack of sensation in my feet.

The first month or of hospital was really challenging. I had a PIC line for a month afterward with a home nurse who visited three times a week.

Concerned that my husband's oncologist at Dana Farber wants to watch his stable tumor instead of treating it with more chemo. The pancreatic surgeon at Brigham & Women's ,Dr Tom Clancy won't operate because of vessel involvement so I would like to see the oncologist be a little more aggressive . It's concerning that he want wants to wait for the tumor to become unstable before treating..
I have heard of surgeons at other hospitals that do operate on tumors with vessel involvement
Wondering about second opinions on treatments or is it normal to wait for a tumor to become UNSTABLE?

Hi Sandy, welcome. Several members have had distal pancreatic surgery along with removal of the spleen. You might wish to join this discussion:

- What's recovery after distal pancreatectomy and splenectomy like?
https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/

For me, it was very exhausting. They took out 3/4 of my pancreas and my spleen and left the head of the pancreas. Only all my cancer is gone. Just need to be treated with chemo and go from there and trust the Lord. He’s faithful I will tell you two weeks out. I’d develop an abscess in my pancreas. This was excruciating pain I was septic it lasted about six days. Praise the Lord. The antibiotics kicked in God‘s faithful I pray yours Will be too