Pancreatic Cancer Recurrence after Whipple

Hello @pete1962

It has been a while since you last posted. How are you doing? I look forward to hearing from you. Will you post an update as you are able?

Hello @survivorswife2016

So good to see a caregiver join the NETs Support Group. I am so glad to see that your husband is seven years clear now. That must be very encouraging for you both. How frequently does he have follow-up scans and tests?

I look forward to hearing from you again. Will you post an update as you are able?

Hello @joannc63,

It has been a while since you last posted. Are you continuing with chemotherapy? How are you feeling?
Will you post an update as you are able?

Thank you so much for replying with this info. It is valuable.

Thank you so much for checking in Unfortunately I did have a recurrence and had more chemo abraxine and gemzar and it has kept everything stable. I'm grateful for that and every day that I'm feeling better thank you so much for checking in it means the world to me I hope you are doing well too feel free whenever you want to update me again it's much appreciated that you contacted me it keeps me up beating known people care about me have a wonderful day JoAnn

I am doing well Everythimg is stable. How are you? Please let me know when you are able. As always Thank you again again checking in. Your supoort is invaluable.
JoAnn Campbell

Thanks for reaching out. He had quarterly follow ups with the surgeon and Oncologist for the first three years and then bi annual follow ups with bloodwork still quarterly and CT scans bi-annually. I guess reoccurrence before the 7 year mark is common. Just recently we were contacted by the Oncologist for a visit. Evidently the CEA (tumor marker) has been getting elevated and also the PSA. Just started a round of testing MRI’s, CT scan and upper and lower GI scopes. Kind of concerning but praying that because they watch him so closely it will be something we can take care of soon with some form of treatment.

Thanks for comments snd questions.

Hi everyone

I have some updates on my progress. After a Whipple procedure in May 2019 recurrence of tumors on my liver was first suspected in December 2022 and finally confirmed early 2023. I was diagnosed with Stage 2, multiple well defined tumors with the largest being 2.5cm in size. My number of lesions and their locations make surgical removal currently impossible.

I started with monthly SSA injections end of March and am lucky that I have no side effects experienced so far. I had a CT scan end of June which was sent to a multidisciplinary review team and I should get their assessment next week...fingers crossed the SSA achieve what we all wish for.

Mentally the journey has been difficult, especially when I learned about the recurrence. I felt fit and never had any kind of symptoms (not even before I had the Whipple procedure). Once I learned about all the treatment options I was able to refocus my mind and I convinced myself that this thing is not ever going to kill me! Of course, deep down I know that there is a chance that I am wrong but I will deal with this as and when...

For me personally a positive outlook makes me calm and allows me to live my life as normal as possible...besides the monthly injections and the Creon I have to take with food. More importantly it also helps my loved ones to cope better with the situation.

I will keep you all updated about my journey.

Peter

I will keep your experience in mind. I am now two months post Whipple. Everything was fine with the pathology and CA19-9 in the normal range. Just learned my Guardant 360 was positive for ctDNA. It is discouraging after the six months of chemo and recovery from the surgery but so many have had so much to deal with I will keep all of these experiences in my thoughts as I go forward with my life.

Peter, what is an SSA injection?
I am surprised a CT scan in June would not return results in over a month. I hope it’s back by now and the results are positive!