Pancreatic Cancer Group: Introduce yourself and connect with others

Thank you so much for your response. I read so much about what people are going through
with Chemo but my Husband has decided up till now that he does not want Chemo. Even though he is doing fairly well, he is not the man that he was before the Surgery and before the diagnosis . He was always a big, strong man that did all of the heavy lifting. Now, it is tough for him to carry a bag of groceries. This is so frustrating to him and when he sees me doing things that he feels he should be doing, it is even worse. He has also gone through a lot of depression and at times, his frustration is taken out on me. He always apologizes afterwards and feels horrible that he said something to me or the way he said it to. I do understand but it still hurts at times.
I try to stay super upbeat around him but there are times he is afraid. This is what I don't know how to handle. I tell him we are all dying but none of us know when or how. I know that does not help him at all. I honestly feel so guilty at times that he has Cancer and I don't.
We have been through so much in our 50 years of marriage both good and bad but we always went through it together. Even though I keep telling him that I will be with him through every bit of this Journey, I feel like that is really not true because I don't have Cancer.

@suelannon Same story for my husband, Surgeon said he got it all and surgery was curative. Our oncologist refused to believe that and there was friction between surgeon and oncologist. She kept my husband on Gem-Abraxane for 14 months. He was in relatively good health and we traveled a little. Then he had to do knee replacement surgery (I thought it was a good idea so we can do hikes again). At that point, PET scans were clear and he looked disease-free. Then complications from knee surgery, a stress fracture and CA19-9 markers climbed from normal to hundreds. Still clear scans. Surgeon recommended more tests but there seemed no reason to do it. Then the next scan picked up recurrence at the resected edge. He went for VMAT with Capecitabine but that did not work. And with the months off chemo, there is some peritoneal spread. He suffered what we thought were side effects from the radiotherapy for over weeks. He could not eat; he had nausea, threw up, had chest pains, had reflux, lung infection and a persistent cough. Chemo (a new regime) could not restart. The onco warded him and now doctors are trying to figure out what is causing all these eating problems. He is being fed intravenously now. My husband developed a volvulus stomach after surgery and I hope doctors are looking into that. The onco will put my husband back on chemo once my husband gets some nutrition into him and gains some weight.
Surgeon miffed with us for not doing more tests. This journey is hard enough for lay people like us; we know nothing and rely on doctors. And sometimes doctors do not help! My mantra is to be our own advocate (read, reasearch, ask questions, change doctors if really necessary) and my husband is not a statistic.
I have kinda 'lost' my husband because he was the problem-solver, the optimistic half-cup-full person, the one who would drop me at the entrance so I need not walk in my heels from the carpark, the one who went to the grocer's when I forgot some ingredient in the middle of cooking. He is now battling depression plus all the other problems and cancer. I am fighting to get him back.; not giving up!

What a beautiful story and one I can clearly identify with as my ca19-9 was 13,900 up until about 2 weeks ago. I'm 68 and thriving and keeping as active as I can and will be attending my 50th high school reunion this Friday. I've been on the reunion committee via Zoom for several months now and went from an antigen of 11 for almost 6 months to a high of 13,900 and down to 4840. I too have pains that come and go which I know is the activity of the disease so I do not rest easy. I walk almost 2 miles each day and run my single-owned environmental consulting business which I've started the legal steps to hand down to my daughter. I'm scheduled to take a test this month which will guve a certification I've been trying for since 2024; crazy it might seem to others. That's the hope side of me since I am giving gem-abraxane another try, currently. I also have my bucket list, though not much left in it now as I've crossed off a lot since 2023 though I'm writing a small guide for pancreatic cancer patients thst will hopefully help others a bit even after I'm gone. I'm glad you and your husband are enjoying life together now and you are lucky there as my husband's back and neck are so riddled with arthritis now that the majority of his time is spent sleeping just to relieve the pain. But we had many years (since 1980) having carefree fun before we graduated from college and got our careers and settled down with kids, etc. I wish you and your husband well and applaud your approach and am praying for a cure for all of us with this disease.

The "Edit" option disappears after some period of time. (I don't know how long.). But definitely if you notice a mistake right after you post, it will be there, and you can fix it.

Thanks 😊 I tried that but I must have clicked on the wrong 3 dots as my 3 options did not include edit.

Did they remove any of your Lymph Nodes and if so, how many had PC ? My Husband had
Surgery in July 2024. Tumor was in Body & Tail of Pancreas. They removed 20 Lymph Nodes and PC was in 14 of the Lymph Nodes.
He had thee same experience with Surgeon coming in and declaring they got it all. He was ecstatic and I was very critical. Knowing that the Lymph Node System is like a Highway with many Exits, how could they know that it was not in any other parts of the body.
The plan was to do Chemo right after the Surgery but he ended up developing a large abscess
in his chest a week after surgery and had to be rushed to the hospital where they inserted Drains. While in the hospital, his lung collapsed. He went home 5 days later and he developed Pneumonia even though he was on very strong antibiotics. They put him on a Third antibiotic. He ended up losing 50 lbs and was extremely weak. Drains ended up being in for 6 Months. After all of this time, we saw the Oncologist and we were told, he was much too weak for any kind of treatment.
The next CT Scan he had, showed multiple nodules in his lungs so we went back in for a Lung Biopsy and sure enough he has PC Cancer all through his lungs. He is now stage 4 .
His CA-19 levels keep going up and in June it was nearly at 11,000.
He decided No more tests or Doctors until September. He wanted to enjoy the Summer with his Family and go fishing and just enjoy Life. He has honestly had a really good Summer so far. He does get pain in his back, his side and his abdomen but it comes and goes and does not stop him from doing anything.
We go back on September 12th for a PET Scan and all of the Blood Work. I am very nervous about this visit but it was so nice to just not think about all of this for a while. He say right now that he does not want any chemo but he could change his mind and I have told him I would support any decision he makes. We are 71 and celebrated our 50th Wedding Anniversary in July. We are each others Best Friend and I can't imagine my Life without him.
After those 6 Months of him being so sick after Surgery, I thought I was going to lose him then. Now that he is doing so well even though he is stage 4, I feel like he will be here for a long time. I wish someone would tell me what I can expect for the future but I always feel like
we are completely in the dark. Up till now, Oncologist has not even suggested Chemo or any other Treatment. I once asked the Oncologist what I should be on the lookout for and she told me nothing, just go home and enjoy each other and help him get stronger.

No lymph nodes were involved. The cancer was contained in the tail. Whipple was performed successfully and the surgeon assured me the cancer had not metastasized. Famous last words!

Did they remove any of your Lymph Nodes and if so, how many had PC ? My Husband had
Surgery in July 2024. Tumor was in Body & Tail of Pancreas. They removed 20 Lymph Nodes and PC was in 14 of the Lymph Nodes.
He had thee same experience with Surgeon coming in and declaring they got it all. He was ecstatic and I was very critical. Knowing that the Lymph Node System is like a Highway with many Exits, how could they know that it was not in any other parts of the body.
The plan was to do Chemo right after the Surgery but he ended up developing a large abscess
in his chest a week after surgery and had to be rushed to the hospital where they inserted Drains. While in the hospital, his lung collapsed. He went home 5 days later and he developed Pneumonia even though he was on very strong antibiotics. They put him on a Third antibiotic. He ended up losing 50 lbs and was extremely weak. Drains ended up being in for 6 Months. After all of this time, we saw the Oncologist and we were told, he was much too weak for any kind of treatment.
The next CT Scan he had, showed multiple nodules in his lungs so we went back in for a Lung Biopsy and sure enough he has PC Cancer all through his lungs. He is now stage 4 .
His CA-19 levels keep going up and in June it was nearly at 11,000.
He decided No more tests or Doctors until September. He wanted to enjoy the Summer with his Family and go fishing and just enjoy Life. He has honestly had a really good Summer so far. He does get pain in his back, his side and his abdomen but it comes and goes and does not stop him from doing anything.
We go back on September 12th for a PET Scan and all of the Blood Work. I am very nervous about this visit but it was so nice to just not think about all of this for a while. He say right now that he does not want any chemo but he could change his mind and I have told him I would support any decision he makes. We are 71 and celebrated our 50th Wedding Anniversary in July. We are each others Best Friend and I can't imagine my Life without him.
After those 6 Months of him being so sick after Surgery, I thought I was going to lose him then. Now that he is doing so well even though he is stage 4, I feel like he will be here for a long time. I wish someone would tell me what I can expect for the future but I always feel like
we are completely in the dark. Up till now, Oncologist has not even suggested Chemo or any other Treatment. I once asked the Oncologist what I should be on the lookout for and she told me nothing, just go home and enjoy each other and help him get stronger.

No lymph nodes were involved. The cancer was contained in the tail. Whipple was performed successfully and the surgeon assured me the cancer had not metastasized. Famous last words!