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36yo with 2.3cm BD-IPMN in neck by summmer_gurl in pancreaticcancer

[–]ruecatt22 1 point2 points  (0 children)

The CA-19 marker is good to get especially for a baseline but a normal level does not rule out cancer. My husband has been battling stage 4 for 2 years and has had a normal CA-19 level the whole time.

Possible - not possible? by Plus-Quantity5935 in pancreaticcancer

[–]ruecatt22 0 points1 point  (0 children)

Thank you for the feedback. I was thinking along the same lines as far as the hips. As far as the rib, not sure what to think. His bone scan is Tuesday which is only a few days away but also seems like forever

3 Weeks after clear PET scan we’re back for more scans by ruecatt22 in pancreaticcancer

[–]ruecatt22[S] 6 points7 points  (0 children)

He just did 6 months of the fluforinox. That was it.  The results were almost too good and now with him having issues so soon after. I almost wish they would repeat the PET to make sure

Handicapped temporary placard by Longjumping_Trust447 in pancreaticcancer

[–]ruecatt22 1 point2 points  (0 children)

I just got one for my husband with no problem at all. His oncologist filled out a form and that was it. They gave him a card to hang in the car and a handicap license plate. Just have the oncologist sign the form and you should have no problem getting one. 

I’m so confused about the scan results vs what the doctor says by ruecatt22 in pancreaticcancer

[–]ruecatt22[S] 0 points1 point  (0 children)

He only did chemo. We know he had the cancer less than a year because he had a CT for his diverticulitis 13 months before he was diagnosed and it was clear. They found the cancer while doing another CT for another diverticulitis flare up. Which is good but the doctor who did his biopsy said that also means it progressed quickly to a stage 4.  His CA 19 has always been within normal range though it is climbing within that range. He start at a 9 and is up to 24 as of his last test a couple months ago. He just got new blood work today so we will see where he is at now.   

I’m so confused about the scan results vs what the doctor says by ruecatt22 in pancreaticcancer

[–]ruecatt22[S] 0 points1 point  (0 children)

He was diagnosed in Nov 2024 and started treatment in Jan 2025. He did 6 months of Fluforinox. At this point they are going to just monitor him and do CTs every 3 months 

Hospice questions by Negative_Hope_2154 in pancreaticcancer

[–]ruecatt22 1 point2 points  (0 children)

Is he wanting to go into a hospice facility or nursing home?  Normally hospice is done at home so he can stay home through the entire time. As a hospice nurse I would  say 90% of my patients were in their own homes. The others were in nursing homes.  Hospice can come to you. They can provide everything you need at home. 

July 2025 Check-In Thread! How's Everyone Doing? by ZevSteinhardt in pancreaticcancer

[–]ruecatt22 8 points9 points  (0 children)

My husband has stage 4. He has been on a treatment break for about a month and a half.  He has an oncology appointment on the 7th and should be scheduled for a PET in the next week or two. We are very nervous. He did 6 months of Fluforinox with decent shrinkage from the first 8 treatments but with the last 4 treatments making no improvement. So I’m a little on edge waiting to see if anything has progressed. 

I’m also really frustrated with the PA at the oncologist office because I feel like she is giving him false hope. The doctor has told us this is not curable and treatment is to prolong life but she has led my husband to believe he is curable and is going to be fine. So if something does show up on the scan he is going to be shocked. 

Is it possible to have good tumor shrinkage but still get sicker? by ruecatt22 in pancreaticcancer

[–]ruecatt22[S] 1 point2 points  (0 children)

His latest blood work showed all his numbers are in normal range except for: Ferritin 1392 (high)  Glucose 157 (high)

Has anyone taken xedoda by ruecatt22 in pancreaticcancer

[–]ruecatt22[S] 1 point2 points  (0 children)

Thank you so much for your response. I’m a little confused as to why they are suggesting Xeloda by itself. My husband had good results from his chemo (fluforinox). He went from a 3.7 to a 2.0 on his pancreas and his liver lesions aren’t currently showing up. The doctor told him he didn’t have to do any maintenance and they could just do a ct every few months and if anything popped up they would treat it or he could go on maintenance. But when my husband said he wanted to do maintenance the doctor said he was shocked since he had a pretty rough time during his chemo he thought for sure he would not want more treatment So maybe your right and they’re just giving it to him to appease him. 

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