Mom was Diagnosed with Borderline Resectable PC

[JohnDoe60]

Hi,

In 2010 I signed up to a Multiple Myeloma forum because my Dad was diagnosed with the disease. I was devastated and hoping that I would never ever have to sign up to another cancer forum.

My Mother has been relatively healthy until she complained with some gastric problems in October 2018. She had been seeing a gastro specialist who told her that she had an enlarged bile duct. Fast forward to early 2019, I noticed how my Mom had become very thin and still complained about the stomach cramping.

We immediately seek for a second opinion and the Doctor ordered some Abdomen USG and ERCP. There was a 3.5cm mass on the head of her pancreas, and some ill-defined nodes on her liver. We had a CT and an endoscopic US that confirmed her PC. Though I had hoped that it was PNET, it was indeed Adenocarcinoma.

Bad news: she was inoperable. But the doctor was positive and she was given mFolfirinox. The surgeon gave her the benefit of doubts that those ill-defined nodules on her liver were not mets. So we proceeded with the chemo and if the primary shrunk then she would undergo a Whipple.

After 4 cycles (2 months), her primary shrunk by over 30% (to 1.9cm), and so she was given a month break to gather up some strength to prepare for surgery. The surgery was longer than expected because the cancer was actually much bigger than the scan told us--it was 3.6cm when they took it out.

Unfortunately 1 of her lymph node was positive and R0 was not achieved around the SMV (R1), though R0 was achieved in other cuts. Sample confirmed moderate to poorly differentiated Adenocarcinoma.

After resting for 8 weeks she continued mFolfirinox last week. She is down over 5kgs since the first day of chemo and over 10kgs compared to her healthy times.

We are due to have mFolfirinox next week. Though she was able to tolerate the first 4 cycles, this 5th cycle really bombed her--now she develops mouth ulcers and her appetite does not regain by the 2nd week. I am worried whether she can finish the whole 12 cycles... but I'm glad that she is still around.

Aside, my father, though he relapsed last year, is going to be a 10-year cancer survivor next year in May. I am hoping that my mom will be able to do the same, though chances are, much smaller. But our hopes are what keeping us alive, aren't they?

John

[PCUK Nurse Jeni]

Hello JohnDoe,

Thank you for your post, and welcome to the forums - although probably not the place that you want to be of course.

I am so sorry to hear of your Dad's diagnosis of Multiple Myeloma, and also your mum's diagnosis of pancreatic cancer. It certainly is a lot for you to take in and I am sure, lots of challenging times throughout both parents illness.

It is so good that they have you there for them, and I am sure that you are such a source of support to them.

John, is your mum taking pancreatic enzyme replacements after the Whipple's surgery - I assume that she is? Also has she been seen regularly by a specialist dietitian? Has she had her next pre-chemo assessment yet John? If not, then this is the chance for your mum to let the doctors know about the side effects which she experienced after the last cycle and also, for them to make modifications to the next cycle, in order to lessen the side effects of the treatment. If the side effects of the previous cycle are not wearing off prior to the next one, then it might be wise to have a delay of the next cycle, in order for her to get to a place where she is feeling well again.

It might be also that they do a dose reduction for the next cycle - this can only be done via a thorough assessment of the toxicity from the previous chemo cycle, so do encourage your mum to be honest about the way the last cycle has affected her.

Does she have a good mouthwash for the ulcers John?

John, if you need to get in touch, please do not hesitate to drop us an email - details in the signature below.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[JohnDoe60]

Hi Jeni,

Thanks for your reply.

My mother is getting Creon. She was able to gain 2kgs of weight within 8 weeks post Whipple. She was seen by a dietician once, and was given medium-chain triglycerides oil to up her calorie intake (now not taking anymore). But after noting my mom has gained weight and been eating well (via email), the dietician told us that everything is well and to carry on.

The assessment for her chemo is usually done one day before the actual chemo. So it will be this Tuesday. During the assessment of the fourth cycle, she had a very low platelets and was told to rest another week for a total of three-week break, but my mom insisted to have it tested on the actual day of the chemo, and her platelets passed the 75k mark, so she carried on with the fourth Folfirinox.

This time my mom's appetite was just awful and thus she was not eating. Plus, she was extremely nauseous. She has problems digesting lactose, so she's not fond of liquid food like Ensure and Prosure. And she also developed this metallic and bitter tasting to sweets, so she couldn't take anything sweet.

I noticed that many patients here was prescribed dexamethasone for days, but what my mom was getting was a medicine called Emend and an injection of dexamethasone (8mg) before chemo. Does dexamethasone on the 2nd and 3rd day help with the nausea?

To keep her in spirit and routinely feeding herself, should I ask for an anti depression medications? Thanks.

John