Pancreatic Cancer - No signs of spread, Whipple Candidate

Posted by mjennison @mjennison, Sep 27, 2022

Hi and so glad to be part of this group. My husband was diagnosed with Pancreatic Cancer this month. 5.8 cm in the head of the pancreas. CT Scan, MRIs, PET/CT Scan, Diagnostic Endoscopy all show no signs that the cancer has spread and he is a candidate for Whipple Surgery. However, his CA-19 was 1,900 (earlier in the month while experiencing pancreatitis after ECRP procedure to insert stent in Bile Duct and perform Biopsy). Latest CA19 has dropped to 1700. Doctors feel chemo (16 weeks) to ensure no messenger cells are there then Whipple in early 2023. has anyone experienced this? We would love to go in and do the Whipple now, but they are holding off until after chemo based on CA-19 tests being elevated. Thank you for your input.

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@lvtexas

@tpl where or who is giving you radiation treatments? My care plan started 9/30 with first Folfirinox chemo. Weird neuropathy already. Cold sensitivity is supposed to go away after 48 hours. Thank you for your info. I think my care plan is very similar.

Are you getting different side effects from radiation? Good luck on progress.

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Ivtexas......I have neuropathy in both feet. It's quite bothersome but not much I can do to calm the discomfort. I do take 300mg of gabapentin but it doesn't offer much relief. I've read where it can take up to two years before it abates.
I started radiation/chemo on September 26th....so far just fatigue but know that it'll increase further into treatments.
Are you scheduled for The Whipple and if so, when? Best of luck to you on this difficult journey!!!

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@tpl Is Mayo doing your radiation or are you having it done locally? My journey with chemo started 9/30 so I am day 3 into treatment. My Whipple/confirmation of candidacy depends on chemo response/ and radiation/ scans. Target is 4-6 months chemo, break, radiation w/ chemo, break, then Whipple/recovery. I’m thinking this times out to a June/July 2023 Whipple if it goes forward as targeted. Bless you and your health journey.

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@jqleck

Been a while since posting. Quick review, wife, 59 years old, diagnosed in march. 30mm tumor in the tail / body of the pancreas. Had Oxiplatine and 5FU for two months and was hospitalized for 9 days with sever side effects. After recover she was scanned and tested again...restarted at 70% for two rounds and 80% for the 7th round. She was referred for surgery. Post op revealed a 80mm tumor (at the largest area) and cancer likely in the local area / tissue. The post op anesthesia recovery was very hard on her to the point were she had to be restrained for 5 hours. Oh and she had a distal-pancroectomy splenectomy. The team is recommending radiation and now Gemcitabine.

Questions remain...how well is the radiation and are there clear and well defined side effects?
Same question for Gemcitabine?

Each time she agrees and moves forward with a phase of treatment the effectiveness is not as expected and the side effects are much more than we have been taught or expected.

In all honesty she is considering withdrawing from treatment and focusing on remaining quality of life.

Right now the only impact if moderate back pain which is under control with low dose of oxycodone 5mg / four hours.

Any insights or sharing is so appreciated.

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@jqleck Hello. I’m on the other end of this journey - just started 9/30 with chemo. As explained to me, the after chemo and/or radiation is to help guarantee nothing remains. Is the pain from the surgery or does your team say pain is cancer? Reading your story - it seems like you are 7/8th’s of the way there. I have read the Gem chemo is an easier chem than the ones your wife has had. I can appreciate your position, maybe keep going and evaluate after certain check points? Hugs for healing.

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@lvtexas

@jqleck Hello. I’m on the other end of this journey - just started 9/30 with chemo. As explained to me, the after chemo and/or radiation is to help guarantee nothing remains. Is the pain from the surgery or does your team say pain is cancer? Reading your story - it seems like you are 7/8th’s of the way there. I have read the Gem chemo is an easier chem than the ones your wife has had. I can appreciate your position, maybe keep going and evaluate after certain check points? Hugs for healing.

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Thank you for your time and response. The surgeon has stated that he believes the pain is actually cancer impact on the nerves. He also stated that the radiation is "very good" at reducing this type of pain, but again deferred to Radiation Oncology. She does have minor pain from the incision but that is about a 2 or 3 / out of 10 and does not last or interrupt her normal activity. It is encouraging to hear the Gem chemo is an easier chemo.

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Hi All. Over the past two weeks I have learnt I have 3cm tumour - mucinous cystic neoplasm with nodule presence - in the pancreas head with no spread to other organs, and am headed into whipple surgery in 7 days. Presence of cancer and spread to lymph nodes to be determined via biopsy. I am a mother under 50, obese but relatively healthy otherwise. Nervous about this high risk surgery, as I have a young family including teenaged boys.

Any thoughts about how to mentally prepare children for this, especially when one is barely holding it together oneself? Thank you.

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@elliek

Hi All. Over the past two weeks I have learnt I have 3cm tumour - mucinous cystic neoplasm with nodule presence - in the pancreas head with no spread to other organs, and am headed into whipple surgery in 7 days. Presence of cancer and spread to lymph nodes to be determined via biopsy. I am a mother under 50, obese but relatively healthy otherwise. Nervous about this high risk surgery, as I have a young family including teenaged boys.

Any thoughts about how to mentally prepare children for this, especially when one is barely holding it together oneself? Thank you.

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Perhaps you can focus on the fact that the Whipple offers you an opportunity which isn't available to cancer patients with mets (such is my case)? So, while your surgery has its own risks and challenges your prospects after surgery should be much improved. Good luck and I look forward to learning how you're doing. Best,

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@elliek

Hi All. Over the past two weeks I have learnt I have 3cm tumour - mucinous cystic neoplasm with nodule presence - in the pancreas head with no spread to other organs, and am headed into whipple surgery in 7 days. Presence of cancer and spread to lymph nodes to be determined via biopsy. I am a mother under 50, obese but relatively healthy otherwise. Nervous about this high risk surgery, as I have a young family including teenaged boys.

Any thoughts about how to mentally prepare children for this, especially when one is barely holding it together oneself? Thank you.

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I hope all goes well - I got my tumor in the middle and it’s so close to the arteries they keep trying to shrink
It so I can have surgery (caught very early 2cm) - I lived a great life but I am torn between constant pain chemo and otherwise and the burning desire to see my 12 y/o grow up. He is acting pretty cool but kinda clams up when any body talks to him about it. I have always been factual with him including now. I’m hoping that you have a successful surgery. I use terms like just in case stuff goes wrong and in the future I’d I get really sick... just trying to prepare him... I also find a cool uncle or auntie makes conversation a little less intense. Sorry to be scattered but in pain meds -sending good vibes your way.

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@elliek

Hi All. Over the past two weeks I have learnt I have 3cm tumour - mucinous cystic neoplasm with nodule presence - in the pancreas head with no spread to other organs, and am headed into whipple surgery in 7 days. Presence of cancer and spread to lymph nodes to be determined via biopsy. I am a mother under 50, obese but relatively healthy otherwise. Nervous about this high risk surgery, as I have a young family including teenaged boys.

Any thoughts about how to mentally prepare children for this, especially when one is barely holding it together oneself? Thank you.

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I have Stage III PC. Its inoperable. I am taking chemo and it is working. You are fortunate your PC is caught early and has not spread! Think of your surgery as an opportunity to survive - think positive thoughts. Think wellness. You can do this!

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I am in the same situation, mass is 5.0cm x 3.7. Aggressive chemo starts next week and every other week for six months. Possibly radiation after that than Whipple procedure in the spring. My CA19-9 is 1,873. Let us know how your spouse responds . Much luck 🙏🏻

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@catrinka58

I am in the same situation, mass is 5.0cm x 3.7. Aggressive chemo starts next week and every other week for six months. Possibly radiation after that than Whipple procedure in the spring. My CA19-9 is 1,873. Let us know how your spouse responds . Much luck 🙏🏻

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Hi @catrinka58. Thank you for sharing. I will continue to update on my husband's progress. He started his first round of chemo on 10/5 and will have 8 infusions (every other week) along with a 46 hour pump he comes home with after each chemo visit. This leads us up to mid-January if he tolerates the chemo and no setbacks. At that time we determine whipple and then another 2 months of chemo or radiation then whipple (need to see the CA-19 lowered) Please keep me posted as to how you are doing. Sending positive thoughts and best wishes!

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