PC recurrence 3 months after complete whipple

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PC recurrence 3 months after complete whipple

by saint_123 on Tue Feb 19, 2019 03:21 AM

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I've shared some of the details with the stalwarts on this forum regarding my brothers PC. Concisely, he was diagnosed about 8 months ago with stage 3 advanced, non-resectable PC. Too early at 38. Went through 6 rounds of folfirinox followed by a whipple last Nov where they took out the tumor, cyst, pancreas, spleen, gall bladder, duodenum, and part of the stomach successfully. The histology report showed that 90% of tumor was still alive. We knew that the tumor shrunk only for the first couple of chemo's and the cyst never shrunk whatsoever.

Since surgery, he had a very hard recovery (partly because he hated pain meds). He was rechecked at MD Anderson about 3 weeks ago and they suggested his results were remarkably normal! He had his first post-whipple chemo (Germcitabine) this Thursday. All tests were normal except for bilirubin being slightly high at 1.3. After a night of vomiting on Friday, he ended up in ER yesterday. Today, we got the results back with bilirubin at 4 and CT scan showing 4 spots on the liver.

The family is devastated! I don't know what's next for us and I can't form a question. Please post/PM me your advice...

RE: PC recurrence 3 months after complete whipple

by Swagme on Tue Feb 19, 2019 06:04 AM

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If ever your family needs to be united, the time is now. And if you can pray with him or for him, now is the time. My uncle just went through a double surgery similar to your brother's, in June of 2018. He is 87. We were all praying for him, all throughout his surgery, all of us, Buddhists, Catholics, agnostics, Baptists, and for weeks after. It took a toll on him. But after about 3 months of recovering, he has rebounded, and is his own self again! I'm contantly amazed at the human spirit to regenerate itself. None of us will live forever, but my uncle is now cancer free. And we expect him to live another 10 years. My thoughts, never give up. Life is precious. I dont know much about your brother's specifics, but some Dr.'s are now using dna/ genetics/stem cell therapies to administer healing properties. You might inquire if there are any clinical trials available. Many of the research hospitals like USC, Stanford and others, are starting to try these techniques/ And most insurances will pay for 2nd opinions, some even 3rd. Be kind to yourself, and just do your best. We are all going through something. Worth a shot. Cant hurt to ask. Best wishes and prayers flowing your way.

RE: PC recurrence 3 months after complete whipple

by saint_123 on Tue Feb 19, 2019 01:57 PM

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Thanks Swagme! I am focused on next steps as this setback sinks in. And we believe strongly in the power of prayer.

Do you think there are any specific stem cell and/or other therapies that we must look into? How does one decide which one is helpful?

RE: PC recurrence 3 months after complete whipple

by Treasure on Tue Feb 19, 2019 03:58 PM

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Hello saint123, I also had a Whipple done for stage 3 pancreatic cancer, went on gemcidibine for 6 months, only to have this recurrence in two areas of my liver  afew months later after being told everything was clear. I was given 5-6 months to live as my liver as in such bad shape. I was put on palliative care and given folfirnox treatment for pain. I know the God in the Bible is still a miracle working God to this day ! I remembered that Jesus said, you can ask for anything using my name and if you truly believe, it's yours.......you can have it! So I asked God to wash .away this cancer once and for all and also any floaters that may be in areas that scans could not pick up! And I have surprised the whole medical team because stage 4 pancreatic cancer , recovery is just temporary, but I can tell you with God it's permanent! ! I know I'm only here today, by the grace of God!  It is now going on 8 wonderful years and our God can certainly do what man cannot! Lots of people can testify that God has brought them through to victory. If you don't ask.....you won't get!  Blessings for you and your brother as you continue on this journey. 

RE: PC recurrence 3 months after complete whipple

by saint_123 on Tue Feb 19, 2019 11:23 PM

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Thanks Treasure - We are firm believers in the prayer. Sounds like you followed standard protocol for post-whipple chemo. Were you receptive to the gemiicidibine prior to the surgery?

In his case, we knew that folfirinox most its effectiveness by the time he got to the surgery.

Any other tips - eating habits, lifestyle changes that may have helped?

RE: PC recurrence 3 months after complete whipple

by Treasure on Wed Feb 20, 2019 01:21 AM

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They suggested gemcidabine after Whipple as a precautionary measure, due to my cancer was not only in the pancreas but outside the pancreas in my lymph nodes and small intestine. Gemcidabine is a milder form of chemo . I did gastronal folfirnox which is a very agressive treatment and after two treatments my pain was gone! My ca19-9 numbers dropped down to half and I knew that God was at work! Each treatment brought me closer to God! Today I juice every morning, and I can eat what ever I want but much smaller amounts because I also had part of my stomach  removed. I'm back working with patients but cancer patients only. Chemo is harsh but with all the wonderful antinausea drugs they have it becomes easier to do. For me it was important to get God involved in this journey because I could not have done it without him! ! My patients that are now in remission will tell you it's God that brought them this far.. hang in there because there is hope . And it's God that holds the future! And it's God that  brings victory ! 

Blessings as you both continue this journey!

RE: PC recurrence 3 months after complete whipple

by denver88 on Thu Feb 21, 2019 10:29 PM

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In brief, i had a whipple two years ago, my cancer had spread to my liver, that was two years ago.  i had no post surgery chemo, my type of cancer was neuroendocrine as opposed to the more serious adenocarcinoma.  My gall bladder was removed, the head of the pancreas removed, section of the intestine also removed.  That was two years ago.  First as for pain, I was lucky, had very, very little but pain should go away after a period of weeks i would think and he should use pain meds, if you take pain meds one doesn't become an addict, that is bull crap.  Next, sounds like he is mostly stable and without details and all of us on here not being oncologists, that is good and as far as the liver tumors depending on what type they are there is a very good chance of containment for many many years with drugs such as lanreotide that are used for neuroendocrine tumors and i can't speak about other types.  As far as the billirubin counts I think due to the Whipple these counts can vary outside the normal range.  I do think you are talking about adenocarcinoma and if so think about mentioning this when discussing pancreatic cancer to get more definitive responses.  I do recommend my cancer treatment center in denver especially for neuroendocrine tumors as they have world recognize docs working there.  Hang in there

RE: PC recurrence 3 months after complete whipple

by saint_123 on Thu Feb 21, 2019 11:56 PM

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Quick update - he consulted his  oncologist today. Based on the fact that all his symptoms started after the first chemo was administered, the fact that he had virtually no symptoms till that chemo session, that he is doing much better and eating for the last 2-3 days, and his bilrubin is back to 1.8 (from 4 on Sunday) the oncologist is not convinced that his cancer has returned.

He's been told to discontinue chemo, and return in 2-3 weeks (not sure why the delay) for an MRI.

I'll keep all of you posted. Hoping the oncologist is right.

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