New Pancreatic Cancer Diagnosis

Posted by smithpamelag @smithpamelag, 5 days ago

My 70-year-old husband received the news last week that some tissue samples from an EUS came back as cancerous. He has a complex medical history having had bile duct cancer in 2020, a liver transplant Feb 2021, Chronic Kidney Disease and alot of other things prior to that. Since he has transplant, he has frequent blood work including the CA 19-9 done quarterly as well as some scans. His CA 19-9 started to climb last year, nothing was showing up on imaging. In 2023 the CA 19-9 spiked to over 6,000 but then came back down within normal range. Well this time its different. Since July of last year its gone from 81 to now its over 10,000. CT Scan done today shows no masses on lungs. The MRI in March didn't show much either, but the most recent EUC did see some changes in the dilation of the pancreatic duct. We live in Cleveland, OH and get medical care at the Cleveland Clinic. Today we met with the surgeon and next Wednesday will be meeting with the oncology dr. But it sounds like the plan is chemo for 2-3 months. Repeat labs and scans to see if things have responded and if he's a candidate for surgery. We've got a long road ahead of us! That's for sure.

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A PHASE II STUDY OF PACLITAXEL PROTEIN BOUND + GEMCITABINE + CISPLATIN+
PARICALCITOL AS PREOPERATIVE TREATMENT IN PATIENTS WITH UNTREATED RESECTABLE, BORDERLINE RESECTABLE AND LOCALLY ADVANCED ADENOCARCINOMA OF THE PANCREAS
NABPLAGEM-NEO 2017-001
HonorHealth IRB# 1060386
HonorHealth Research Institute

I was diagnosed at Mayo on November 26 2018 and went on this study combination of FDA approved drugs. The combination was not approved at the time. I did 18 weeks of chemo 2 weeks on and 1 week off. After 6 weeks I did 33 days of radiation. Today I have no activity that can be detected even though I still have a mass of 2.3 cm. My CA19-9 at last tested in May was 13.4 I take Xeloda 5 days a week.

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@mcharlesfrancis

A PHASE II STUDY OF PACLITAXEL PROTEIN BOUND + GEMCITABINE + CISPLATIN+
PARICALCITOL AS PREOPERATIVE TREATMENT IN PATIENTS WITH UNTREATED RESECTABLE, BORDERLINE RESECTABLE AND LOCALLY ADVANCED ADENOCARCINOMA OF THE PANCREAS
NABPLAGEM-NEO 2017-001
HonorHealth IRB# 1060386
HonorHealth Research Institute

I was diagnosed at Mayo on November 26 2018 and went on this study combination of FDA approved drugs. The combination was not approved at the time. I did 18 weeks of chemo 2 weeks on and 1 week off. After 6 weeks I did 33 days of radiation. Today I have no activity that can be detected even though I still have a mass of 2.3 cm. My CA19-9 at last tested in May was 13.4 I take Xeloda 5 days a week.

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Thank you so much @mcharlesfrancis for sharing that regimen with us! A couple of comments or questions since it's our mutations that drive treatment types. 1. Did you have any metastasis in liver or anywhere else when you began treatment? 2. You didn't have surgery after diagnosis? 3. You don't cite any mutations (previous posts), other than the fact you do not have BRCA or TP53 genes? This is critical, as paclitaxel is not or not always effective for the TP53 gene which is quite common in cancer. I do have the TP53 gene, though my blood biopsy in January said the significance of its base substitution was PROBABLY benign. Since I now have cancer blooming like spring flowers in me, I doubt that it was benign. This is a good regimen for those without TP53; at least I can say that. Thank you so much for sharing.

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@mnewland99

Thank you so much @mcharlesfrancis for sharing that regimen with us! A couple of comments or questions since it's our mutations that drive treatment types. 1. Did you have any metastasis in liver or anywhere else when you began treatment? 2. You didn't have surgery after diagnosis? 3. You don't cite any mutations (previous posts), other than the fact you do not have BRCA or TP53 genes? This is critical, as paclitaxel is not or not always effective for the TP53 gene which is quite common in cancer. I do have the TP53 gene, though my blood biopsy in January said the significance of its base substitution was PROBABLY benign. Since I now have cancer blooming like spring flowers in me, I doubt that it was benign. This is a good regimen for those without TP53; at least I can say that. Thank you so much for sharing.

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At the time I had no metastasis and I’ve never had surgery because the mass is 270° by my superior Masonary artery

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@mcharlesfrancis

At the time I had no metastasis and I’ve never had surgery because the mass is 270° by my superior Masonary artery

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@mcharlesfrancis
Thank you for posting this!
Can you share the mutations(if any) they found ?

@mnewland99
Thank you for mentioning TP53 and paclitaxel. I know there has to be a relationship between the mutations and drugs that take longer for resistance. I’m on the 3rd (standard of care) and don’t want to misstep in my next treatment plan. It’s a journey, isn’t it? Always trying to stay one step ahead, since our doctors seem to only be tasked to keep us alive one more day. Praises for those specialists that sincerely see this as becoming a chronic condition.

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@gamaryanne

@mcharlesfrancis
Thank you for posting this!
Can you share the mutations(if any) they found ?

@mnewland99
Thank you for mentioning TP53 and paclitaxel. I know there has to be a relationship between the mutations and drugs that take longer for resistance. I’m on the 3rd (standard of care) and don’t want to misstep in my next treatment plan. It’s a journey, isn’t it? Always trying to stay one step ahead, since our doctors seem to only be tasked to keep us alive one more day. Praises for those specialists that sincerely see this as becoming a chronic condition.

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@gamaryanne it is certainly a rocky journey! Nerve racking as I feel tasked with choosing the treatments I must take to try and extend my life. Thank goodness there are so many courses to choose from. I hope you are doing well. My task is difficult as due to my underlying arrhythmia that arises following stress to my body and breathing difficulties I've had since 5 years old that made my Naliri chemo very difficult for me. I'm waiting now to get CT of lungs to see whether I had changes to the existing scar tissue in my lungs versus an allergic reaction to the Naliri. I had to find, on my own initiative, a potential alternative. I have appt with IR to ensure whether histotripsy is still an option given the number of lesions I now have in the liver and I'll have appts with oncologists at St. Jude and UCLA to see if I'm a candidate for a clinical trial to receive a combo of Zolbetuximab and 5FU. It is for those that have the CLD18.2 protein which I have. It's a Phase 1. I like this one because Zolbetuximab has already proven a worthy opponent for peritoneal and stomach cancer and 5FU kept me with low cancer antigens (CA19-9) while I was on it. My observation is that abraxane works well for liver metastasis, but it's rather potent and caused neuropathy when I was on it, so maybe histotripsy will at least get rid of my present liver lesions. It's an incredible journey and you've been so proactive medically and active in your personal life - a path I try to emulate. God bless everyone on this forum and all the researchers and drs we place our care in.

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@mnewland99

@gamaryanne it is certainly a rocky journey! Nerve racking as I feel tasked with choosing the treatments I must take to try and extend my life. Thank goodness there are so many courses to choose from. I hope you are doing well. My task is difficult as due to my underlying arrhythmia that arises following stress to my body and breathing difficulties I've had since 5 years old that made my Naliri chemo very difficult for me. I'm waiting now to get CT of lungs to see whether I had changes to the existing scar tissue in my lungs versus an allergic reaction to the Naliri. I had to find, on my own initiative, a potential alternative. I have appt with IR to ensure whether histotripsy is still an option given the number of lesions I now have in the liver and I'll have appts with oncologists at St. Jude and UCLA to see if I'm a candidate for a clinical trial to receive a combo of Zolbetuximab and 5FU. It is for those that have the CLD18.2 protein which I have. It's a Phase 1. I like this one because Zolbetuximab has already proven a worthy opponent for peritoneal and stomach cancer and 5FU kept me with low cancer antigens (CA19-9) while I was on it. My observation is that abraxane works well for liver metastasis, but it's rather potent and caused neuropathy when I was on it, so maybe histotripsy will at least get rid of my present liver lesions. It's an incredible journey and you've been so proactive medically and active in your personal life - a path I try to emulate. God bless everyone on this forum and all the researchers and drs we place our care in.

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I also wanted to add, and this is just my observation as a patient, that abraxane seemed to prevent growth of the peritoneum nodules that wete found following my ERCP that was done in December 2023.

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