Recent diagnosis of pancreatic cancerous tumor - awaiting PET

Posted by minimia @minimia, Jan 9 2:53pm

My 70 yr old father in law became ill around thanksgiving with chronic diarrhea; thought it was the flu, started to loose lots of weight, tired, became jaundice; finally got appt at GP and they did MRI that showed “tumor” in pancreas; GP referred to Mayo took a few weeks to get appt over Holidays; loosing more weight; sleeping all the time; more jaundice; gets consult, take him off blood thinners; then put stent in to open duct to liver to liver; find cancerous tumor; xray chest – looks clear; schedule for PET next week to see if cancer has spread anywhere; if all clear then he has to gain weight, have chemo to shrink tumor, and then surgery to remove. Any insights on how family can support him through this process and what to ask Dr’s and look out for. Thanks in advance

In the last few years, doctors have made a lot of progress in treating pancreatic cancer. I recently read about a new medicine that has been approved for treating pancreatic cancer. I won't say that your journey will be easy, but more people, even those with those with more advanced stages, are surviving this cancer. After being evaluated by a doctor, an individualized plan will be developed by the team. My treatment included the Whipple and 6 months of chemo. That was 5 years ago. I know fatigue is a problem, but if you can get him up and walking and building his strength, it will help with recovery after surgery.

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When you get a biopsy ask the doctors to get enough tissue so you can have genomic testing or molecular profiling done. It's called so many different things it seems. I'm so disappointed I didn't know about this sooner. No one told me. This is very important to find out.

Talk to organizations like PanCan and Pancreatic Cancer Foundation. They are a wealth of information. Be prepared to look at different clinical trials right away. Don't wait until they have finished their standard treatment.

There are many meds out there that are being re-purposed for pancreas cancer. Some are synthetic Vitamin D and HCQ (don't remember full name) but it's used to typically treat malaria. These drugs are being researched to determine if they might help improve the efficacy of chemo. The D and HCQ help break down cell walls to make chemo more effective. That's just me trying to explain it in layman terms.

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@marvinjsturing

In the last few years, doctors have made a lot of progress in treating pancreatic cancer. I recently read about a new medicine that has been approved for treating pancreatic cancer. I won't say that your journey will be easy, but more people, even those with those with more advanced stages, are surviving this cancer. After being evaluated by a doctor, an individualized plan will be developed by the team. My treatment included the Whipple and 6 months of chemo. That was 5 years ago. I know fatigue is a problem, but if you can get him up and walking and building his strength, it will help with recovery after surgery.

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Hello @marvinjsturing
I so appreciate your providing such good, as well as encouraging information, about current treatments for pancreatic cancer. You really have a good handle on what is available now. I'm sure that all of the Connect members who have this disease are also appreciative of your knowledge as well as the fact that you share it here on Connect!

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Hi @minimia, welcome to Connect. In this video, Dr. Mark Truty at Mayo Clinic talks about the advancements in pancreatic cancer treatment by doing chemo before surgery, which has also be suggested for your father in law.

Other members are talking about surgery and neoadjuvant chemo in this discussion:
Pancreatic cancer—Whipple procedure https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/

It sounds like your father is getting good care and that he has great family support. I agree with @marciakaye's advice to inquire about clinical trials and genetic testing and if they are appropriate for your father. Just having you there to be a second pair of eyes and ears, and to ask questions is a big help. I always like the final question that I ask to be "is there anything I need to know and have not thought to ask?" How is your father in law doing through all this? And your partner?

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@marciakaye

When you get a biopsy ask the doctors to get enough tissue so you can have genomic testing or molecular profiling done. It's called so many different things it seems. I'm so disappointed I didn't know about this sooner. No one told me. This is very important to find out.

Talk to organizations like PanCan and Pancreatic Cancer Foundation. They are a wealth of information. Be prepared to look at different clinical trials right away. Don't wait until they have finished their standard treatment.

There are many meds out there that are being re-purposed for pancreas cancer. Some are synthetic Vitamin D and HCQ (don't remember full name) but it's used to typically treat malaria. These drugs are being researched to determine if they might help improve the efficacy of chemo. The D and HCQ help break down cell walls to make chemo more effective. That's just me trying to explain it in layman terms.

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@marciakaye, based on your post, I looked into genetic testing and pancreatic cancer and found this article from Pancreatic Cancer Action Network
– New Study Encourages Genetic Testing for All Pancreatic Cancer Patients, Regardless of Family History https://www.pancan.org/news/new-study-encourages-genetic-testing-for-all-pancreatic-cancer-patients-regardless-of-family-history/

How might genetic testing have changed the treatment options for you? What do you wish you had known?

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@colleenyoung

@marciakaye, based on your post, I looked into genetic testing and pancreatic cancer and found this article from Pancreatic Cancer Action Network
– New Study Encourages Genetic Testing for All Pancreatic Cancer Patients, Regardless of Family History https://www.pancan.org/news/new-study-encourages-genetic-testing-for-all-pancreatic-cancer-patients-regardless-of-family-history/

How might genetic testing have changed the treatment options for you? What do you wish you had known?

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Maybe the genetic testing would not have changed anything. Maybe the treatments would have been the same. But if he had the testing and we found out additional information about his tumor maybe he could have received different treatments. Or rather more specific treatments. Maybe if we need he had certain mutations other chemo might have been more effective.

My husband did 10 cycles of Folfirinox. The 19-9 trended down but then starting increasing. So the doctors told us the tumor had adapted to Folfirinox and it was no longer working. So he started on Gemzar/Abraxene. Only did 1 cycle because of C-diff. So next up radiation with hopes it would still shrink the tumor and leave clear margins because the tumor was partially around an artery. It didn't. So 10 months ago we started with journey planning on surgery being the endgame. We didn't get that outcome.

We just got a 2nd opinion from Dr. Truty. He told us surgery would never be an option because of the location of the tumor. He recommended chemo again with hopes the 19-9 would respond. Now I'm looking for alternatives. I'm looking at drugs that have been re-purposed to help fight pancreas cancer. Some drugs are showing promise in breaking down the walls around the tumor and therefore making chemo more effective. Some drugs are showing promise by interfering with the way the tumor grows or inhibiting the growth.

I just drove home yesterday from Mayo Clinic in Rochester, MN. It was a long 10 hour drive. We are waiting for biopsy results. Our heads are filled with "what-next" thoughts. Yes, my husband is scheduled for chemo this week. That is next. But I feel like more needs to be considered. I'm overwhelmed with the options and not sure where to start. I'm looking for a medical oncologist that will help us look at options other than the standard treatment. Or options on how we can enhance the standard treatment. I'm looking for a progressive medical oncologist that will help us look at clinical trials and address my husbands needs moving forward. I'm also looking at how to get a liquid biopsy if the needle biopsy at Mayo comes back benign. I'm praying for much needed direction and guidance. I feel like the trip to Mayo was a Hail Mary that didn't pan out. We learned some things but my husbands prognosis doesn't look good to us right now.

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@marciakaye

Maybe the genetic testing would not have changed anything. Maybe the treatments would have been the same. But if he had the testing and we found out additional information about his tumor maybe he could have received different treatments. Or rather more specific treatments. Maybe if we need he had certain mutations other chemo might have been more effective.

My husband did 10 cycles of Folfirinox. The 19-9 trended down but then starting increasing. So the doctors told us the tumor had adapted to Folfirinox and it was no longer working. So he started on Gemzar/Abraxene. Only did 1 cycle because of C-diff. So next up radiation with hopes it would still shrink the tumor and leave clear margins because the tumor was partially around an artery. It didn't. So 10 months ago we started with journey planning on surgery being the endgame. We didn't get that outcome.

We just got a 2nd opinion from Dr. Truty. He told us surgery would never be an option because of the location of the tumor. He recommended chemo again with hopes the 19-9 would respond. Now I'm looking for alternatives. I'm looking at drugs that have been re-purposed to help fight pancreas cancer. Some drugs are showing promise in breaking down the walls around the tumor and therefore making chemo more effective. Some drugs are showing promise by interfering with the way the tumor grows or inhibiting the growth.

I just drove home yesterday from Mayo Clinic in Rochester, MN. It was a long 10 hour drive. We are waiting for biopsy results. Our heads are filled with "what-next" thoughts. Yes, my husband is scheduled for chemo this week. That is next. But I feel like more needs to be considered. I'm overwhelmed with the options and not sure where to start. I'm looking for a medical oncologist that will help us look at options other than the standard treatment. Or options on how we can enhance the standard treatment. I'm looking for a progressive medical oncologist that will help us look at clinical trials and address my husbands needs moving forward. I'm also looking at how to get a liquid biopsy if the needle biopsy at Mayo comes back benign. I'm praying for much needed direction and guidance. I feel like the trip to Mayo was a Hail Mary that didn't pan out. We learned some things but my husbands prognosis doesn't look good to us right now.

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@marciakaye, such a tough situation. You might wish to connect with other members in a similar situation in this discussion:
– Inoperable Pancreatic Cancer: What treatment options are there? https://connect.mayoclinic.org/discussion/pancreatic-cancer-3/

Did you talk with the oncology team about possible clinical trials for your husband?

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@colleenyoung

Hi @minimia, welcome to Connect. In this video, Dr. Mark Truty at Mayo Clinic talks about the advancements in pancreatic cancer treatment by doing chemo before surgery, which has also be suggested for your father in law.

Other members are talking about surgery and neoadjuvant chemo in this discussion:
Pancreatic cancer—Whipple procedure https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/

It sounds like your father is getting good care and that he has great family support. I agree with @marciakaye's advice to inquire about clinical trials and genetic testing and if they are appropriate for your father. Just having you there to be a second pair of eyes and ears, and to ask questions is a big help. I always like the final question that I ask to be "is there anything I need to know and have not thought to ask?" How is your father in law doing through all this? And your partner?

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Thanks for the info; He goes in for PET Tuesday then meets with Oncologist on Thursday… so we are hoping for the best news (not spread) at this point. He is doing better since he had the stent put in and is able to eat more to gain more energy..

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Update – Planned a trip back to visit; last Thursday eve, (before the blizzard) On that morning, He collapsed and went to ER, diagnosed with blood infection/dehydration/jaundice/blood sugar out of whack, maybe due to blockage, back-up from stent, re-did ECP on late Friday, was lucky to get in, they think they cleared whatever was blocked; put on IV antibiotics, stayed at Mayo for 5 days, released with oral antibiotics, insulin, etc.. Mayo pharmacy was the worst – did not have correct scripts, had to page Dr; then Dr ordered insulin that was not covered – etc.. after waiting 2 hrs still had it messed up; Meanwhile patient released and waiting this whole time… Good News; PET scan was clear; so when they get all his stats under control he will do chemo 2 times a month for two months and then get scheduled for surgery to remove the tumor .

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@minimia

Update – Planned a trip back to visit; last Thursday eve, (before the blizzard) On that morning, He collapsed and went to ER, diagnosed with blood infection/dehydration/jaundice/blood sugar out of whack, maybe due to blockage, back-up from stent, re-did ECP on late Friday, was lucky to get in, they think they cleared whatever was blocked; put on IV antibiotics, stayed at Mayo for 5 days, released with oral antibiotics, insulin, etc.. Mayo pharmacy was the worst – did not have correct scripts, had to page Dr; then Dr ordered insulin that was not covered – etc.. after waiting 2 hrs still had it messed up; Meanwhile patient released and waiting this whole time… Good News; PET scan was clear; so when they get all his stats under control he will do chemo 2 times a month for two months and then get scheduled for surgery to remove the tumor .

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I appreciate your keeping in touch, @minimia. I'm glad to hear that he is feeling better now. It is good to know that the PT scan was clear, I'm sure you were both relieved about that. It sounds as if his surgery will be in the spring.

Will you post again with an update when that is scheduled?

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@minimia

Update – Planned a trip back to visit; last Thursday eve, (before the blizzard) On that morning, He collapsed and went to ER, diagnosed with blood infection/dehydration/jaundice/blood sugar out of whack, maybe due to blockage, back-up from stent, re-did ECP on late Friday, was lucky to get in, they think they cleared whatever was blocked; put on IV antibiotics, stayed at Mayo for 5 days, released with oral antibiotics, insulin, etc.. Mayo pharmacy was the worst – did not have correct scripts, had to page Dr; then Dr ordered insulin that was not covered – etc.. after waiting 2 hrs still had it messed up; Meanwhile patient released and waiting this whole time… Good News; PET scan was clear; so when they get all his stats under control he will do chemo 2 times a month for two months and then get scheduled for surgery to remove the tumor .

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@minimia, what an ordeal. I bet you and your father-in-law are exhausted. I encourage you to report your experience with the pharmacy to the Office of Patient Experience. See contact numbers here: https://www.mayoclinic.org/about-mayo-clinic/patient-experience They will want to know about it and help improve the system.

Did you learn more about some of the causes of his collapse and poor stats? It would be good to understand what was going on so that he can take preventative measures to avoid it happening again (if possible). He'll want to be as healthy as possible for chemo. Did they give you a list of anticipated side effects and how to help manage them?

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@colleenyoung

@minimia, what an ordeal. I bet you and your father-in-law are exhausted. I encourage you to report your experience with the pharmacy to the Office of Patient Experience. See contact numbers here: https://www.mayoclinic.org/about-mayo-clinic/patient-experience They will want to know about it and help improve the system.

Did you learn more about some of the causes of his collapse and poor stats? It would be good to understand what was going on so that he can take preventative measures to avoid it happening again (if possible). He'll want to be as healthy as possible for chemo. Did they give you a list of anticipated side effects and how to help manage them?

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Yes, I plan to provide feedback to the pharmacy; I also have the "hard copy" comment card, The PA actually called to apologize so that was good. Principal diagnosis was Cholangitis Acute ; many other Active problems – obstructive jaundice, malignant neoplasm of pancreas head, diabetes, etc.. Collapsed from Cholangitis and dehydration – we think; Stent was not functioning properly; He is feeling much better today at home; He will need to follow-up with primary care Dr on the 27th and then meet with Oncologist; he is nervous about the chemo and potential side effects so we hope to learn more from that visit.

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Hi @minimia, Have him drink Boost Very High Calorie drinks during chemo & before his surgery. It should help him at least maintain his weight.

Screenshot_20200121-164349_Chrome

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@minimia, With having any stent placements, just know sometimes they can migrate on their own causing biliary ductal system blockages, which can cause a pancreatitis attack. Pancreatitis attacks can be very painfil & if not treated promptly, it can be fatal. Watch him closely for signs of jaundice, mid upper abdominal pain that radiates into the mid back & sometimes into the shoulder(s), nausea/vomiting, fever, diarrhea & somtimes loss of bowel control. If he has any of these symptoms, seek immediate medical attention at a University Medical Center (teaching hospital), Mayo Clinic Hospitals or Johns Hopkins Medical Center. All other community hospitals do not have the specialists nor the medical equipment for treating these types of patients.

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@minimia, The questions you should ask any potential surgeon are:
1) How many Whipple Procedure surgeries, Distal Pancreatectomies & Total Pancreatectomies do you perform annually? (If it's less than 10, run! Obtain another surgical consult asap!)
2) Do you operate in a large volume hospital who has the capabilities of caring for Whipple patients? (If not, run! And, obtain another surgical consult.)
3) Do you perform laproscopic, robotic or open abdominal Whipple Procedure surgeries? (Just know, if at all possible opt for laproscopic or robotic surgery, as there will be less recovery time.
4) Do you use a Chevron (horizontal) or vertical incision for open abdominal surgeries & do you use surgical glue for the exterior incision? (I had a Chevron & a 13 inch abdominal scar. My surgeon used surgical glue on my incision. I have several friends who underwent the Whipple Procedure surgery & they had a vertical incisions w/metal staples & they all had to have an additional surgery to repair hernias.)
4) Request during pre-op after IV is placed, that an epidural be placed to help control pain;
5) Request a pain pump to utilized to help with pain control.

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