TraceyS

The Personalized Medicine Foundation and CancerConnect are pleased to provide patients and caregivers the opportunity to ask questions about the management of pancreatic cancer with Diane M. Simeone, M.D. Laura and Isaac Perlmutter Professor of Surgery and Pathology, Director, Pancreatic Cancer Center, Associate Director of Translational Research, NYU Langone Health, NYU Perlmutter Cancer Center. Dr. Simeone is an expert on the use of precision cancer medicines and immunotherapy for the treatment of pancreatic cancers.

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The Ask The Expert Series is made possible by support from The Personalized Medicine Foundation and CancerConnect.

Genetic Testing Questions

Q. This is more about first line hereditary testing that can be done. My husband lost his mother and his only sibling in March to pancreatic cancer. Is there anything you would suggest he do or any early testing that might help him discover the disease before it becomes too advanced if he should develop disease?

Q. I have had 3 sister's die with Pancreatic cancer what should I and my family change, what should we do?

Q. My father died at age 55 of pancreatic cancer and his mother at age 72 died of the same. I am 57. How often do you suggest screening and what type of screening? Also, what genetic tests would you suggest? Thank you for fighting against this monster!

In a familial pancreatic cancer family, with first degree relatives with pancreatic cancer I would recommend germ line testing (not sure if his relatives had done) to see if any known pancreatic cancer susceptibility genes are carried. In addition - get pancreatic screening, either starting at age 50 or 10 years younger than the youngest case of pancreatic cancer in the family. There is data that screening can help pick up pancreatic cancers at a much smaller size and earlier stage in individuals when they are in a screening program, if a pancreatic cancer were to develop. There are a number of high-quality pancreatic screening programs and high risk clinics. We’d be happy to see your husband at NYU or if you live in another part of the country get your husband to the appropriate center nearby.

Q. My sister has an atm mutation with stage 2 adenocarcinoma. She had a series of folfiornox and gemzar nab and whippel surgery. Will be getting second series of gemzar. My father also passed from pancreatic cancer. Another sister had a mri for screening only. Showed a cyst/mass on a branch of pancreatic duct asymptomatic. She will be getting genetic testing and scans. I am negative for atm mutation. What testing should siblings have done...genetic / scans. One doctor has told my brother pancreatic cancer is not genetic.

Pancreatic cancer can be genetic, so the response the doctor gave you was incorrect. Did your sister have a germ line ATM pathogenic mutation? That is important data to know, as ATM mutant tumors may also be considered for treatment with ATR inhibitors. Did you have a full germ line panel? Has your sister been tested? What I am trying to sort out is whether the pancreatic cancer is related to or separate from the ATM mutation. Your family should be plugged in with a high-quality pancreatic program, that has genetic counseling on board to help sort out these details. All of your father’s siblings and your siblings should get germ line testing. I would need more information to determine if you should be screened. The key question is whether the pancreatic cancer in your family can be clearly attributed to ATM. This is what you should be asking. If you need more input, we’d be happy to see you in our Early detection Clinic at NYU to help sort it out for you and any family members.

Risk of Pancreatic Cancer - Lynch Syndrome

Q. Ok last year found cancer in my uterus so I had family that died young so did the gene test I have Lynch MSH2 gene. This year there doing follow up and had MRI and the cyst on my pancreas has doubled in size. Now going for biopsy what I want to know what should happen depending on what shows up. If it comes up not cancer should they go ahead and remove the cyst. If it is what should I be expecting to do what questions should I ask.

Hi- I would have to know more of details about your cyst size, it’s features, to help make a recommendation about role for surgery up front. You want to have your care at a place that ideally has a multi-disciplinary pancreatic tumor clinic, with a dedicated pancreatic surgeon.  I do a lot of these kinds of surgeries myself, so am very familiar with all the nuances. If I can be helpful with a consultation, please let me know.

Treatment of stage I - III Pancreatic Cancer

Q. Had a partial Whipple oct 2019. Clean margins, no lymph node affected. 1B. Went thru chemo, gemzar then 21 rounds of radiation. Now I'm doing fluirouracil, oxaliplatin, irinotecan. When do I stop the treatments? I feel sicker now with the chemo!

After you finish 6 months of adjuvant chemotherapy, no further treatment is needed. Your team will follow your Ca19-9 and serial CT scans to monitor your health. That’s based on data from clinical trials. So I recommend 6 months. There is not clear data that radiation is of benefit in this situation, but some doctors still use it, especially if the margin is positive or “close”. The best data for post-surgery chemotherapy is with Folfirinox, which it sound like you are on. If you are struggling with the treatment, some of the medicines in Folfirinox can be adjusted to decrease the side effects. As your medical oncologist if they can adjust your dosing.

Q. Diagnosed in July 2019 with borderline resectable pancreatic cancer, a tumor on the pancreas body. FOLFIRINOX then FOLFOX due to side effects. Distal pancreatectomy and splenectomy January 2020. Margins clear, 2 of 28 lymph nodes showed cancer cells. Adjuvant Gemcitabine/Abraxane March 2020 switched to Gemcitabine/Xeloda due to toxicity. Should be done September 2020. Developed diabetes in July, treating with insulin. What is recommended after chemo? Thank you for your time.

Q. Why is Lynparza only available for metastatic pancreatic cancer patients? I carry the BRCA2 mutation, pancreatic cancer, had the platinum based chemo, surgery, now stage 2B. It seems I could benefit from Lynparza but it is not available to me. Thank you

Q. Is there a specific diet for a person that had laparoscopic Whipple surgery?

There is not a specific diet for a person who has had a Whipple procedure, be it laparoscopic or via open technique. I actually have done over a 1000 Whipple operations so have a good sense of dietary issues after surgery . Following the surgery, most patients will graze, or eat 5-6 smaller meals a day, for 2-3 weeks, until their GI tract gets acclimated. They should then be able to return toward eating like they did pre-op. About 8-10% of post-op patients may need pancreatic enzyme replacements, if they have frequent yellow, floating stools. The enzymes can aid in digestion of fats. There are no foods you can’t eat after a Whipple, but if you need pancreatic enzymes, you should avoid fatty, greasy foods. Your surgical team should have a nutritionist on board- you can ask for a consultation.

Q. My brother has stage 3 Pancreatic Cancer, he is being treated at your hospital NYU currently. He had chemo and now just had 5 days of radiation. His tumor shrunk from the chemo, but still has the tumor wrapped around a vessel. If the 5 days of radiation do not work and decrease the tumor off the vessel what are the next steps we can take to make this possible?

I think I may have spoken to you about your brother today? If so, you know the next steps. If we didn’t speak, then the next key step is his next scan, and to have it reviewed at the Multidisciplinary Pancreatic cancer Tumor Board. I run that conference and we have about 25 experts (surgeons, medical oncologists, radiation oncologists, pathologists, radiologist) who review each patient’s case and weigh in to develop the best treatment plan for the next phase of the patient’s care. I can assure you, the best recommendations will be made on his behalf.

Q. Hello! My mom was diagnosed with adenocarcinoma, stage 2b at the head of pancreas. We were told it was stage 2b due to size and abutment against SMV. She had 2 rounds of 5FU, which put her in the hospital--she was very near death. Turns out she has something called Gilbert's Syndrome that could not break down Irinotecan. After over a month in the hospital, and another month in rehab, she went home and started Gemzar when she was well enough. She had a successful Whipple in Sep 2019. Clear margins, no lymph node involvement. The surgeon was very pleased. Since then, her CA 19-9 has gone up and down, up and down...we have had a few major scares. CT and PET have been normal. Well, her CA 19-9 is up again. CT was clear and her oncologist is "puzzled." We are supposed to wait and see what her CA 19-9 is in a MONTH and if it's still up, have a PET. Do you agree with this protocol or should we get a second opinion? if CT is clear, why the rise in CA 19-9? Also, oncology has told us that if she does have recurrence, she will be stage IV with little hope for a year of survival. Is there really nothing that can be done for recurrence? My mom is only 71 years old. Thank you in advance!

This is the tough part about Ca19-9- it drives everyone crazy. It is good news that the PET scan is negative. A follow up PET makes sense. I don’t agree that if she develops a recurrence in the future, there is nothing to do about it. We have tools in our hands to help. You can always seek a second opinion if needed. No one will treat your mom unless there is evidence of recurrence, and I hope that does not happen. But in the unlikely circumstance that it does, find an oncology team to discuss all the options that can be deployed. There will be treatment options.

Blood Clots

Q. My husband has stage 4 pancreatic cancer with metastasis to the liver. He has completed 5 rounds of 5FU. He has blood clots in both legs and in lungs. We have not heard the comparison report between first CT and the one taken over a week ago the identified the second round of new acute blood clots in his lungs. He is also 12 years post kidney transplant. He is back on Lovenox injections BID. Will he ever be able to go back on Xeralto? How do you see this playing out? He is 59 and never a smoker.

I am very sorry to hear about your husband’s clotting difficulties. Unfortunately patients with pancreatic cancer are particularly prone to blood clots. You should be able to get information from your husband’s oncology team about how the new scan looks. Ca19-9 is also useful in many patients to track how a patient is responding to their treatment. I don’t see a reason your husband should not be able to go back on Xarelto. Hopefully his recent scan shows he is responding to the Folfirinox. If he is not responding, you may want to find out more information about Precision Promise. This is a national platform trial for pancreatic cancer patients (sponsored by PANCAN). He may be eligible to join the clinical trial and get good options for second line therapy. Their website should state if one of the open centers is near you. We are open here at NYU if that is helpful.

Recurrent Pancreatic Cancer

Q. Is recurrence of adenocarcinoma of the pancreas a death sentence? Is there anything that can be done if reoccurs in surgical bed or elsewhere?

Q. My husband is in the last stages of PC. He was diagnosed in Jan of 2018. He was stage 3 and it had spread to 5 lymph nodes all of which were removed through whipple surgery. He then had the routine Gemzar treatment along with radiation. There was NED for about a year. Then inoperable reoccurrence followed by 11 rounds of Folfirinox and then 7 more rounds without the oxciliplatin. He had genetic testing which offered no help. He then began Gemzar/Abraxane chemo which failed because the cancer had spread to his lymph nodes and other places in the tissue around his pancreas. He has lost 75 pounds and has an abdomen full of fluid. Is this how you normally see PC take someones life? He is skin and bones. Other than extreme fatigue and not eating at all, he does pretty good. Your thoughts?

BRCA Mutations & Treatment

Q. Why is Lynparza only available for metastatic pancreatic cancer patients? I carry the BRCA2 mutation, pancreatic cancer, had the platinum based chemo, surgery, now stage 2B. It seems I could benefit from Lynparza but it is not available to me. Thank you

Lynparza, or Olaparib, is a useful treatment for BRCA-mutant cancers of several types, including pancreatic cancer. For pancreatic cancer, Lynparza is the only currently approved by the FDA in the maintenance metastatic setting, after treatment with Folfirinox, and with stabilization of the disease. This was the POLO Study. There are a number of clinical trials that are underway to test its use in other settings in pancreatic cancer patients- neoadjuvant, adjuvant (as in your case). I am not sure how available it is in off-use situations like yours, and it is not clear that it would provide added benefit. But it is an important question to ask. Make sure your oncologist stays on the top of the data as it emerges. It is also important to know that patients with BRCA2-mutant pancreatic cancer in general have very strong responses to platinum-containing chemotherapy.

Q. There are a few PARP-1 inhibitor drugs available to treat pancreatic cancer where a mutation in the BRCA1, BRCA2 or PALP2 gene has been implicated and the patient had a response to a platinum agent. If a patient taking one of the PARP-1 inhibitor drugs exhibited side effects or was no longer responding, is there a significant difference in the composition of other PARP-1 inhibitors that the patient could be switched to one of the others to continue treatment?

There may be some subtle differences in the PARP inhibitors, but there are not thought to be major differences in responses. There may be several reasons for lack of a response to a PARP inhibitor- no response up front because there is only loss of 1 copy of the gene in the tumor, lack of a genomic instability signature. Patients may also acquire resistance due to a reversion mutation in the gene, or due to upregulation of other proteins that block an effective PARP inhibitor response. I typically recommend tumor sequencing prior to treatment, and then a repeat biopsy with analysis of resistance develops to sort out why, and map out the next strategy for treatment. Hope this is helpful.

Q. Hello, my significant other has stage 4 pancreatic cancer and we have just learned it has spread to his spine and leptomeninges. His lumbar puncture tested positive for cancer cells, but we are still waiting for tumor marker results. He has the BRCA mutation. He's been on various chemo cocktails for a year and was on lynparza briefly, because his tumor marker numbers increased. We are anxious to seek treatment for his spine and brain. Are there options rather than radiation?

Recurrent cancer is typically incurable but not always. It depends on where the recurrence is, the time from surgery, how many sites of recurrence, etc. Surgery, radiation, clinical trials can all be options. It is important that if it does occur, you seek out an expert multidisciplinary team to help guide you that has access to clinical trials. There are specific trials ongoing for BRCA positive patients.

Q. My husband has pancreatic cancer, he has had many chemo treatment has had a whipped procedure done in Jan 2020 to remove tumor. Oncology says his markers have not come down much since starting chemo. Radiation is not an option at this time. He has lost over 30 lb but no other side effects other than tied after treatment pet scan found 2 spots on spine only one was biopsy results non conclusive. What should we do now?

Spread or metastasis to the spine only would be an unusual pattern of spread for pancreatic cancer. Knowing whether it is true spread or not is important. Is he still getting treatment? Just curious, did they do germ line testing to make sure he doesn’t carry any cancer susceptibility genes? Did they sequence his tumor to define the mutations in it? Sometimes tumors with an unusual pattern of spread have unusual mutations that lead us to give different kinds of treatments rather than traditional chemotherapy. Hopefully he is being seen in an expert center where his case has been reviewed by a team of experts to map out the best next steps.

Performance Status and Surgery

Q. Hi, my husband found out in Feb he has PC., stage 2, we were sent to the University of Wisconsin, and the Dr said he was a candidate for the whipple. He had had chemo for 4 months, and the scan showed the tumor shrunk 40%. He has gotten weak and now ended up with covid. I have been told he has good oxygen levels, lungs sound clear, no fever. Now the oncologist came in, and told him he's to weak for his very last chemo, which would of been last Wed. And probably not going to have the whipple because he’s weak. He is very depressed. By the way, he had a scan again last week, and it has stayed the same. All his cell counts hemoglobin is normal, along with other tests.

He should be able to recover from Covid and have the surgery. It is ok to hold the chemo. If he does regain his strength, push for the surgery. Other option is to seek a second opinion. MCW (Dr Doug Evans) would be a good second opinion.​

Q. My mother (65 years old) was diagnosed with pancreatic cancer in December 2018 (locally advanced, borderline). She had 5 rounds of Folfirinox (3 of them With Herceptin as we found she has HER2), and Had the Whipple April 2019 (she had SMV involvement). She then had another 7 rounds of Folfirinox +Herceptin which she finished September 2019 (reaching 12 all together). In November 2019 she finished 5 weeks of radiation. She is NED in all her PET-CT scans since the surgery, last one was 6 weeks ago.She is feeling great, active, and has an appetite.

The problem is her CA-19-9 marker. Before the Whipple, during chemo, it went down from above 4000 to 700. After the surgery it did not go down to the normal range, but at the end of the chemo it was 80. Since then (about 10 month) it has been going up slowly but steadily, it is now 220. Her oncologist does not seem to be concerned, but we got a second opinion and the other doctor was very concerned - saw it as recurrence.

I would appreciate your opinion so much! Is there anything we can do? treatment? clinical trial? We thought of doing a liquid biopsy, but we are not sure if it's useful.

Your mom seems like she has had a good response, but I certainly understand your concern with her gradually rising Ca 19-9. The fact that her PET scan is negative is good to hear.

The idea to obtain a liquid biopsy to measure circulating tumor DNA is right on target- although not all oncologists will treat based on these results. I would recommend a repeat PET-CT in about 8 weeks, and to go ahead and have the oncologist send your mom's blood to see the level of circulating tumor DNA. It would be interesting to see if her tumor still expresses HER-2.

If she does ultimately have evidence of recurrence and she expressed HER-2 in her tumor, it might be worthwhile to treat her with single agent HER-2.

Q. I have been diagnosed with Stage IV pancreatic cancer in March, 2020. I am 8 rounds into initial treatment of 12 scheduled rounds of mFOLFIRINOX and due for rescans July 20th. I am considering a change to an immunotherapy or precision medicine. I have heard that fibroblast growth factor receptor inhibitors are very promising- do you agree and any recommendations on studies I should consider?

Where are you located? I would consider a site that has the Precision Promise open. Have you had your tumor sequenced? I'd be happy to discuss best options via a video visit if that is helpful.

The Precision Promise clinical trials will enroll patients with metastatic pancreatic cancer who have either received no treatment in the metastatic setting (first line), or who have only received one prior treatment for their cancer in the metastatic setting (second line). Precision Promise is an adaptive clinical trial design, data will be constantly monitored, and investigational treatment arms can be discontinued if results do not look promising. This adaptive clinical trial design provides the opportunity for new treatments to be approved more quickly than in traditional trials. Precision PromiseSM – For Patients

Q. My wife was diagnosed with Adencarcinoma December 7 2018 at 81 years of age. A 4.8 cm tumor was found in the head of pancreas, inoperable because of mestenteric artery and vein involvement. Genetic screening shows no genetic paths to treatment. Bi-weekly Folfirinox treatments started January 2019 and have continued ever since, except that oxaliplatin was discontinued after a severe allergic reaction during infusion. Quarterly CT scans have shown shrinkage of tumor to present (June scan) 1.4 cm but still inoperable due to proximity to mesenteric vessels. The Question, (at last!) It seems possible that long-term stable disease can be maintained, but what sort of chemo and what level and frequency will work? She is tolerating the Folfiriox remarkably well, but how long can that go on, especially at her age and the diabetes, which got much worse at the onset of the cancer? (On the other side of the ledger, she is active and spunky and fully advocates for herself.) Is there anything in the literature about maintenance protocols for inoperable but controlled tumors of this sort?

You ask a great question. With the added benefit of folfirinox for patients, we do see more patients who can do well for an extended period of time. Getting germline testing and tumor sequencing are important parts of the equation, sometimes providing valuable information that tailor a patients treatment. It seems you are on top of that.

In your wife’s case, some things to consider- both a little bit out of the box

  1. using circulating tumor DNA to give her chemo holidays

  2. get her plugged in at a Precision Promise site so if second line treatment is needed, she will be in great position

  3. re-biopsy in future to make organoids from her tumor to test for efficacy of other therapeutics.

Hope this helps. If you want/need more guidance in future, please reach out.

Wish your wife the best!

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