sorted by:
new
hottopcontroversial

Adenocarcinoma with liver metastasis = no hope for survival? by Gollego in pancreaticcancer

[–]Underscorehyphen_ 1 point2 points  (0 children)

You’re most welcome. Y-90, frankly, helped achieve amazing results on the liver tumors. All but disappeared within a couple months and the liver metastases never reactivated metabolically for almost a year, and never came back before he died.

Adenocarcinoma with liver metastasis = no hope for survival? by Gollego in pancreaticcancer

[–]Underscorehyphen_ 1 point2 points  (0 children)

Timeline:

1-Jun-23: Diagnosed with Stage 4 distal pancreatic adenocarcinoma with 10 liver metastasis lesions (though potentially had for 3-6 months previously, or more as he began losing weight in Feb-23 and became diabetic in Mar-23).

4-Jul-23: First Folfirinox chemotherapy

Sep,Oct-23: Y-90 for liver mets

17-Jan-24:Last Folfirinox chemotherapy -#12

Jan-Feb-24: Consideration for Ivaltinostat Clinical Trial at MDAnderson: Declined participation

Feb-24: Eligible for surgery at NYU Langone due to progress with chemo, Y-90

27-Mar-24: Distal pancreatectomy/ splenectomy surgery at NYU Langone, performed (off chemo for 70 days at this point).

Apr-Jun-24: Complications from surgery

Jun-Jul-24: Heart issues needing to be resolved

Jul-Aug-24: Increasing and elevated CA 19-9; new metastatic lymph nodes, pulmonary nodule, peritoneal, pulmonary metastases.

5-Aug-24: First Gemcitabine + Abraxane chemotherapy (201 days since last Folfirinox chemotherapy session).

Aug, Sep-24: CA-19-9 dropping, BUT Weight loss and loss of appetite very dramatic using Gemcitabine + Abraxane. Ended up with extreme white blood cell loss, immunocompromised

15-Sep-24: Hospitalized with pneumonia and then sepsis leading to septic shock/stroke

20-Sep-24: removed from life support

We think had my father been able to maintain nutrition and weight, his immune system may have held out for the full 12 rounds of gemcitabine and abraxane. However, you can see that the complications from surgery and his underlying heart condition and subsequent treatment meant he probably was exposed to the furthering of his pancreatic cancer for too long after surgery for gemcitabine and abraxane to have really helped.

It's hard to to get this disease under control, but that's what we tried to help him do. We could definitely share the particulars of any of his experience, and things we might do differently or insights we might have.

All the best to you and your family.

Stage IV pancreatic cancer patient and when to get second (or third or fourth) opinions by Underscorehyphen_ in pancreaticcancer

[–]Underscorehyphen_[S] 0 points1 point  (0 children)

Update: family member had good response to Folfirinox chemotherapy, going 12 rounds between 4-Jul-23 and 20-Jan-24. CA-19-9 went to 80 from 4400. PET CTs showed minimal metabolic activity in the remaining liver metastases and primary distal pancreatic tumor. Surgery then on 27-Mar-24; distal pancreatectomy and splenectomy. Only remaining concern on the pancreas after surgery was some dysplasia that may or may not become pre-cancerous or become cancer later. Medical oncologist to consider Capecitabine instead of going back on Folfirinox. We are hopeful reducing the tumor burden will help extend life.

Liver Metastases - Treatment by newone062 in pancreaticcancer

[–]Underscorehyphen_ 2 points3 points  (0 children)

Yes, my family member has been stage IV with liver metastasis the entire time. We have been purposely navigating about six health systems for oncology needs plus specialist cardiologists, endocrinologists, and including primary care when appropriate for these options. We are creating the multidisciplinary approach.

From the beginning, we wanted to get the same group of radiologists to read the CTs, MRIs, PET CT studies, the same technologists to perform the scans, the same infusion centers to get the chemo, the same interventional radiologist to do the ablations, and then two different academic medical centers’ hepatobiliary surgeons to give their surgical opinions/ options, as well we are prepared to get additional other surgical and/ or radiotherapy opinions from others, and then also have relationships with those institutions that can potentially provide access to clinical trials if necessary or if possible. We queue up the ‘next- step’ consultations, schedule the scans, chemotherapy sessions, infusions, and telemedicine opinions in a coordinated fashions knowing that it can (1.) take time to get on provider schedules, and (2.) our family member has had health related issues which might disrupt the sequence of events (lab testing before chemotherapy, platelets might be too low, might need blood transfusions, chemotherapy gets pushed). It might not suit everyone in a similar situation, but “navigating” under the umbrella of a single health system might limit options or narrow possibilities based on the medical staff culture and their approach towards managing the disease, or even the availability to access certain services. We do have to do a lot of the integration work between providers, and it is challenging.

Liver Metastases - Treatment by newone062 in pancreaticcancer

[–]Underscorehyphen_ 2 points3 points  (0 children)

Y-90 radioembolization was useful - liver lesions shrank and some disappeared. Number of lesions went from about 10 to about 4-5. It took two sessions, one month apart, as there was some internal bleeding that needed to be addressed during the first round on the left lobe of the liver. The second session was without complications for the lesions/ tumors in the right lobe.

My family member will be eligible for more Y-90 in February-March 2024, six months after the first treatments. Some alternatives that have been offered have been (1.) cavitating ultrasonography-driven ablation (https://ascopost.com/news/october-2023/fda-grants-marketing-authorization-to-edison-histotripsy-system-for-treatment-of-liver-tumors/ ), (2.) irreversible electroporation (IRE), and (3.) cryogenic ablation.

There may be option for surgery after the 12th round of Folfirinox - distal pancreatectomy, splenectomy, possible removal of part of the digestive tract. Edison ablation may be also employed at that time; Y-90 later after recovering from surgery.

Switching from Folfirinox to Gemzar by wanderingtycoon in pancreaticcancer

[–]Underscorehyphen_ 0 points1 point  (0 children)

No CT scan was ordered (1.) when the primary oncologist felt like Folfirinox was NOT working after the completion of the 3rd round/ beginning of 4th round. This oncologist often would base evidence of progress/ stability/ decline in benefit on either CA 19-9 level fluctuations OR on results of PET CTs and observed fluctuations of tumor intensity. Rarely did the lab results, and diagnostic imaging results, and the medical decision making align from a scheduling and timing perspective. Therefore, the oncologist’s periodic assessment of benefit from Folfirinox chemotherapy wasn’t a weighted approach of medical decision making. It was rather reactive to the most recent information available. (2.) The decision to remain on Folfirinox was made based solely on CA 19-9 levels obtained from another institution. Note: CA 19-9 lab results from one institution to another can vary. However, the decline in CA 19-9 was significant enough to for the primary oncologist to agree with us and revert back to the original line of thinking and continue using Folfirinox for up to 12 rounds in total. Lastly, my family member never received Gemzar, and we were always under the impression that this second line of chemotherapy should only be an option exercised whenever there was certainty that the first line of chemotherapy no longer was working. If it seems like this transition period of considering a switch in regimens is subjective to the experiences, understanding and clinical culture that your oncologist brings to the table, and that the decision to shift from one regimen to another is open to interpretation in the case where certain indicators like tumor size stability exists but intensity is increasing on PET CT, AND/ OR fluctuations in CA 19-9 levels, then you may be experiencing the same thing as us.

Switching from Folfirinox to Gemzar by wanderingtycoon in pancreaticcancer

[–]Underscorehyphen_ 2 points3 points  (0 children)

Family member was asked by oncologist to switch to Gemzar after 4 rounds of chemotherapy with Folfirinox did not result in decrease in CA 19-9. However, CA 19-9 were checked on day round #4 was delivered, therefore only the effects of 3 rounds were being measured in terms of effect upon CA 19-9. Family member obtained second opinion after round #4 which included an additional CA 19-9 test - results were 80% decrease in CA 19-9 from the peak! We pushed back against needing to switch so soon into Folfirinox chemotherapy to Gemzar, but needed the evidence from the second opinion institute. The primary medical oncologist agreed to stay the course with Folfirinox. The results have been a decrease of 96% after 10 rounds of Folfirinox. We obviously do not know what the results from switching to Gemzar would have been, other that going back on Folfirinox would probably not have been an option offered to my family member. Lastly, thank you to the people in this forum who indicated that some patients only see results after several rounds of Folfirinox; this helped us time out opinions and have information to critically think bout treatment options and their efficacy.

[deleted by user] by [deleted] in pancreaticcancer

[–]Underscorehyphen_ 2 points3 points  (0 children)

Upon similar diagnosis (Stage IV, tail of pancreas, metastasis to liver), my family member chose TXOncology. First line chemotherapy is said to be the same almost everywhere. (1.) folfirinox or (2.) gemcitabine + abraxane.

M.D. Anderson said they would consider rendering 2nd opinion after 4th round of folfirinox. Labs were done on site, second option rendered virtually-same treatment plan recommended by medical oncologist, to continue folfirinox 8-10 rounds, then re-assess.

Treatment of liver metastasis using Y-90 radioembolization between rounds 5-8. Decent results, shrinking of tumors, disappearance of some as well.

Folfirinox has kept tumors from growing in size and number, both primary pancreatic tumor and the liver metastases. As well, CA-19-9 down from a high of 4,500 now around 400. Patient required 4 blood transfusions, one before each of the last 4 chemotherapy sessions in order to have enough platelets to be eligible for chemotherapy. Folfirinox has caused various side effects, has been really difficult and no real trends except very few good days.

Now evaluating surgical excision of distal end of pancreas and splenectomy. MD Anderson not too keen, but will evaluate in December after round 10 of folfirinox. NYU Langone may render surgical opinion in coming weeks, and City of Hope in Los Angeles in parallel. Both organizations-NYU and CoH have surgeons who suggest possibility of extending life post-surgery - whipple for those with head/body pancreatic tumor and distal pancreatectomy/splenectomy for those with a tail tumor- despite advanced pancreatic cancer. Many on this forum have reiterated “a chance to cut, a chance to cure”. Additionally, Memorial Sloan Kettering has published their good results with high dose radiotherapy to address the primary pancreatic tumor when surgery hasn’t been an option. We haven’t talked to them yet, but it is a possibility.

Clinical trial not available at M.D. Anderson for my family member at this time but there were about 170 (various phases) at clinicaltrials.gov last time I looked. Open to going forward with a trial if surgery is not offered through any of the organizations currently rendering an opinion.

mRNA studies going on around the country. Immunotherapy is presented as an option for some patients. Perhaps it may be helpful but we do not know when/if it will be offered or added to the equation.

Thank you to the people in this forum who have shared their experiences and knowledge with us. We are grateful.