Gallbladder Cancer 2023 (All Stages)
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Hello! First of all, I’m so grateful for your detailed posts and explanations of your treatment protocol. They’ve been easier to understand than anything we’ve received from doctors so far. My dad, who is 67, has suspected late stage gallbladder cancer based on a very concerning PET scan, and he’s getting a confirmatory biopsy today (they are pulling tissue from a spot on his liver where they believe it’s spread, not taking out the gallbladder at this point). Once we get the confirmation of malignancy, we’ll get the full referral to a cancer center.
You mentioned you are part of a research study/trial? Would you be able to share which one? My dad lives in Arizona (I am in TN), and we’ve had terrible luck with doctors so far — missed signs early on, and now being told that his case is inoperable if confirmed. We are hoping to go to a more established cancer center next (there are two very reputable ones in AZ), and from there hopefully will get a full multidisciplinary team to give us an opinion on next steps, but your story has given me so much hope that maybe we have a chance to beat this or at least prolong his life, despite what the statistics say. He is relatively young, hikes and jogs multiple times a week and has barely any symptoms (just indigestion after eating), so this has all been so shocking (as I know it is for most!)
Thank you for sharing whatever you feel comfortable with!!
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Please pass along to your father my best wishes for a full cure! There is another person engaged in this discussion group who lives in Arizona. I hope she can add something helpful for you and your father. (I will answer your question about the clinical trial in a separate post.)
"Late stage" seems to mean a different cancer status to different people. Local metastasis, such as the gallbladder cancer spreading to the liver, may be Stage III-B, while remote metastasis is Stage IV. Are these both late stage or only Stage IV? I think the reason that oncologists are hesitant to put a strict definition on the implications of a stage is that gallbladder cancer occurs on a continuum over time. My oncologist has been very clear that we're "going for a cure," even with Stage III-B gallbladder cancer. (The cholecystectomy pathology report found cancer all the way through the gallbladder, in the "liver bed" (the location where the gallbladder touches the liver), and in the one lymph node that was very carefully bagged before removal so that any cancer cells would not escape). My first accomplishment will be to achieve remission after my current chemotherapy treatment has completed. What this means is that no cancer is found, not that no cancer remains.
I believe that what you're saying is that a general surgeon is taking a liver biopsy to see/confirm that the cancer has spread to the liver. My understanding is that this would inform the kind of cholecystectomy (gallbladder removal) with resectioning surgery that's done. In my case, a PET scan did not detect gallbladder cancer, though it was present. But I'm not someone with the qualifications to speak confidently about the purpose of the biopsy.
I appreciate how difficult it is to internalize a diagnosis of late-stage gallbladder cancer for someone who's been "doing everything right" (staying healthy with exercise and, presumably, a healthy diet that's low in the fats that bile deals with). Researchers don't even know the causes of gallbladder cancer, other than a cause related to the chronic inflammation that sometimes comes with gallstones.
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About that clinical trial: In the United States, the National Institutes for Health is involved with a clinical study that compares two chemotherapy protocols. They are different in only one way. The "control" group receives the current standard of care, which is to have surgery before chemotherapy. The hypothesis group receives some chemotherapy before surgery and the rest after surgery. Patients are assigned to one group or another via a blind algorithm that keeps the proportion of control and hypothesis at 33% to 67%, respectively. Because no one knows which is better (though there's the informed hunch that having chemotherapy first and last might be), there's--theoretically--no advantage to the patient for having one type of treatment or the other.
Because gallbladder cancer is so rare, this clinical study has to involve patients being treated at a variety of universities that conduct medical research and clinical treatment. One of the universities is Stanford, which is where I'm being treated.
I was told that, in many clinical oncology practices, only one drug is used for gallbladder cancer: capecitabine. In this clinical study, two drugs are used: gemcitabine and cisplatin. My infusion nurses consistently tell me that my dose of cisplatin is low compared with other uses of cisplatin for cancer treatment, which may have some bearing on why I feel well while in treatment. Who knows?
Once I've had all 8 cycles of treatment (with an infusion on Day 1 and Day 8 of each cycle), I will have CT scans with contrast every 3 months for the first year and every 6 months for the second year. This is what's specified in the protocol, but my oncologist could choose to continue with every 3 months and will (I'm sure) continue testing after the second year. The difference between remission and a cure is whether there continues to be no gallbladder cancer for the rest of the patient's life.
The title of the study is EA2197, 'Optimal Perioperative Therapy for Incidental Gallbladder Cancer (OPT-IN) - a Randomized Phase II/III Trial'. (See https://blog-ecog-acrin.org/now-enrolling-ea2197-opt-in-for-gallbladder-cancer/ for a brief description.) You may find that there is a university with a school of medicine that is participating in this or other gallbladder cancer treatment studies. It would be up to the oncologist or oncology surgeon to say whether a particular study might be advantageous. I am only participating in this study because others might benefit in the future if the optimum treatment can clearly be confirmed by the data that come from the patients who agree to participate. I have no idea whether my chemo-surgery-chemo protocol will yield a better, worse, or equivalent prognosis.
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I'm sorry you're not feeling well. I hope that your immune system is staying strong and that your side effects are manageable. I assume you know the benefits of crystalized ginger chews for controlling nausea. The one thing to note is that they have sucrose in them, so not for anyone who is diabetic.
How frequently is your oncologist ordering tests to determine whether there is still cancer present? Do you have CT scans for that or some other imaging test?
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It's wonderful that you can keep such a positive attitude. I've had many people tell me that they are certain that a positive attitude makes a positive difference. Take care!
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Finally! Three months of chemotherapy, a break before resectioning surgery, a wicked resectioning surgery, more of a break after resectioning surgery, and another 3 months of chemotherapy. The protocol I'm part of includes having a CT scan with contrast every 3 months for the first year after treatment and every 6 months for the year after that. I had a CT scan earlier this week and the radiology report says there are no signs of residual or recurrent cancer in my chest, abdomen, or pelvis. ☺️ The cancer is officially in remission! This coming week, I will have a CBC with differential, a complete metabolic panel, and 2 cancer antigen tests. Then I'll meet with my oncologist to review this last step before I'm basically turned loose. I will see him every 3 months after having another CT scan and the usual blood tests.
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This is such amazing news! I am SO happy for you. I am a little envious, as my oncologist basically tells me surgery is a very unlikely part of the plan. Basically he said my type of cancer is systemic and cutting it out of one place doesn't really do much....because it just pops up somewhere else while you have the break to have surgery and recover....so on with the show. Just completed my 5th cycle of chemo...one more and then another CT to look a progress.
Meanwhile, I have decided to live the most aggressive LIFE I can during this treatment. I have one week of chemo, once week of recovery and then one week where I feel good...so after session 4 I went to Oregon and visited my daughter, son in law and grandson! On the 23rd (after my 5th treatment) my husband and I are traveling to Iceland to see the Northern Lights, laze in all the mineral baths and see the wonders of Iceland (lots of good food I'm told too!). Maybe Santa Fe after treatment 6? I have decided that all the money we have saved for retirement might need to be spent earlier rather than later. (well, at least some of it) and I should just go for it. It has made a remarkably difference in my outlook...having a future to look forward to (even in small bites) makes me energized and alive.
I hope your journey into further healing goes well, I do hear it is sometimes hard to process and there is some PTSDish stuff that pops up. But after all you have gone through it seems that you have some great skills to embrace a life without chemo and surgery! Congratulations!!! You are a miracle of the universe!
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Your embrace of your situation and determination to enjoy however long you have may have a positive effect on others who see how you're making lemonade out of lemons! I am planning to spend a month in Spain next spring, staying in a rental flat in Seville (my favorite city in the world) and taking a couple of short trips to other parts of Spain (probably including Barcelona). There's the chance that I'll live another 10+ years, so I'm balancing special experiences with prudent limits to how much I withdraw from retirement funds.
I'm curious about your oncologist's fatalistic perspective, placing you in palliative care (the chemotherapy that may extend your life). If the cancer has spread remotely from your gallbladder (for example, to your colon or spine), then I'm sure that metastasis is what he is thinking of. Is this what he's calling "systemic" cancer? I have concerns about the course of treatment I have, though I'm not questioning the decision. That two months of no chemotherapy in the middle of 8 cycles of infusions? It seems logical that left time for cancer cells to replicate. In the middle of that time, resectioning surgery included the removal of about 18 lymph nodes. Five of them were positive for carcinoma. No matter how many lymph nodes were removed, finding 5 in addition to the 1 removed in the original cholecystectomy is "not good news" (my oncologist's gentle term).
To be clear: I am undergoing the full protocol, start to finish, for gallbladder cancer patients at my stage of cancer at time of discovery (10 months ago). I have had an extremely easy time with chemotherapy. The resectioning surgery? Utterly brutal with extreme pain during the first 7-10 days. But that was 4 1/2 months ago. I'm fine now.
At Stage III-B (regional metastasis), my oncologist told me "We're going for a cure." I have secondary aspects of the cancer cells (e.g., a signet-ring cancer cell morphology in some of the cancer they removed in an initial cholecystectomy) that make a permanent remission less likely, even though there is currently nothing seen on the CT scan. I will have two cancer antigen tests next week. If their numbers are not increasing, then we will assume the cancer is gone, even though it might be traveling via my vascular or lymphatic system in very small numbers. I was told by my oncologist that gallbladder cancer has more of a tendency to "travel distantly" than some other types. But there is a 5-year survival rate that is getting better as the details of improved treatment protocols are implemented.
I am sure that, for many cancer patients, PTSD occurs. It can be traumatic to learn that your life in the near future is not what you anticipated. The cancer is out of the patient's control beyond following whatever treatment plan your oncologist recommends or choosing to die without treatment. I suffer from PTSD, but it's from my childhood, not from this latest detour along the path of my life. I think I've been mentally prepared for death as a matter of personality. Am I prepared for awful symptoms near the end of my life? Probably not. As with having no serious side effects from chemotherapy (other than neutropenia) being a total surprise, I have absolutely no idea how the end of my life will present itself.
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I believe the oncologist is working with the situation that my cancer is a Small Cell Neuroendocrine Carcinoma, which operates differently from some of the other types. I was diagnosed, like you, at Stage IIIB, local mets in the liver and lymph nodes only. Nothing ever picked up on the MRI, CT or PET scans. But I think it is the type of cancer...it just doesn't stay put, kind of lots of 'satellites' out there undetected and you just want to keep after them. After your description of the surgery...maybe I am dodging a bullet? I don't know...it's human nature to just want it the heck out!
What a wonderful prognosis for you. I hope you have the dream trip to Spain...one of the countries I hope to visit if I get the time. Again, what a blessing to know you have some time to stretch out and savor!
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Thanks so much for explaining your situation further! I keep hoping that more people will find this thread of discussion, so my emphasis (as the person who created the discussion board) is to share whatever I have double- or triple-checked for accuracy and to share my own experiences--mostly from a techie perspective. Having spent 30+ years in high-tech research unrelated to medicine, it's still my predisposition to think this way. I've found it to be very helpful in dealing with medical "surprises": I approach them with nerdy curiosity. 🤓
So, here's what I found without looking too far:
"Gallbladder neuroendocrine neoplasms (GB-NEN) are very rare neuroendocrine tumors (NETs). GB-NEN can present as carcinoid or typical/atypical carcinoid or small cell carcinoma. Most of the GB-NENs present as gall bladder polyps or stones with right upper quadrant pain, nausea and non-specific symptoms which leads to clinical misdiagnosis. Considering the rare occurrence of GB-NENs, and lack of multi-center research data there is no unified standard for identification and treatment."
I think I understand you to say that these NETs are much more persistent and migratory than most other cancers in the region. That there is no unified standard of care also explains a lot about your oncologist's recommendations. Cholecystectomy surgery requires great care. I was very fortunate that my general surgeon who did the original cholecystectomy knew to remove the gallbladder whole and placed in a bag before taking it out. He followed the same procedure for the lymph node he removed. My oncology resectioning surgeon told me that the most typical place for cancer cells to "rub off" inside the body is at the endoscopic incision points, but there's also the need to "tidy up" the whole area as best possible when the surgeon can't see whether there are cancer cells in the liver, for example.
Yes, if a cholecystectomy was not a potential cure, I think you did dodge a bullet. My incision is over 7 inches long. The surgeon (considered to be one of only two surgeons in the Greater San Francisco Bay Area qualified to do this surgery, which involved removing segments 4B and 5 of my liver in addition to lots of lymph nodes) had to cut through the abdominal wall and layers of nerves. The liver is packed with blood, so carefully ensuring I would not bleed excessively took skill. One of his assistants led me to believe, before the surgery, that my incision would be about 3 inches long. I actually didn't know until I got home (after a full 7 days in the hospital) that the reason for the extreme pain I'd had was because the incision cut just below the bottom of my rib cage from the center line (navel) to the side. I cried (due to the shock) when I saw it in a full-length mirror.
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Thanks for looking up the info about NET GB tumors....it is also a small cell carcinoma...very rare to see in the GB...as I understand it and from my oncologist there have only been 126 (maybe I'm 127) cases reported in the US in the past 10 years...so it is a case by case situation...no stats or standardized treatment protocols, it really is one treatment, one step at a time...but then it leaves the door open for hope? I guess they use some of the small cell research from the lung cancer stuff but the clinical trials are not open to non-lung small cell folks.
It is interestingly more prominent in India and Southeast Asia...but that research may not be as robust as (sadly)they don't always seem to have the same resources/treatments available. Pretty dismal results.
Sounds like your surgery was pretty extreme! But glad you got one of experts in the field...seems to have served you well. The surgeon I first met with mentioned the situation with endoscopic spreading of the cells and he worked to have me get my biopsy results through a regular endoscopy so that it stayed in GI tract and no cells through an incision...thoughtful guy! Especially now that he won't even get to do surgery.
Even though the surgery was super traumatic and difficult to recover from...look at you now! In remission! Thanks for posting and I agree, would love to see more people in on the posts....maybe there just aren't that many of us.
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One of the difficulties with plain old gallbladder cancer is that it presents differently (and earlier) in the Far East, for example, than in the West (Europe, North America) and the prevalence and characteristics may be very different in the two regions. It's difficult, therefore, for researchers to include data sets from other regions in their meta-studies. From what I've read, your NET gallbladder tumors are not only an extremely rare type of cancer but also quite difficult to diagnose correctly.
If a remission is not possible in your case, I hope that palliative care keeps you functioning and enjoying life for as long as you hope. I know someone who's been at stage IV of another kind of cancer and palliative care and continues to travel the world to enjoy as much of his life as possible.
If you're comfortable sharing which cancer drugs or other treatment your oncologist has ordered, that might be helpful to others.
#gallbladdercancer #GBcancer #gemcitabine4cancer #cisplatin4cancer
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Happy to share my protocol. It is pretty simple. I receive my treatments every 21 days for a 3 day regimen. The first day I receive Cisplatin and Etoposide and then the next two days I receive just the Etoposide. On Mondays I have my labs drawn so that it's clear I am good to take the drugs. Then meet with the oncologist Tuesday prior to treatment, receive the treatments on Tu-We-Th and then on Friday I receive an injection to stimulate the bone marrow.
The week after my treatment week I am usually pretty tired and I take that as the drugs are working and killing all my cancer cells! So I just take it easy and let them do their work. Then the 3rd week I feel pretty good so that is when I have been traveling and doing all the stuff I really want to do! Return and start all over. Just completed my 5th treatment cycle and will have another CT scan after the 6th.
Good news is that after the 3rd cycle I had a CT scan and all the areas of tumor growth (liver, gallbladder and lymph nodes) were reduced in size by 2/3rds! The numbers looked very good and no new areas noted anywhere. I have never had any abnormal cancer antigen tests or changes in my liver enzymes. And there are no genetic markers that appear helpful....but every symptom that first opened this door for me has gone away...(abd pain, nausea, night sweats being the predominant ones).
To date have tolerated the treatments pretty well (little stuff has popped up but all manageable-GERD, shingles, GI infection, bone pain with the bone marrow stimulant which reversed with longer use of loratadine after the shot). Nothing that every got me close to hospitalized...but I do find my team super responsive as long as I keep them in the loop! And the pre-medications certainly take the edge off any side effects, they really have it down to a science!
Hope this is helpful to someone out there.
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Thanks so much! In the U.S., the official "standard of care" for gallbladder cancer at Stage III is to use capecitabine, with or without cisplatin, or to use gemcitabine with cisplatin. I guess your situation is different due to the type of tumors and cancer cells, even though the site of cancer origin is the gallbladder. I had one oncologist tell me that he'd only use capecitabine "to see you through to the end" while the oncologist I chose (from a different practice) ordered gemcitabine and cisplatin, used in the study I'm part of, and told me "We're going for a cure."
Cisplatin is an especially powerful drug, I've been told. I had it in combination with gemcitabine. The infusion treatment nurses routinely told me that my dose of cisplatin was "low" compared with other uses. What took the most time in the infusion treatment center was the ongoing hydration (a total of 1.5 liters of saline over 4 hours), with the gemcitabine infused over 30 minutes, then the cisplatin infused over the next 30 minutes. Then there was the requirement to drink almost 2 liters of water or other liquids that are caffeine- and alcohol-free after that over the next 24 hours. Flush those kidneys and keep them healthy! (It typically took me a week to overcome edema and a water-weight gain of about 4 pounds (1.8 kg).
My oncologist ordered Zarxio for the granulocyte colony-stimulating factor (G-CSF). It is a type of man-made filgrastim that stimulates the growth of neutrophils, essential for fighting infections. Neupogen is another form of filgrastim, but my insurance would only cover Zarxio. It's expensive and worth every penny of the co-pay! Since I had infusions on Day 1 and Day 8 of every 21-day cycle, I took 3 days of at-home injections after Day 1 and 7 days of at-home injections after Day 8. I had to have a 2-week infusion delay before the final cycle because I still had neutropenia. I pictured any remaining cancer cells doing a happy dance, but I have no indication that any remain at this point.
It is very exciting that your imaging showed such a fantastic reduction in the areas with tumors! Wow! That's something to celebrate, for sure!
I don't know why I've had false-negative CT scans in the past. I only know they were false because I had resectioning surgery (after a CT scan) that included removing more cancer. As for cancer antigens, the "normal range" for CA 19-9 (used for pancreatic cancer, biliary tract cancer, and a few other types) is a reading of less than 35 U/mL, but the way it's interpreted is by looking at changes rather than absolute numbers: If there's a continuing rise, cancer might be increasing; if there's a continuing reduction, cancer might be reducing. When my CA 19-9 was at 10 U/mL, my surgeon subsequently removed 5 cancerous lymph nodes. The decline from the previous peak was due to chemotherapy. But being well within what was labeled as "normal" did not mean there was no cancer remaining.
I am very appreciative of the expertise required in the treatment of cancer, but especially in the treatment of rare and "eccentric" forms of cancer.
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UPDATE 15 November 2023
Obstacles to completing chemotherapy: I completed chemotherapy on August 26th, 2023. My reaction to chemotherapy were minor, other than repeated low white blood cell count, particularly with neutrophils. Due to the repeated neutropenia, some of my infusions had to be delayed. I wondered whether there were cancer cells having a heyday in my blood vessels.
The limits of CT scans: On September 12th, I had a CT scan that the radiologist documented as "no cancer detected." The the cancer antigen 19-9 density had risen slightly--to the level it was before I had resectioning surgery, which showed 5 cancerous lymph nodes in the liver's common bile ducts and nerves. I was assured that the comparatively low number was nothing to be concerned about. However, having found 5 of these lymph nodes during April 26th's surgery was not a good sign.
Two weeks after the CT scan, I took a two-week vacation to visit one of my sisters and some friends I hadn't seen since before the 2020 pandemic.
Warning signs: Before I returned, I noticed that my gut felt odd. Soon, that "odd" feeling became pronounced pain. At first, I thought it might be IBS but had a hunch that something was going wrong. I contacted my oncologist who rescheduled my CT scan that was scheduled for mid-December, moving it up to November 2nd. The CT scan showed that the gallbladder cancer had very quickly spread all over my peritoneum and along the outside of my intestines. The result is that these areas are stiffening, making digestion and elimination difficult. (Last Sunday, the pain was so severe that I was using childbirth breathing techniques to help deal with the pain and doing a fair amount of yelling, which is not how I normally respond to pain.) I'm now using an assortment of home treatments for the lack of digestive motility (Miralax [osmotic laxative], sennocides [bowel irritant], ducosate [stool softener], and simethicone [gas reliever]) daily. I am working with my oncologist's team to find a pain reliever that's strong enough but not constipating. Meanwhile, it's a combination of acetaminophen (Tylenol) and ibuprofen (Advil). The Norco (5 mg hydrocodone + 375 mg acetaminophen) tablets I'd been prescribed just made the lack of intestinal motility worse. Hydrocodone is constipating, as are most opioids.
The limits of standard-of-care treatment: In essence, the gemcitabine & cisplatin chemotherapy had kept the cancer from having a strong (visible) presence, but had not stopped these "hiding" cancer cells from regenerating themselves. The first pathologist's report, based on the cholecystectomy gallbladder, lymph nodes, and liver samples, had pointed out the presence of cancer cells that were "advanced": poorly cohesive and some with a signet-ring morphology. The latter is a more aggressive type of cancer and one more resistant to treatment. The resectioning surgery produced additional cancerous material but the pathologist's report was not as specific about the types of cancer cells found.
Secondary treatment option: I've been sent to see another oncologist who just joined a nationwide (U.S.) clinical trial for patients whose cancer "recurred" after a combination of chemotherapy and resectioning surgery. If I qualify (there are many criteria that must be met), I will begin a combination of chemotherapy and an experimental immunotherapy drug within two weeks of signing the informed consent agreement. The sole purpose of this treatment is palliative. The ethics criteria of the study include that I can stop treatment at any time. If I'm randomly assigned to the group that receives only a well-known chemotherapy drug and it's not helping, I would automatically cross over to the cohort that gets both drugs. The two drugs used (paclitaxel: chemotherapy; CTX-009: immunotherapy) are quite potent, the oncologist warned me. I'm unlikely to have an easy time of it, even though I had a very easy time with the adjuvant chemotherapy surrounding resectioning surgery. So, there's some chance that I'll decide the side effects aren't worth a limited extension of life. Quality of life is much more important to me than extending my life.
Another clinical trial: This is an early Phase 2 drug study. The Phase 1 study included only 23 patients, 40% of whom had some cancer shrinkage for a period of time. The Phase 2 study will have 150 participants (if they can find that many patients in the U.S. who are willing to be part of the study and meet the criteria during the time of the study, which has 13 months left before completion). However, I imagine I'll be dead by the time they have that many patients on board with the study. You can read about it at https://cholangiocarcinoma.org/a-phase-2-3-randomized-controlled-study-of-ctx-009-in-combination-with-paclitaxel-versus-paclitaxel-alone-in-adult-patients-with-unresectable-advanced-metastatic-or-recurrent-biliary-tract-cancers/. That webpage includes a list of universities participating in the study. Some, such as the Stanford GI oncologist I saw, only recently joined the study.
A possible alternative: My original oncologist has also ordered another round of DNA tests via Signatera. If I don't qualify for the clinical trial or don't want to be part of it, he may suggest I try a targeted treatment based on specific mutations of my cancer DNA. I would still be able to agree to treatment or not or to stop treatment if I found it wasn't worth the side effects.
A layperson's perspective: As quickly as my cancer spread in only 7 weeks (between CT scans), I believe it will continue to move very quickly. In fact, my pain symptoms are appearing in more and more abdominal and pelvic areas. I will have one piece of information when we go through acceptance criteria: Participants must have at least 12 weeks left to live as estimated by their oncologist.
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UPDATE 15 November 2023
Obstacles to completing chemotherapy: I completed chemotherapy on August 26th, 2023. My reactions to chemotherapy were minor, other than repeated low white blood cell count, particularly with neutrophils. Due to the repeated neutropenia, some of my infusions had to be delayed. I wondered whether there were cancer cells having a heyday in my blood vessels.
The limits of CT scans: On September 12th, I had a CT scan that the radiologist documented as "no cancer detected." The cancer antigen 19-9 density had risen slightly--to the level it was before I had resectioning surgery, which showed 5 cancerous lymph nodes in the liver's common bile ducts and nerves. I was assured that the comparatively low number was nothing to be concerned about. However, having found 5 of these lymph nodes during April 26th's surgery was not a good sign.
Two weeks after the CT scan, I took a two-week vacation to visit one of my sisters and some friends I hadn't seen since before the 2020 pandemic.
Warning signs: Before I returned, I noticed that my gut felt odd. Soon, that "odd" feeling became pronounced pain. At first, I thought it might be IBS but had a hunch that something was going wrong. I contacted my oncologist who rescheduled my CT scan that was scheduled for mid-December, moving it up to November 2nd. The CT scan showed that the gallbladder cancer had very quickly spread all over my peritoneum and along the outside of my intestines. The result is that these areas are stiffening, making digestion and elimination difficult. (Last Sunday, the pain was so severe that I was using childbirth breathing techniques to help deal with the pain and doing a fair amount of yelling, which is not how I normally respond to pain.) I'm now using an assortment of home treatments for the lack of digestive motility (polyethylene glycol/PEG [osmotic laxative], sennocides [bowel irritant], docusate [stool softener], and simethicone [gas reliever]) daily. I am working with my oncologist's team to find a pain reliever that's strong enough but not constipating. Meanwhile, it's a combination of acetaminophen (Tylenol) and ibuprofen (Advil). The Norco (5 mg hydrocodone + 375 mg acetaminophen) tablets I'd been prescribed for severe pain just made the lack of intestinal motility worse. Hydrocodone is constipating, as are most opioids.
The limits of standard-of-care treatment: In essence, the gemcitabine & cisplatin chemotherapy had kept the cancer from having a strong (visible) presence, but had not stopped these "hiding" cancer cells from regenerating themselves. The first pathologist's report, based on the cholecystectomy gallbladder, lymph nodes, and liver samples, had pointed out the presence of cancer cells that were "advanced": poorly cohesive and some with a signet-ring morphology. The latter is a more aggressive type of cancer and one more resistant to treatment. The resectioning surgery uncovered additional cancerous material but the pathologist's report was not as specific about the types of cancer cells found.
Secondary treatment option: I've been sent to see another oncologist who just joined a nationwide (U.S.) clinical trial for patients whose cancer "recurred" after a combination of chemotherapy and resectioning surgery. If I qualify (there are many criteria that must be met), I will begin a combination of chemotherapy and an experimental immunotherapy drug within two weeks of signing the informed consent agreement. The sole purpose of this treatment is palliative. The ethics criteria of the study include that I can stop treatment at any time. If I'm randomly assigned to the group that receives only a well-known chemotherapy drug and it's not helping, I would automatically cross over to the cohort that gets both drugs. The two drugs used (paclitaxel: chemotherapy; CTX-009: immunotherapy) are quite potent, the oncologist warned me. I'm unlikely to have an easy time of it, even though I had a very easy time with the adjuvant chemotherapy surrounding resectioning surgery. So, there's some chance that I'll decide the side effects aren't worth a limited extension of life. Quality of life is much more important to me than extending my life.
Another clinical trial: This is an early Phase 2 drug study. The Phase 1 study included only 23 patients, 40% of whom had some cancer shrinkage for a period of time. The Phase 2 study will have 150 participants (if they can find that many patients in the U.S. who are willing to be part of the study and meet the criteria during the time of the study, which has 13 months left before completion). However, I imagine I'll be dead by the time they have that many patients on board with the study. You can read about it at https://tinyurl.com/CTX009ClinicalTrial. That webpage includes a list of universities participating in the study. Some, such as the Stanford GI oncologist I saw, only recently joined the study. (I shortened the URL to make it easier to read and use.)
A possible alternative: My original oncologist has also ordered another round of DNA tests via Signatera. The purpose is to have a more accurate means of verifying the state of the cancer than what the typical CEA and CA 19-9 cancer antigen tests can show. If I'm in the clinical trial, I'll have this test after every 2 cycles of treatment, plus one right now, before the treatment begins.
A layperson's perspective: As quickly as my cancer spread in only 7 weeks (between CT scans), I believe it will continue to move very quickly. In fact, my pain symptoms are appearing in more and more abdominal and pelvic areas. I will have one piece of information when we go through acceptance criteria: Participants must have at least 12 weeks left to live as estimated by their oncologist. I'm frustrated. Really frustrated. The metastasis was confirmed on November 2nd, with a team of oncologists and oncology surgeons deciding what treatment plan was probably best for me on November 8th. It's now November 16th and I'm nowhere near starting treatment. Perhaps it doesn't matter to them because I'm going to die before long anyway? For sure, they are researchers first and foremost, so they should be eager to enroll me in the study and get started with treatment.
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Thank you again for your timely and informative posts. I am III-B also, diagnosed on March 2, 2023. I completed 7 rounds of Xeloda, had a fairly easy exam until the end, when blood results weren't good. About a week later I noticed an increase in pain, and I've been hospitalized for it. I can't eat and have lost another 20 pounds. I have a PET scan scheduled to next week to see if there are mets, and to check on a blood clot they found while I was hospitalized.i am facing the reality that this might be the end for me
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