Gallbladder Cancer Diagnosis
Hi -
I was 'officially' diagnosed with gallbladder cancer on April 17th of this year. This was following a laparoscopic gallbladder surgery in which a mass detected previously by ultrasound and CT scan seemed suspicious. It was diagnosed as a stage 2 tumor. After meeting with an oncologist, a surgeon and doing some research, the protocol is to have another surgery to remove part of the liver and lymph nodes, with the possiblity of chemo afterwrds depending on the biopsy results. I came across this forum while looking up info on gallbladder cancer, which I am finding is a bit challenging as well as somewhat ominous. I also didn't see any recent posts on this topic which is why I started a new thread. I am trying my best to stay positive yet realistic and am hoping they caught it early enough and that the second surgery will not reveal any signs that the cancer has spread. Incidentally I had no gallbladder symptoms - only some ongoing lower right abdominal discomfort and the nagging sense that something wasn't quite right. Since the diagnosis I have started a predominantly plant-based diet and upped the exercise as initially I was bombarded with thoughts of what to eat/do and where to begin. I am only 52 (female) and will not accept the fact that my life could be cut short by this disease. Any info or help would be greatly appreciated - thanks.
Comments
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Dear LeoLady, I'm so deeply sorry about what you are going through - and I'm so glad to read that the plan is surgery. It's also great to hear that you've started a mainly plant-based diet and are exercising more. I hope you have a great medical team at one of the top centers where they see more cases of this rare cancer, and that your surgery is soon and goes perfectly!
You might have read my earlier posts on this site but they're hard to find, so I'll share what we've learned here in case it might be helpful.
It's easier to search this other site, seems to be a bit more active: https://cancercompass.com/message-board/cancers/gallbladder-cancer/1,0,119,21.htm
My beloved, still-young, athletic dad also got a stage 4 GBC diagnosis out of nowhere. They also removed his gallbladder but it had already spread to the liver and peritoneal carcinomatosis. Heartbroken beyond words. That was in early March 2017. They also referred him for "palliative chemo" (the standard first-line chemo is Gemcitabine and Cisplatin). I didn't know if we'd have a month left together. But here we are ~15 months later, and we are hoping for much, much more.
I always prepare questions before seeing the doctors, and with a rare cancer like this, we were recommended to go to a large reputable center where they see more cases and have specialists in biliary cancers (in the US: MD Anderson, Memorial Sloan Kettering, Mass General, etc...)
Can you ask them right away to send the biopsy from your gallbladder removal for genomic testing, like at Foundation One? If you have a targetable mutation, you may be eligible for targeted therapy. Most importantly, ask them to check for the immunotherapy indicators as well: if you have high microsatellite instability, DNA mismatch repair, high tumor mutation burden, PD-1/PD-L1 - you may be a candidate for immunotherapy.
Since you're going to have a surgery anyway, I'd inquire about the drug sensitivity testing that Dr. Nagourney (Rational Therapeutics) or Dr. Wiesenthal (which requires the fresh biopsy to be overnighted to them.) That way, if you have spread or even as an insurance for the future, you can know which chemotherapies and other drugs your cancer is most likely to be sensitive to. This is slightly out of the box but it doesn't hurt to get the test if you're already getting surgery. In my dad's case, he's not planned for one so we'd have to do a laparoscopic biopsy so we aren't going for it at the moment... Also since you'll be getting another surgery, I've read that protein is important to help heal quickly (for plant-based protein, we do chickpeas, lentils, beans, hemp seeds...)
I also read the book "Radical Remissions" and it gave me hope to hear what's possible for people who have had completely unexpected recoveries. We try to do a multi-pronged approach (so we're doing chemo, acupuncture, recommended supplements, CBD oil and medical marijuana, plant-based healthy diet, he goes to therapy to deal with emotions, exercises when he can... pretty much everything that might help and can't hurt. We try to take away his stress as much as we can, and help him focus on living as much as possible - simple things like a walk in nature, laughing at a comedy tv show...)
Things that help my dad tolerate chemo, besides everything I wrote above: drinking tons of water. Ginger and CBD oil/medical marijuana. Going for a walk even if he's tired (it helps fight fatigue). I recently read from an NCI study that Wisconsin Ginseng helps with chemo-related fatigue.
My dad is still active and if you saw him on the street, you wouldn't know what he is battling. He did Gem/Cis for 11 months, and during that period the scans showed slight shrinkage. Then a scan showed slight growth so now he has been on Folfiri for 2 months. His latest scan was stable. Hopefully we'll ride the Folfiri for a long time. If we have to change, other things on my list to look into are metronomic chemo, liver-directed therapies, ablations, IRE/nanoknife, the drug sensitivity testing (which we'd need a laparoscopic biopsy for), any promising clinical trials that open up (as far as I can tell, there's nothing super promising for my dad right now because he doesn't have any immunotherapy indicators), and as much of the holistic treatments that might help and don't hurt as possible.
If you have any other questions, don't hesitate to ask. (It's easier to message me on the other site because it notifies me of replies, but I'll check back in here too.) My very best wishes to you!
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As a leukemia patient whose done a lot of private research, and whose cancer cells was successfully tested by Dr. Nagourney in Long Beach, CA, I just wanted to add that his company is now called Nagourney Cancer Institute (used to be Rational Therapeutics).
I also believe that getting your cancer cells functional analyzed such as what Dr. Nagourney's lab offers is far more important than getting genomic testing such as Foundation One, Caris, etc. Genomic testing can come up with theoretical drug options but rarely (a handful of mutations to date) translates directly to which drugs will work for your cancer cells. Look at the now famous SHIVA trial as an example of disappointing genomic testing results. Functional profiling analysis (still called drug sensitivity by some) directly tells you what your cancer cells are sensitive to.
In my case, I had six occurrences of leukemia. Had standard chemo treatments based on NCNN guidelines, genomic testing which found an actionable mutation and I was put in a clinical trial for it at a major medical center and I still never had more than a 2 yr partial remission. I realized later that it was all educated guessing. I found Dr. Nagourney's lab and had my cancer cells tested on my 7th occurrence and he found a 2-drug combo that actually knocked my leukemia out (0.02% according to the pathology report).
Genomic testing is far more common but I'll take functional analysis any time. It's not so "out of the box" anymore - more major research centers are touting functional profiling advances nowadays.
Hope this helps. Cancer sucks - we all have to hang in there and take control of our cancer journey.
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Hello Leo Lady
I am sorry that you find the need to join this discussion board. Gallbladder cancer is a terrible disease - I too was diagnosed this year in February of 2018. I had under went laproscopic gallbladder removal for some minor gallbladder pain and 3 stones. Nothing came to mind that it might be cancer. The following week after the pathology report came back I was diagnosed. At that time they completed MRI, CT Blood work and recommended the re-section surgery. I went for the resection surgery and there was a spot on my liver that came back as positive for cancer during the surgery frozen section, so the surgery was aborted. However, a week later when the FINAL pathlogy came back it was NOT cancer. I had opted for a second opinion at that point and I am now receiving care at Mayo Clinic in Rochester. It certainly hasn't been a easy road for me as I had 2 other delays due to a bile blockage that occured after my second surgery. The first ERCP failed so they had to so another one. I am now doing neo-adjuvant chemo therapy of Gemzar and Cisplatin - just finished my first round. Mayo clinic is recommending 4 rounds then scans and an attempt at the surgery again, as it was too soon to do the surgery after already having one on 2/22 and 3/13. Each round of Chemo is 21 days long. Weeks 1 and 2 - I get both gemzar and cisplatin then on the 3rd week I have off. Next week is my first week off - I am hoping to feel better next week with the break between treatments. I am not sure what to say about how good/bad treatment is as I have never had Chemo before - but I have experienced fatique and nausea quite a bit. I am trying to take the advice I have read by walking at least a mile a day and drinking plenty of water. I am a very active 53 year old who enjoys boating summer on the river, I traveled and did consulting for work - went to yoga regularly. I am finding this chemo a bit of a challenge, but like you I am too young to have this take me . I have been diagnosed with PT2NXMX - metasis and lymphode invation unkown.
Good luck to you on your journey - People have survived this.
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glenn4health said:
As a leukemia patient whose done a lot of private research, and whose cancer cells was successfully tested by Dr. Nagourney in Long Beach, CA, I just wanted to add that his company is now called Nagourney Cancer Institute (used to be Rational Therapeutics).
I also believe that getting your cancer cells functional analyzed such as what Dr. Nagourney's lab offers is far more important than getting genomic testing such as Foundation One, Caris, etc. Genomic testing can come up with theoretical drug options but rarely (a handful of mutations to date) translates directly to which drugs will work for your cancer cells. Look at the now famous SHIVA trial as an example of disappointing genomic testing results. Functional profiling analysis (still called drug sensitivity by some) directly tells you what your cancer cells are sensitive to.
In my case, I had six occurrences of leukemia. Had standard chemo treatments based on NCNN guidelines, genomic testing which found an actionable mutation and I was put in a clinical trial for it at a major medical center and I still never had more than a 2 yr partial remission. I realized later that it was all educated guessing. I found Dr. Nagourney's lab and had my cancer cells tested on my 7th occurrence and he found a 2-drug combo that actually knocked my leukemia out (0.02% according to the pathology report).
Genomic testing is far more common but I'll take functional analysis any time. It's not so "out of the box" anymore - more major research centers are touting functional profiling advances nowadays.
Hope this helps. Cancer sucks - we all have to hang in there and take control of our cancer journey.
Dear Glenn4health,
Thank you so much for sharing more about the Nagourney Cancer Institute / functional profiling analysis. When I found out about it recently I was desperate to learn more and see if we can do it for my dad.
(He has stage 4 gallbladder cancer, mets on the liver and peritoneal carcinomatosis upon diagnosis and still remaining. He did first-line chemo (Gem/Cis) for 11 months, and has been on 2nd line chemo (Folfiri) for 3 months. But his liver enzymes are rising and he didn't recover his strength enough on his latest week-off to get chemo this round so they're pausing it to potentially lower dose when he recovers or I don't know what... he's still young and athletic, even when he started Folfiri he was exercising most days on his off-week. But that was impossible this last round.)
I used the words "out of the box" not because I don't find the concent of this functional analysis crucial - I do and want to get it for my dad - but because none of our doctors at the major centers were supportive of it when I asked (at Memorial Sloan Kettering or our local MSK-affiliated Miami Cancer Institute.) I would love to know which doctors at the major centers, especially MSK, would be amenable so that we could find out if we could safely get a biopsy for my dad to send to Dr. Nagourney.
I'm not sure if they just see me as a kid (I'm in my 20's) or if they are just closed to approaches they haven't adopted yet, but our oncologist was very dismissive when I asked about functional profiling analysis.
I am scared that undergoing a laparoscopic biopsy at this point would cause problems, and it's hard to get clear answers when MSK is not on board with the concept. I am also concerned that he has already tried 4 chemotherapy drugs (gem, cis, 5fu, irinotecan) so it narrows down the potential active drugs? And also we don't know from the profiling whether he will tolerate the drugs?
I read about one oncologist in NYC who sends his patients' tissue to Dr. Wiesenthal's lab - any thoughts on that one?
Have you heard anything about metronomic or low-dose chemo? I was looking into Bruckner Oncology...
I am so happy to hear your leukemia was knocked out, and I send you my very best wishes.0 -
Hi LiliTM -LiliTM said:Dear LeoLady, I'm so deeply sorry about what you are going through - and I'm so glad to read that the plan is surgery. It's also great to hear that you've started a mainly plant-based diet and are exercising more. I hope you have a great medical team at one of the top centers where they see more cases of this rare cancer, and that your surgery is soon and goes perfectly!
You might have read my earlier posts on this site but they're hard to find, so I'll share what we've learned here in case it might be helpful.
It's easier to search this other site, seems to be a bit more active: https://cancercompass.com/message-board/cancers/gallbladder-cancer/1,0,119,21.htm
My beloved, still-young, athletic dad also got a stage 4 GBC diagnosis out of nowhere. They also removed his gallbladder but it had already spread to the liver and peritoneal carcinomatosis. Heartbroken beyond words. That was in early March 2017. They also referred him for "palliative chemo" (the standard first-line chemo is Gemcitabine and Cisplatin). I didn't know if we'd have a month left together. But here we are ~15 months later, and we are hoping for much, much more.
I always prepare questions before seeing the doctors, and with a rare cancer like this, we were recommended to go to a large reputable center where they see more cases and have specialists in biliary cancers (in the US: MD Anderson, Memorial Sloan Kettering, Mass General, etc...)
Can you ask them right away to send the biopsy from your gallbladder removal for genomic testing, like at Foundation One? If you have a targetable mutation, you may be eligible for targeted therapy. Most importantly, ask them to check for the immunotherapy indicators as well: if you have high microsatellite instability, DNA mismatch repair, high tumor mutation burden, PD-1/PD-L1 - you may be a candidate for immunotherapy.
Since you're going to have a surgery anyway, I'd inquire about the drug sensitivity testing that Dr. Nagourney (Rational Therapeutics) or Dr. Wiesenthal (which requires the fresh biopsy to be overnighted to them.) That way, if you have spread or even as an insurance for the future, you can know which chemotherapies and other drugs your cancer is most likely to be sensitive to. This is slightly out of the box but it doesn't hurt to get the test if you're already getting surgery. In my dad's case, he's not planned for one so we'd have to do a laparoscopic biopsy so we aren't going for it at the moment... Also since you'll be getting another surgery, I've read that protein is important to help heal quickly (for plant-based protein, we do chickpeas, lentils, beans, hemp seeds...)
I also read the book "Radical Remissions" and it gave me hope to hear what's possible for people who have had completely unexpected recoveries. We try to do a multi-pronged approach (so we're doing chemo, acupuncture, recommended supplements, CBD oil and medical marijuana, plant-based healthy diet, he goes to therapy to deal with emotions, exercises when he can... pretty much everything that might help and can't hurt. We try to take away his stress as much as we can, and help him focus on living as much as possible - simple things like a walk in nature, laughing at a comedy tv show...)
Things that help my dad tolerate chemo, besides everything I wrote above: drinking tons of water. Ginger and CBD oil/medical marijuana. Going for a walk even if he's tired (it helps fight fatigue). I recently read from an NCI study that Wisconsin Ginseng helps with chemo-related fatigue.
My dad is still active and if you saw him on the street, you wouldn't know what he is battling. He did Gem/Cis for 11 months, and during that period the scans showed slight shrinkage. Then a scan showed slight growth so now he has been on Folfiri for 2 months. His latest scan was stable. Hopefully we'll ride the Folfiri for a long time. If we have to change, other things on my list to look into are metronomic chemo, liver-directed therapies, ablations, IRE/nanoknife, the drug sensitivity testing (which we'd need a laparoscopic biopsy for), any promising clinical trials that open up (as far as I can tell, there's nothing super promising for my dad right now because he doesn't have any immunotherapy indicators), and as much of the holistic treatments that might help and don't hurt as possible.
If you have any other questions, don't hesitate to ask. (It's easier to message me on the other site because it notifies me of replies, but I'll check back in here too.) My very best wishes to you!
Hi LiliTM -
Thank you so very much for all of that helpful info. (Incidentally I happened upon that other forum you mentioned and may join as you are correct that it does seem more active for GBC.)
I am very happy to hear that your dad is doing so well all things considered and hopefully things will continue that way. My gut instinct (no pun intended) does tell me to stay with the plant-based diet, and thanks for the tip on the pre-surgery proteins - I will definitely keep that in mind. The surgery is being done at Penn Medicine in Phildalphia. I did look into getting a second opinion from Memorial Sloan Kettering, however our insurance is out of network with them and since surgery seems to be the highly recommended next step anyway, I've decided to proceed with the surgery at Penn on 6/12. Then depending on the biopsy results which hopefully are clean, will decide on what to do next.
Everything I have heard and read so far indicates this tends to be an aggressive cancer and so my original 'anti-second surgery just change my diet and habits' idea has been modified. That is very interesting about the targeted therapy and I do not think the drug sensitivity testing idea is out of the box at all - in fact I am going to ask about it. I too believe in a multi-faceted approach. I have just started reading that book 'Radical Recovery' which came highly recommended - what a great book so far. I also have looked into medical marijuana for anti-tumor/cancer properties and was suggested to try RSO which I am still researching.
Thank you again.
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Hi glenn4health -glenn4health said:As a leukemia patient whose done a lot of private research, and whose cancer cells was successfully tested by Dr. Nagourney in Long Beach, CA, I just wanted to add that his company is now called Nagourney Cancer Institute (used to be Rational Therapeutics).
I also believe that getting your cancer cells functional analyzed such as what Dr. Nagourney's lab offers is far more important than getting genomic testing such as Foundation One, Caris, etc. Genomic testing can come up with theoretical drug options but rarely (a handful of mutations to date) translates directly to which drugs will work for your cancer cells. Look at the now famous SHIVA trial as an example of disappointing genomic testing results. Functional profiling analysis (still called drug sensitivity by some) directly tells you what your cancer cells are sensitive to.
In my case, I had six occurrences of leukemia. Had standard chemo treatments based on NCNN guidelines, genomic testing which found an actionable mutation and I was put in a clinical trial for it at a major medical center and I still never had more than a 2 yr partial remission. I realized later that it was all educated guessing. I found Dr. Nagourney's lab and had my cancer cells tested on my 7th occurrence and he found a 2-drug combo that actually knocked my leukemia out (0.02% according to the pathology report).
Genomic testing is far more common but I'll take functional analysis any time. It's not so "out of the box" anymore - more major research centers are touting functional profiling advances nowadays.
Hope this helps. Cancer sucks - we all have to hang in there and take control of our cancer journey.
Hi glenn4health -
I'm so sorry to hear about the leukemia - wow six times is alot - good for you to have overcome it thus far and hopefully for good. As I said to LiliTM I really like the idea of the drug sensitivity testing and am going to mention it at Penn. I agree with taking control and I find that hearing other people's stories who have actually gone through it are far more helpful so far than the well meaning 'you should do blah blah blah' or 'I would do blah blah blah' from those who have not ever been given a cancer diagnosis. For years I have been inching my way to diet/health changes and this is a wakeup call for sure. I realize there are no guarantees but at least I feel like I am in control of something. Thank you for your comment.
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Hi KCFlash -
Hi KCFlash -
Thank you for your response. (Gee - lucky us!) I am so sorry to hear about the surgeries and misdiagnosis. So you/they don't know if it has spread? Are they doing the chemo as a precautionary measure or because it is a stage 2 tumor? On the pathology report after my gallbladder surgery it says pT2a. Everything I've read indicates the second surgery is necessary as that is the stage where the tumor has begun to penetrate the muscle wall, if I understand correctly. I am really dreading the second surgery to be honest, and as I mentioned earlier I was going to not do it however it seems that it offers the best chance of preventing the spread of this cancer. Good luck to you too. Let's be among those who survive!
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Hi LiliTM
Thanks for your nice reply to my post. I hope your dad could get his cells functionally analyzed. It is not surprising that MSK dooctors would not be in favor of Dr. Nagourney's work or at least dismissive. Even in my case, I asked the southern california major medical center I had gone to about Dr. Nagourney. They said they knew about him. Were they ever going to tell me even after years of treatments failed and the clinical trial they put me in failed for me? Nope. Very eye opening.
In general, integrative doctors like Dr. Brian Lawenda and Dr. Keith Block love Dr. Nagourney's approach. All the oncology nurses I talk to locally love Dr. Nagourney's approach and think it's a no-brainer. To your question, I know their is a Dr. Grace in New York who works with Dr. Weisenthal and sends him patients.
Sadly, cancer is big business and since Dr. Nagourney is an oncologist and cancer researcher, he is essentially competition to oncologists. And oncology is a big business. No one wants to risk losing patients. And clinical trials while they have their place of course are still BIG dollars. And I think few oncologists want to admit they need another oncologist's help.
Why not use Dr. Nagourney as your oncologist? I've heard that he is still taking new patients and based on the patient stories on his website he seems to have a lot of patients from around the world. He is triple board certified as Hematologist/Oncologist/Internist.
Sadly, I've talked to some local oncologists who tell me they would rather try their tretament ideas before asking Dr. Nagourney to perform an assay. They say that if the patient is dying or if they run out of their own ideas, then they would consider sending their patient to Dr. Nagourney for testing. I think this is the reason that most of Dr. Nagourney's patients seem to be advanced cases. A lot of egos are involved in the medical world. Most of my family and friends are in the medical industry so I know. But you would think all doctors and medical centers are altruistic but it still is a business.
Examples:
My stepmom died of Pancreatic cancer slowly despite getting functional profiling results from Dr. Nagourney which found a nice triple drug combination for her that looked great but his report also found that her cancer cells were resistant to the two drugs her local oncologist wanted to give her. To start with, the local oncologist made up totally untrue statements about Dr Nagourney's work to try to prevent my dad and her to even go there. When I finally dragged my dad and stepmom down to Long Beach to get a functional profiling assay, their local oncologist was so incensed that he refused to even return my dad's phone calls for weeks. He then finally agreed to call a meeting to talk about it, by then she went downhill, was admitted into a hospital and she slowly passed away without getting ANY treatment. Terrible.
To this same point, my former neighbor got Stage 3 Lung Cancer (the typical NSCLC) but was still in great shape. His nephew convinced him to go to a famous big name medical center out here in southern California. They tried one standard drug but it didn't work. They then tried some genomic testing. Took 3 weeks. In the meantime, he was leaking ascites fluid which Dr. Nagourney could have tested in 7 days or less. So I gave him my copy of Dr. Nagourney's book, Outliving Cancer. My neighbor read it and was very impressed and showed the book to his oncologist at the major medical center and told him "I want this test". His oncologist told him "We do the same test here - don't go to Dr. Nagourney". Of course he was lying. So my neighbor stayed with the big brand name center. His genomic results showed nothing actionable. They eventually put him on a Phase I clinical trial. Phase 1 - yikes! He was in good shape all this time but the trial gave him a lot of blood clots and he went downhill fast and passed away. I am still upset about it. But I'm sure they made a lot of money off my neighbor joining the clinical trial and I guess his death advanced science?
As far as low doses, I know Dr. Nagourney told me that many people receive higher doses than they really need. It's more important to just get the right drug or drug combo NOT getting pounded with more and more of a drug. My case is a great example. I was getting a 2 drug combo based on functional profiling. I took the 1st drug every day for 5 days as scheduled. But, I only could take 1 1/5 doses out of 8 scheduled doses since I had severe side effects from the drug.
And guess what? It still worked! 0.02% residual leukemic cells. After 16 years and seven occurrences of leukemia.
Don't know about metronomic and I've heard of Dr. Bruckner but don't know enough to have any opinion.
Sorry for the long reply and my rambling stories. I will pray you and your dad get the right treatment.
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Amazing story!
Your story gives me alot of hope for my husband. My husband Rich was diagnosed with Stage 4 Intrahepatic Cholangiocarcinoma (bile duct cancer) which alot of times gets diagnosed as liver cancer. He has been through the Gem/Cis chemo combo and has done 2 different clinical trials all of them had to have the doses lowered because of severe side effects and then the tumor on his liver grew even bigger. We did the testing though Foundation One Lab for the mutations and that is what the clinical trials have all been based on but, like I said side effects make them lower the dose and things grow. I just e-mailed The Nagourney Cancer Institute to see if they have worked on any bile duct cancer patients and their response (which I can say was way fast-like overnight)they said yes they had and would be willing to look at a tumor sample of my husbands but, the problem here is where his tumor is wrapped around the portal vein I'm not sure we could another tumor sample. They said to have Rich's Dr send them a recent scan of the tumor and they would look at it. We go up to Mayo Clinic in Rochester this week and I plan on asking his Dr about this place and their testing but, I must say I'm afraid they will not want to help him in this type of testing. The Foundation One test do alot of good in finding clinical trials but, to me now that I know how this other place works it makes more sense to test on the tumor sample first instead to see if it works than giving it a person and make them weaker and then find out that drug was never going to work in the first place. I hope we can find someone to help so we can have the great outcome like you did, I wish you the best and many more years of good health!
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LiliTM and glenn4heath -LiliTM said:Dear Glenn4health,
Thank you so much for sharing more about the Nagourney Cancer Institute / functional profiling analysis. When I found out about it recently I was desperate to learn more and see if we can do it for my dad.
(He has stage 4 gallbladder cancer, mets on the liver and peritoneal carcinomatosis upon diagnosis and still remaining. He did first-line chemo (Gem/Cis) for 11 months, and has been on 2nd line chemo (Folfiri) for 3 months. But his liver enzymes are rising and he didn't recover his strength enough on his latest week-off to get chemo this round so they're pausing it to potentially lower dose when he recovers or I don't know what... he's still young and athletic, even when he started Folfiri he was exercising most days on his off-week. But that was impossible this last round.)
I used the words "out of the box" not because I don't find the concent of this functional analysis crucial - I do and want to get it for my dad - but because none of our doctors at the major centers were supportive of it when I asked (at Memorial Sloan Kettering or our local MSK-affiliated Miami Cancer Institute.) I would love to know which doctors at the major centers, especially MSK, would be amenable so that we could find out if we could safely get a biopsy for my dad to send to Dr. Nagourney.
I'm not sure if they just see me as a kid (I'm in my 20's) or if they are just closed to approaches they haven't adopted yet, but our oncologist was very dismissive when I asked about functional profiling analysis.
I am scared that undergoing a laparoscopic biopsy at this point would cause problems, and it's hard to get clear answers when MSK is not on board with the concept. I am also concerned that he has already tried 4 chemotherapy drugs (gem, cis, 5fu, irinotecan) so it narrows down the potential active drugs? And also we don't know from the profiling whether he will tolerate the drugs?
I read about one oncologist in NYC who sends his patients' tissue to Dr. Wiesenthal's lab - any thoughts on that one?
Have you heard anything about metronomic or low-dose chemo? I was looking into Bruckner Oncology...
I am so happy to hear your leukemia was knocked out, and I send you my very best wishes.LiliTM and glenn4heath -
I looked up Dr. Nagourney's website and based on what I am reading the tissue sample needs to be live and contain enough cancer cells for examination/testing. I am wondering how that would work with my upcoming surgery? In other words, unless there is a glaring mass or visible cancerous tissue how will they know if it is cancerous or not before doing a biopsy on what they remove? I did send for information from Nagourney's website and may give them a call. Please forgive my ignorance with all of this.
Thanks again.
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Hello Leo LadyLeoLady said:Hi KCFlash -
Hi KCFlash -
Thank you for your response. (Gee - lucky us!) I am so sorry to hear about the surgeries and misdiagnosis. So you/they don't know if it has spread? Are they doing the chemo as a precautionary measure or because it is a stage 2 tumor? On the pathology report after my gallbladder surgery it says pT2a. Everything I've read indicates the second surgery is necessary as that is the stage where the tumor has begun to penetrate the muscle wall, if I understand correctly. I am really dreading the second surgery to be honest, and as I mentioned earlier I was going to not do it however it seems that it offers the best chance of preventing the spread of this cancer. Good luck to you too. Let's be among those who survive!
I agree - Lets be among those to survive!. My pathology too was pT2a which does mean it went through the muscle layer but not the serosal layer (outside lining of the gallbladder). I agree with you regarding the second surgery so glad for you that you have it scheduled on June 12th and wish you the best of luck! - Have you had other scans and testing that are negative? If I hadn't had the mis diagnosis during my second surgery - that would be in my rear view window. However, I guess they say everything happens for the reason. I am now seaking treatment at Rochester Mayo Clinic and if after 4 cycles my scans and CA19 markers are still good. I am going for the surgery definately. I do know there is residual tumor left from my gallbladder removal in the cystic duct. I also know that Dr Nagoury (surgeon) at Mayo is concerned because they cut through the tumor. Fingers crossed for a great outcome on the Chemo!
Good Luck on your surgery and let us know how it goes. Sounds like you got this.
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Hi LeoLady,LeoLady said:Hi LiliTM -
Hi LiliTM -
Thank you so very much for all of that helpful info. (Incidentally I happened upon that other forum you mentioned and may join as you are correct that it does seem more active for GBC.)
I am very happy to hear that your dad is doing so well all things considered and hopefully things will continue that way. My gut instinct (no pun intended) does tell me to stay with the plant-based diet, and thanks for the tip on the pre-surgery proteins - I will definitely keep that in mind. The surgery is being done at Penn Medicine in Phildalphia. I did look into getting a second opinion from Memorial Sloan Kettering, however our insurance is out of network with them and since surgery seems to be the highly recommended next step anyway, I've decided to proceed with the surgery at Penn on 6/12. Then depending on the biopsy results which hopefully are clean, will decide on what to do next.
Everything I have heard and read so far indicates this tends to be an aggressive cancer and so my original 'anti-second surgery just change my diet and habits' idea has been modified. That is very interesting about the targeted therapy and I do not think the drug sensitivity testing idea is out of the box at all - in fact I am going to ask about it. I too believe in a multi-faceted approach. I have just started reading that book 'Radical Recovery' which came highly recommended - what a great book so far. I also have looked into medical marijuana for anti-tumor/cancer properties and was suggested to try RSO which I am still researching.
Thank you again.
Hi LeoLady,
Of course - if anything from our experience can be of help, I want to share. Thank you for your warm wishes for us too. Haha, yes ~ no pun intended! Gut instincts have helped my dad so far too. I heard Penn is great. I also hope your biopsy is clean!!! In that case, perhaps you won't have anything to test with Dr. Nagourney's lab... They require 1 gram of tumor tissue. Perhaps best to have their tumor collection kit on hand at the surgery just in case they find anything? I'd definitely call them to find out what's possible...
I am relieved that you are getting the surgery because yes - can't take any chances with GBC! I hope it goes perfectly. xoxo0 -
Hi LeoLady, just replied toLeoLady said:LiliTM and glenn4heath -
LiliTM and glenn4heath -
I looked up Dr. Nagourney's website and based on what I am reading the tissue sample needs to be live and contain enough cancer cells for examination/testing. I am wondering how that would work with my upcoming surgery? In other words, unless there is a glaring mass or visible cancerous tissue how will they know if it is cancerous or not before doing a biopsy on what they remove? I did send for information from Nagourney's website and may give them a call. Please forgive my ignorance with all of this.
Thanks again.
Hi LeoLady, just replied to your last post - yes, I wonder how it would work unless they find a mass of 1 gram (hopefully they don't!)... definitely call them and keep us posted! xoxo
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LiliTM -LiliTM said:Hi LeoLady,
Hi LeoLady,
Of course - if anything from our experience can be of help, I want to share. Thank you for your warm wishes for us too. Haha, yes ~ no pun intended! Gut instincts have helped my dad so far too. I heard Penn is great. I also hope your biopsy is clean!!! In that case, perhaps you won't have anything to test with Dr. Nagourney's lab... They require 1 gram of tumor tissue. Perhaps best to have their tumor collection kit on hand at the surgery just in case they find anything? I'd definitely call them to find out what's possible...
I am relieved that you are getting the surgery because yes - can't take any chances with GBC! I hope it goes perfectly. xoxoLiliTM -
Thank you - that is so helpful - and I'm thinking along the same lines as you are. I'll call there (Nagourney) and find out what is needed just in case and then ask the doctor doing the surgery that if he sees anything could he please send it. Hopefully it is as easy as it sounds lol, and I'll wake up with an empty sample kit. And thank you for the good wishes - a little positive energy goes a long way for everyone who has to deal with this.
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Hi KCFlash -KCFlash said:Hello Leo Lady
I agree - Lets be among those to survive!. My pathology too was pT2a which does mean it went through the muscle layer but not the serosal layer (outside lining of the gallbladder). I agree with you regarding the second surgery so glad for you that you have it scheduled on June 12th and wish you the best of luck! - Have you had other scans and testing that are negative? If I hadn't had the mis diagnosis during my second surgery - that would be in my rear view window. However, I guess they say everything happens for the reason. I am now seaking treatment at Rochester Mayo Clinic and if after 4 cycles my scans and CA19 markers are still good. I am going for the surgery definately. I do know there is residual tumor left from my gallbladder removal in the cystic duct. I also know that Dr Nagoury (surgeon) at Mayo is concerned because they cut through the tumor. Fingers crossed for a great outcome on the Chemo!
Good Luck on your surgery and let us know how it goes. Sounds like you got this.
Hi KCFlash -
So the residual is why you are getting chemo. Well it sounds like you are in good hands now so hopefully things will go a bit smoother for you from this point on. After the gallbladder removal I had 2 tests done. One was a bloodtest done for a CEA and a CA-19-9 both of which were fine. I also had a CT scan done of the chest, abdomen and pelvis which did not show any signs of spread (thank God). There was a comment on the report that stated there was some fluid at the gallbladder 'fossa' which says is 'most likely postoperative hemostatic agent and less likely focal collection'. I mentioned this to the oncologist at the last visit and he didn't seem concerned and said it would be removed during the second surgery. The margin of tissue at the tumor where it was cut was 2mm. Thank you so much for the positive encouragement and I will definitely post after the surgery. I am so glad we can all support each other on this forum and share info and experiences - it is so helpful and comforting. I wish you much success with your treatment.
P.S. Please excuse my current ignorance with medical terms and lingo. It's like a whole new education.
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Thank you Glenn4health, yourglenn4health said:Hi LiliTM
Thanks for your nice reply to my post. I hope your dad could get his cells functionally analyzed. It is not surprising that MSK dooctors would not be in favor of Dr. Nagourney's work or at least dismissive. Even in my case, I asked the southern california major medical center I had gone to about Dr. Nagourney. They said they knew about him. Were they ever going to tell me even after years of treatments failed and the clinical trial they put me in failed for me? Nope. Very eye opening.
In general, integrative doctors like Dr. Brian Lawenda and Dr. Keith Block love Dr. Nagourney's approach. All the oncology nurses I talk to locally love Dr. Nagourney's approach and think it's a no-brainer. To your question, I know their is a Dr. Grace in New York who works with Dr. Weisenthal and sends him patients.
Sadly, cancer is big business and since Dr. Nagourney is an oncologist and cancer researcher, he is essentially competition to oncologists. And oncology is a big business. No one wants to risk losing patients. And clinical trials while they have their place of course are still BIG dollars. And I think few oncologists want to admit they need another oncologist's help.
Why not use Dr. Nagourney as your oncologist? I've heard that he is still taking new patients and based on the patient stories on his website he seems to have a lot of patients from around the world. He is triple board certified as Hematologist/Oncologist/Internist.
Sadly, I've talked to some local oncologists who tell me they would rather try their tretament ideas before asking Dr. Nagourney to perform an assay. They say that if the patient is dying or if they run out of their own ideas, then they would consider sending their patient to Dr. Nagourney for testing. I think this is the reason that most of Dr. Nagourney's patients seem to be advanced cases. A lot of egos are involved in the medical world. Most of my family and friends are in the medical industry so I know. But you would think all doctors and medical centers are altruistic but it still is a business.
Examples:
My stepmom died of Pancreatic cancer slowly despite getting functional profiling results from Dr. Nagourney which found a nice triple drug combination for her that looked great but his report also found that her cancer cells were resistant to the two drugs her local oncologist wanted to give her. To start with, the local oncologist made up totally untrue statements about Dr Nagourney's work to try to prevent my dad and her to even go there. When I finally dragged my dad and stepmom down to Long Beach to get a functional profiling assay, their local oncologist was so incensed that he refused to even return my dad's phone calls for weeks. He then finally agreed to call a meeting to talk about it, by then she went downhill, was admitted into a hospital and she slowly passed away without getting ANY treatment. Terrible.
To this same point, my former neighbor got Stage 3 Lung Cancer (the typical NSCLC) but was still in great shape. His nephew convinced him to go to a famous big name medical center out here in southern California. They tried one standard drug but it didn't work. They then tried some genomic testing. Took 3 weeks. In the meantime, he was leaking ascites fluid which Dr. Nagourney could have tested in 7 days or less. So I gave him my copy of Dr. Nagourney's book, Outliving Cancer. My neighbor read it and was very impressed and showed the book to his oncologist at the major medical center and told him "I want this test". His oncologist told him "We do the same test here - don't go to Dr. Nagourney". Of course he was lying. So my neighbor stayed with the big brand name center. His genomic results showed nothing actionable. They eventually put him on a Phase I clinical trial. Phase 1 - yikes! He was in good shape all this time but the trial gave him a lot of blood clots and he went downhill fast and passed away. I am still upset about it. But I'm sure they made a lot of money off my neighbor joining the clinical trial and I guess his death advanced science?
As far as low doses, I know Dr. Nagourney told me that many people receive higher doses than they really need. It's more important to just get the right drug or drug combo NOT getting pounded with more and more of a drug. My case is a great example. I was getting a 2 drug combo based on functional profiling. I took the 1st drug every day for 5 days as scheduled. But, I only could take 1 1/5 doses out of 8 scheduled doses since I had severe side effects from the drug.
And guess what? It still worked! 0.02% residual leukemic cells. After 16 years and seven occurrences of leukemia.
Don't know about metronomic and I've heard of Dr. Bruckner but don't know enough to have any opinion.
Sorry for the long reply and my rambling stories. I will pray you and your dad get the right treatment.
Thank you Glenn4health, your kind reply and your good wishes for us are deeply appreciated!
I hope so too - I contacted both Dr. Nagourney and Dr. Wiesenthal and Dr. Nagourney sent me a "form reply" which he has sent others (identical to LeoLady's latest post) where he referred to my dad's Gallbladder Cancer as Cholangiocarcinoma, and mentioned mutations of interest (however, the key mutations IDH and FGFR are only for Cholangiocarcinoma, not Gallbladder Cancer. They are both biliary cancers but have some important distinctions.) It made me nervous that perhaps all they could test for my dad would be the chemotherapy drugs vs targeted therapies, especially considering my dad has already had the 2 main groups of chemos they test and there are only the taxane drugs left. But I still have a vague hope that somehow they would find the right combination or something we can't foresee... but if the biopsy will be taxing on my dad, then perhaps we can't try for the vague hope?
Dr. Wiesenthal replied to me to contact a more open-minded integrative oncologist in Boca Raton named Mark Rosenberg, who is willing to work with their lab. I am curious if anyone knows anything about him? I looked him up and he seems to try all kinds of alternative concepts.I'm so sorry the major medical center you had been going to in southern Cali had known about Dr. Nagourney the whole time and weren't going to tell you. Just like you said - the integrative doctors might be the way to go. I wish travel wasn't an issue, but I don't think my dad can handle traveling right now to California, Chicago for Dr. Block, or to Dr. Lawenda. And we'd need someone local to follow their guidelines. So hopefully this closer Dr. Rosenberg has a similar approach.
It's so sad that the system is messed up due to the business aspect and also the ego issue of doctors not wanting to collaborate to help us. It's so hard to find a doctor willing to truly give it their all to try and help you or your loved one. I am scared when I read generally glowing reviews and then someone saying that they had a terrible experience, that the doctor is just using vulnerable patients for money, research, that they pushed their loved one too far, etc.
I'm so sorry about your stepmom. That's so heartbreaking.
And your neighbor's case terrifies me too - phase 1 trials don't sound promising at all and when I asked our local oncologist what might be next after folfiri, he said "Maybe a Phase 1 trial." No way!!! Maybe some of the integrative alternatives might be better than a phase 1 trial... I'm glad to hear Dr. Nagourney said that about dosing, maybe low dose will help us...
So incredible that you are at .02% residual, after 16 years and 7 occurances! How do you feel about life these days? I feel like if we came back from this brink, I don't even know what I would be like... filled with the highest joy possible. And trying to help everyone else - just like you came on here to help us. Thank you.
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Hi KC Flash -
Hi KC Flash -
This is my first visit back here on the site since the surgery, which did go well - thank you for asking. And yes I am still recovering but slowly and surely getting stronger each day. I have a follow up visit on the 11th, however already have obtained the pathology report which indicates no further malignancy - THANK GOD!
According to the current NCCN guidelines that would mean observation or chemo or clinical trials with imaging every 6 months for 2 years. Although I will hear what both the surgeon and oncologist have to say, I am quite certain I will just go the observation route. I feel very fortunate and grateful right now. For me the biggest challenge is what caused this and how do I prevent it from coming back? No doubt everyone in this situation wonders that. It's like if we knew for sure what the cause was it would seem so much easier. Still incorporating dietary and some lifestyle changes which I intuit will be helpful but there are really no guarantees so I feel that worrying about how to keep it away is counterproductive. I feel that the best thing I can do is believe the cancer is gone and move on, and not obsess on how to keep it from coming back. This may not be everyone's preference but for me it makes sense.
Anyway, I will update on my progress. How are you by the way?
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Diagnosed June 1 Stage 2
Hello All Gall Bladder Cancer Folks,
I am just right behind you in the diagnosis of GBC. What a shock when I went in for my post op appointment from gallbladder removal back in May, feeling great and focused on going back to go back to work!, when I received the news that I have Stage 2B GBC. Who knew GBC was even a thing?!? I'm mid 50's so I felt young for this cancer. So glad that it was found as a result of Gb removal because of stones.
I'm two weeks out from the Liver Resection and Lympadectomy (surgery was June 13)...currently labs are clean and showing no lymphnode or other involvement,I'm feeling great and we, me and my husband, are now looking to connect with the stories of others. Sounds like we are in about the same place. In conversations with the Dr.'s we were given the same options. There was lots of discussion about info from the bilcap study from the UK. In the end, me and my husband have opted for the chemo. The chemo is only one drug and will be pills not infusion. It has been well tolerated by most taking it and doesn't seem harsh. This was our choice instead of observation. I would love to hear what you choose as well as from anyone else in a similar circumstances. Our "why" for chemo are that I'm young...and want to be sure we've done all that we can from our end...it is an active choice. We too want to beat this... we have a lot of things to do in life!
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Hi gbcinwa -gbcinwa said:Diagnosed June 1 Stage 2
Hello All Gall Bladder Cancer Folks,
I am just right behind you in the diagnosis of GBC. What a shock when I went in for my post op appointment from gallbladder removal back in May, feeling great and focused on going back to go back to work!, when I received the news that I have Stage 2B GBC. Who knew GBC was even a thing?!? I'm mid 50's so I felt young for this cancer. So glad that it was found as a result of Gb removal because of stones.
I'm two weeks out from the Liver Resection and Lympadectomy (surgery was June 13)...currently labs are clean and showing no lymphnode or other involvement,I'm feeling great and we, me and my husband, are now looking to connect with the stories of others. Sounds like we are in about the same place. In conversations with the Dr.'s we were given the same options. There was lots of discussion about info from the bilcap study from the UK. In the end, me and my husband have opted for the chemo. The chemo is only one drug and will be pills not infusion. It has been well tolerated by most taking it and doesn't seem harsh. This was our choice instead of observation. I would love to hear what you choose as well as from anyone else in a similar circumstances. Our "why" for chemo are that I'm young...and want to be sure we've done all that we can from our end...it is an active choice. We too want to beat this... we have a lot of things to do in life!
Hi gbcinwa -
Gosh I am so sorry to hear about your diagnosis and yes it does sound like we are on similar paths. I can certainly understand your reasoning in going the route of the chemo and I am open to hearing what my doctors have to say about it as far as options, types, etc. I say now I'd prefer the observation but that could change. I am also intrigued by the bilcap study you mention and will look it up - I've never heard of it. Again this is all a huge learning experience.
I am curious about how you are feeling after the surgery? Mine was June 12th and I still have quite a bit of discomfort but am managing. I worked from home last week and went into work today for a partial day. I understand it is 3-6 weeks after surgery for resuming normal activities. Also do you mind me asking where you are and where you had your surgery? You can message me if you want and/or if you are not comfortable in sharing that I totally understand.
I agree with knowing you've done everything possible as I feel that way too.
All the best to you with your recovery.
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