Hannaha
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All the best to your sister and to your family, Leonie! I hope this message board and the Cholangiocarcinoma Foundation is as much help to her as it has been to my mom.
And thanks so much for the timely reminder, Mary. Targeted treatment is indeed so important. Also, knowledge about what genetic mutations a patient carries is helpful even beyond the specific therapies designed to target a handful of mutations. Increasingly, knowing a patient’s tumor’s genetic profile may help the treatment team select appropriate chemotherapy combinations and will help make important decisions about radiation, surgery, etc.
I would like to reiterate what bglass and missingmom have said about checking out targeted therapy. my mom has been taking ivosidenib for 2 years and it has been remarkably effective in controlling several positive lymph nodes. She has the IDH1 mutation. Perhaps a doctor would be willing to combine radiation with a targeted therapy. Worth asking about.
Thanks to both of you, Gavin and Mary. You are both such a great help to so many people on this forum. Happy New Year to you both, and here’s to health and to new and better treatments in 2022 and beyond!
Thank you Randi for sharing your story! I’ve read through your past posts and your experience is quite an inspiration.
-Hannah
Hi Kellierosie,
I’m so sorry for all of the tragedies that your family has experienced.
I am not sure that I can provide you with the specific reassurance that you want, but perhaps I can provide another path for hope. My mom was diagnosed more than three years ago with an approx. 10cm tumor on her liver. Despite initial optimism that she could be operated upon, they found evidence of satellite metastasis in nearby lymph nodes and cancelled her surgery. She went on to do 6 cycles of gem-cis chemo which she responded very well to, allowing her to go through a second major surgery early the following year with the hope that it might not return. The surgery was a huge success, although the cancer unfortunately did eventually return. But she has been able to maintain stability now for 18 months on a targeted therapy, Tibsovo, that works on some patients with the IDH1 mutation. There are a growing number of promising treatments for CCA, and there are more with each passing year. With any luck, your dad will be able to benefit from these treatments.
I would make sure that the following things happen:
1) It is crucial that your dad be seen by a specialist in CCA. Because it is a rare cancer, even many regional cancer centers may not have the needed expertise to be able to guide your dad’s treatment. There is a great list available on this website that will direct you to the nearest specialists. Reach out to them for a second opinion ASAP. Trust me. My mom’s local hospital basically sent her home and told her that her case was hopeless. It was not hopeless and neither is your dad’s diagnosis.
2) Get your dad’s cancer tested to see what kinds of genetic mutations it may have. This will, hopefully, open up new treatment options for him.
3) Don’t be afraid of chemotherapy. It is important to know that it is not an either/or choice: surgery or chemo. There are a number of studies now that show that many patients respond well to chemotherapy and are able to “convert” after a period of time to surgery. Again, it’s important that your dad have specialists looking over his case who can help to maximize the benefits of chemo with this possibility in mind. Also, if he does have surgery first, his doctors should definitely be talking to your family about doing an adjuvant chemotherapy after the surgery. CCA is, as you’re no doubt aware, an aggressive cancer and it is not usually enough to just have the surgery. There usually needs to be a “clean up” phase afterwards.
4) Your dad may be feeling pretty hopeless right now. I remember my mom went through a really dark period after her diagnosis. As his treatment progresses, be it through surgery first or chemotherapy first, it is important that he gets up and moves around as much as he feels able. Take him on walks or join him for other forms of exercise if you can. Getting the blood moving and keeping him as physically fit as possible will be good for his mental state just as it will be important for getting him through what might be a tough treatment process.
Please let us know how things are going and come back to us with any questions that arise-
Hannah
Hi Jtallen,
I’m so sorry for your diagnosis. I would second what Mary has already said.
If you’re interested, you might want to look at some of my earlier posts regarding my mom (now 65), who was diagnosed with (depending on who was talking about it) either IIIb or stage 4 ICC back in Aug. of 2018. Like yours, her tumor also is IDH1 mutant. She went through an open-and-shut surgery in Sept. ’18 in which they determined she had multiple positive lymph nodes, went onto the gem-cis, did 6 cycles, saw significant reduction in the size of her tumor from (thank god i’m forgetting the fractional measurements now) but 10ish cm down to 5ish cm. She had a second successful surgery in Feb of ’19 with negative margins, did another 4 rounds of gem-cis, and was for a while free of the damned thing until it turned up in her lymph nodes again in Feb. ’20. After back-and-forthing and delays because of covid, she elected to go on Tibsovo. She has been more or less stable on Tibsovo since May of ’20, with excellent quality of life. I’m really glad to hear that you’re going to do a consult at Dana Farber. I encourage you to keep an open line of communication with more than one specialist, if you can, so that you can pose treatment questions to them if and when it is necessary. One of the things that has been absolutely crucial in my mom’s journey has been our ongoing conversations with specialists at UCSF, OHSU, and her “home” treatment hospital of Providence, in Portland.
I hope that the gem-cis really knocks your tumor back. Don’t give up on the possibility that surgery may become possible in the future. While you’re talking with the specialist at Dana Farber, ask them about whether they think you would be a good candidate for adding Abraxane to the gem-cis mix. It’s been shown in stage III trials to offer in many cases a more potent effect than the two-part therapy.
Thank you for your service-
Hannah
Hi Debbie, I’m so sorry to hear about your mom’s diagnosis. Your apparent family predisposition for this disease is, as Mary said on another thread, unusual. I wonder if there are scientists out there looking at whether there are sometimes genetic factors that can play into things. I’ve said elsewhere on this board that there are possible signs to that direction in our family, but there has only been one positive diagnosis.
Regarding your mom’s decision not to treat: It is challenging but also valuable to respect a patient’s choice on this front. I’m afraid it is hard to know what kinds of symptoms your mother will face as her disease progresses, since the disease affects patients in a variety of different ways. You might get a better sense of what to expect by digging around in some of the older posts on this forum. There is a discussion section dedicated to supportive, palliative, and hospice care that you might want to look through, and there are similar discussions that have cropped up elsewhere on the board.
In order to help make the process easier, I recommend that you open up conversations soon with palliative medicine specialists who can help guide your mother’s journey and address symptoms as they crop up. You may also want to speak with a local hospice center now in order to line up a caregiving and support team that will “fit” well with your family’s approach, when the time comes. This is true whether your mother wishes to stay at home or in a care facility. This is one of the hardest decisions, but it’s worth noting that supportive treatment, even though not specifically aimed at extending one’s life, can sometimes end up doing so simply because it improves the quality of a patient’s life. When patients are not suffering from pain and discomfort, it is easier for them to do things like stay active (within their capacity) and continue to enjoy a healthy diet for a longer period.
Sending you and your family the very best,
Hannah
Open-and-close surgery just meant that right after she was first diagnosed, the first doctor she consulted with thought he might be able to do a surgery to remove the tumor. On doing a laparoscopic exploration of her abdomen, he encountered more extensive cancer than he had anticipated (including several positive nodes in the region of the liver). So instead of progressing with the resection, he opted to just close her back up again (hence open-and-close). It was after this first effort at a surgery that she started her chemotherapy regimen and had a good response that allowed her a successful surgery some months later.
For whatever it is worth (this is aimed generally at the board moderators, in hopes they might be able to do something), the problem in posting seems to crop up when I add links to my posts, i.e., providing a link for some IDH1-based clinical trials or linking evidence to support use of astragalus.
Hi Helen,
Very frustratingly, I wrote you a long reply that I believe has just disappeared into the ether. Here’s the gist of it:
Great news about the IDH1 mutation. There are other clinical trials out there testing new prospective IDH1-based treatments, and hopefully your daughter will also prove responsive to Tibsovo. I’m interested to hear that she’s going to take it at the same time as her chemo treatment.
You asked about milk thistle and astragalus. The milk thistle should be taken at opposite ends of the week from the chemotherapy because the infusion needs time to do its toxic job, which is disrupting cell growth. The milk thistle is supposed to aid the liver in cleanup afterwards, and help support the liver as it tries to purge itself of toxins and prepare it for the next onslaught the following week. You don’t want to take it at the same time as the infusion because the two are working at cross purposes. The astragalus, as best I remember, has a beneficial effect on the immune system and can help address the buildup of toxicity associated with chemotherapy cycles. I do strongly recommend that if you investigate adding supplements to your treatment, you do so under the guidance of someone who specializes in naturopathic oncology. You want to make sure you aren’t unintentionally undermining the treatment the oncologists are providing.
My last comment relates to your daughter’s vegan diet. I myself am vegetarian and have been most of my life, so I hesitate to comment on anyone else’s food choices… That having been said, my mom’s primary oncologist was absolutely adamant that my mom incorporate red meat into her diet to support the body as it worked to rebuild blood cells each week. My mom struggled in particular with her neutrophil count, and eventually towards the end of her cycles got a neupogen patch to help, but the patch came with its own semi-nasty side effects (bone pain like with the flu). Unfortunately, one of the easiest, nutrient-dense and bio-available forms of protein and other nutrients that one can eat to support your body in restoring its blood cells is meat. My mom opted for small doses of lean, grass-fed beef a couple of times a week, as much as she was able to stomach. Your daughter may not be willing to go that far, but I would certainly encourage her to think hard about how she can best support her system in this respect, especially considering that she is already having a hard time keeping her white blood cell count up.
To the extent that your daughter feels physically able, I would also encourage her to regularly get up and walk around. Moderate physical movement is also useful in supporting the body as it builds new blood components, and movement will also encourage circulation, allowing your body to do its cleanup work. It’s important to also keep thinking about maintaining phsyical strength, because chemo is really hard on a body. Regular walks are a good way to do this. There are also solid studies out there demonstrating that regular exercise is beneficial for cancer patients’ emotional outlook, which as we all know can be a real struggle and is an integral part of the whole picture.
I hope this helps. I’m sorry my first message got lost. Hopefully I’ve not left anything out this time.Hi there. I’m so sorry to hear that you or someone close to you has received this diagnosis. It’s horrifying.
Unfortunately, different hospitals tend to classify ICC in ways that are not always easily cross-comparable, in spite of the best effort of US and international bodies to try to institute a single staging system. That having been said, my mother was at one point staged as inoperable, stage IV “A” (meaning she had local but not distant metastases), and told she was not eligible for surgery. She was first diagnosed 3 years ago and given a very grim prognosis. She is very much alive and well today (she jogs more than I do, and has been on several camping trips this summer). At her last CT scan, she had been “stable” for more than a year, with just a couple of lymph nodes that we’re keeping an eye on and no other sign of cancer. She has, in the past 3 years, undergone 10 cycles of gem-cis, 2 surgeries (1 open-and-close, 1 that removed a large chunk of her liver and gallbladder), and more than a year of targeted therapy. I consider her a survivor. She is not cancer free (and she unfortunately probably never will be), but she has been lucky enough to be able to knock the beast back, and I have my fingers firmly crossed that we will continue to knock it back. When we got her diagnosis, we had no reason to hope that we’d be here today.
My recommendations: 1) make sure you get a second opinion from at least one doctor who specializes in CC and is based at a major cancer center; 2) get a genetic test done to see what kinds of actionable mutations your or your loved one’s cancer might have (there are details here on this site); 3) move forward with the chemotherapy treatment that the doctors offer, assuming that is the first treatment offered. The gem-cis combo is what got my mom from “inoperable” to “operable.” Even with distant mets, doctors sometimes decide it is worthwhile to attempt a liver resection after a positive response to the chemo.
Dear Nick,
Please do keep us in the loop. I hope that the BRCA link bears some fruit for you, and that there are other options as well.
This board has been quieter than it once was. I think a lot of discussion has moved to FB groups and similar. There is a lot to be gleaned in those communities as well, although I find them a little stressful as many of the posters are working their way through the first shock of diagnosis. The CCF as a whole (and the discussion board, by extension) feels to me more like a long-term resource for support. Even if the board seems quiet, there are, I think, a fair number of people who lurk, and it has been really helpful for me to learn about how people’s treatment processes have played out over time. Please do drop on by here with questions or just to update us.
Hannah
Hi Nick-
So sorry to “meet” you here. Reading your family’s story reminds me so much of our family’s story. If you look through my old posts you can get the detailed version, but the short one is: my mom (who like your dad is otherwise in great health) was diagnosed in Aug. of ’18. She responded brilliantly to gem/cis, had resection in Feb of ’19, more chemo for mop-up, and after a year of living “cancer free” there were new spots in her ct-scan in regional lymph nodes. Anyway, the good news is that here we are and it’s July ’21, and she’s out living life, going jogging most days, healthy and happy. We of course live in fear of her regular CT scans, but for the present she’s had great success with Tibsovo/Ivosidenib, which is a targeted therapy for patients with IDH1 mutations, and her cancer has remained stable. I know it is horrible to have this cancer return. We also wanted desperately to free ourselves from this cancer. But we are really grateful to find that, for now, we are able to find ways to live with this beast. I hope your dad is lucky in finding an effective treatment this time around.
You mention that you’re undergoing genetic testing. I am hopeful that they will uncover an actionable mutation there. I know there have been some studies re: BRCA2 and cholangio, although I don’t remember the details. It would certainly be a good idea to read up on it (don’t necessarily trust that your doctors will know about it… you are going to have to be your own expert here). Please let us know what you learn after the testing results return.
What you say about family heredity is interesting. In our family, my great grandfather was known to have died of “pancreatic cancer” sometime mid-century. I wonder whether it is what they claimed it was, since until recently bile duct cancer was usually misdiagnosed or given a vague “cancer of the upper abdomen” type id. The pancreas being adjacent to the liver, it makes me suspicious. My grandmother (daughter of the great-grandfather just mentioned), who lived to the grand old age of 94, was diagnosed a year or two before her death with a “thickening” or perhaps mass in the common bile duct. This was never investigated further because of her age and her death did not appear to be bile-duct related, but it makes me wonder if our family has a predisposition.
Hannah
Thanks so much for sharing your story, Neale. I also cried on reading it. What a breath of fresh air and hope, and well done on staying active through a truly grueling chemotherapy regimen. I hope your scans continue to stay NED. Embrace your freedom! And keep getting regular scans so if it returns, you can kick it hard before it finds a foothold. My mom also had an inoperable diagnosis in summer of ’18 and a remarkably strong response to her chemo treatment (albeit not as complete as yours!). She has had to keep fighting this dang thing but she remains in good health nearly three years later. Like you, she really clung to her regular walks while on the chemo. You’ll find my semi-regular updates on her treatment here on this discussion board.
Hannah
