Hannaha
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Thanks Hesw that’s very kind. I’m so glad you’ve got good positive people around you and are able to eat well. Wishing you the very very best of luck!
Hi Hesw,
I am happy to hear that you’re planning to participate in a clinical trial, and I hope you will respond well to treatment! As Mary mentioned, never hesitate to ask your doctors any questions you might have. I am not sure what kind of drugs or treatments you will be receiving in your trial, but consider asking things like: if you are taking a drug or combination regimen, ask whether these drugs are already used for patients with other kinds of illnesses and what kinds of symptoms or side effects they tend to experience; if it is a novel drug (never used before in humans), ask about what kinds of side effects they expect they might see or if the drug has already gone through earlier trial phases, what other patients on the trial have experienced; ask the doctors what their plan is for managing any adverse effects from treatment; make sure your doctors are aware of your concerns about maintaining your other organs’ health so they can directly respond to them; if the trial relates to surgery or radiation or some other non-drug treatment, again ask your doctors to explain what kinds of risks are involved and how they plan to minimize those risks.
You can also help support your body in other ways as you go through the treatment, by exercising to the extent that you feel comfortable (regular walking is a great option if you’re able), aiming at a varied diet rich in green vegetables, fruits and nuts, and keeping your mind busy with non-treatment-related things–books or audio books, films and lectures, work-related stuff if you’re employed, voluntary activities to the extent that it feels safe for your health, family and friends, etc. All this stuff plays an important supportive role!
Hi there. So sorry to hear about your diagnosis and the rocky treatment journey you’ve experienced so far, but a warm welcome to our community. Hopefully you’ll find support and information here. As someone who has lurked quite a lot on this board, I highly recommend using the search function to hunt back through old postings and see what other people’s experiences might have been (this would perhaps be useful for your question about the use of cannabis oil–try using a variety of different keywords and see what comes up).
Others may have other thoughts to contribute, but for now I would ask whether your doctors have performed genetic testing yet on your tumor. You may learn through this test that there are other treatments available that target your tumor’s specific characteristics.
As far as clinical trials go, I would encourage you to explore the possibility! Before my mother was diagnosed, I imagined the clinical trials were a sort of “last refuge/hail mary” type resort for people without any other options. That is certainly not the case. Clinical trials are carefully structured to ensure that enrolled patients get the highest quality of care. In many cases, they may even get more attention than they otherwise would. Considering that there are a number of new kinds of treatments currently in the pipes, clinical trials are an excellent way to gain access to drugs that might otherwise take years to arrive on the market. Even when an enrolled patient is randomly assigned to the “control” group, most clinical trials still ensure that the patient receives an appropriate “standard of care” based on what that patient would otherwise expect to receive outside of the trial. My mom was one of those people enrolled in the control wing of a trial nearly 3 years ago, and we (and she!) are all very glad that she had the opportunity because it opened up new treatment possibilities for her.
I am not sure where you are receiving treatment, but it is likely that you’ll want to reach out to one of the major cancer centers (there is a a helpful list available elsewhere on this site) for a second opinion from doctors who are familiar with this rare cancer. Most community hospitals and even many larger medical centers serving a wider area are not up to this task.
I wish you the very best!
HannahHi Anna,
Thanks for sharing all that. We did not meet Dr. Chen, so I’m afraid I have no thoughts there. I do believe that the oncology team talk to one another at OHSU, and so hopefully you’re getting something of a team effort there.
It’s great that you’re going to get chemo infusions closer to home, especially as they can be really exhausting. I strongly encourage you though to make sure that her post-CT appointment always happens at the main center in Portland with Dr. Chen or another of the oncology physicians there. If they try to tell you otherwise, I would raise a stink. It’s really important that her scan results be examined by someone who knows cholangiocarcinoma and is up to date on the most recent literature. With all due respect to the hard working folks in the satellite clinics, they are mostly not experts on rare cancers.
As for mixed results of her scan last month, try hard not to worry too much. Especially early on in treatment it can be hard to interpret small changes as the chemotherapy starts doing its thing. And “overall stable” is good! It is my observation that what is written in the scan interpretation that they make available on mychart vs what the doctor says can often be divergent. I always trust the doctor’s reading over the generic scan report, which is written by someone who may not know your mom’s case history. By way of example: my mom had her gallbladder removed as part of a major resection in early 2019. We occasionally get scan interpretations that note the presence of a “healthy gallbladder.”
Given that your mom has needed the neulasta to keep her bloodwork stable, I can imagine that her doctors might be hesitant to add a third drug to the mix, but if her next CT scan brings “mixed” news, consider asking whether they would be willing to add Abraxane (nab-paclitaxel) to the cocktail. It is a third chemotherapy agent that has been shown to improve responses over the standard gem/cis treatment, but it comes with a number of potential side effects that your family and your doctor would need to weigh. warning: link includes survival data https://pubmed.ncbi.nlm.nih.gov/30998813/
Ok. Apologies for the multipart reply. For some reason, the CCF message board wouldn’t let me post the entire message at once this morning, and was also super balky about some weblinks I included (mostly to various places on the CCF website itself 🧐). Hopefully I’ve included all the relevant info anyhow.
Second opinions:
Since you’re up in the Portland area, you may want to consider looking for second opinions in Seattle. The CCF website has a great tool on its site (look for the specialist map) and is a good place to start. Some cancer centers have easily accessible portals for starting the process of requesting a second opinon. Run a google search for UCSF and “second opinion” for their portal. Although my mom was getting her primary care at OHSU for a while after her surgery, she has since for insurance-related reasons had to return to the Providence Cancer Center in Portland. While I love the folks at Providence (and their chemo ward is top notch), I do not get the impression that they see large numbers of cholangiocarcinoma patients. For this reason, we are grateful to be able to lean on Dr. Lopez at OHSU and Dr. Kelley at UCSF whenever there is a juncture in my mom’s treatment, even if it is just to be reassured that we are on the right track.
Supporting your mom’s health while she’s on chemo:
Unfortunately, a lot of patients struggle with weight loss, whether from the cancer itself or from the chemotherapy. The chemo can make it hard to get all the nutrition your mom needs, because of the nausea and other side effects. If your mom is struggling with nausea, make sure your doctors know that. My mom had good luck with zofran (the swallowable pill not the sub-lingual tab), but there are other anti-nausea meds as well. If your mom is having a hard time getting any food into her, there are a number of nutritional shakes and such, some of which have been discussed in past conversations on this forum. When my mom was first diagnosed and then when she went on the chemo, she had a hard time eating enough. We found it useful for her to eat smaller but more frequent meals. My mom also really appreciated soft, mild foods like cottage cheese, yogurt, avocado, etc., which were good ways to get some fat into her diet when a lot of other fatty foods were hard for her to digest.
If your mom is able to eat relatively normally, you may want to think about whether she is interested in adjusting her diet in other ways. As the addition of neulasta to your mom’s treatment plan demonstrates, chemo can really wipe out your body’s ability to make things like neutrophils and red and white blood cells. The neulasta is one important tool to combat this, but your mom can also work on incorporating blood-building foods into her diet. Her oncologist at Providence, Dr. Rui Li, was adamant that my mom start eating red meat. This was tough for my mom, who has always been nigh-unto vegetarian, but she started eating lean grassfed red meat 3-4 times a week, and we think it helped during her chemotherapy. Dark leafy greens are also important for blood building.
It would be understandable if your mom didn’t feel up to doing much exercise right now, but getting regular light to moderate exercise (intense exercise may not be a good idea right now!), even just walking, is a great way to support chemotherapy treatment. Even if your mom doesn’t feel up to much, it can be really helpful just to get up and take a walk around the block every day, or even just around the back yard. My mom started doing a lot of walking, which was something she felt capable of even when the chemo had her feeling really low. She wore a big ol’ sun hat and dark glasses because she became very photo-sensitive. Regular light exercise can be important during treatment, both because it can in some cases make the chemotherapy more effective, and because it helps to combat anxiety and depression, which are of course big problems.
Beyond supporting your mom’s health during chemotherapy itself, diet changes may also play a role in the fight against cancer more broadly. I want to be careful here because of course a new diet is not going to be the magic bullet, but a fascinating presentation at the 2020 Cholangiocarcinoma Foundation conference by Dr. William Li showed how the anti-cancer elements available in many foods can be a meaningful part of treatment. My mom takes this stuff really seriously, read Dr. Li’s whole book, and now she even grows her own broccoli sprouts! Diet is one of the very few things that patients and their families can have a bit of control over in this journey, which I think is why it can feel so comforting to embrace that aspect of things. Be careful though if you go internet sleuthing because there is a whole world of unsupported and even dangerous advice out there regarding “miracle diet cures.” And be sure to mention to your doctor if you decide to take any supplements.
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Let me see if I can post it in sections.
Regarding those mutations:
Good news! It seems like your mom probably has a couple of actionable mutations. These will give you some options down the road if and when you need to think about other treatments (patients with IDH1 mutations can take Ivosidenib, while it looks like there are treatments available for BRAF patients as well, although I am less familiar with this mutation). For now though, your doctor is correct that gem/cis is the appropriate first-line treatment. This chemo is really powerful and for many patients it will effectively stop the cancer’s growth or even produce significant shrinkage. Are you seeing Dr. Lopez at OHSU? My mom really likes him and he was her primary oncologist for a period of time (insurance-related stuff means she’s had to return to Providence as her main treatment home since then). In the meantime, your mom’s genetic mutations may already be helping her out, even as she gets her chemo infusions. There are studies out there showing that IDH1 mutant cancer cells tend to be more susceptible to cisplatin-type therapies than so-called IDH1-wild type cancer cells (https://faseb.onlinelibrary.wiley.com/doi/full/10.1096/fj.201800547R). Every patient is different and no lab-based study is ever going to be a crystal ball for your mom’s individual response, but hopefully your mom will respond well to the gem/cis. When is her next CT scan scheduled for?
Hi Anna,
I’m so sorry to hear about your mom’s diagnosis. As a fellow Oregonian whose mother was also diagnosed with ICC, I join Billy/vtkb in urging you to reach out for a second and even a third opinion. My mom was originally diagnosed at her local hospital in our small town, and the oncologist there obviously had no idea what to tell her. We were left feeling like her case was completely hopeless. I am so glad that we immediately sought out more specialized care in Portland, where doctors were more familiar with her cancer and with recent progress in its treatment. My mom has had great care from doctors at both OHSU and at Providence Cancer Center. I would recommend either of these centers to your mom. I’d be happy to chat more about our family’s experiences at both places by private message if you have questions.
We have also at times received second opinions from Dr. Katie Kelley at UCSF, who is one of the country’s foremost experts in this awful cancer. It has been a godsend to be able to rely on our occasional zoom meetings with her to feel confident that the treatments our doctors are advocating up in Portland also make sense to her. This is an unusual cancer, and so I really think the more opinions you can collect, the better! Of course, depending on where you live in Oregon, it may be just as easy to get to San Francisco as it is to reach Portland, in which case I’d say UCSF or Stanford would both be great bets. Any of these centers would be able to help direct you towards promising clinical trials available in the region.I am glad to hear that your mom has started the gem/cis treatment. It is the standard of care for a reason, and many patients have good responses to it. You may also want to ask your mom’s doctors whether it would be a good idea to add abraxane to her chemotherapy cocktail. The three-part cocktail has shown promise in a recent clinical trial. Chemotherapy can be really challenging, and there are lots of helpful posts on this message board discussing how to deal with its many side effects. From our own experience, it is important to adjust dosages for the chemo and the dexomethazone to best suit your mom so that she is well enough to continue treatment. Fatigue and nausea can be real downers, but there are lots of options for helping to control the nausea, and over time your mom may be able to find a rhythm with the fatigue to allow her to enjoy her good days out and about, and relax with a book or whatever on the bad days.
As Billy/vtkb says, targeted therapy based on your mom’s cancer’s genetic mutations may also offer some promising leads. There are a number of new treatments that are being developed (a couple are widely available by prescription, many are still in clinical trials). These are adding all sorts of new possibilities for cholangio patients that didn’t exist a few years ago. There are other options as well, including radiation and a hepatic pump for more localized delivery of anti-cancer therapies.
You mentioned that your mom is taking some naturopathic treatments alongside her chemo. This can be a great thing, but do make sure your doctors know she is also taking naturopathic treatments, so that they can be sure that they don’t counteract the conventional care she is getting. My mom swears by a handful of naturopathic aids she received while getting her gem/cis, and will tell you that they helped her to be able to do as many cycles of it as she did (she has done 10, but is currently on a different treatment). She consulted with Dr. Tina Kaczor, a naturopathic oncologist, who encouraged her to consume a handful of different kinds of teas (cornsilk and milkweed are two that I remember off the top of my head) according to a schedule that complemented her chemotherapy cycle. These were aimed at supporting her liver and kidney health so that my mom could better withstand the chemotherapy.
Best wishes and please ask any other questions as they come to you.
Hannah
I believe your decision to proceed with the trial now and use the time to get genetic testing done is a good one, especially in light of how urgently the clock seems to tick as you wait to start treatment. I have my fingers crossed that the combination will result in a strong and durable response for your wife.
Just a quick update here to say that my mom has now been on Ivosidenib/Tibsovo since the end of May last year, and her scans have been stable in that time. Her side effects have been pretty minor: a somewhat more reactive gut than she used to have, and a bit of dizziness (I think this was more prominent early on in the treatment) in the hours immediately after taking the pill.
In our occasional check-ins with Dr. Kelley at UCSF, she says that ialthough Tibsovo doesn’t have a very impressive response rate on average, it does have what she calls a “long tail” (e.g. a small percentage of patients for whom the drug’s effects are durable over a long period). So if you are a patient with an IDH1 mutation or someone you love is, the drug is certainly worth trying.
It sounds as if there is at least one other promising IDH1-targeted drug currently going through clinical trials that they hope will prove more effective for a larger number of patients. Fingers crossed.
Dear Gli50,
Let me just say that both vtkb and bglass have made great suggestions, and it is great to know from moowal that there is an active community of patients and caregivers in Australia! Knowing if she has actionable genetic mutations is a really useful thing (my mother, who has ICC, turned out to have the IDH1 mutation, and is currently taking a targeted therapy for it). Knowing her genetic mutations will also help you to keep an eye out for new therapies and clinical trials down the road. This is where a lot of exciting new research is going on right now. bglass’s reference to the addition of Abraxane is also great. The 3-part cocktail is a more aggressive treatment and I have read that for some people the side effects can be rough, but it has shown real promise in knocking back the disease. And unlike the third ingredient in the clinical trial you’re presently looking at, it appears to work across the spectrum, regardless of what a patient’s genetic profile looks like.
Your wife’s doctors’ suggestion of the clinical trial with pembrolizumab (keytruda) + gem/cis is also potentially a good option. For a very small percentage of patients whose cancers have a particular genetic profile, keytruda has proven spectacularly effective (for the vast majority of patients, it seems to have little effect). It seems like the trial’s goal is probably to see whether adding keytruda to an established chemo treatment will help widen its range of potential effectiveness. But even if the keytruda turns out not to play much of a role (or if your wife winds up in the placebo wing), your wife will still be getting a proven treatment while under the careful supervision of clinical trial coordinators who will likely be keeping a closer eye on her than if she were receiving that treatment outside of a trial setting. My mom was first diagnosed in August of 2018 with unresectable intrahepatic cc, and it was while she was in the control wing of a clinical trial receiving gem/cis that she experienced substantial shrinkage of her tumor, enough to continue on to a resection in February of ’19. She had a recurrence a year later, but we are still very happy about the decision to participate in that trial. There may also be other trials worth looking at as well.
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Thanks for the update Katherine! I’m glad to hear that you’re doing well and managing new road bumps as you encounter them. It seems like your experience, like my mom’s, has been a story of recurrences outside the liver. Your story gives me hope. Fingers crossed that you’ll be able to find the right answers to your questions about trial eligibility.
Hi there- I’m not sure about their anti-cancer effects, but my mom drank corn silk tea and took milk thistle supplements while on Gem-Cis. The corn silk is apparently beneficial for the kidneys, which will be doing a lot of work during the chemotherapy, and the milkthistle supplements are supposed to support healthy liver function. Corn silk is shown in some studies to induce cancer cell death under laboratory conditions, although I wouldn’t vouch for their effectiveness outside the lab, and certainly not at the levels one consumes it in tea. Although these things don’t (likely) do much work against the cancer itself, they are I think useful in supporting one’s physical health in going through chemotherapy. My mom credits these things with having made the chemotherapy bearable during her 10 cycles.
I’m afraid we don’t have any experience with Essica, however.
-Hannah
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