Hello from Oregon
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Hi Anna,
I want to join Board colleagues in warmly welcoming you to our community. There is a lot of good information and advice that can be tapped here.
I wanted to second Hannah’s point that “overall stable” is a good result. I hope your mom enjoys a good long run of stable results. If the cancer begins to progress, typically doctors will then switch treatments to stabilize the cancer again. So it is good that in your mom’s case, some targetable mutations have been identified, which may become the Plan B should a new plan be needed in the future. Usually doctors will keep going on one treatment if it is controlling the cancer, but will switch as soon as they see signs it is losing effectiveness.
I hope your mom continues to feel well. Please stay in touch and send any questions or concerns our way.
Regards, Mary
Hi 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/
Hi Hannah,
Thank you so much for taking the time to provide all this awesome info!!
Mom’s oncologist at OHSU is Dr. Emerson Chen, he works on the same team as Dr. Lopez, although I have always wondered if working directly with Dr. Lopez would be different.
Starting next week, mom will be receiving her chemo at an OHSU center closer to home, about 10 min away. I’m eager to see how the new doctor will help mom.
Mom was not due for a CT scan yet but she got one earlier this month for restaging reasons and it showed that her lymph nodes had decreased in size (about 1 cm each) but the tumor in her liver was growing a little on a different side now. He said he would consider her condition “overall stable.”
I have mixed feelings about these recent news and worry about the new mass that’s growing. He stated it as it was the same tumor growing on a different side but the little I understood on the my chart results sounded like another tumor was growing in her liver. However, I accept that he’s the doctor and I am not.
Anyways, thank you for all the diet and treatment suggestions. I’m sorry that we met through this situation but I’m so thankful that I found you and this community! It’s soo nice that you have all this knowledge on ICC and also live in the same state.
Thank you so much!!
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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This reply was modified 3 years, 7 months ago by
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This reply was modified 3 years, 7 months ago by
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?
Thank you Hannah and Billy for your responses. Mom did get genetic testing and although hard to understand all the medical terminology, the terms “IDHI p.R132L” and “BRAF p.D594N” come up on the copy we received.
She is being treated at OHSU in Portland, about 30 min from where we live. Her symptoms began as a dull ache in her stomach and some nausea. The pain/ache remains but that’s really the only symptom she has, and weight loss ( she’s always had a healthy body weight) but now she is down to 100 lbs.
Apart from biopsies, and other diagnostic tests, she has not had much treatment other than the chemo and recently she’s been given Neuplasta. I’ve asked her doctor several times about getting her other treatments and I think I’ve annoyed him by now because he keeps saying that starting her on gem/cis is standard and if that doesn’t work they can consider other treatments.
On another note, cancer seems to run in my fathers side of the family, however, as for my mom’s, she is the only person in her family who has had cancer. I strongly believe my parents and brother’s cancer comes from a different source, environmental perhaps? Mom was pregnant with my brother during the time she and dad worked in the farming industry-pesticides? However, no way to prove this suspicion.
Anyways, I would be interested in getting her a second opinion. Can you please suggest how that works? Anything helps!!
Thank you kindly,
Anna
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
Anna,
I am sorry for what your family has been through and is going through. I’m sure others will jump on here and share their experiences. Is your mom being treated at a big cancer center? If not, you may want to ask for a second opinion there to reassure yourself that your mom is getting the best treatment. Gem/cis is usually the first line chemo for cholangiocarcinoma. Have your mom’s biopsies been tested for genomic mutations? Given your families history I’d suspect some mutations led to the cancer, and there may be targeted therapy available. If your mom’s doctors cant test for the mutations you can try to ask them to submit samples to Foundation One/ foundation medicine. I wish your mom good luck in her journey.
-billy
Hello, my name is Anna and I hate cancer. My only sibling was diagnosed with brain cancer at age 11. He’s 33 now and in remission but was left severely disabled. My mother was diagnosed with ICC in December 2020. Doctors originally thought she had gallbladder issues but found a mass in her liver. In January of 2021 my father was diagnosed with stomach cancer which had spread to his bones. He died the following month.
Most times it feels like a bad dream or a curse but I try to stay positive that my mom will make it. I know very little about ICC and feel helpless. Mom is stage 4 ICC and surgery is not an option because one of her lymph nodes near her heart tested positive. She’s on her third cycle of chemo and doing okay. Despite my dads sudden death and her own recent diagnosis, she’s strong and has little to no side effects. She’s taking two naturopathic treatments as well as gem/cis, however, I can’t help but feel she needs better treatment and am afraid doctors are not helping her as much.
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