August 5, 2021 at 12:58 pm #101211WayhelenParticipant
I read through this thread and also saw your post on the survivor story page too. Thank you for sharing.
My daughter also has the IDH1 mutation (as well as PBMR1). I’m interested in the supplements your Mom took. My daughter is taking D and B12. If you have time, can you tell me about the astragalus (capsules)and why milk thistle furthest away from the infusions. My daughter is vegan (super healthy vegan..not a junk-food vegan) and we are looking at supplements.
HelenApril 14, 2021 at 11:33 am #100985
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.May 25, 2020 at 1:23 pm #100121
FYI: we got a really fast affirmative response from the pharmaceutical company for compassionate use (less than two weeks!) and they shipped my mom the drugs late last week. Now we’re just waiting for a lab draw before my mom starts Ivosidenib. I thought I’d pass this news along in case there are folks with IDH1 mutations out there who might be looking at this option and (like most of us) are in no position to wait for FDA approval.May 16, 2020 at 8:12 am #100106
Thanks Mary! I will encourage my family to look into radiation as well!
-HMay 15, 2020 at 10:32 pm #100032bglassModerator
Thank you for letting us know how your mom is doing. It sounds like she has an experienced medical team planning treatment, and it is certainly good news that the affected lymph nodes are staying stable.
We have heard from a few patients who had radiation treatment on single lymph nodes. What I don’t know is whether doctors would recommend radiating multiple lymph nodes in different parts of the body. A consultation with a radiologist might bring some answers if you want to cover all potential treatment bases. One case I can think of involved a patient who had done well with a systemic therapy but had one stubborn lymph node that needed to calm down.
I hope your mom’s new treatment brings her recurrence under control for a good long stretch.
Take care, regards, MaryMay 14, 2020 at 7:35 pm #100020
In late February, almost exactly a year after her surgery, my mom had a CT scan showing some growth in a couple of portacaval and periportal lymph nodes, and a suspiciously large axillary node (the doctor, at the time, told us not to worry about the axillary node until we’d figured out the more liver-local nodes). As we sought to figure out our next steps we were first thrown off track by an insurance glitch and then by the onset of COVID stuff. As a result it was not until the end of March that we finally got a PET scan, which wound up not telling us much except that, yup, those nodes all still lit up. We still needed to confirm that they were actually harboring cancer and not just ‘reactive,’ however. In early April we got a guided endoscopic biopsy of the periportal node and indeed, it was positive for cancer. At this point, we started reaching out to our various contacts, who recommended that we get another CT scan and that suspicious axillary lymph node tested, and start thinking about our treatment plan. Those tests happened last week, and today we learned that the right axillary node also tests positive. The good(?) news, however, is that the newest CT scan seems to show nothing else of note. A little growth in these nodes, but still no primary tumor, no other suspicious stuff going on. This actually does feel minor key miraculous given that it’s now been 2.5 months since that Feb CT scan. The other (definitely) great news is that my mom has no symptoms at present – she’s jogging most days, eating well, gardening, and planning camping trips with her wife.
We’ve been kicking around possible treatment plans for the past couple of weeks, thinking (variously) about returning to gem-cis, which my mom did really well with last time (although it really started to wear her out after 10 cycles), gem-abraxane, possibly an immunotherapy or targeted clinical trial, or, as all the docs kept returning to, ivosidenib. This last drug is not yet approved for cholangiocarcinoma, but phase III trials demonstrate efficacy in patients with IDH1 mutations, and it should be approved within months. Our care team at Providence in Portland is requesting a compassionate use exemption to allow her access to the drug. Hopefully we should hear back within a couple of weeks.
I will admit I have some anxiety about the treatment, given that it typically doesn’t “knock the cancer back” the way the chemos are sometimes capable of doing (as measured in tumor shrinkage). Some dumb part of me just really wants to knock the bejezus out of those cancer cells while they’re few, even though rational me knows it won’t actually cure her, since we know the cancer is circulating now systemically. But ivosidenib does have a meaningful record of achieving sustained stable disease. We’ve been told by Dr. Kelley down in UCSF that in patients who respond well to it, the drug can hold the cancer at bay for long stretches. I think for my mom, it is also encouraging news to hear that it is often well-tolerated, with few side effects. I hope that both of these will be true for her.
So, fingers crossed that the drug company lets us at their fancy new drug in a timely fashion.
I also keep wondering whether there are other options we should also be considering, whether radiation would be useful (assuming we’re able to hold the disease stable for a while?), etc.
If anyone has thoughts about any of this, experience with lymph-node-only recurrence, experience with ivosidenib, etc., I’m all ears. I’m also just putting this here in case others find themselves in similar circumstances and are haunting the discussion board running key word searches, as I’ve so often done.
-HannahAugust 29, 2019 at 8:32 am #99028
Fingers oh-so-firmly crossed for you. Lovely that the SBRT had such a dramatic effect!August 29, 2019 at 4:04 am #99025FindacureParticipant
We actually see his liver oncologist later today to review the liver results from his PET. His recent PET scan showed 3 nodes that lit up, “not very brightly” per his mesothelioma docs, but we are going forward with an EBUS procedure to get some tissue. If it’s inflammation, we can sleep better; and if it’s metastasis, he’ll be able to get a jump start on treatment. Looking at the PET, I could see a big “hole” where the cholangiocarcinoma once was, I think the SBRT obliterated it! (but that’s just the nurse in me reading it 😉 ) We are keeping our fingers crossed…
Have a good day, ChristineAugust 28, 2019 at 7:46 am #99019
Thank you! And I hope in turn that you and your husband will have good news from his latest scans. It is indeed a long and twisty road.August 28, 2019 at 4:55 am #99018FindacureParticipant
What wonderful news!!! Enjoy this happiness, what a long and twisty road this is… I’m cheering from afar.
ChristineAugust 26, 2019 at 8:26 pm #99014
A quick update: we received the wonderful news today that her most recent CT scan is clear!
On the basis of my mom’s cancer’s unusually strong response to the gem-cis, her oncologist at OHSU recommended that she complete another 4 rounds of the gem-cis after her surgery, as opposed to the more common choice of xeloda as an adjuvant therapy. She finished these in late June (for a total of 10 cycles – 6 were preoperative). It was a tough slog to get through the last couple of cycles but we are so happy to find ourselves here, now. A year ago I would not have believed we would be so lucky.March 3, 2019 at 10:03 am #98259gavinModerator
Thanks for the update on your mum after the surgery and what great news this is indeed! Thanks loads for sharing that with all of us here and I know that that will give hope to others as well. I too hope that your mums recovery goes smoothly, a few steps at a time with everything, food, walking etc but she will get there. You both must be well chuffed with the outcome here! Fingers crossed for you both with everything from here and please keep us updated on everything. And what a great use as well for cling film, as we call it here in the UK!!
My best to you and your mum,
GavinMarch 2, 2019 at 3:55 pm #98253
That is a great story about the plastic wrap, and a good reminder to keep at hand in your kitchen drawer! The surgeon’s team used something called dermabond to close her incision, so she’s got no staples and is apparently free to shower at will.
I just went back and looked at your story, and discovered that you got a central resection much like my mother’s! Here’s to skilled surgeons…
Our surgeon does not seem super-bullish about the adjuvant therapy, but we’ve been reading the data from the BILCAP study and plan to pursue this. Dr. Kelley at UCSF agreed in a pre-operative conversation that post-surgical treatment with capecitabine would be prudent. First things first, though – she’s got some liver to regrow!
-HannahMarch 2, 2019 at 3:15 pm #98252bglassModerator
What wonderful news about your mother! You (and your mother) must be feeling relieved and pleased with the successful surgery. The doctor’s observation on how well the chemo did its job was also great to hear.
I hope your mother’s recovery is uneventful. I was just thinking about my own resection surgery (now 40 months ago) yesterday, prompted by needing some plastic wrap. I had bought a massive roll of plastic wrap just prior to my surgery, to wrap around my midsection to protect the incisions during showers. And it has not yet run out, so it remains a reminder sitting in my kitchen drawer — I mention it also as a post-surgery care suggestion.
Please keep us posted on your mother’s recovery. Are her doctors recommending any post-surgery adjuvant treatment?
Regards, MaryMarch 2, 2019 at 2:28 pm #98251
We’re still in the hospital and likely won’t be discharged for another day or so, but the news here is too good not to share. My mom got her resection on Tuesday, and the pathology reports came back today. Clean margins on the tumor, and all 10(!) lymph nodes removed were negative for cancer. This after a failed resection in early September that found three positive nodes. Our surgeon this time around (Dr. Billingsley at OHSU) told us that he found a lot of scarring both around the tumor itself and around some of the lymph nodes, which he indicated might be residual evidence of the chemo doing its work (killing cancerous tissue, which in turn creates inflammation and eventually scarring as the body tries to clean things up). He removed about 30% of her liver as well as her gall bladder.
She’s recovering well – up and walking around and eating a few bites of this and that, although the eating is a trial and we anticipate that it will remain a steep uphill climb over the coming weeks to get her back on a normal-ish diet.
We know that there will possibly/probably be more rounds to fight in this battle, but for now we’re just over the moon.
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