Hannaha
Forum Replies Created
-
Posts
-
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.
An update:
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.
-Hannah
Hi there HVSB- Thank you so much for sharing your story and your experience with abraxane with us. I’ve read a bit about its use in some clinical trials, but it sounds like it made all the difference to you. After your challenging path through chemo, I wish you all the best with your surgery and smooth sailing in your recovery!
-Hannah
[Edit: wrote my reply while bglass was apparently posting hers. Apologies for some repetition]
Hi Bruce,
Welcome to this community.
I should start by saying that I speak as a family member and an avid reader of relevant medical lit, not as a medical expert. My biggest recommendation is that you reach out, if you have not already, for second opinions from major cancer treatment centers.
I have not heard of this kind of post-resection complication, and can only offer my sincerest sympathies at the rocky road you must have traveled these past few weeks. I can hardly imagine how frustrated you must feel and eager to start the radio/chemo, on top of the pain and discomfort of your intestinal injury, atop an already challenging surgery.
Based on having seen my mom through chemotherapy and from what I have read of radiation therapy, however, it is important to be as strong as possible before you begin the treatment, since it will ask an awful lot of your body. While you are no doubt in an understandable hurry to get started with this next phase as soon as possible, these treatments can only be effective when your body is able to withstand them. Like you, I have heard that there is a standard guideline for beginning post-operative (adjuvant) therapies before 12 weeks after surgery. It is important to remember that this guideline was selected based on averaging data points in medical studies: they are ideal calendars based on “average” patients; they are not absolutes, and there are no actual average patients in real life. It is important to remember that within those studies, patients had a range of experiences and responses to treatments on either side of that 12-week “window.” Again, I am no doctor, but I would be inclined to think that radiation and/or chemotherapy would still offer important therapeutic benefit even if you miss the so-called “window” due to the important healing your body is doing right now. Are your doctors able to explain why they see this calendar as important, and what their thoughts are about starting the treatments a week or two late?
You have not mentioned where your are receiving treatment. One of the most important things with a diagnosis like cholangiocarcinoma is getting second (and third, and fourth) opinions. Smaller non-specialist hospitals are often poorly equipped to deal with patients who present with this diagnosis, as my family quickly discovered. And even if you’re at a major cancer center that treats CC all the time, it can still be really helpful to get a new set of eyes on your case – particularly oncologists ready to think outside the box about your unusual circumstances. If your medical team seem overly fixated on this 12 week “window,” perhaps others might have a different opinion. Admittedly, getting a second opinion sometimes takes time. Still, I think very much worth getting that ball rolling.
As a parting thought – congratulations on the resection itself – even if it has been a far more challenging journey than expected.
Hannah
In case anyone else happens upon this thread with a similar question:
After we applied a bit of pressure re: shifting the scans to a quarterly schedule rather than the semi-annual calendar our oncologist initially recommended, he went ahead and ordered the scans. He did warn us though that insurance would probably not cover them. Much to our pleasant surprise, insurance approval came through almost immediately. It sometimes pays to be pushy!
Thank you so much for your prompt and informed reply, Mary. As always, you are a wealth of knowledge.
-Hannah
Wonderful news! And especially so that your husband is really beginning to feel better. 🙂 Thanks for the update.
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.
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.
Hi Jules,
I’m sorry to hear that your husband has been struggling so much with the side effects from the chemo, and gosh! how frightening about the blood clots. It is, however, great news that the chemo is having the intended effect on the cancer, and also great news that your husband is sometimes in the mood to steal your ice cream :).
I really hope that his doctors are able to figure out a more workable dosage that is still effective but doesn’t wreak such havoc on the rest of his system. I cannot speak from experience as we never dealt with clotting issues, but I have heard that this is a symptom some people experience on the gem-cis. What I can speak to is dosage changes. In my mom’s case, she had to be bumped down from a 100% dosage to around 75%, from the 4th cycle onwards, after her neotrophil levels really started to become a problem. This was tough news to receive at first (we worried that less chemo would mean less effect against the cancer). As it turned out, though, a more manageable dose was what allowed my mom to keep receiving the infusions – and she continued having significant shrinkage in spite of the reduced dose.
Please keep us posted on how your husband’s oncologist decides to address this issue at his next appointment. And wishing you continued strength in finding your way through all these challenges as they come along.
Hannah
Hi Jules,
Thanks for the update. As Mary says, your doctors may decide to change the dosage depending on the severity of your husband’s side effects. This happened with my mom, as well, and it’s worth noting that even at 3/4 the standard dose, her chemo was still was very effective. It seems like your husband has found that the abdominal pain he experiences is a nuanced thing – sometimes a product of the steroids, sometimes maybe the chemo, sometimes who knows. That sounds really familiar. I have read that some people over the course of their treatment are able to adjust the amount of pain medication according to their need. This has been true of my mom, but is also something I’ve encountered in reading others’ stories, who have been able to wean themselves to lower doses, or even eventually to get off of the pain meds completely – this mostly if the the treatment regimen is doing what it is hoped it will do. The trick of course is not being over-eager and winding up with out-of-control pain. Perhaps your husband could chat with one of his doctors about how best to taper or adapt his use of those drugs to fit the need.
I hope you get good news from your next set of scans. My mom is also getting her next scans around then. Fingers tightly crossed.
Hannah
Hi Derya,
So glad to hear that your mom had her surgery and hoping that you get good pathology results soon.
Regarding getting her back towards a more ‘normal’ diet and intake of food, it is a very slow process after this kind of surgery. After my mom’s resection in February (in which she lost her gallbladder – not sure about the status of your mom’s but losing a gallbladder really messes with your ability to digest things), she ate nothing at all for several days, and then was limited to a few bites here and there for several weeks before she really got back to anything like a normal-sized meal. If something sounds tasty, try it. Be wary of things with lots of fat or lots of fiber, as these both require more work to digest. If she is able to eat 2 or 3 bites of something, consider it a success and return to the project after a couple of hours. With a little luck and a little time, she’ll be having a half dozen bites, and then more. I know that others have had success with nutrition drinks and similar. My mom thinks they’re revolting, but if your mom is more open-minded about them, they might be a good way to ensure she’s getting the nutrients she needs.
Good luck and best wishes for your mom’s recovery!
Hannah
Hello,
What a wonderful thing that your spouse has responded so positively to the gem/cis!
As usual Mary makes a number of good points about how to address the decision that stands before you. If I could add only one thing, it would be to recommend seeking a second opinion, (or maybe a 3rd, since it sounds like you have different doctors offering these options?). Like your spouse, my mom also had a strong response to the gem/cis that converted her initially inoperable diagnosis into an operable one. Our family started chasing down alternative opinions when it became clear that her tumor was shrinking. At first we were just looking to line up the best options for a “what’s next” plan after the gem/cis quit working, we but were surprised and cheered when Dr. Billingsley at OHSU offered us the possibility of a second chance at surgery. We were able to take that decision with greater confidence after two other doctors, including Dr. Kelley at UCSF and her original surgeon Dr. Hansen at Providence in Portland concurred that this was a good idea. Some hospitals go out of their way to make asking for a second opinion easier for you. UCSF, for example, offers a simple online portal: https://www.ucsfhealth.org/secondopinion/
Apologies if I’m just repeating things you’ve already considered.
Hannah
