Anyone taking tibsovo for bile duct cancer?

Hi @jo16, welcome. Allow me to tag fellow cholangiocarcinoma members like @kieran86 @lberg @jerrydrennan @lisamb @mngardenaddict @mcarrel @afrancesca @chicory2010 @clarke6 @summer83 @tball3748 @wjdemarco to see if anyone has experience with ivosidenib (Tibsovo) and managing side effects like rash and low sodium.

While we wait for others to chime in, you might also be interested in this related discussion:
- Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

Jo, I'm sorry to hear that symptoms from Tibsovo are limiting the full dose of treatment. What remedies has your cancer team suggested to deal with the rash and low sodium?

Hello Colleen,
I am already glad I reached out to you. I had begun to think I was never going to connect with anyone who could relate to this. I am sorry they are with me but I feel stronger not being alone. My original treatment was gemcis since I am stage 4 with mets in my spine that were radiated last spring. I had no side effects other than the usual from the gemcis and remained stable beyond expectations but the time came to switch to the targeted therapy I am lucky enough to be eligible for. I think 20% of cholangio patients have an Idh1 mutation. I am treated at Mskcc in NY by a very compassionate oncologist who I am sure is doing everything to put this puzzle together. The rash was controlled the first time with prednisone and 2 topical creams. I was briefly hospitalized so a kidney specialist could weigh in on the low sodium but I'm still unsure if I was just drinking too much water. I had been raised on idea that salt was bad but now I add it to my food as another possible solution. One other complication is my hemoglobin hovering between 7 and 8. A transfusion at the hospital gave back some energy! So I see Dr J tomorrow and I hope we create a plan that allows me to stay on tibsovo and I get a scan soon to see if it's working. It's all about buying time and I cherish every moment. Next steps are folfirinox and clinical trials. I hope I haven't gone on too long but I'm so glad to put it all down here! I will be grateful for any thoughts others might have for me. Peace

I’m taking 500 mg day of tibsovo. No major problems, but have a bad rash all over. Seeing a dermatologist . I want to stay on it . Getting more diagnostics in a couple of weeks to see how I’m doing. I was diagnosed around Thanksgiving w stage 4, colangeo with a couple spots on my spine. I live in Atlanta and go to Winship at Emory . I just want to stay keep on this program as long as possible. I have IDHI MUTATION

Hi. I was diagnosed with bile duct cancer 5 years ago, had chemotherapy twice, now with bone metastasis in four areas. I started Tibsovo on 10 July. So far I have not had any particular symptoms apart from occasional fatigue / tiredness.

Hi @linoc, I think you're starting Tibsova today. How was the first treatment?

I actually started on July 10, so that’s more than one month. So far not bad. Only occasionally tired and a bit of swelling in feet and fingers. So whilst approaching my 6th year with cholangiocarcinoma I can’t complain, thank God!

I've been on Tibsovo for a year .. it is wonderful. Only side effect is I fall asleep easily. Trying to read or watch TV. I have my appetite back and energy.

Hi. Do you take Tibsovo for bone metastasis? If so what was the impact on the effected bones?

Welcome @susiebean. I'm not sure if you saw @linoc's question to you asking if you are on Tibsovo for bone metastasis? Did you have any other treatment?