Ivosidenib/tibsovo

Hi Muff 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I've done a search in the group looking for previous posts which mention ivosidenib or tibsovo and found these which mention ivosidenib and this one which mentions tibsovo. You could take a look at them and reply to any of the posters where you think they might be able to help you further.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hello, my name is Chris and I have recently been diagnosed with inoperable advanced bile duct cancer.

I have the IDH1 mutation and I may be joining a clinical trial to receive ivosidenib instead of chemo (after 4 cycles of chemo).

I'm in two minds about it though, as it would mean travelling to a different city to receive treatment - and there's a 1/3 chance that I'd be in the control cohort who continue to receive chemo and don't receive the ivosidenib treatment; so it would be a lot of effort for a treatment that may or may not have any more benefit than my existing treatment plan - the whole point of the trial is to establish whether or not it does have more benefit than chemo.

I've only had one cycle of chemo so far and I've already had an infection in my foot, so moving away from chemo early feels like it might be a good option.

I'd also love to hear from anyone who has personal experience of ivosidenib.

I Chris I’m on Ivosidenib/tibsovo since May , I was also in the control group for abc10 at UCLH meaning I had the full 8 cycles of chemo ,4 at Addenbrooke’s Cambridge and 4 at UCLH London , I live 30 miles from Addenbrooke’s and 100 from London , car to the former and train to the latter , I then went on to Durva immunotherapy for 3 infusions had slight progression in spine have been on ivo ever since holding stable . This is all done through prof bridgewater at UCLH for abc 10 trial . Had good control on gem/cis/ Durva with shrinkage in liver and stable bone mets. Very few side affects with chemo and little to non on ivo. Going tomorrow to UCLH for face to face to get more ivo. Hour and half to kingscross, one stop on underground for UCLH , just bloods and ecg which is not to bad , waiting for prescription to be filled takes an age. Also go on face book and put ammf it’s the most helpful for our condition every thing is there and any question answered. Hope this helps ,ask anything you want

Thanks Muff, and I hope you had a great Christmas! 

I'm foregoing a round of chemo today in order to remain eligible for the ABC-10 trial, so I hope that I'm selected - however it is very interesting to see that you were originally on the control group and that it sounds like your treatment has gone well, which is great to hear!

It is also great to hear that you have had little to no side effects from the ivosidenib - I've already had an infection after just one cycle of chemo, hence why I am more keen to try another option if possible.

I hope you are keeping well, and no doubt I'll have some questions in the near future.

Best wishes, Chris

No problem , I fortunately had very few problems with chemo . My main ones were cold feet, slight loss of hair , but very very fatigued first few day or two after,during treatment could sleep for England and did ,and the worst one was constipation,had to take plenty of laxative unfortunately. But since then on ivo , neuropathy (cold feet) has gone only slight fatigue, and constipation still there but I take a senner at night and one or two in the morning. I was also advised to get vitamin d , doesn’t matter about your vit d level so I take a tablet , haven’t a clue if it’s working. 
merry Christmas to you and yours and don’t hesitate to ask away