Stage IV Cholangiocarcinoma, after Cisplatin etc & Immunotherapy

  • 1 reply
  • 39 subscribers
  • 205 views

My husband had 5 cycles of Chemo and Immunotherapy. His Cancer markers were downtrending but recent CT shows progression of disease in liver and abdomen.  He suggested FOLFOX as 2nd regimen. Seems like a logical step based on our research.  He DOES have the IDH1 mutation, and we heard of a pill (Tibsovo) that the CCF said could be taken in conjunction with this chemo treatment. Does anyone have any advice on this?  Concerns? Our oncologist said he wasn't too familiar with treating at the same time, but we have read and heard from the foundation members that this is common.  How do we "push" to see if this is something that could be done simultaneously?  We are running out of time and I would hate for this to be my husband's 3rd option, if it could help prolong his life asap.  Of course, we have to see how my husband responds to the FOLFOX. The oncologist was optimistic that my husband would respond positively. We don't want false hope, but we still believe in hope. Can anyone help us ?

  • Hi  

     

    Welcome to our online community and thanks for posting your question. My name is Amy and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

     

    It’s never easy finding out a loved one’s treatment is no longer working. It can be even more disappointing when the markers had been down trending, so it’s only natural to search for all the treatment options available.

     

    Tibsovo (ivosidenib) was approved by NICE last year and states “Ivosidenib is recommended, within its marketing authorisation, as an option for treating locally advanced or metastatic cholangiocarcinoma with an IDH1 R132 mutation in adults after 1 or more systemic treatment”.

     

    I am unable to find anywhere that suggests tibsovo would be given in combination with FOLFOX. All the literature suggests it is a monotherapy that can be used for those who have already undergone one other treatment. The Cholangiocarcinoma Charity, AMMF have the same information.

     

    This may be why your husband’s oncologist is unfamiliar, as this is not standard practice in the UK or Europe. Research does suggest that outcomes are promising, and treatment is well tolerated.

     

    We often find we can help more by exploring these questions over the phone. If this is something you think would help, then please don’t hesitate to get in touch via our support line on 0808 808 0000. We are available 7 days a week, 8am-8pm.

    I hope this helps.

      

    Best wishes, 

    Amy C, Cancer Information Nurse Specialist 

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

    Ref: AC/TT