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  • in reply to: Hi Everyone #97172
    sersemi
    Participant

    Hi All,

    It has been a long time since my update. 4 months ago I was on the edge of a decision re-surgery vs Folfirinox chemotheraphy as a clinical trial to control my metastatic ICC that spread to my liver, and a few isolated tumors in my abdomen which has growed significantly in a 3 months time when I was on a treatment break after 6 months of Gem+Cis. After talking to 3 different surgeons and various oncologists, I decided to enroll in Folfirinox trial. Surgery seemed very risky.

    Now, I just finished my 8th cycle with Folfirinox. It is quite heavy chemotheraphy that gave me lots of nausea, lack of energy almost 1 week after each cycle. It kept the tumors in liver stable, however, latest scan unfortunately showed significant growth in tumors in the abdomen and peritoneal. My oncologist recommended to stop the Folfirinox trial. In the meantime, I also had genetic test on my tumor which showed IDH1 and FGFR2 mutations. There is a new clinical trial in the Netherlands  on IDH1 mutated cancers looking at the dosage and effectiveness of Metformin And Chloroquine in IDH1/2-mutated Solid Tumors (MACIST)   https://clinicaltrials.gov/ct2/show/NCT02496741 .  Probably, I will enroll to this trial. Is there anyone in the forum who tried such kind of therapy before?   If it doesnot work my second option will be a new clinical trial targeting FGFR2 mutation with TAS 120. If anyone has experience with these treatments, I would like to ask your opinions & experiences.

    Thanks in advance, and have a great weekend already.

    Semih

     

     

     

    in reply to: Hi Everyone #96569
    sersemi
    Participant

    Dear All,

    Thank you for all the supporting replies. I would like to give an update for my status. I met with my oncologist at AMC. He told me that there is no 2nd line standard treatment for CC. In the Netherlands, there is only a single clinical trial available, i.e., 4CC, which aims to observe the effect of Folfirinox on CC patients. It seems that Folfirinox is shown to e effective for advanced pancreatic patients, and Phase I clinical trial for CC patients also shows some promising results. It is still not curative but only pallative treatment. He advised me to enroll to this study. If it fails, then I am allowed to try new immunotheraphy drugs, e.g., Keytruda etc. in the Netherlands. All these treatment options will be covered by insurance. He also mentioned that a new surgery or radiotheraphy is not proven to be effective for recurrent CC cases. But I believe that every patient is different, one patient may respond well to a treatment whereas another patient may not. So I am exploring all options now.

    I traveled to Turkey this week to meet a very famous surgeon in Turkey. He evaluated my case, and he believes that the recurrent lesions can be resected successfully. He told me that surgery is necessary for longer term survival since the lesion in the liver is close to an important blood vessel, and it can be late to operate if the lesion spreads to the blood vessel. After the surgery, a systematic treatment is necessary again. He has many patients in Turkey, and he is also very open to new treatments with immunotheraphy. He has some patients he successfully treated with Opdivo and surgery combined. He gave me quite some confidence, he is quite experienced in CC. Unfortunately, all these treatments probably will not be covered by my Dutch insurance since it is not a standard treatment. It is quite disturbing that they still look for a standard treatment where at this stage there is no standard treatment. I wish it had one, and I pursue that route easily. I am more inclined to go this surgery + systematic treatment iso trying a new chemotheraphy directly. I will make my decision in a few days and make a plan for my next treatment.

    Have a nice day and great weekend,

    Semih

     

    in reply to: Hi Everyone #96526
    sersemi
    Participant

    Hi All,

    Thank you so much for all the support. I will meet my oncologist at AMC Amsterdam on Monday. Maybe he can help me to find possible clinical trials for me. I will let you know about the outcome. Many thanks again.

    Semih

     

     

     

     

     

    in reply to: Hi Everyone #96508
    sersemi
    Participant

    Hi Everyone,

    I would like to give a short update on my status after chemotherapy.

    I received 6 cycles of Gemistabine+Cisplatin for 1st and 8th days and rest on 15th, having 21 day cycles. My main complaints were extreme fatigue, but other than that it was better than what I expected. The lymph nodes shrank 30 %, it was not that bad. After the chemo my oncologist advised 3 month observation time without any treatment. However, latest CT scan in mid January showed 2 new metastasis one in left abdomen about 7 cm which gives me some pain on the left abdomen, and another one on liver close lymph nodes about 4 cm. Today, I am having all high and downs, trying to figure out what this means, and looking for any options for extending my life. I expect that the oncolgist in the Netherlands would like to try another chemotheraphy FOLFIRINOX . Does anyone have similar stories or experience with this chemo? Would it better to follow an immunotheraphy based second line treatment?

    p.s. I tried to contact Merck about their Study of Pembrolizumab (MK-3475). However, it seems that the contact numbers are belonging to high management, not for patient contact. Is there any other contact info for clinical trials?

    Thanks, and have nice day.

    Semih

     

     

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