Olis

Hi Jijet65, Flipflopgirl

I just registered when I saw your posts. Living in Germany,getting treatments at Univ. of Frankfurt and can give you some feedback from over here.

I am getting Gem&Cis since 5 months. Durvalumab was added after one month.

So far my experience is positive: my ICC with with multiple liver metastases as well as lymph node metasatases got slightly better after 3 months staging. Some liver leasons got slightly smaller, none got worse and no suspicious lymph nodes any more.

But: during this time problems occured with bone metasatses that no one really tracked or had in focus. I got one in the arm and another one in the leg. After revising the older CT scans it seems that they were available since many months but no one really saw them. For me it seems that the leg metastase grew during the treatment mentioned above, but this needs to be checked further.

Regarding replacing Gem&Cis with Durvalumab: I just recently had a very interesting dicsussion at University of Heidelberg (www.nct-heidelberg.de), they explained me that they – per standard – try to replace Gem&Cis with Durvalumab in case of improvements after 2? cycles (need to confirm this). This is due to side effects. Hope is that Durvalumab can manage the situation. In case patients are worried about this change they would only remove Cisplatin and keep Gem.

Different to this my doctor proposed to continue with all 3 with no time limit until there are any issues with my blood. So far I am lucky and blood seem to be stable.

Is anyone aware of recommendations from publications regarding skipping Gem&Cis?

Btw, adding Durvalumab had no negative impact for me.

I am wondering if there are any clear rules for stopping Gem&Cis in the States or is this up to every oncologist? Moreover, is there any standard bone metastases tracking/staging? If so, with which method is this done. In my case there is no tracking so far. Would such metastases be removed by surgery?

Looking forward to any feedback.