Hi Jadey,

I have pancreatic cancer stage 4 with a metastatic liver tumour.

I saw your post about Folfirinox. I had my 43rd treatment of Folfirinox this week. I'm willing to share my experiences, but as you are aware chemo affects people in different ways, but I'll try to answer any questions you have.

Regards,

Simon

Hi Jadey,

How are things with you? Have you started Folfirinox yet? Has the lockdown delayed your treatment?

Hope you are doing okay. 

As I mentioned in my previous reply to your post, I'm willing to talk about my experiences with Folfirinox with you.

Please contact me if you'd like to chat.

Take care,

Simon

Hi Simon,

Thank you for your messages, sorry it's took so long to reply. I had recently changed phones and forgot to set up my email so wasn't getting notifications.

I received my 2nd round last Tuesday. My first round completely floored me, ended up in hospital as couldn't stop being sick. This time round has been a lot better, only really felt weak/tired for 2 days.

How are things going with you?

Jadey

Hi Jadey,

No problem about getting back to me. Good to hear from you.

I remember my first round of folfirinox and it was really rough. It took 5 rounds of adjusting the dosages before I felt I could function reasonably well. I just had my 44th round on Tuesday. I'm quite a novelty in the chemo department.

I should clarify one point. I'm from Bristol, but I live in Nagoya Japan, but the treatments are the same. The names of medicines to help the side effects might differ somewhat or medicine available there isn't available here and vice versa.

I get 4 days of medicine after a round of treatment to help the side effects, one is anti-nausea and the other is a steroid.

I started a cancer support group last year as there is only one support group for non Japanese speakers in Tokyo and that is for breast cancer. At the moment we have 4 foreigners and 4 Japanese members in our group and we meet once a month. 

I don't have time now, but I'll send you an article that was published in an English newspaper about the group.

Take care,

Simon

Hello Jadey,

                    just read your latest post that you have started treatment and its good news you have coped better with the secound round. l always liked to imagine when l was feeling bad,just what it was doing to my unwelcome visitor,which always had the effect of making it seem just that little bit better. But l hope you are not thinking of going into competition with Simon for having the most rounds !,

                                                                                                                       DAVID