It's all starting to feel real...

[Lori]

I have borderline operable pc in the head, and the plan is to do three months of chemo, folfirinox, and then see if the tumour has shrunk enought to do the Whipple procedure.

 

If not, we will try a round of radiation.

 

Tomorrow I go for my port and then start the chemo next week. Up until now I've been super upbeat, surrounding myself with positive thoughts, but today, I'm feeling a bit nervous and scared. It's all starting to feel so very real...

 

I'm wondering if any of you have had folfirinox? What did you experience week 1?

 

Also, I'm having it done at LOC Harley - anyone been there, and if so, what's it like?

 

Thanks for reading and fingers crossed there is someone out there who can answer my questions...

 

Lx

[pd123]

Hi Lori,

What you are doing is very positive and proactive.

Try not to get too hung up on the possible side effects of  Folfirinox which is so easy to do whilst reading/researching. Everyone is different and everyone will experience variations of the side effects to varying degrees. Some people breeze through Folfirinox chemo whilst others have a harder time but there is only one sure way of finding out and that is to go for it!

Also It is worth bearing in mind that CT images are not to be relied upon 100% when trying to interpret how tumours have responded to Folfirinox. This can be due to scar/dead tissue still giving the appearance of tumour on the CT scan following chemotherapy. Recently It has been found, not infrequently, that after neoadjuvant Folfirinox, tumours which were deemed inoperable on the CT scan were in fact operable upon conducting an exploratory laparotomy. Folfirinox can reduce tumour size and also cause the tumour to shrink/release itself from arterial contact thus allowing for its removal sometimes without the need for arterial resection/grafting. If you tolerate the 3 months of chemo well, it may even be worth considering  another 6 cycles to get maximum benefit?

 

Best wishes,

Paul.

 

 

 

 

 

 

Edited August 4, 2021 by pd123

[Lori]

1 hour ago, pd123 said:

Hi Lori,

What you are doing is very positive and proactive.

Try not to get too hung up on the possible side effects of  Folfirinox which is so easy to do whilst reading/researching. Everyone is different and everyone will experience variations of the side effects to varying degrees. Some people breeze through Folfirinox chemo whilst others have a harder time but there is only one sure way of finding out and that is to go for it!

Also It is worth bearing in mind that CT images are not to be relied upon 100% when trying to interpret how tumours have responded to Folfirinox. This can be due to scar/dead tissue still giving the appearance of tumour on the CT scan following chemotherapy. Recently It has been found, not infrequently, that after neoadjuvant Folfirinox, tumours which were deemed inoperable on the CT scan were in fact operable upon conducting an exploratory laparotomy. Folfirinox can reduce tumour size and also cause the tumour to shrink/release itself from arterial contact thus allowing for its removal sometimes without the need for arterial resection/grafting. If you tolerate the 3 months of chemo well, it may even be worth considering  another 6 cycles to get maximum benefit?

 

Best wishes,

Paul.

 

 

 

 

 

 

 

Thank you so much Paul... lots of great points to keep in mind, super helpful. Much appreciated.

 

Lori

[faylemv]

I sailed through the first 9 treatments of Folfirinox by which time my oncologist told me that it had done 99% of its work 

Following my 9th treatment my neutrophils dropping into my boots and I was rushed into hospital 

i was then prescribed a drug to prevent this happening again, I had a break then went onto finish all 12 treatments 

Go well with your treatment  

bye for now 

 

[Lori]

13 hours ago, faylemv said:

I sailed through the first 9 treatments of Folfirinox

Thanks for your reply faylemv.

 

I know everyone is different, but did you lose your hair? Or have any other symptoms?