New to this pancreatic journey

[Barbie]

Hello

I was diagnosed with locally advanced pancreatic cancer last June 2020. I have had 6 rounds of Folfirinox, which I have tolerated well and feel extremely well at the moment. I am starting five weeks of radiotherapy and chemo by pump next week. Unfortunately the tumour is still unresectable but I am hoping the tumour will shrink more so that I can have surgery.

Feeling a bit anxious about the next stage, just wondering if anyone else can give any advice/tips? Trying to keep upbeat.

[Skippy]

Barbie it's great you have managed the Firenfox chemo.

Has your consultant suggested that dr /dietician supplies telephone advice and a supply of protein shakes ?

We had a box delivered to our door of 24 bottles.(like milk shakes) It helped get the proteins in my bro when he didn't feel like a meal.

[Barbie]

Hello Skippy

Thanks for your reply. Yes I have been fortunate with the advice and help and I did have the smoothies on the days when my appetite wasn't so good, but I then had the juices which I prefer.

[Vasil]

Hi Barbie. My father was diagnosed just like you in June 2020. Had 12 rounds of Folfirinox, this week he starts radiotherapy. The oncologist said there is good chance that the tumour disappear with radiation. Have you experienced weight loss, this is my Dad's major problem in all other respects he is feeling quute well. Best, Vasil.

[Barbie]

Hi Vasil

Thanks for your reply.

Yes I have suffered weight loss especially during the poorly days after chemo but going back up now. Pleased your Dad is well and it sounds very positive, Thank you.

[Vasil]

Hi Barbie and thanks for your reply. Same with my Dad he had bad days when having chemo but now that chemo is over he's been able to put back some weight. He has appetite and I buy protein drinks for him. Are you going to have chemoradiation? My father has pure radiation with no chemo. A machine rotates above him and emits some rays (i think so). Started yesterday.

I hope this treatment will work for you and the tumour will shrink enough to make surgery possible.

With kindest wishes, Vasil

[Lori]

@Barbie How are you doing now? I have been diagnosed with locally advanced pancreatic cancer and I'm due to start with 6 rounds of Folfirinox, and then see if there has been enough strinkage, and if not move on to chemo radiation therepy. So a very similar journey.

 

I'd love to here how it all turned out.

 

Thinking of you, wishing all the best,

 

Lori x

[Barbie]

Hello Lori

Nice to hear from you. This is quite a journey eh and not what you wanted I am sure,  It can be hard but glad you have been offered Folfirinox, which will hopefully shrink it. Keep strong. 

Yes I completed 6 months of Folfirinox, and then went on to have chemoradiation too.  I was referred for surgery but this didn't work out as they found some  spots on my abdominal wall so I am back on more chemo. I coped well with the Folfirinox and I hope you do too. I did have a few off days about 4 days after treatment but it was like a clock every cycle and you know what to expect.  Strangely I have remained well all along. Keep upbeat if you can, get out in the air and walk, laugh and believe that you will overcome this. Positivity is so important. 

[Lori]

30 minutes ago, Barbie said:

Positivity is so important. 

Totally agree... thanks for your time to reply.

All the best...

[Vasil]

Barbie, what sort of chemo are you having now? 

[Barbie]

On 8/5/2021 at 9:00 PM, Lori said:

Totally agree... thanks for your time to reply.

All the best...

Hello Lori

 

Sorry not been on  here for a while. All going well and doing nice things. How are you getting on? How are you finding the Folfirinox. Tell me about your experience with it. Keep strong. Thinking of you

[Barbie]

On 8/6/2021 at 9:38 AM, Vasil said:

Barbie, what sort of chemo are you having now? 

Hello Vasil

 

Sorry for the delay, I am now on Gemcitabine and Abraxane. I am feeling well. What about you?