Treatment plan for active Retroperitoneal aorta lymph nodes.

Good to hear your positive news. I am currently having the Capecitabine. Just starting my 3rd on my first cycle, and i am getting on really well with them, and have had no side effects which is good. Hope it will be the same for you.

Hi jennie so glad you’ve got a positive plan sorted ! And I do hope you can sail through it. I know what you mean about having someone you click with sitting in the meeting it makes such a difference. I had a lovely registrar who always came to my surgery meetings and changed his shift in order to assist with my surgery and my GI nurse was lovely.

wishing you all the best for 2026 please keep us updated with your treatment xxx

Hi Jen, I am on this regimen now Capox and pembro every 3 weeks.

Yesterday I started my 3rd cycle and this one so far 24 hours after the infusion I feel much better than the 1st and 2nd where I had incorrect medication for both, but 3rd time lucky!

They give me Pembrolizumab and Oxaliplatin through a cannula which the Oxaliplatin I find does cause some bother going through my lower arm compared to the PICC but I’d rather not have the PICC back in!

The tablets I have is 1300mg AM then 1300mg PM for the 21 continuous days, I find they don’t give me much bother. Fatigue in spouts but unsure if that’s related to keeping myself active or a mixture of all sorts. 

When I first started I was around 9 months from having my last FLOT infusion, it hasn’t been to bad and I havent lost my hair this time they consider this to be my 10th round of oxaliplatin so side effects are still accumulative a little bit but not so bad having the gap in-between.

The neuropathy is a little worse than FLOT but this time round I’m given more of the drug than what was in FLOT, I do get a very normal 2 weeks out of the 3 I’d say where I can train along with abit of light boxing and continue day to day life. 

You’ll smash this again Jen. All the best! 

This is good to hear, thanks for replying. They did say this regime would not be as harsh as the FLOT. Hope the rounds stay the same. Will you be due a CT scan? 

Hello Rich

Sounds like you are coping really well, gym, boxing  Awesome . Good to hear you are not losing your hair, I lost all my body hair with FLOT, my hair grew back wavy and has got to shoulder length. 
I like the idea of a 3 week cycle so good to hear your feedback Rich.

Will you be having a CT scan soon? 

That light boxing sounds therapeutic, I can visualize what I would be hitting

Have a good evening welcoming the new year.

Thank you for your positivity Rich

Take care, BW Jen

Hi Jen, i’m trying my best to be here long as possible for my son and wife so keeping fit and healthy to be able to stay on treatment for as long as possible! The boxing has been taken up due to attempt to release some anger and training makes me feel good so i think it aids things mentally! The 3 week cycle definitely gives you more better days than FLOT 2 week cycles which makes things much easier, blimey your hair as grown fast it seems! Or infact how fast does time go!

My oncologist suggested scanning between cycle 3-4 from recent study’s shows if the treatment is working so gives time to think what next steps are from there.

Did you ever recieve a PDL1/CPS for Pembrolizumab?

Enjoy your evening also tomorrow Jen x

Good morning Rich

Yes totally get that fight although I am grateful for the years I have had with my husband, children and now grandchildren. You are a lot younger than me, as old as one of my children who range between 46 down to 36. My grandchildren range between 18 to 7mths. 
How old is your Son Rich? Sounds good that you have found a release for your anger and it works for you.

Yes I will be the same CT scan after the 3rd round. How long did you wait from your oncology Apt. to starting your treatment, I have a possible 4 week wait?? which feels bloody long. I am gonna call the Dept today. These things, waiting makes me feel angry, cancer waits for no one yet I feel we, Cancer fighters have to wait for everyone. Might get myself one of those punch machines I see on Tictok lol.

What is PDL1/CPS, they said test to check immunotherapy suitability had already been completed and I was suitable. Should I ask at my next apt what they are? 

Apart from on here do you use any other support? Have you used the OPA sight/forum? 
What week in your 3rd R. Are you now, FLOT knocked me for 6 in the 1st week after so I am hopeful  this doesn’t.

Hows your eating Rich.

All the best, Jen

#findthewonderfullintoday 

Morning Jen, my son is turning 3 rather soon and I’m already sure he’s been here before !

My oncologist appointment was only for a checkup as they’d kept me on to monitor/scan every 6 months. But the 1 year scan had shown changes then 2 scans after the findings they’d decided best course was treatment to start within 2 weeks instead of wait further for biopsies as that could take awhile. So we arranged to go to Dubai and come back straight into treatment. So overall after the decision to go ahead with treatment it was about 2 weeks, but getting to that point took about 6 weeks waiting for scans, MDT’s comments, further tests etc. 

PDL1/CPS - I was told this was typically what some rouge cells hide behind (PDL1 protein acting asif they’ve good cells to your immune system) And using immunotherapy blocks the cells from hiding allowing your own immune system to attack back. For this I had my tumour from the Ivor Lewis tested which has been in storage which lead me to question my oncologist about the difference in benefit from higher scores etc but aslong as there is expression I think it’s just how your body handles it from there. 

I find myself browsing alot through facebook groups if I’m looking answers I haven’t used any OPA forums etc.

I am on day 4/5 of my latest cycle(3rd) so the Pembrolizumab and Oxaliplatin was on Monday, today being Friday I think it’s the Hump day for this cycle which means I can finally have myself a normal coffee and not a decaf! In regards to my eating it’s actually quite okay, it’s usually my own doing if I have any problems with that extra bite I shouldn’t have had! 

How are things your end in regards to eating?

Well wishes, Rich x 

Wishing you the best of luck with the treatment program Jen,

They do have some really effective treatments for OC now. 

Lowe'

Good Morning Rich

What a morning have you seen that moon, Wolf moon, it’s just stunning.

3yr old son, well nearly, he has to keep you on your toes, that has to feel tough when the side effects are at their worst. 
Not sure what test they did in the past, they just said I was able to have immunotherapy, I will ask though as I like to know/learn.

So when I had the oxaliplatin before I could not touch, eat, drink anything cold. I had antihistamine given before and they slowed down the rate when administered. I will be making sure I remind them with my first round, one thing I learnt big time is to not take it for granted that they read the medical notes, especially when it is busy. 
Explain the coffee regimen please. I am not a fan but have this week been drinking it for the benefit to the liver. 
I received my apt. yesterday, they will fitting  PIC on the 15th, I have tiny veins so I am not surprised, it’s just an added annoyance , no swimming or hot tub. I start my 1st round on the 16th.

Now I have to start telling family and work. I didn’t want to tell my children over the festive season and not until all was in place. But when is the right time to say, “it’s back” what rubbish news. Work is to support me, which is 30hrs a week now which I can do from home. Are you working Rich? 

Food wise, yes the same, self inflicted  If it’s to much my body will get rid by being sick. 

Thank you for sharing your info, it helps

Hope you enjoying your caffeine .. I will have everything crossed for your scan Rich. Let me know how it goes. X

 Best wishes Jennie