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To chemo or not to chemo?


Cardi
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In brief, I was diagnosed with pancreatic cancer at the end of October aged 48. It is not operable and is being treated with palliative chemo. I have completed 6 months of GemCitabine and Cistplatin on a three week cycle, which I coped with well. Unfortunately, we then received news that the chemo was no longer being effective. The tumour was growing again, and I had two small nodules on my lungs. 
 

We negotiated a short break form any treatment with the oncologist and was able to have a lovely week away in Cornwall in June. Everyone has commented on how well I have been, and how we have stayed positive.
 

Since then I have started on folfirinox and hit a wall. It has been terrible. The first round has made me terribly sick and nauseous, with extra meds I am now doing the second round. Although, I am able to keep food down, I still feel terrible and am really struggling with lethargy. I sleep most of the time. I am bored of doing nothing. My mood has taken a massive dip and I am very tearful. I am seriously considering whether it is worth it, for although it might prolong my life, my life doesn’t feel great. I don’t know whether to just grab what is left of the summer, and spend happy times with my kids (18 and 20), and with my husband. There is never a good time to die, and it fills me with fear, but I can’t help feeling it will be better for them without a long miserable end. We haven’t talked much about what is coming, and I think now is the time to do some planning. What I don’t know is if stopping the chemo will make my symptoms worse or whether there will be a window first. To my great distress, I can’t protect my family from this but can try and start to lay the way for them to follow when I am gone. 
 

Not really sure if I am asking for any advice, just needed to put my thoughts down in writing. Thanks


 

 

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Hi Cardi,

 

Just a little about me, I'm 48, and was just diagnosed with borderline resectable pancreatic cancer last week. The plan is to have Folfirinox chemo for three months and see if we can get the tumour to an operable state... if not we will try chemo-radiation.

 

It sounds like you are thinking about this very logically. I just wanted to reach out and say I hear you.

 

Wishing you strength,

 

Lx

 

 

 

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Thanks Lori.

 

I wish you lots of love and strength. So pleased you have some good options on the table. I think the main reason I have not coped well with Folfirinox is I was already bashed about by the previous chemo. Lots of people do very well on it and I’m sure you will too.

 

Thank you for reaching out, it is much appreciated. 
 

Cardi x

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  • 1 month later...
Nicolamc

Hello, I hope you have reached a decision you are all comfortable with, if this exists!

my husband has just started folfirinox, he had the treatment on 21.09.2021 and is due again on Tuesday, however he has been so poorly, how were you? Xx

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Mumshelper

Hi Cardi,

 

Just want to say what a brave lady you are. The strength you see in people who go through chemo is incredible.

 

My mum has had the opposite journey to you. She has an apparently operable tumour so she started on folfirinox. It was 3 months of hell for her and I hated seeing her go through every side effect it threw at her. She stopped after 4 rounds after developing sepsis from her PICC line, which almost killed her. It was awful. After all that we found out that Folfirinox had perhaps kept it from spreading but hadn't stopped it growing.

 

Now she is on Gempcap and like you managing the side effects much better and has a much better quality of life. She has just completed her scheduled 6 rounds and now we wait anxiously for scan results to see what the outcome will be. 

 

It sometimes feels like an impossible hand we have been dealt. I am 28, my mum is 61. I never want to loose her, like your family won't ever want to loose you (or think about when that time comes) but I do know that after seeing her so weak and miserable, I want to treasure and enjoy the time that we have left however long that may be. I'd rather have 1 really good year with her where she feels happy, comfortable and strong, rather than 3 years where she can barely leave her bed. Talk to you oncologist and see how they can manage your side effects better so you have more of a quality of life. They may be able to reduce the strength of the chemo for you or give medication to manage the bad side effects. Sending you lots of love. 

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Sandyvon

I was on a Modified Folfirinox which has been researched to decrease side effects and increase tolerability. Were you on a Modified Folfirinox regime? 

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