To chemo or not to chemo?

[Cardi]

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

 

 

[Lori]

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

 

 

 

[Cardi]

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

[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

[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. 

[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? 

[Skippy]

To have chemo or not was one of the hardest decisions for our family. My bro was 74. Strong fit man, never smoked, and a non drinker. We had never heard of this cancer before his diagnosis. He was Eating again and had a reasonable strength and recovery after having the lucky option of a 'whipple op'.

He was afraid of the system of chemo as he was beginning to feel so strong again. He had seen his wife having chemo some 20 yrs ago so he was always afraid of it. 

Sadly within 6 months post Whipple; after a set of scans, he was inf of a 'tiny spread to lungs and liver' He did try three chemo sessions Gem* but Covid lockdowns halted any further invitations to chemo sessions and he was so happy to not have any. 

Palliative chemo was eventually made clear to him of the ability of 'slowing down the spread of the disease giving him more time' - but for how long -is dependant on each individual. His children urged him to pursue the chemo. He and I (his sister) didn't, as he was more distressed with 3/4 days of the after chemo affects. At 75 he decided wanted a quality of time rather than a length of time and being bed bound. Each person has to make their own personal choice. I do feel if he had been years younger he would have taken a different stance.  Such a difficult one. My brother was willing to try the chemo. it wasnt too bad an experience, but he felt he couldn't afford the time just to go downhill with 'treating the disease'. For him it was the right to choose.

A friend of mine, diagnosed also with PC but no ' whipple ' was offered to him refused chemo he was quoted Stage 4, both my friend (with no treatment) and my brother (with very invasive treatment) had the same 18 month's of life span, they were able to socialise, one even returned to work,  before it eventually overtook them both. 

The medical care around both men were so experienced, and wonderful and both were kept so very comfortable. 

Tests eventually were conducted on my brother DEC 2020 (who was beginning to suffer fluid retention in his lower limbs from waist down ) and we received a shock diagnoses - a "limited time of months" was given. He was still jolly, sociable and chatty. Forever the optimist. He was able to attend to his own personal care needs.

 

At the end of FEB 2021 my bro was still eating small foods well, he was chatty and sociable and sleeping well, in no pain, had lots of wind burps etc but he was still able to move around pottering slowly, as fluid in his lower body began hampering his ability to walk far in his home. His energy sapping on walking. His Dr admitted him by amb to hospital for a full examination.

We couldn't believe then -he was inf he had maybe " 3 weeks" He was on no medication (but those Creon tablets he took with his daily food intake.)

He eventually began refusing foods and his intake was all soft drinks etc. Little and often.

It was 3 weeks, and in the latter week he was administered morphine where he was comfortable and slept off and on hour by hour. He passed away peacefully in his sleep. 

This is our personal exp of this disease. 

 

[Arthur0601]

Skippy, thanks you so much for sharing your personal experience. I'm sorry, you all had to go through it. I am glad for you and your brother that the end was peaceful. 

[Carol Jane]

Dear all

 

Useful to follow these threads. We are at early stage of my husband's PC IV diagnosis so we do not know which way he will go.  He is 59, and has previous history of 2 successful operations for bowel cancer in 1989 and 2019. In 2020, genetic testing showed non hereditary- Lynch's syndrome which means his body had an early genetic mutation and does not fight cancer cells naturally. 

 

Biopsy is on Monday for pancreas tissue to determine possible treatment- immunotherapy. He is concerned about quality of life as his has been very good so far- we went on a week's cycling holiday at the end of April this year doing up to 40+ miles a day....So what treatment is offered and whether he will take it up so not yet known...

 

Various appointments set up for next week. I do have a concern that he is having a swollen tummy, presumably due to build up of fluids. Hope to find out more from Hospital about this next week. 

 

I know each person is different in what they are offered and how they react. Good to be able to access these personal experiences so easily. Having information, whilst also taking it one step at a time and checking with hospital or PC UK nurses does help.