Chemotherapy

A support group for everything about chemotherapy, being treated and side effects. Tell others about your experiences and get answers to your questions.

Folfox chemotherapy

dankel82
Posted by

Hi Everyone 

wondering if someone can help me or has been through the same. My Dad got diagnosed with rectal cancer in January and had 6 weeks of radiotherapy and chemotherapy together which had little response at all and never really shrank the tumour much. So they recommended my Dad has a pelvic exenteration which was a massive shock as he is very active and pays golf 3/4 times a week so he was shocked to hear this. Anyway because treatment hasn’t worked and they said this was his best chance he decided to have the op in September. He got his histology results back which was all clear margins and nothing in the lymph nodes which is great. It’s been a long recovery but my Dad is getting there and back driving now - no golf yet tho. One of the biggest things is learning to deal with 2 stomas but he’s getting there and getting stronger each day.

The oncologist now wants him to have 6 months of chemo (folfox) which has come as a shock as we got told having this op is a cure and especially with nothing in lymph nodes aswell. Just feels he’s just getting stronger now he has to go through strong chemo. Has anyone else gone through this or not opted to post operative chemo? Any advice would be great. Thank you 

Danni 

Catsnsnacks
Posted by

Hi Danni

My Mum is currently on cycle 3 of folfox although her situation is different to your Dad's. She has stage 4 bowel cancer which has metastasized. We were told that this type of chemo would be to contain the spread and mop up any rouge cancer cells that could be elsewhere so it sounds to me like the chemo is to mop any possible cells that could be lurking around. I read a thread the other day about a similar situation to your Dad and it looks like such a personal choice whether to opt in or out. I will try and find it I cant remember if it was on this site or on Bowel Cancer UK.

If you have any questions on folfox I can try and help

Take care 

Vanessa

Catsnsnacks
Posted by

Hi Danni,

This is the thread I was talking about 

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/breast-cancer-forum/171154/what-to-do-for-the-best?Page=1#1278285 

It was in the breast cancer forum but everyone was discussing the pros and cons of chemo in a similar situation as your Dad so it might be helpful for you?

Vanessa

dankel82
Posted by

Hi Vanessa 

Thank you so much for your reply. Sorry to hear about your Mum and hopefully folfox is working for her and she’s coping ok on it. 

Thank you for that thead I will have a look at that, yes it’s such a worry because obviously my Dad’s histology report from operation came back with nothing in the lymph nodes and all clear margins so didn’t think any chemo would be needed. My Dad is just getting stronger now and it’s been a very tough couple of months seeing him so weak and feeling so low from this drastic operation and Learning to cope with 2 bags was hard. I don’t want chemo to make him weak again. 

How is your Mum coping with it? Does it make her weak and sick or is she coping ok? How old is your mum Vanessa if you don’t mind me asking.

Thanks again for your reply

Danni xx 

Catsnsnacks
Posted by

Hi Danni

It’s a rollercoaster isn’t it? How is your dad coping with the thought of having chemo? How old is he? From what I’ve read on the forum everyone reacts differently. It’s just so hard watching on isn’t it even though you know it’s for the best. 

Its a bit of a mixed bag for Mum. She sailed through the first cycle but they had to delay the second because her blood work wasn’t good enough. She has her infusion on a Tuesday and she generally feels nauseous until she is disconnected from her pump which is disconnect on the Thursday. She normally stays cuddled up on the sofa with the cats on those days. But on her week off she is back to normal and goes out with her friends for lunch. Some days she is more tired then others but she’s coping well. She’s 59 so they are throwing everything at her.

X

dankel82
Posted by

Hi Vanessa 

I know it really is and it’s so horrible to watch them go through it all. My Dad is 68 but he’s so active and fit he’s a golfer and plays around 3 times a week  even days before his operation he was on the golf course. 

They told him this operation was the only cure for him which I still sometimes question why he had to have his bladder out to but they know best I suppose. 

My Dad wasn’t to keep on having chemo as it’s took him a while to recover from this op and he’s still not fully there yet and didn’t want to feel any more worse but as he’s getting stronger he thinks he has to do this last but as he’s come this far and you only get a certain time frame from op to have it to. 

Yes your right everyone reacts different and you always seem to hear the bad stories and not the good ones. 

Yes that’s what my Dad will be having a pump and they disconnect it after 3 days after every infusion. That’s great tho that in between sessions your Mum feels good tho and can go out with her friends. She’s still so young at 59 iys horrible how it can effect you at any age. How many cycles does your mum have to have? My Dad has got to have 12 I think every 2 weeks.  Danni xx

Catsnsnacks
Posted by

Hi Danni,

its such a tough decision, I bet he just wants to be back on the golf course. Whatever he chooses is the right decision and you are right everyone speaks about the bad stuff not the good stuff. When does he need to decide by?

Mum is initially on on 8 cycles which takes her up to January but they might reduce it to 6 depending on how she copes with the strength of it. She has it every 2 weeks too, so goes in on a Monday for her bloods and to see the Dr and then Tuesday is chemo day. The cats are happy on a Thursday because they can sit on her lap again, it's a bit tricky with the pump because she carries it around in a bumbag.

I still can't believe how many people are going through the same experience. The first time I went with Mum to get her blood work I was shocked at how busy it was in the oncology department. It so unfair.

x

dankel82
Posted by

Hi Vanessa 

my Dad has got to make his decision this week but think he’s going to go ahead because if he doesn’t there’s always that what if? He can always stop but he’s pretty strong my Dad so hopefully he will be ok with it. 

He cant wait to get back on golf course and also go and have a pint to but obviously chemo will put a stop to that I would of thought.. think my Dad is having 12 cycles they said.. 

yes I know it’s so horrible to see all the people sat there, I never realised how many people lives are affected by cancer which is scary. Thanks so much for that thread tho and good luck to your Mum xxx

Catsnsnacks
Posted by

Hi Danni,

No worries at all lots of love to you and your family too 

x