Stage 4 bowel cancer

lisa7

Dad will be starting folfox soon. Any advice and experience with this chemo.

Hi everyone.
Dad is been discharged today and will be starting folfox soon. Primary cancer was rectal. It was removed 12th of march. Then secondary spread to liver- 6 spots. Is folfox for treating the liver aswel. Thanks for all your support. It has been a tough two weeks for dad. Best wishes to you all @Bear G @greyhound gal @jj @determinedjoan @Gypsy @angelj :x::x:

Lirio345

Hi @lisa7, that is brilliant that your Dad is being discharged today, - there is nothing better than being in your own bed.
FOLFOX is the standard first line chemotherapy treatment and yes it can attack the liver tumours as well as they are essentially Bowel cancer tumours that have taken up residence in the liver.
The oncology team will go through possible side effects, - they have to discuss them all, but most people only get a few. The team will also prescribe medication where appropriate to minimise side effects. Chemo normally starts about 6-8 weeks after surgery.
It would be good if your dad could spend the next few weeks eating well and building up his strength, and starting a little gentle exercise such as walking. Stay in touch, Kim :x:

Catt79

Hi @lisa7 I recently finished six months of Folfox chemo for rectal and liver tumors. On the whole it was fine and did a great job shrinking both.
I believe Folfox is oxaliplatin and 5FU. I had treatment every two weeks and it involves about five hours in the chemo ward getting infusions (which I actually found a nice experience and I always felt kind of special and safe☺️). I was then sent home with a pump (basically like a mini infusion) of 5fu which I kept on me (in a bum bag type thing) for 48 hours. I had a picc line fitted for this. This is where a teeny tube is put into a vein in your dad's upper arm so the chemo pump can be attached. I LOVED my picc line as it can also be used for the oxaliplatin in hospital and for all blood tests, so no cannulas or needles for six months 😀
I initially had very severe side effects from the chemo and couldn't get out of bed for five days. This is NOT NORMAL so my dose was reduced slightly and then it was all straight forward.
I tended to feel worst (nausea and fatigue) from about days four to seven after treatment started each fortnight. I just lay on the sofa watching tv and eating biscuits. Second week I was pretty much normal. I was also able to go out with the 5fu pump on as it is pretty discreet if your dad just wears a jacket to cover it 🙂
Apologies for mammoth post! I was a bit scared getting my picc line fitted but needn't have been as it is actually a piece of cake. Best of luck to your dad and hope it all goes smoothly, love Cat :x::x::x:

lisa7

Thank you @Lirio345 for all your best wishes and advice. Thank god dad is improving and is back walking :x::x:

lisa7

Thank you @Catt79 for all your great advice. This is all new to us. Just want to be prepared. Ive told dad all the kind people on forum are writing to us with great advice. Dad feels more reassured. Sending you best wishes cat and @Lirio345 :x::x:

Gypsy

Dear @lisa7, truly wishing your dear Dad all the best. I'm so glad he is well enough to go home after all he has suffered and both of you too. Sending love, Gyspyxxx

Bear G

Hi @lisa7
It’s great that your Dad is home and now looking forward to chemo.
I haven’t been on folfox but as you’ve heard, it’s a standard chemo that can have great results.
The best advice I can give is to encourage him to view it as HIS chemo, it’s his friend and ally, it’s there to help him beat the cancer. I truly believe this type of mindset makes a difference.
Big hugs
Bear
:x::x:

angelj

Hi @lisa7 I’m glad to hear your dad is home now, it’s so much nicer in your own environment. The FOLFOX was not as bad as we feared, you don’t get all the side effects but likely to get some and you get used to the pattern of ups and downs each cycle. You will get plenty advice from the hospital. Regular temperature checks are important so ensure you have a reliable thermometer. A scarf and gloves should always be to hand. To mark progress we used a chart to tick off each cycle which helped psychologically. Plenty movies tv books for the sleepless times. Keep in touch, best wishes to your dad :x::x:

Chelts

I've just finished 11 cycles of folfox, which I have to say I did not enjoy.
I went thru exactly the same routine and effects as @Catt79.
Things weren't too bad until cycle 4. I suffered really dry lips which was cured with Vaseline. I then suffered metallic mouth which was horrible- everything tasted like cardboard and I lost a lot of weight thru not eating.
At the end of cycle 10 I suddenly developed peripheral neuropathy which I am still really suffering from badly. My oxaliplatin was stopped.
Partly due to my ileostomy my diarrohea was bad and i was prescribed up to 24 loperamide a day to cure this.
In the end it was worth the suffering as my CT scan has come back clear and my CEA levels are at 1.

jj

@lisa7
So good to hear that your dad is back home and they have a plan of treatment to go forward. As My husband has not needed chemo as yet (fingers crossed and praying) I am unable to give you any advice, but you will get great advice from all the members here.
My advice is to ensure that your dad remains positive. He needs to be “mentally prepared” to go forward despite the list of side effects of chemo. When my husband had to postpone his surgery date, because he was told on the date of admission, that he would need a permanent colostomy and that due to his past op, resection was not advisable. This threw both of us and my husband asked if he could postpone the surgery so he could get his head around it, and his surgeon obliged, he said, you need to be mentally prepared, so that your healing will be better. And my husband is doing really good, 3 weeks post surgery and he was able to take local buses and travel around do a bit of shopping etc. So that’s my advice to you
Regards
Jane

Jaap

My mother does her 23rd and final cycle of folfox tomorrow week. This has been spaced over 20 months.
She is 71 and has handled folfox extremely well. Only the odd bout of constipation for a day or so, and not every cycle if she takes laxido at the right time. She also has what she calls "slimy" hands due to the neuropathy, but she can still do everything with her hands that she did prior to receiving folfox.
I only wish she could continue on with the folfox after her 3 month break from May to August, as she looks a picture of health. Only thing is the folfox is losing its effectiveness now.
Folfox did some damage to the liver spots my mother had!💪

lisa7

Thank you @Gypsy: dad is happy to be home. Please god all goes well on wednesday with oncologist. :x::x:

lisa7

Thank you @Bear G thats great advice chemo as ally. I will tell dad this. Meeting oncologist next wednesday. We will keep strong and positive :x::x:

lisa7

Thank you @Chelts Thats great news that your scan is clear. You are a fighter. Stay strong. Sending you best wishes. Thanks for your advice. Some of the symptoms are very hard. We have it all ahead of us. Meeting chemo team on wednesday.:x::x:

lisa7

Thank you Jane @jj hope your both on the road to recovery. Sending best wishes. Were going to build up our father strength this week as we prepare to meet chemo doctor next wednesday.:x::x:

lisa7

Thank you @Jaap sending best wishes to you and your mum. Wonder would a pet scan help before your mum gets a break. See what the team says. Thats great that the chemo worked on liver. Meeting chemo team on wednesday. Fingers crossed :x::x:

Jaap

Hi @lisa7. My mother gets a CT scan in 2-3 weeks, then all being well she'll get a break from chemo until August.
My mother hasn't had a PET scan since September 2016 when there was a chance of a liver resection.
How did your father's meeting with the oncologist go today? Is he getting Folfox soon?

lisa7

Hi @Jaap dad app got rescheduled to wed 22nd as oncologist is away. Hopefully be starting soon as his sickness is under control. Hope you and your mother are doing well. Will update minute i come out of app. A little bit nervous for the road ahead but keeping positive.

Jaap

Hi @lisa7. Good to hear your dad is getting stronger.
The sooner you get a plan for his chemo the more content you and he will be, as you will be taking steps to treat the cancer.
And an extra week's wait to see the oncologist means an extra week for your dad to build himself further up physically.
My mother just had her 23rd cycle of folfox today..35th chemo cycle overall. She will have a 3 month treatment break now..which is great as no more hospitals over the summer!😀