Starting Chemotherapy soon

Bless you. I finished 6 months of treatment CAPOX in Feb this year.

The hardest thing is starting it all - as you don’t know what to expect. You will see the oncologist throughout this period in year week 3 of treatment.

OXYAPLATINE IV will make you feel very cold and hypersensitive to low temperatures. I found i could not touch stainless steel door handles and going into fridge was a trial. 

Wrap up warm after the treatment. Rest whenever you can. You will loose weight in weeks 1&2 but gain a bit in week 3.

The tablets CAPECITAMINE are ok to take. 

Good luck. 

Kind regards

Paula xxx

Hello there, 

Nice to hear from you. I am new to this as well, maybe running a few weeks ahead of the process. I was diagnosed in February and had a high anterior resection in March. My surgeon made a successful join, so luckily no stoma, but I had 2 bad lymph nodes and some vascular invasion. I am 53.

I started my first cycle of chemotherapy last week (capox) and am now on day 7.

I am sure, like me, it was a big decision for you to start chemo in the current world situation. Did you have any doubts? I made my decision to go with it, as I wanted to do everything possible to beat this. I am also fortunate to live in a part of the country without a high population, and a hospital with a completely separate oncology unit.

We have put things in place at home according to guidelines for vulnerable people, even separate bedrooms, to reduce risk as much as possible. My husband is only allowed out to walk the dog very early and late! My son has moved out for the duration as he is a key worker.

As for the chemo, I am sure you know that everyone is different, and I can only share my first week experience! The infusion was OK, about 2 hours. My arm started to be sore about halfway through, but I was given a heatpad which made it easier. I was told to wrap up warm as the cold would affect me. I was absolutely roasting!! The weather has been so warm that I didn't need any extra clothing. The first day passed OK, but I had very little sleep the first night. 

Taking the tablets is a bit daunting. The following morning I forgot about the hands and feet thing, got out of bed onto cold tiles and washed my hands under cold water..... Aaaaarrrrggghhhhh! Shooting icicles! Not a good idea! Wear slippers and gloves whole doing anything in the kitchen. I have found a thin pair of cotton gloves under a thin pair of rubber gloves works well. I still need to do this after 7 days. I have also made some little felt sleeves for my cutlery as I got fed up of eating with gloves on. My husband calls them cutlery chaps! 

Days 3,4 and 5 have been the worst so far. Hard to describe the feeling, just so weird. I have had no diarrhoea (just the opposite) and only a slight feeling of sickness. I have had the 'first bite syndrome' which takes me by surprise each time.

I hope I haven't been too negative or put you off! I am generally a positive person too, and still have the feeling that all this is not really happening. So far, chemo has been unlike anything I have ever experienced, and I know I will get through it.

Take care, good luck, and let me know how you get on! 

Claire x

Hi there, surprising how quickly you forget.

yes I had all the same symptoms as you - only thing was I had my treatment from sept 19 to feb 20.

Anything metal feels too cold to touch - this improves as you go through the 3 week cycle.

i suffered throughout my treatment and every cycle i said would be my last - but i kept on going. I felt if the chemo was making me feel this bad then it must be killing any rogue cells that might be in my body.

i hated taking the tablets - but again i did.

anyway everyone’s symptoms are different.

The best feeling i had was when i was halfway through the treatment......on the downhill slope then.

i was stage 3, 2/18 lymph nodes tested positive, also EMVI positive and cells poorly differentiated.

I had my CT scan in April - and it has come back all clear.

i now get referred back to colon surgeon for screening.

Whenever someone said i was brave - i corrected them and said i had no choice.

Cancer is a game of waiting - either for results or when your next treatment is.

Macmillan nurses are fabulous.

Take care , keep asking questions - this forum is fantastic.

Paula xxx

I forgot to say - I always washed my hands in warm water plus cleaned my teeth in warm water.

i found my teeth hurt.

you bowl movements will change throughout the cycle.....be prepared.

The only thing I can say is that what you experience throughout each cycle does not really change.

If OXY IV gets too much through a canala - go for a PIC line.

good luck

paula

So pleased your scan was clear! 

Great news x

morning, I had 30 weeks of low dose chemo last year, 5FU , given by iv weekly. There are many protocols so you will need to see which one your oncologist recommends, then those of us who had similar can advise. I too was clear apart from the vascular invasion, see my name for more details if you are interested. Help and advise is here, so please ask. Take care.

Hi everyone, 

Thank you so much for all your lovely messages, I am really grateful for all the advice. Already I feel so much better and glad I found this group.

I will be having Folfox? It will be in 2 weeks cycles, I will be having a picc line fitted for which I am grateful as it seems my veins are rubbish and I was covered in bruises after all the blood tests in hospital! I will spend a morning in the unit having folinic acid and oxaliplatin intravenously and then will come home with a pump with the 5fu in which will run for 46 hours! I will then have to go back to the unit to have the pump disconnected.

We are lucky where I live there are 2 hospitals with  cancer units in close proximity and one has been kept clean from Covid 19, so chemotherapy is still going ahead.

My husband is also a key worker as he is a site manager at a local primary school, he is going into work but is totally on his own, painting and maintaining the grounds, my daughter has been staying with us to help me recover from the surgery but will soon be going back to her flat and her boyfriend. We live in a 2 bedroom cottage so when I start the chemo at least we will be able to isolate more and have seperate bedrooms!

I will certainly buy some gloves and fluffy socks as I hate feeling cold! Thanks you for the advice.

Thank you again x

Hi there,

my brother had bowel cancer and he was on the same cycle and treatments as you will be.

He found the following:

1. The PICC line was wonderful. It takes away the horrible effect of oxyalaplatin going into you via a canala, which is what i had.

2. Rest whenever your body says to rest - don’t fight it.

3. Eat well - lots of vegetables and fruit. Try not to loose weight. If you feel like eating 3 trifles then do so.

4. Fur socks and gloves will be needed. Touching any metal, going in fridges and cold water can be painful. I used to joke that i was Darth Vador with my black leather gloves on

You seem to be a very determined person, which is great.

Joining this site will help a lot.

good luck

paula

I had hemorhoids before Christmas and went to the local doctor who gave me some cream for it. It didn't go away so went back and saw some other doctors who eventually suggested I had a colonoscopy and had a lump at the entrance of my back passage and had a CT, MIR scan bad news followed including lots of visits to the hospital suggesting an operation I nearly fainted there fortunately no surgery operation followed just Chemotheraphy. Visits to the Oncology department + eventually onto Clinical trials. Like the other person the waiting to get the treatment was very worrying and stressful I read lots of macmillan books on the subject I attended a Clinical Trial meeting with other patients and told of the side effects loss of appetite, weight loss, taste buds effected Fortunately I was on the mild dose so didn't loss my hair. I have been prescribed 7 Chemo sessions and have this week had a CT scan so hoping for a good result. I am into 3 sessions followed by xeloda tablets 12 a day 4 big ones 2 little ones for two weeks then a week off during which time you get your taste for coffee and tea. I go for blood urine and weight tests prior to the treatment and a taxi picks me up and takes me home. Not sure at this stage how many more chemos are needed they have put me in for chemos til January 2021 and one on 24th December I will discuss that with the Doctor next week. I am having a visit rather than a phone call. I felt the time from the diagnosis till the treatment was terrible but once the treatment started the symptoms start to improve i.e no blood from the rectum no poo spillage and able to relieve my bowls without a laxative the tumour seems to have shrank and I do not have to inject syringes on it or wallow in a hot bath to relieve the pain. Looking forward to a successful conclusion and forget about it and return to work slowly.

I hope this helps anyone out there who is going through this.

Hi Claire 

I am new to this site and am currently finishing my second  capox cycle . 
I had emergency surgery in January due to bowel obstruction by tumour . Right hemicolectomy and recovery was uncomplicated.  Pathology showed a polyp in one node but no other. Cancer stage 3.

I have found the second cycle very difficult. Weight loss yes, weak , tired with nausea  which doesn't respond to the medication.

The side effects of this regime are cumulative,the next cycle will be worse. 

i am at a crossroad as I am ready to throw in the towel. I am not sure it is worth it or indeed necessary.My platlets have dropped very low as a result of this the oncologist wants to review capox .

I find the advice I am being given very woolly. I appreciate there are no definitive answers to any cancer question. Percentages of recurrence seem to be the main decision tool.