Due to start chemo. Advice

Hello,

I’m 43 and I had surgery on the 13th October, surgery went to plan, I had a right emergency hemicolectomy. I’m currently awaiting an appointment with the hospital to start chemotherapy. They are offering either FOLFOX or CAPOX (the consultant will decide). I spoke with the specialist nurse last week and she reassured me my hair will get thinner but won’t fall out so I’m getting it recoloured on Wednesday.

I have been told to take a warm scarf to cover my mouth with after chemo as the cold affects the throat sensations and gloves to avoid touching anything cold. 

please update us after your first session.

Rachael x 

Just wishing you all the best with your chemo

.I had capox so slightly different 

Why not click on peoples user names to read their stories so far and see how they managed

Kath

Yes I’m new to this. Was hoping for a good response. Maybe I posted at a wrong time. Good idea about clicking on names, I’ll have a browse thank you:)

Hi Gem2023  I am about to start chemo with FOLFOX too. Just waiting for a date. Had a colostomy operation in November. I know Kareno62 put together this list of tips and advice: chemo-top-tips-updated

Hi Gem2023 and a warm welcome to the board. Good to hear that you’re now fit enough to have chemo - if you click on my name then you’ll see that my recovery was a bit slow too.

Everyone reacts differently to chemo but there are lots of pills and potions to help you through it. I had Capox (capecitabine and oxaliplatin) and didn’t lose my hair. You’ll be given antisickness meds but I didn’t struggle too much with nausea if I’m honest. The main side effect that most people get is a reaction to anything cold so make sure you wear gloves outside and keep well wrapped up. It’s a good idea to cover your mouth with a scarf when leaving the unit as the chilly air can make your lips twitch which is a weird feeling. Anything drinks need to be warm so if I fancied a ‘cold’ drink then I used to add a splash of hot water to it to take the edge off. Wear gloves to get anything out of the fridge or freezer - I bought a cheap pair with little grips on the fingers and palms which were great for driving too.

Its also important to keep your hands and feet well moisturised - Aveeno with Shea butter is often recommended and you can get that on the high street. How long does it make you poorly for? My first couple of days after the iv were the worst as my arm was very sore but I had a picc line fitted then which made a big difference. It helps to keep a bit of a diary as you may find a routine develops and you know which days to take it easy and which days you. An plan treats for.

Sometimes the thought and reputation of chemo is worse than the actual experience so go with an open mind and see how it goes. The nurses will take good care of you and you’ll be given a 24 hour support number in case you’ve any concerns.

Lastly here’s a link to a post that we put together which may help?

 CHEMO TOP TIPS UPDATED 

Take care

Karen x

Hi Gem2023,

Sorry hear you had a slow recovery but have made enough progress to start chemo.

I had a low anterior resection with ileostomy (reversed in May 2023) in November 2021 and started 12 cycles of FOLFOX via a PICC line in January 2022.

Everyone reacts differently to chemo and side-effects vary enormously person to person.

In my case, my hair thinned out, but had grown back three months after chemo finished. I didn’t suffer from nausea and maintained a good appetite throughout. I got a couple of minor throat infections, which were sorted quickly with antibiotics. My nails to my thumbs and index fingers became cracked and ridged and only ‘grew out’ six months after chemo. As the cycles progressed fatigue got cummulatively worse but my energy levels were back ti normal 6 weeks post-chemo.

Perhaps the worst side-effect was the neuropathy. The cold sensation wore off  three to four days into each cycle so was not a problem. Numbness and tingling in hands and feet was persistent. So much so that my oncologist reduced the dose of oxaliplatin after cycle 5 and stopped it after cycle 9. It is important to let your oncologist know of any persistent neuropathy side-effects as soon as they occur so dosage can be adjusted accordingly. Your treatment will start on the highest dose for your height/weight.

I have recovered well from my ileostomy reversal and am now eating and drinking  whatever I want. Bowel movements have also settled to a ‘new normal of 4to 5 a day, which is more than manageable. I rarely, if ever need to use loperomide.

The only remaining side-effect, although it does’nt affect my quality of life too much, is peripheral neuropathy to hands and feet. The feet more than the hands. Numbness and pins and needles are persistent. 18 months post-chemo I fear this condition is permanent, however it is something I can live with.

Sorry for the length of the reply!

Good luck for your journey. Top tips: a positive attitude and willingness to be adaptable!

Could I ask, how quickly did your hair thin? 

Hi Rac

To give some context, I am a 67 year old male, so my hair was quite thin to begin with.

After cycle 2 (4 weeks) I noticed hair loss when showering. Loss continued for another couple of cycles then stopped. By then I had it cut very short. Regrowth was quite rapid once chemo had finished. In fact my son swears my hair is thicker now than before treatment!!

Hi Rac 

Do you have a thick head of hair ? My mum has and although it thinned a bit I never saw her scalp once . Also it did start to regrow . I noticed more her hair texture changed but resolved once chemo stopped . She had it two years in a row as she was a stage 4 patient and both times it was never an issue .

She did however grow very long eyelashes . 

I wish you every success .

Court x 

Thank you for your reply. Yes I have very thick hair, I only ask as I’m due to have it recoloured on Wednesday. I don’t have a chemo start date yet though, my appointment to sign paperwork should be shortly after Christmas. 

Rachael x