Treatment Starting After Easter - how do you manage symptoms?

Hi Freya73 

Welcome to the forum. Side effects seem to vary from person to person as we all react and cope differently with treatment. Personally i had bad wind pain at the beginning so cut green veg which helped. My skin was sore, i just kept applying all the creams and went comando as much as poss. I took paracetomol and anti biotics all the way through as instructed by my team. Towards the end i had a lot of mucous and painful bowel movements, you just have to grit your teeth and get through it. Long term i had painful feet which have now gone back to normal. I still get urgency and pain sometimes and fatigue but this is all improving with longer periods inbetween ( i finished treatment nov 24 ). My hips were tight after but this is improving if i keep on top of mobility exercises. I feel i got through pretty unscathed compared to some. I would say to start moisturising now to get your skin as good as possible pre treatment. Sending hugs. Xx

Hi Bungle1. Thank you for reaching out to me. I appreciate your very honest description of your experience and how you are coping day to day. Also thanks for the suggestion to start moisture cream now. I worry most about the long term effects and how I will manage these. I’m sending you hugs because you are positive and pushing through each of these side effects and helping me have hope. Thank you again and again. Xx

Hi Freya73 Easier said than done i no, but try not to think about any long term issues, not everyone has them and you could be fine. Just deal if they arise. My oncologist isnt the slightest bit concerned about me just says its still early days and that im doing well. Xx

Hello Freya73 

A warm welcome to the forum although I am really sorry to hear of your diagnosis.  However, all of us on here have either been through or are going through treatment right now and we have lots of tips we can share.

With regards to side effects.  During treatment I had constant diarrhoea, I wore Tena pants to and from treatment, I never actually needed them but I felt that little bit safer.  My appetite was really affected and I supplemented with EnsurePlus drinks which provide all the RDA needed.  I ate strong cheese on toast with mustard and onion every day - it was the only thing that hit the spot!  But this was my experience, the best advice is probably to have lots of fast easy meals you can stick in the microwave, anhything easy as fatigue really is a common theme.

The immediate side effects come on very gradually, and certainly not all at once; probably towards the end of the third week.  Ongoing effects are an ongoing discussion!  But this is a really helpful forum and we have all been comparing notes about sore hips, fragile skin, bowel and sex problems.  I should say that not everyone has those, there are many people who have had treatment and their lives go back to normal; it may be a new normal but one they are really happy with, none-the-less.  So I am hopeful that you are one of those.  And if you do have long-term side effects it would  good to post on here for advice - the forum is widely read and someone, somewhere, will have a shared experience.

So please let us know when your treatment plan starts, you have lots of virtual friends on here to help on the way.

Big hug

Irene xx

Thank you so much Irene. This is so helpful and I’m feeling more prepared and in control. How long ago did you finish your treatment? I hope you are feeling better and your life is feeling more normal. Do you work? Please don’t answer anything you feel uncomfortable sharing. I am a counsellor and used to asking lots of questions! So just ignore me if I probe too much! 

Hello Freya73 

I really don't mind answering any questions, you aren't probing in the least.

My last active treatment was in March 2022.  I had already retired when I was diagnosed although I always qualify that by saying I stopped physically going out to work but then worked just as hard, it just took a different form!

I definitely have a new normal, I have ongoing issues with my hips (there is another hip thread on the go) and am fatigued much more quickly than prior to treatment.  But I should stress again that not everyone gets my issues, many go through treatment and are back to their old lives.  But I am extremely grateful to be here and well.

Irene xx

Thank you Irene. Is your new normal something permanent? Is it getting better or will it gradually need further investigations and treatment?

I saw a very kind oncologist fairly recently who said, when I told him about my fatigue, I think you have a new lower bar for your fitness levels that you may have to come to terms with.  And I have, and have accepted that after four years it is highly unlikely to improve.  However, I do the advised self-help, ie exercise and rest when I need it.  But my hips are definitely under investigation! x

Hi Freya73 ,

As Bungle has said side effects can vary greatly from person to person although there are some common threads that run through, just try & remember we’re all very individual & so are our reactions to treatment. 

My treatment was chemoradiotherapy Monday-Friday for 23 days, weekends off all treatment (I loved weekends!).

Personally I had little to no side effects from the chemo side of the treatment, I had a short infusion of mitomycin on day 1 of treatment & capecitabine oral chemo twice daily thereafter. A day or 2 following the infusion I had very slight nausea & a couple of small mouth ulcers popped up but it was something & nothing & only lasted a day or 2. 

Radiotherapy, the sessions were over quickly & completely painless, the worst part being laying there with a full bladder. Week 2 I got a bout of radiation cystitis, it was uncomfortable but having been told at the time it can’t be treated like bacterial cystitis I’ve since learned that some on the forum have had relief from over the counter cystitis treatments. The skin reaction probably started week 3-4 for me, the skin in area being targeted started getting slightly red & warm & that increased over time & although a bit sore my skin didn’t break down at all. Best advice is moisturise the heck out of your nether regions & tell your radiotherapy team about any reactions you’re having, they have a plethora of lotions & potions. I had no diarrhoea, in fact I swung completely the opposite way & had to take stool softeners throughout. I think we will all testify that bowel movements can be pretty painful towards the end/shortly after treatment. My side effects peaked around day 11 post treatment as the radiotherapy continues to build in your body even after that last session. 

By far for me the most prevalent side effect was the fatigue, I needed a nap when I returned from the hospital each day & was still in bed by 9pm each night. It’s some of the best sleep I’ve ever had!

I'm now almost 8 years post treatment & have some hip & lower back issues that began in ernest possibly 3 years ago, these are currently being investigated. 

Please do try & keep in the forefront of your mind though that we are all very individual & so will be your journey through treatment & recovery. 

Nicola 

Thank you so much for this. I have creams, lotions, sits bath, stool softeners, comfy cushion to sit on, good books, a painting easel and your amazing support. What more can I possibly want!!!! I feel so lucky to have found you all. Big hugs and thanks.