For people having an ileostomy or colostomy or living with a stoma. Support each...
A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
Hey all just started 5 weeks of chemoradiotherapy and wondered if anyone else also just started - just looking for some ‘buddy’s’ going through the same, kinda like an NCT group for this literal pain in the ass!
Days 1 & 2 were fine, day 3 hit me today with lots of feelings of sickness so started the anti sickness tabs!
Anyway say pls come and say Hi, even if you’rE further along or have completed it.
all my info’s in my signature so won’t repeat it...
I finished 5 weeks chemoradiation in June and have just today had my follow up scans anxious time now waiting for results
My main symptoms have been tiredness and I take the anti sickness tabs when I need them . The treatment wasn't as debilitating as I thought & I was lucky I didn't get any nasty side effects from the chemo.
When the treatment finished I took one extra week off work & then went back it's not been easy but manageable . Have also been back open water swimming. Might be encouraging as I see you are a triathalete . Just do what ever you feel able to and take one step at a time
thanks for the reply. Wow so you have to wait a while for the scans after you finish then? Is that CT & MRI? Is the delay as if keeps working after the treatment has stopped? I have 3 treatments of Papillon after my 5 weeks - they are once a fortnight three times.
I walked out of the meeting to collect my chemo tabs shellshocked last week! All the potential side effects really scared me! Calmed down now I’ve started them though. Glad you didn’t get many side effects.
I raced triathlons from ‘02 through to ‘17 but have had plantar fasciitis for 2 years. After seeing 4 specialists was just about ready to return to running when this struck.
Just set up my turbo and see how that goes, they said my bums likely to be sore from the radio in a few weeks (and can’t use chamois cream!) so might only get a few weeks in. Impressed you’re back in the open water! Good on you mate keep it up, what distance & races do you do?
Yes I had to wait 8 weeks as the radiotherapy & chemo are still working to shrink the tumor then hopefully If the MRI & CT scan show it has shrunk enough I will have surgery to remove the rest
Yes I too was shell shocked when I started and read all the side effects and well meaning friends telling me all the things I wouldn't be able to do . Just listen to your body . Hopefully you won't get too many side effects but watch out for the sore bum I got this in the last 2 weeks keep using the creams they advise from now e.g. E45 and Aloe vera gel
I also had a teaspoon of Manuka Honey every day & am sure it helped
Before I was diagnosed I would regularly swim a mile to a mile and half 4 times a week . I don't enter too many competitions mainly the serpentine every year. I started back doing 500m and can now do 1000m which I'm really pleased at all things considered also helps take my mind off everything
Hi Tri-Rich and welcome to the club that nobody wants to be in.
just thought I would say hello, I am not the patient but my husband is. I notice Peacock 62 has already been in touch, peacock 62 and my hubby started treatment pretty much same time and again five weeks chemo radiotherapy. He too has just had scans and awaiting results so everything crossed.
slightly different for hubby in that he was taken off chemo twelve days in due to vasospasm apparently rare 5% chance. He was fit gym goer and cyclist so shock to have chest pains, these went when chemo stopped.
oncologist said at start radiotherapy does 90% of work, he was on the whole ok during treatment just got more tired as weeks went on but he also had long journey each day for treatment.
best of luck, this forum is good source of support and knowledge from others is very valuable I have found.
Wow that’s a long wait! Fingers crossed for your results mate! Not heard about the honey before how does that help?
lots of people say exercise really helps, last few days a good walk has really perked me up! Good oh you for hitting the lake / pool again.
Mind me asking if yours is lower rectal too? Everyone I spoke to with Bowel seemed to have an op with no chemo / radio so I wasn’t expecting all this. It is what it is though just need to crack on through it lol
Hi Process thanks for your reply, and fingers crossed for your husbands results. Everyone says that side effects are so individual no one knows how anyone will react. I was told the same that the main thrust is the radio therapy - the tabs just support.
I feel his pain, I have to travel 40 mins for the 35 seconds of treatment ha ha
I hope so, i’m Just easing my way into it lol Hoping to find people in a similar position to chat to really for advice and support.
Good luck with the results :)
Hi Tri_Rich and a warm welcome to the board from me.
Its 3 years since my radiochemo so I’ll leave the up-to-date tips to those better qualified! Just wanted to say that chemoradio seems to be used in rectal cancer rather than those further round the Bowel and I think it’s to shrink the tumour so they can remove it with clear margins (ie. taking away clear surrounding tissue) and then hopefully still have enough bowel left to rejoin. My tumour shrank from 4cm to 1cm and others have had a total response.
Pleaee keep up the exercise/cycling as it really helps to stay mentally and physically fit. If you need to use the chamfor cream then check with the radiographers as it’s really important not to use things that might include tiny metal particals like zinc cream/sudocream. cyclingjohnny do you have any advice?
Thanks so much for your message, for some reason it made me cry. I think it’s because at the moment I’m taking one day at a time but to hear that it worked gives me hope. Appreciate everyone is different but you need to hear stories like yours to give you a kick up the bum (literally haha). It’s great that despite you being on the other side you are still here to support others.
I’ll defo keep up the exercise, we have a bouncy Cockapoo who will drag me out if nothing else will lol
thanks for the tip re the cream
Thanks again, Rich
Hi again Tri-Rich if you are looking for some more good news stories someone on the forum for Bowel cancer uk asked the question re stage 3 cancer and got lots of replies from people who are long term survivorS and Court who posts on her her mum is 10 yrs post diagnosis. Hope it helps.
Hi My partner started chemotherapy yesterday all went well and pleased to get through that first hurdle - six months to go. on Florourcil and Oxaliplatin forthnightly intravenously.
Had a 5cm lowish cancer of the rectum removed successfully Stage 3 I think. Cancer cells found in 2 out of 9 lymph nodes removed. Has a temporary ileostomy. Anyone else on this kind of regime nice to be in touch you feel so alone with it and scared.
Ah that’s great thanks for sharing process really appreciate it :)
Yes mine is rectal cancer approx 7cm up I was told the chemoradiation was to shrink it so they could remove the rest by surgery
I got all my blood results online and when I noticed after 2 weeks some were dropping rapidly which means I think you are more liable to infections I read online about the honey I'm not sure if it's coincidence or not but the week after I started having a teaspoon a day they shot up to normal again
Also walking really helped some days I was just too tired so don't beat yourself up if you can't manage things
hi Tri_Rich, and hi to Karen hope your well, regarding the chamois cream, i used muc off chamois cream, as i was told everything in it is natural,i have pm you rich, take care john.
I had a 5 cm rectum tumor removed last year and have a stoma, scan after operation told it had spread to liver and lungs did 6 months of 5fu chemo tumors disappeared. Yes l was pleased the images showed no tumors encourging but was told they would be back in 6 months and they did back I am now on another 6 months of this shit on week 7. You will know if the chemo is working by your cea tumor markers when you have blood taken before chemo every two weeks. Not had my stoma reversed it never bothers me still do rambling, cycling, badminton , snooker. Please listen to your body if it feels tired REST usally days 4-6 after chemo is given. After your first 6 weeks you could fell rough, myself and several others on the same treatment had the dosage reduced by 20% . Mouth ulsters, sepsis, red face, fingers nails head aches had them all, best off luck and keep smiling.
Bye for now
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