Cancer support thread 62 - here comes the sun (hopefully)

[WhatWouldLeslieKnopeDo]

Good evening

Our previous thread is here

If you've got cancer, this is the thread for you. Introduce yourself and feel free to ask any questions. We also welcome anyone who is waiting for cancer tests. We know how scary it can be. So don't be shy. We will happily hold your hand and hopefully wave goodbye when you get good news :)

regina Good news, hopefully everything will work out all right

Hello! Wonder if I may join you lovely people?

Just diagnosed with stage III colon cancer about 5 weeks ago after pitching up to A&E with tummy pain. Wonderful surgeon got me CT scanned and colonoscoped and in theatre within 24hours but (as I’m not 40 yet) it was incredibly out of the blue so have been trying to get my head around it all...

Chemo (Xelox) starts a week on Thursday - anyone got any experience of this? I’m quite worried about the peripheral neuropathy aspect, though it’s only 3 months and not 6 as it would have been prior to March (new evidence apparently!)

I have wonderful friends IRL but of course people don’t really understand if they haven’t been there...

Hello! I'm pretty new here and am rubbish at remembering things at the best of times! But I just wanted to say hi!

Hello addledbrain. Sorry to hear your news.

Hi addledbrain :) of course you can join us. Welcome, but sorry you need to be here too.

I've got bowel cancer too, though mine is now stage IV. I was 21 when I was first diagnosed. Do you have any of the genetic conditions or is it just bad luck? I'm glad you've got a wonderful surgeon. That really helps.

I had Xelox too, though I had the six months. I was offered a chance to be on the trial to see if three months was as effective, but I decided not to risk it. I'm glad it turned out well though. Hopefully that will reduce the risk of side effects. I had some peripheral neuropathy but it's mostly gone now.

Tayto is having the same chemo at the moment :)

I hope everyone has been enjoying the Bank Holiday weekend

Hi and thanks for the welcome!

Glad to hear your neuropathy is almost gone Leslie - I’m not surprised you opted for 6 months it is a huge decision at a time when you feel overwhelmed anyway.

I have been referred to genetics - nobody has had cancer this young in the family but several people have had bowel cancer in their 60’s - I am so worried about my children

Hi Tayto - I hope you are getting on as well as can be expected with the xelox... Let me know any tips if you can! I had plans for things to take with me for the infusion but think I may feel too manky to catch up on paperwork etc!

Have been out in the sun a bit to enjoy some natural vitamin D before the chemo starts and I have to wear tons of suncream! (Is the photosensitivity really bad?!)

to everyone this sunny bank holiday!

Welcome Addlebrained So sorry to hear about your cancer.

Glad you got the all clear Regina

Hope everyone had as good a weekend as they could. My antibiotics have stopped the pain and managed to get out again today had a meal, kids went trampolining and we all went to Groombridge Place which has a zedonk and Treetop walk, peacocks and gardens etc, very nice. Got so hot twice, might be side effect of antibiotics.

Good luck for results tomorrow Purple

Hi! Thanks for the new thread Lesley. I don't post much these days but lurk from time to time. I was diagnosed with 5cm Ductal breast cancer in sept 2016 with + lymph nodes. Had 8 rounds of chemo followed by surgery and showed PCR.

Doing fine so far- have a bit of lymphoedema and thinning hair from Tamoxifen , but otherwise; so far so good!

Sending wishes to everyone on the thread: old and new !

Hi Fresta sorry about the lymphoedema and hair thinning but glad to hear you're well otherwise

penguins that's really great :) maybe it's some sort of mega infection then?!

addledbrain fingers crossed for your genetics, and your children being clear. I have FAP so it was obvious straight away on the colonoscopy as my bowel was full of polyps. But thankfully I'm the first in my family, and I don't have children, so just me affected.

Maybe don't take paperwork the first time and see how you feel. I get quite fidgety and can't concentrate much. I posted a list of what I take in my chemo bag near the end of the previous thread, if that might be helpful. There's a link to the thread in the first post of this one :)

addledbrain sounds like you are in a very similar boat - I'm stage 3, diagnosed after a+e with abdo pain, also youngish (39). Just started second round of Capox. I'm finding it ok and actually went back to work today. The peripheral neuropathy from the poxy oxy is not fun (but with 3 months much less chance of being permanent) - stock up on gloves and I would recommend a buff for face - cold makes it feel all pins and needly. Get a thermos for warm water to drink in night. I've also been getting a lot of hand cramps but have been recommended to take tums to help. The side effects from tablets for me are diarrhoea and feeling slightly sick. I have lots of lovely anti nausea meds (zofran is the business!) and got some stronger anti diarrhoea ones which seem to be working now. Some people do get sore hands and feet so get some lanolin based moisturizer to use for prevention. I worked through my last IV but I'd just say take something light to amuse you as you won't know how it will affect you. I was sick after first but fine last time (would not advise an avocado and banana smoothie before or at any time! ). Good luck and let me know if you have specific queries. This site is great for info if you haven't seen already www.beatingbowelcancer.org/.

Hands giving up now but hi to everyone else.

I have a couple of these which keep drinks cold for 24 hours or warm for 12. They really do work.

I had to get special touchscreen gloves because I found the glass screen on my phone and iPad too cold.

Tayto how was work? And that smoothie sounds hideous I'm not surprised you were sick!

That smoothie does sound awful

Thanks penguins, 3 hours until I go to get my results. I'm absolutely dreading it

I hope everyone's had a lovely bank holiday and managed to enjoy the sun

Good morning everyone

purple good luck today did you get your decorating done? I don't envy you painting in this heat!

So my consultant said my scan results look clear but there's a thickening on my uterus and I have to go back in a few weeks for another scan, it could be cancer or it could just be radiotherapy damage. I'm half relieved and half in limbo at the minute

purple good news that it looks clear, but sorry you've still got uncertainty fingers crossed that it is radiotherapy damage

purple limbo is the worst isn't it. Hope you can put it to the back of your mind as much as possible.

I'm sat having my 5th cycle, they have just told me today that they reduced my 1st Docetaxol by 25% due to complications after my FEC and now it's been reduced by another 25% cus of my bad reaction last time. But pissed off n worried tbh.

My swollen area above the clavicle is being looked at tomorrow by my surgeon and then on Thursday by the DVT clinic, as it's in my PICC line side. So in the meantime they have prescribed me clexane injections. They are being very belts n braces which is good I suppose.

I asked how long before I could go swimming after my chemo finished my picc was out - a couple of months!??? Because of my immune system - does that sound right, seems a bit OTT ??

Leslie thanks for the link - I will definitely check that out. Those bottles look good too.

Tayto I am the same age and stage as you - what’s the face buff? Is it something soft? I read somewhere that exfoliating isn’t needed during chemo as you have no cell turnover at all - I saw an article about skin products too which suggested urea based creams and something called ‘bag balm’ which I’ve never seen before... thank you for all those tips. Am feeling quite nervous and have roped an old friend to come with me and talk nonsense (hope I don’t puke on her )

McZeba swimming pools are full of all sorts of germs and things so maybe not an exaggeration? Not that that helps much. Someone needs to come up with a plan for a sterile Spa and pool designed specifically for us don’t you think?! It could be the perfect antidote to all this poisoning and poking and prodding...

Talking of spas, I have just booked for afternoon tea and a spa the day before chemo starts. The memory of it will have to last me 3 months at least

McZeba have you seen your oncologist? Good that they're being thorough, but sorry you've got more waiting to do.

I know dose reductions are disheartening, but it will still be effective or they wouldn't bother giving it at all. The way they calculate the dose is not very sophisticated and different people are more or less sensitive, so they often need to tweak the dose. Especially if you had a bad reaction - what happened? Some of the side effects are really dangerous so it's a balance between attacking the cancer and not killing the patient. I started this chemo regime on a reduced dose because I'd reacted very badly to my previous chemo regime, and I don't think I've ever had the full dose, but it has still kept my cancer under control for two years.

Has your immune system been especially badly affected? I've been swimming throughout chemo. My oncologist specifically gave me a port rather than a PICC line so I could swim if I wanted to.

addled the spa day sounds like a lovely treat :) and good you've got a friend to go with you to chemo. Xelox was really good for my skin! It was lovely and soft. No spots, and my rosacea cleared up. Another benefit was that I didn't get bitten by insects at all that summer. Usually I get bitten lots and they swell up. I guess I smelled poisonous

Hello everyone. A real mix of messages.

The mention of polyps has rung a bell with me. A few years ago I had an op to remove some. When I went back for the follow up I was told no, not polyps, just something and nothing. Tbh I got the feeling the doctor didn't know and I am sure she wasn't the one who did the op. I was discharged and felt left in limbo. I've had same and more symptoms since. Don't know what to think.

Leslie that's good to hear regarding the dose reduction. I was just really nauseous n vomiting, weak and in bed for a week after he last dose, makes me wonder how much more poorly I would of been with the full dose!

My Oncologist sent me straight back to the surgeon and the chemo nurse n PiCC guy referred me on to the DVT clinic.

That doesn't sound much fun McZeba. You might have ended up in hospital with the full dose, by the sounds of it. You can become severely dehydrated from the vomiting. Hopefully this cycle will not affect you so badly

Year that sounds confusing. Your GP should have a report from your surgery so you could perhaps ask them to confirm whether you had polyps or not. Were they in your uterus? If it's that again then presumably they'll show up on your scan too

Sorry to hear you feel in limbo purple.. Hopefully the next scan will bring conclusive good news.

WWLKD I am seeng my GP in a month regarding HRT so will ask her then. Still haven't been able to start on the tablets as 9 days late so will have to put the appointment back.

Sorry for not remembering who it was that asked about Look Good, Feel Better but yes yes yes it is definitely for anyone effected by cancer in anyway n no you don't have to have lost your hair etc. It was a great afternoon and the freebie bag is amazing!!! Lancôme, Bare minerals, Clinique, No 7 and much much more. The volunteers and all the other ladies were great. Get yourselves signed up if you can x

Purple I'm sorry you didn't get a definitive answer, but it still sounds like positive news - let's hope it just stays 'thick'.