Hello & Does anyone know about Capecitabine?

Hi Wilma 

Wow that was quick! 

I'm 48 years old and had a stage 2 tumour removed from my rectum 8 weeks ago so we have some similarities, although my treatment plan seems quite different to yours.  I was diagnosed back in October 2020 and there was lots of debate at several MDTs  about my treatment plan as I had a lot of chemo and radiotherapy as a teenager.  Anyway, to cut a long story short my surgeon wanted me to have chemo and radiotherapy to give me the best chance of the cancer not coming back.  It turned out that having more Radiotherapy was too risky although I have had 4 cycles of chemo; Oxapaltine and Capecitabine (Oxicap).   

Chemo is of course not pleasant, however Capecitabine, in my opinion, is 100% doable and I didn't really consider not having it, although for me the plan was partly about shrinking the tumour as much as possible before surgery as it was very low down in my rectum and there was a high chance that i would be left with a permanent stoma. 

There are many side effects to Capecitabine but the dose will be tailored to you and can be altered if the side effects become unmanageable.  I had severe diarrhoea with my first cycle so the dose was reduced and I was fine with the next three.  I had some nausea and loss of appetite but not much and although I felt progressively more tired with each cycle I recovered fairly quickly.  I just had to take it easy, rest a lot and resign myself to lots of time on the sofa watching Netflix! 

I have always likened the side effects of chemo to a hangover, in so much as both are a result of poisoning your body and the symptoms are very similar in varying degrees - I can assure you I have had far worse hangovers than the side effects of Capecitabine (i'm not proud of that fact)!

I understand your reservations about poisoning your body with chemo and only you can make the decision, but for me it was about weighing up the risks and I wanted to make sure that 1) I wouldn't be left with a permanent stoma and 2) that the cancer wouldn't return.  No treatment plan is without risk and none of us can be 100% sure of what the future holds but I have absolutely no regrets about having chemo. 

I really do wish you all the best in your decision making and your future cancer free life.  

Please keep us updated (if you want to of course)

Take Care 

Melly73

Hey Melly73,

Thank you so much for this, it is very reassuring indeed. 
I will start adding to my list in Netflix 

The hangover analogy is great, really helps me to understand what it might be like, not that I have a lot of hangovers....

I don't want any regrets either, so the more i find out, the more i feel better about going planning to go ahead with it. 
Thanks again and I hope you're recovering well after surgery? 
Take care too, thanks for sharing :) 

All medications have risks, but if advised to have certain drugs that will hopefully stop any possible spread of Cancer, or reduce any Mets. caused by an initial tumour...I would say take the medication. The cancer is the more poisonous detail to be concerned about. Any drug that can fight it is to be welcomed.

Capecitabine Tabs. are a common form of Chemo. I took them for 6 mths. last year....& they reduced two small nodules in my lung. I started off on 1500mg per day for three weeks, which was increased to 1700mg.

I had no side effects whatsoever...until the 6th. cycle, when I developed problems in my hands & feet, & was taken off them.

It's nothing to do with age, people with cancer are commonly prescribed this drug. It certainly helped me.

Best of

Marianne

Hi I was on that chemo tablet along with radiotherapy befor my surgery and I was fine to get honest better than I expected to feel hope all goes well with you  x 

Hi Wilma Flintstone,

I was diagnosed in April 2019 and had Capecitabine with radiotherapy for 5 weeks then after the operation I had a further three months of Cape as part of Capox (with Oxaliplatin).

I was a bit older than you at 73 when I had it and yes, there were side effects but I found I could cope ok. I also found that the oncologist would reduce the dose if it got too much. I finished Feb 2020 and there have been no lasting side effects.

Whatever you choose I wish you all the best with recovery

John

Hi Wilma

No worries, I totally get that you want as much info as possible before making a decision.  I was initially told I would have the tumour removed and then be given the option of chemo and radiotherapy and I think if they'd stuck to that plan I would be asking the same questions as you. However, it took them so long to decide on the plan to have chemo before the surgery that I felt the tumour had grown as my symptoms were getting worse and I therefore wanted the chemo to make double sure they could remove it all and be able to join me back up.

I've just seen your post about your Ileostomy and again lots of your experiences echo mine.  I asked for advise on this forum about 6 weeks ago as a newbie as I was feeling really low and demoralised due to the skin around my stoma being so sore.  My stoma sits in quite a deep crater so I too have to have a firm convex pouch and a sealant ring to try and get the stoma to stick out and avoid it leaking on to my skin and beyond!  It's also an odd shape as there are effectively two parts to it sitting side by side; this will apparently make it easier when it comes to reversal.  My stoma nurse said it looks like a cute piggie nose, but I think it looks more like a big gunshot wound and certainly not like those cute little buttons you see in the leaflets! 

I also have sensitive skin so for weeks I was managing skin irritations which were so itchy and sore, i though it would never get better and was taking paracetamol and antihistamines daily.  

I've tried loads of products and combinations of products and have settled with the Pelican Modavi firm convex (medium size) and the Hollister Cera rings (not the slim size).  The pouches feel so secure and you can also use a belt for extra security. I also use a protective wipe and a generous amount of stoma powder every time I change it.

I need to use a mirror to change mine as I can't see the stoma clearly by just looking down and the Pelican pouches have a lifetable flap over a large clear window which really helps.

This seems to be the best combination for me and although I do get a tiny amount of leakage from the pouch opening and as long as I change the pouch every day, the leak is absorbed by the ring and away from my skin.  I haven't had a proper leak for weeks now and the skin around my stoma was looking great until I decided a couple of days ago, for some stupid reason, to try a new combination and ended up with a leak on to my skin.

Mine too is more active in the evening and overnight, but whilst getting up in the night to change it (sometimes twice) is a pain I'd rather that than it start filling up and need emptying during the day when I'm out and about, not that I get out that much at the moment!  Over the last week, I've gone a couple of nights with out having to change it so I'm hoping that it or I have relaxed a bit.

I think it's just a matter of getting the right combination and sticking to it.  Several people have recommended the Salts products, but I was never offered these and I am happy and with the Pelican ones now and would highly recommend them.

I'm sure you will find the right combination soon. 

Good luck and take care.

Melly73

Hi Wilma, I am also stage 2 (T3N0M0) and just finishing my first round of chemo - CAPOX. I really struggled with the decision as the only risk factor was that there was some cancer cells in the surrounding blood vessels and capillaries. Surgeon got them all out but some may have started to travel before the op. It's a big decision and like you I had the idea that if I did it I was making the decision to poison myself. Swalling the tablets was really hard for the first week - not physically but mentally. However my son had a chat with me and talked about hangovers and alcohol and although I've had a few stinking hangovers in my time I still take a drink (well not felt like one when on chemo but you get the gist.) Also Mariannne26's point about it being the cancer that's the poison is a good one. In the end I decided to go for it and as I say am on CAPOX.  So my experience of the IV Oxaliplatin is that it's pretty vicious stuff and I've had quite a few side effects from that but the capecitabine has been really okay. A wee bit of feeling nauseous now and again but relieved by eating something. That's about it so far. I'm moisturising my feet and not walking too far but easily managing 3 or 4 miles and I'm happy enough with that. Obviously this might change in future rounds but that's me at the moment. Good luck with your decision.

Beth

Hi Marrianne,

Good to hear you had no side affects. I’m just trying to understand if there are any permanent side affects to the chemo. It’s sounds like any side affects disappear once you stop taking them.

The age thing, they told me was a factor because if I was older I wouldn’t be there at all,  I think it’s because the benefits of it are so minimal it just made me wonder if it was worth it if there were more side affects from the chemo. However I can see that isn’t the case which is good. 

thanks for sharing this is all very helpful. 

Thanks Dando55, very reassuring. 

Thanks John that’s great to know. Much appreciated.