Good luck, Louise. The numbers for the markers don’t matter. I’ve seen a woman post whose are over 1000! Initially they will rise but what matters is the eventual trend. Mine went gently down after cycle two, then 2 cycles later, they’d plummeted. I just want them to stay like that. The uncertainty of it all (like your first line of treatment not working) is a bu***r isn’t it. Fortunately I think I exhausted my fear in primary bc treatment.
Don’t worry about staying positive, Personally I hate the term. We have no choice, but I feel ‘positive’ kind of puts the burden on us if things go awry. There’s nothing wrong with lying flat out, not wanting to see anyone or do anything now and then. In the end, you’re right, it’s luck. (And science, let’s not forget the new drugs coming through for us). Best of LUCK xx
PS. You’ll have your blood done maximum of 3 days before the prescription is issued/delivered, every cycle. Make sure they don’t give you a clinic date before that or you’ll have to go back again. It’s a pain but cancer services are so stretched, it feels unfair to object. I am so assertive until it comes to anything medical, then I’m unmanned, just do as I’m told lol xx
Thank you soooooo much for your reply and what great advice you have provided. I have taken all on board so feel kind of ready to start next Thursday (I have an ECG and bloods on Wednesday first) but to be honest I just want to get this new treatment under way as I feel nothing is dealing with the cancer inside me and hasn't been for a long while (first treatment they prescribe unfortunately didn't work).
I was also pleased to hear that you are managing the Capecitbine well and what amazing blood marker results from 124 to 24 and now 19 that is great!! My current blood markers on 8.10.21 was 102 following bloods next Wednesday I expect this to have risen 😞 but I am trying to have positive thoughts so that this Capecitbine knocks the sh!t out of my cancer and my blood markers back down. I believe life goes in cycles and the whole of this year I have been on this low cycle I just wish for an upward turn and some luck.
I wish you to continue well and that those blood markers stay put. Once again thanks.
I feel like an old hand with Cape, after 8 cycles! Random thoughts:
1. Be prepared for lots of sleep. Set your TV to record because you may doze off at a crucial moment.You may get night-time insomnia. Loads of cape users complain about that.
2. Yes, moisturise several times a day. Focus on the edges, the sides of your toenails and fingernails, the edge of your heel. My oncologist prescribes Hydromol. My palms are pretty pink in patches and my heels fluorescent. There’s rarely any pain and what there has been has been completely manageable. I was told yesterday by a different oncologist that I should always wear socks to reduce friction on the heel. Fortunately we are moving into sock weather.
3. You may find the time you are awake in the first few cycles is spent on bowels. The capecitabine runs are infamous but I’ve only had cramps and a lot of constipation! Buy some Buscopan, make sure they prescribe loperamide in case you do get the diarrhoea (or buy Imodium) and, if you do get the diarrhoea, try changing to a low fibre diet (I was advised yesterday).
4. Within 4 cycles my blood markers had dropped from 128 to 24 (now 19) which is excellent. My tumour markers are down by 75%. My skin lesions and my eyelid (where my SBC resides) are slowly reducing in size. All good.
5. It took 5 cycles for my body to adapt but I always was a delicate little flower! You may find that, like many women, you just carry on as normal but just be prepared o be hit hard by fatigue.
6. You may be given a diary/log book. If not, it’s worth logging everything that’s different from normal to spot trends and update your oncologist. I have an appointment every three weeks, then bloods, then Boots delivers my prescription (14 days of 18 tablets a day). Scans every three months.
7. Don’t be fooled by the week off, as I was. It’s when the drug probably is at its peak and you may feel worse - but then week 1 of the next cycle will be ok.
8. I have a full head of hair but it definitely has thinned on the top. It’s not noticeable but has necessitated a fringe of some kind. I’ve stopped using conditioner to prevent it from looking lank. Can’t wait for immunity to kick in so I can go get a haircut.
9. You may get dry mouth and throat but your onc can prescribe for that. It’s intermittent. I use a mouthwash made from an infusion of marigold petals (easily found online) and I’ve had no ulcers etc.
10. You may feel fine, as I said, but you are almost permanently immuno-compromised and it’s easy to forget that. Be very careful. If you haven’t had your jabs, have them in your week off and stagger them so your body can work with each one more effectively. I’m currently tolerating ‘Pfizer arm’ after my third vaccination. My booster will be 6 months ahead.
11. Look after yourself and your emotional wellbeing. There are online support groups run by a lot of charities and some charities are beginning to set up local meetings again. It’s a good, friendly and supportive community if you’re new to SBC.
I think that’s it for now. Good luck.
I will not be eigiable for Capecetibine but know there is a dedicated thread on this site for Capecetibine queries.
Think it's under Medical Treatments? Keep looking and you'll find it. Seems a shame that it causes hair loss? I've not read that anecdotally myself. I think it's more the hand and foot syndrome.
Hope it works well for you.
I am waiting for confirmation that I will be starting Capecitbine. I would appreciate any feedback relating to how long this chemo tablet worked for you? Also regarding hair loss as Onc said today I will lose hair but not the full head of hair?
I have purchase Udderly smooth lotion which I am applying morning and night to hands and feet. Any other tips would be appreciated.
Thank you Louise