Hi Sandy,
Sorry you’ve had to join our club but welcome anyway. Cape is a weird medication, some of us have few side effects, while others have a bad time of it. Fortunately, the dosage can be reduced quite a lot which reduces the s/e without reducing the efficacy of the drug. As regards sun exposure your onc is definately stating the worse case scenario. You should definately slap on the high factor sun cream and be sensible with exposure when it’ s really warm. After all it would be a shame to ruin your holiday with sunburn. Have a lovely holiday. xxx
Thanks for the info girls! I also have mets to bone and liver and nodes, getting Exgeva once a month for ages now.
I shall play it safe with the sun without being fanatical. I’ve changed my diet as well, that is fanatical, I’m vegan now, no meat, animal proteins at all, no sugar or processed food. Feel great, great weight, work out with weights and eliptical and we walk. I live in the Middle East but I’m a Canadian expat here…just some background info.
Thanks again, I should be starting Sunday, and as I’m refusing not to travel my onc is starting me on a reduced dose…happy for that. Full -dose chemo just about killed me last year!
Have a great day, or sleep everyone!
Sandy?
Hi cape ladies, mum has been on cape for one week now, she’s had a bit of a dodgy tummy and been sick a couple of times but doesn’t feel I’ll as such, she just feels really weary and is aching all over she’s also had trouble with her legs during the night, she said they feel irritable and she doesn’t know where to put them, she just can’t get comfy which is affecting her sleep a little bit. I’ve been taking her out in a wheelchair because she can’t walk far anymore without getting breathless or having a painfull back and legs. She wasn’t the most mobile of people anyway because she walks with crutches since having a fall years ago, but her mobility has definately got worse recently, has anyone else suffered this way xx
Sshh but tomorrow its Bartons birthday ( I will b a true friend and not reveal her age but she is just holding on to her 50s this year )
So maybe u will like to send her greetings tomorrow.??
Ha ha …
HAPPY 50 ish BIRTHDAY BARTON ! ?
Happy birthday Barton and thank you for the reply x
Hi Peachy warriors
I see we have another cape crusader joining us welcome Carolann. I am glad our ladies have been looking after you.
Barton you are quite right you have read about tinnitus in the information sheet that comes with the tablets. It comes in a second common se further down the lists.
“ringing or buzzing in the ears (tinnitus) loss of hearing”
So it is a se unless it only belongs to the accord brand (is there another brand)
Sorry I have not been on here for a while but I have not felt too great I think it is all the chemo I have had in the skin. But I am back for a while before my trip to France after seeing the onc next week for my 12th cycle.
Love and ((((hugs)))) to all our Peachy friends xxx
Sorry forgot to say welcome to cashmore and cashmore’s mum and Sandy I do hope you will be ok on cape.
Ellie is it wise to go walking with sore feet make sure you cream up well and wear socks and good walking shoes. Good luck.
Love and (((hugs))) again xxx
Hi Carolann,
Welcome to our little club. You’ll find that everyone is very friendly and helpful here. I’ve not experienced tinnitus as a side effect in fact I am lucky to have only minor side effects after almost 11 cycles. Have you looked in on the secondary private forum. We have loads of fun things like word games and a book club but we can be serious there too, when need be.Keep posting. Best wishes. xxx
Well done Ellie. I bet you’re glad that’s over. I find trainers are far and away the best shoes for me at the moment. I used to always wear smart shoes…but not now. xxx
Well done Ellie
I hope you take waffle and Bartons advice and let your men run around you for a change. Roll on next Thursday as soon as I get the peachy soldiers I’m off to see my grandchildren in France and tomorrow I see the other three at Wetherby before they jet of to Malta for the 6 week holiday. Lucky them daughter-in-law has family there her mother was Maltese trust my 2 son’s to marry girls with foreign parents.
Love and (((((hugs))))) to all peachy crusaders xxx
Thankyou Ellie and Barton
I am trying to organise the packing what I need and what OH needs. Thank goodness the weather is giving me chance to get washing done. I am finding it hard to iron with my hands being sore so I got John to help me he is very good at helping but he tends to want to do things his own way and I get so frustrated because he doesn’t listen.
I may ask the onc (if she is still there because she will be 30 weeks pregnant now) if I can take these three weeks off to give my hands chance to heal. I go to a local cancer support group of which i am the only one with SBC it is run by a retired practise nurse she said it looked like an allergic reaction and asked if my feet were the same she adviced me to get some antihistamines and hydrocortisone cream. The pharmacy were very good and as they knew me and they knew I was on lots of medication gave me laratadine tablets and Hc45 cream and although I have only taken them for three days I can see a change in the colour of my hands they are starting to look normal but the splits hurt and keep opening up
My MS is also playing up with the heat my legs are giving way on me and I have not sat in the sun. It has been quite hot here today and the weather in France is hotter than here. We spend alot of time inside with the shutters on the windows playing with the grandchildren .but the suncream is factor 50 when we venture out. I am afraid the sun is no-longer for sunbathing in now.
Well I don’t go until Thursday but so much to do.
Love and ((((hugs)))) to you all xxx
The new sketchers trainers look very comfy …they are all memory foam and bounce for you cape ladies.
Have a nice holiday marirose and enjoy France and the grandkids .
Xxxx
Hi Ellie
I have wonderful Asics Gel trainers which are incredibly comfortable I got those specially recommended for me in a running equipment shop (when I could still run).
Marirose, sorry to hear that the sun is bothering you and that your hands keep splitting. Enjoy your holiday when it comes. Best wishes to all my Peachy Pals xxx
Hi all,
Just checking how all my peacy pals are doing. Hope you are enjoying France Marirose and your hands and feet are a bit better.
I’ve just finished my 12th cycle and seem to be fine at the moment, probably the most pain free I’ve felt since diagnosis which I am incredibly grateful for. However, I am finding that I really have developed aversions to many of the foods I used to like. I feel physically sick at the thought of them. I still get hungry and I not losing weight as fortunately the foods I still like have plenty calories. Doctor said this is a chemo side effect. Anyone else have the same problem? Best wishes xxx
Hello from France Peachy Warriors
Sorry I have not been able to post sooner but life is hectic t the moment. 20th I saw onc and I asked if I could take a break from cape for 3 weeks she agreed it would be a good idea. My hands are starting to heal and I am enjoying being with the grandchildren and of cause my son and his wife. Weather almost like England with rain but sun much warmer
Waffle I admire you it seems cape is doing ok for you long may it continue. Ellie my hands go very stiff and that is when I find they crack. Thank goodness I am getting relief now. I have tried your savlon remedy Barton but as soon as they seem better the crack opens up again at last they are healing. I think i have had far too much chemo drugs without a rest.
Welcome to Midway I hope you and your wife find plenty of help from my fellow cape friends this thread is full of useful information so please look back on past posts.
Love and ((((((hugs)))))) to all xxx
Oh ellie
I’m so sorry u r feeling so wiped out by the peachy pills …I can’t think how u must feel as I don’t take them. When I saw u last Friday …couldn’t believe how sore yr hands looked and all waxy etc.
Do u think that your body has been overloaded with previous chemo and hence the tiredness ?
Hopefully the scan will show stable and then maybe a little break ?
Love to your gorgeous little boy too.
Hugs xxx
Ellie
You have every right to be grumpy after all that chemo …have a pj day and oh I love thunderbirds too …is that the one with lady Penelope and her pink car ?
Hopefully they will reduce the dose tomorrow but maybe we are all lazyittis today after the heat attack we have had lately.
Although I’m showered and dressed now …just eaten a bar of C adburys for brekky.
Hugs xxxx
Hi Everyone,
I just skipped back to see my original post re Cape.
I was put on to a markedly reduced dose of Cape about two cycles in; during my first cycle, my life was miserable due to diarhoea and vomiting…when my dose was reduced, I also was told to do 2 weeks on and two off…and I was worried it might not work, but it did work well for almost two years.
I think they usually start you on the max dose for your weight and then see how you go, sometimes you start on a reduced dose for some reason…(.im just fininshed my first cycle of Eribulin, but they gave me a reduced dose as my liver function tests results were high…she said, we know that side effects will be worse, unless we reduce the dose.) obviously they want you to be able to tolerate the drug you are on so that you can continue.
I also had red fingers and feet and the fingers got small cracks in them… I get cellulitis so am extra careful about that. i got hold of some ‘udderley smooth’ which is a little expensive, but excellent stuff. However, there are lots of good creams out there…best if they arent too perfumed, look out for parabens,to exclude these if you can. I currently just use e45 but I havent currently got cracks etc.
i think on reflection, my time on cape gave me more freedom…Im now tied down to i/v chemo which is much more intrusive. There arent that many ‘tablet’ chemos around, I wish I had done more travelling and other exciting things whilst I was on Cape, now im tied to hospital visits , cycles of 3 weeks. So make the most of it ehilst it is working if you can.
The other thing is, and it took me a while to realise this…if you have a query/concern about your treatment, you can ask to email your onc’s secretary and she will pass on urgent data to him/her, so if you are struggling with an unbearable situation, as in all these s/e you could try that…or contact a n/spec if you happen to have one, I try not to do either too often because although they are always very nice, I end up feeling a nuisance!
i also think Carolyn’s advice ( chocolate) is a great idea, unfortunately, I cant just now, due to reflux!
Hope that helps.
love and hugs
Moijan