hello all, had a biopsy in neck yesterday to see if things had changed. What was worse though was going down in the lift afterwards and having that huge mirror which you can’t look away from, already pale and shaky i saw how terrible i looked. Can’t they change the lighting in lifts? Every blemish shows lol
just thought i’d share this.
Ramade
Oh Ramade
I totally agree with you about the mirrors …since secondary I have stopped hilighting my hair in fear of loosing it so I’m an old grey bag lady now ! I tend to wear just leggings, boots.and baggy jumpers etc for ease. .no smart clothes these days but comfort to put on and off really.
Oh well have let our standards slip these days but hey hoo let’s hope CAPE is doing its job.
Happy new year to you peachy warriors. We should all be popping our pills at twelve to celebrate them ! I’m not going to risk anything more than tonic water tonight although hubs has a nice glass of port and Stilton in front of him. Oh how our lives have changed.
Enjoy ladies xxxxxx???
I toddled off to bed after the James bond film with intentions of watching the London fireworks on TV but fell asleep with remotes in hand to 3am and cold cup of coffee …Oh dearie me xxxxx
Happy New Year to everyone.
im on my second round of cape day 8 but have felt really rubbish the last few days, I’m not sure what to do seeing onc on the 10th Jan after second round completed and scan after 3rd. I’m on 2150 twice a day plus morphine, antisickness, and vitamins.Side effects I’ve expereinced are sore cracked thumbs and feet, even with applying creams, sore mouth and poor appetite and nausea.
I feel so fed up as if I stand up to do anything I feel very wobbly, and unwell. I’m more or less housebound as I don’t ever seem to feel well enough to go out. Energy is nil!i look appalling, I looked at photos taken over Christmas and couldn’t believe what I looked like. My skin, particularly my face is a horrible shade of grey and yellow!
Any advice on what to do would help, I see on here a lot of ladies continue on cape for years, but I’m not sure I could stay on it as I feel it is dominating my life, I feel so fed up and worn out I don’t know what to do.
We have no secondary BC nurse in our area but I have a good palliative care nurse. The chemo nurses are brill too but never really sure when to ring them, as I don’t want to end up in hospital.
sorry for the long post, but felt I just need some friendly advice.
xx
Hello bjr
I’m sorry u are feeling so unwell. …I’m just finishing cycle 7 on Sunday and must say this one has been more hard to tolerate …felt quite sicky at times and very wobbly too …my hips and bones feel.like marshmallow with no strength in them at all …in fact I’m having to use my stick just to walk a few steps to kitchen from my armchair.
I hope its a temporary blimp for you but talk to oncologist. .my dosage is down to 1300 x 2 a day now …it’s quality of life on this pill …if possible.
As my platelettes were low …I have large blood marks on my arms …not sore or itchy but no one seems to be bothered about them.
I must say I felt really well for the first 6 cycles. .this one is a real bummer and I hope it settles !
I think it’s good we are all posting our side-effect because I panic the symptoms are the cancer progressing and not the medication .
All the treatments have side effects. .looking back even letrozole did give some too over the 3 years I took it. Looking back the sleepless nights were worst …gallons of coffee and bickys were my best friend then ! Now I have trouble staying awake …
Anyway ladies the key is the dosage I think…once they get it right …woo hoo we will be dancing on the tables next new year !! ??
Hallo BRJ, I don’t know whether this will help but I was on Cape for 2.5 years. I was on 1800 x 2 a day but my hospital is one of the top specialist ones in U.K. and they had a regime of 1 week on/ 1 off. This kept the side effects manageable but the treatment working. They have vast experience and said it made no difference to success rates.
I do think that some Oncs can be quite inflexible with their treatment regime as they feel safest following the guidelines. I’m sure it’s worth a discussion though, it must be better that than having to give up on Cape?
I take Vitamin c and d daily …don’t know if they are magic though! I stopped denosumab 7 months ago as my teeth and jaw were so sore. …at Exeter they only recommend 3 years of it. I did 2.5 years so.nearly did my time.
I eat loads of dairy …my old oncologist(the old school) said it was just as good as denosumab .
Yoghurt. Milk shakes and tinned rice pudding cheese.
That sort of stuff .
But I’m not a medical expert so don’t quote me on this !!! I don’t really like meat much
.odd piece of bacon is about it.
Thank you for your lovely supportive replies. I had my bloods done yesterday and they were ok, my tumour markers were better than they had been, my liver function was slightly worse than before.
Anyhow I feel a lot better, I’ve decided to go dairy free again as I wonder whether that’s making me feel so poorly. I started eating dairy after a 5 year break when I started cape because my calcium levels were so low and I can’t tolerate any calcium pills.
so today I’m hoping for a good day, no anti sickness and less morphine and I hope to be able to go for a walk around our small holding to chat with the animals!
Again thanks for your support, I’m really appreciate it, particularly as I don’t know anyone else on the same treatment as me.
Have a good day everyone.
Bel xx
Oh what a lovely thing to do …rescue animals. .they give so much love and appreciation back.
My son adopted a donkey for me this year. .she’s out the donkey sanctuary at Sidmouth a few miles away. I hope to visit her soon. ???
Hiya Lynn
My platelettes ( are they the same as netrophills)
Were low last month and I only got the pills by having a lowered dose ! We are at the same stage with cape …these things are building up. I stop pills tomortow for my week off so hoping this week they climb back up again. Feel horrible on week off though. …
I get blood done Tuesday ready for Wednesday clinic. I always have to ask for blood pressure, heart test and weighting though. .they don’t seem that fussed about these things.
Hi Carolyn/Lynne
When I was cape my neutrifils went down to 1.4. The hospital I attend like them to be 1.5. Think the neutrifils must white blood cells that ward off infection. I had the same problem when I was on FEC. I had to have an injection about 2 days after having FEC. I am not sure what low platelets means.
Hope that helps.
Linda
Hi Ramade and everyone else.
We have rescue animals too. We rescued 5 Alpacas, and 2 rather large pot bellied pigs, called Arthur and Bramble. We also have 15 rescued chickens! Alongside these rescued animals we have 15 runner ducks, 3 geese, and two goats called Pandora and Tiffany. We also have a small flock of 22 sheep. 2 rams called Barry and Kevin who we hand reared and now think they are dogs!
Animals are therapeutic but hard work, my OH works very hard looking after them, as I’m all but useless now as I get worn out so quickly. I do partipate in the growing of the veg, as we’ve set up a reclining sun lounger in the poly tunnel so I can take a break any time in there.
The last few days have been a bit up and down, tummy not coping very well and I’ve had to resort to Imodium, hoping that next week my dose will be reduced and things will settle down a bit. I’ve also lost 10kg, so I’m sure this will mean my dose can be lowered.
Interestingly I get the runny nose side effect in the 2nd week of cape! Hoping that everyone is well and side effects in 2019 are more manageable.
Definitley feeling more positive today!
Bel xx
Hi all and happy New Year.?
I have been a little quiet lately for 2 reasons: I was feeling wiped out after catching this cold that has been going around which also meant that I had to have an extra week off Cape and i wanted a cancer ‘holiday’. Back to normal now, well my normal- sore hands and feet and occasional dodgy tummy. Got reality check next week as back at hospital to receive 2 months of TM results. Yikes. They have been going up slowly but steadily since last May so expecting the worst. Onc said last scan in November showed stability, but that the cancer is active hence rise in TMs. Anyway, I had a nice Christmas and went away for a few days?
Carolyn, I am no medical expert, but my understanding is that platelets help the blood to clot and neutrophils fight infections so are essential to our immune system which is why they have to be above 1.5 in my hospital. Mine did drop when I first started taking Cape and were always around the 1.5 mark; however, recently, they have started to rise. I have no idea why.
Have a good weekend all capers
George ?
I have stopped any visitors with colds calling in to try to avoid a virus …so many people with bugs at moment …
I’m feeling a bit sicky so having plain food rather than anti sickness pills …
BEL …all those rescue animals must cost a fortune to feed and look after. …but your heart is in the right place for care. It must be nice though to have them all.
Well one more load of peachy pills tonight and then a week off …this month I had all 150gm pills not the 500 ones. .so many to take in one go!
Oh Bon
Best of luck with joining us as a cape crusader. .I’m sure you will be fine with it …although it’s a big dosage …I’ve just stopped mine now for a week. .yippee no 7am pills and muffin …so.lay on for me. Although I feel better on the pills.
???
Hi Bon and everyone else
i was very poorly before going on the peachy pills(as Carolyn calls them) but once into them felt better. I’m just about to finish second round, whilst I feel better than I did before taking Cape, the side effects can take a bit of getting used too and managing.
worst for me is fatigue, and dodgy tummy!!! I think it’s a case of getting dose right from what I’ve read on here. However I started on 2150 twice a day, but have lost a lot of weight so hoping that the dose will be reduced and I will find more manageable this week after seeing onc.
im not sure what others think but I far preferred having one dose of chemo every 3 weeks intravenously than all this pill taking!
Im on to 17-18 pills a day now and can’t get my head round it all. Luckily my OH is brilliant and managing me.
Hoping for a nice day today as we are expecting 2 new goats next week, pandora and Tiffany, so need to complete there house today.
Hope everyone has a happy Sunday.
Bel. Xx
Hi Bob,Bel,Carolyn and all on Cape. The only side effect i have had so far are finger tips peeling and cracking and very sore, hospital have prescribed me some cream. i know that Cape is working for me because i have obvious lumps in my neck which are going down, also had blurry left eye, and losing teeth on left hand side, the fog is clearing, still numb face though but that is from brain. it is a drug which seems to work on a lot of people though so worth pushing through. xx
Ramade
My side effects are exactly the same as we are really a mirror image of each other …
I’m on my week off now …don’t feel sicky and eating like a gremlin today and yesterday. …mmmm let’s raise
Raid the fridge again ! Oink oink ??hope everyone else is coping …it’s a wonderful regime if the body can tolerate it ladies …
???