This is my second attempt at posting, first one vanished , so fingers crossed. Never brave enough before but have been an avid reader since my secondaries (bones and liver) diagnosis in July 17 and I've drawn so much comfort and reassurance from all your posts thank you. I felt much better when I read this thread and realise I'm not alone! I have to rush to the loo, almost not making it and thought it was just me or my age (67) But on my 11th round of Cape so that must be the answer. I'm worse in the day hut drink lots in tbe morning. As you say belts are a real hindrance! However if the peachy pills are working I guess it's a small price to pay. Never thought I'd be a Tena lady!
Good luck to all of us on Cape and thank you for your lovely positive outlooks . I'm sure there are lots of us silent watchers who get so much from your posts.
Bon & GG. I have exactly the same ‘problem’ having to rush to the toilet, mine is worse st night as well. During the day I manage okay but sometimes it is very urgent....I no longer wear trousers which need a belt!!
hopefully starting my 8th cycle tomorrow- had diarrhoea for most of my week off - not too bad though.
seems the SEs are similar for a lot of us.
I've been having trouble with unpredictable peeing, sometimes I'm OK, sometimes I'm taken short and it's a nuisance being woken up at night. I try to drink a lot which is supposed to be good but does lead to more trips to the loo. I can put some of it down to being old (72). Perhaps the best thing to do is to take the bulk of the fluid intake in the first half of the day.
Bon, with legs crossed xxx
Hi Ramade, sorry to hear about your urinary problem. So miserable. I dont think I have an infection, but since being on Cap I am out of bed at least 3 or 4 times a night to go for a pee...in the day I can hold it, but come nighttime, I have no control at all. I barely make it to the bathroom ( sometimes I dont make it I'm embarrased to say)
Hope you are feeling a bit better.
Love GG xxxxxxxxx
Hi everyone, just wondered if anyone is suffering with urinary infections and how they are treated when on cape.
really suffering here.
hugs to all
Lovely to see you on the thread again, Carolyn! I totally agree about one’s own bed at home. I also hated the hospital bed.........mainly because it was in the hospital. But you are now home and dry. I know you will feel better when back on the peachy pills, but I can see that people often have breaks for one reason or another. I will have to have a break to have my kidney stent removed in a couple of months.........haven’t even started the pills yet!
i see the nurse & pharmacist on the 15 th to get my first pils. Nobody rushing. But it gives me 2 weeks of normality to Go! I have tubs and tubes of creams and moisturiser, and am doing my homework reading old threads. Thank you everyone for your good advice!
take care, Carolyn, and do try to keep us posted when you feel like bothering. It’s good to ‘see’ you here. Squeeze your twins for me. I had my little Anna last weekend..........late Christmas, so .lots of pressies! Then play, play, play. Shops, teas, cafes, are her favourites. Had to be careful about change this time..........just swapping toy coins wasn’t good enough! I was prepared to waive the change but she wouldn’t have it!
As I've been bedridden for 4 weeks I just wear baggy pj's now easy for toilet etc ..still waiting to hear about starting cape chemo pills ..I have felt ok on them after 10 cycles and hope they do some magic
Just thinking. About pussy haven't heard from her for a while. ...she was taking cannabis as a last minute treatmenit. .hope she's OK. Xxxxd🐥🐥🐥🐥🐥🐥
Hi All, Hoping this post doesn't disappear like the other 4 I posted earlier in the week...so annoying.
Carolyn....I hope you are feeling better.
I had my review this week and TMs had gone up slightly, but The Onc okayed my next cycle of Cap.
On my week off, I had cotinuous stomach ache and went from constipation to diarrhoea alternatively I also seemed to get my stomach ache more after eating or drinking. Also I get so bloated . I feel like I'm bursting and have to hold the waistband of my clothes about 6 inches away from my stomach to make me a bit more comfortable...at the same time, I want to eat something. It's making me a bit scared to commit to going to Memphis in May. I dont want to spend the time in a hotel room as I dont seem to have the energy to do much walking. My heart says go and my head says dont be daft !
I hope everyone reading this is feeling ok and sending you love and best wishes for a good weekend.
Thanks ...love my own bed ..hospital beds worry me I will fall out. I'm on no medication at moment. ...just morphine spoon before bed and 2 paracetamol. ..hoping for my peachy cape pills again soon
Nurses in twice daily for wash and clean pjs eto.
Waiting for scan results but only done Wednesday so early days
Gorgeous weather here xxxxx
Hello again Carolyn..pleased to hear that you’re home....there’s nowhere as good as your own bed is there?
your platelets have gone up well I have been given my pills with that reading...fingers crossed
don’t do too much too soon and take care
Yes at home in my bed ..nurses coming twice a day. ...not back on chemo yet though. Hoping to get a call from hospital to collect new supply ....platelettes back up from 88 to 124 ..looking good .
Glad you're home. hope you are being well looked afer. Hope scan results are good. Tried posting earlier but it seems to have disappeared.
love to all Bon xxxx
Ramade Good to hear from you .....aRe u still getting double vision and the wobbles ....it's horrid. I'm home from hospital. . Strange bloods good ..blood ptessure good. .no more chemo at moment but keen to get back on the peachy pills....the cancer must be partying inside Me. Waiting for scan results done yesterday that they are giving priority . Xxxxx
Thanks for alerting me to your posts going missing - I think what could be happening is the login prompt triggering too late.
At the moment the system allows you to type a message even when you're logged out. Then, rather than posting the message, it says "oh, you're not logged in" and quits - not very helpful!
I've updated this setting so that now as soon as you hit reply, it checks that you're logged in and prompts you to do this if you're not. Then it allows you to write and post a reply.
I've just switched user to pose as those of you who were having problems and it works.
Could you let me know how you get on the next few times you post to check that this solves the issue?
I've also disabled the robot checker - it's now only in use at registration stage rather than every time you post.
Thanks very much,
Becca at Breast Cancer Care.
Carolyn........sending best wishes. Thinking of you and hoping everything settling down now. Perhaps you are back home? Give your body a chance to heal. I am seeing my onc tomorrow and he will probably start arrangements for me to start on cape. Then I will be an official member of this experienced thread! L plates.
so.........take care, Carolyn. Sending hugs.........and all the best to all the others visiting here,
Thinking about you Carolyn. Take comfort from the good care I'm sure you are getting.
Lots of hugs Bon xxxx
Sorry to read you are in hospital. Hope you get home soon.
Must have been really scary for you.
Sending a cyber hug.
carolyn,love to you and thinking of you. i hope you are soon home where you can get some sleep and hubby can cook you just what you fancy
Hello Carolyn, just to reiterate what Mo has already posted. Hope you start to feel better soon, hopefully you are able to relax and have a good rest. Hope the steroids aren’t affecting your sleep
hugs from Lynne x
Thanks for updating us Carolyn. Like everyone I was wondering what you were up to! Hopefully the rads will do the trick........thats the idea! Chemo stopped? From reading this thread cape is often stopped when other things intervene then restarted when appropriate. I assume you are in recovery mode now. Wow........they are prescribing the steroids! Just keep taking them. If pain was a symptom I hope that has settled. If you are still in hospital just lie back and enjoy the room service.
basically we are thinking of you and hoping your recovery is steady. Love and hugs,
Hope this posts ..I have tried the threads. It vanishes in cyber space .
In hospital had emergency radiotherapy for spinal compression. .chemo stopped and I am on 17 steroids tablets a day. Feel like I'm living in Moo Moo land ..
Anyway ladies I still here 💟💟💟💟💟
thankyou all for your kind comments. Lynne glad you had a nice holiday. Carolyn is your lower dose working just as well. Bon can i ask why they gave you a blood tranfusion.
i have tried several times to send posts of thanks but the site steals away my posts. i'm actually getting quite upset about the site problems because this is such a lifeline and it used to work so well. i see others are having problems aswell.
Anyway hopefully it will be fixed soon.
hugs to you all
Hello everyone. Carolyn and Ramade Sorry to hear that you have both been so poorly.. hope that you’re feeling better now and that the bed rest helped Carolyn. Dehydration is horrible, I had it many years ago when I had food poisoning so am always wary, as you say Ramade it’s best not left too long. Also Bonariensis..hope that you are continuing to feel better after your transfusion....do you mind me asking why it was given...had your bloods gone to a really low level.
Been away for a week to Spain, we just pottered around and sat in the sun...with hat and lots of high factor sunscreen...but it was a nice break.
I had to miss my 7th cycle but recommenced it last Friday. During the break my hands healed I was worried that my TMs would increase because they did rise dramatically last summer when I had a 7 week period with no treatment. However they hadn’t- in fact they fell a little.
Feeling a little tired since started this cycle but not too bad.
Hugs to everyone
this is my third try to post, when I tried to view in a pop up my post just disappeared so am going to hope this one works
Had blood transfusion today. I know it's a bit soon to count chickens but I did walk upstairs without nearly collapsing this evening!
Back on cape on Saturday. Hugs to all cape crusaders. xxxx
Hi Carolyn, sending you a big hug. I do hope you start feeling better soon.
Ramade, same to you as well.
Poor you, both of you. Cape seems such an 'easy' chemo but I don't think there's anything easy about chemo full stop. Hope everyone feels better and that the sun coming out and a bit of warmth will do us all good.
Sorry to hear you are having such a rough time at the moment. Can't be nice feeling dizzy and confined to bed. Hope bloods are good and you are able to start pills.
I'm still in bed nearly a week now. .have no strength in legs, dizzyness and blurred eyes etc ...I'm. Happy got DVD tv kindle and coffee maker and feel this is the best thing. My chemo pills stop again tomorrow for a week too.
How is everyone ? Hoping blood test is ok next week for cycle 10 of peachy pills.
Ramade ...sorry about the hospital admissions. I try to eat basic plain food to avoid the explosions! !
Hi Ramade, hope things have improved for you, sounded really scary.
Carolyn have you seen a doc yet? Are things getting any better?
Lots of hugs to both
What a beautiful day. Opened bedroom window to discover farmer spreading slurry 3 fields away.
Ramade, It's scary! Back at Thanksgiving when I got sick I knew I was dehydrated, when I passed out. It scared me, so I went to the cancer center and got fluids. You can't mess with it. I hope you escape and get home to your own bed. Take it easy for a few days and try to get more liquids in you or you will end up going back. Take care. FF
Glad to hear from you ..I have had problems on this thread. .so many of my replies went into cyber space ! Sorry to hear u are in jail with the trots ....
I was taken off heart pills a week ago as gp doc didn't think I needed them as my heart rate was normal. Doc said no withdrawal signs by stopping them. Ha ha. .spent a week in bed ..wobbly, no balance etc. .I had this 7 months ago when I started them. My Hubby has to lead me toilet as I had a couple of falls . Think today has been my best one in a week. Also glottal blurry vision. Oh the joys of it all. Not eating much or peeing much either !
Keep in touch as we are a mirror image at the moment with mets and the brain thingy.
Dear cape crusaders, i have not posted this week as rushed to hospital Saturday during the night, very bad reaction with diarrhoea not stopping, pains like labour pains and totally dehydrated(couldn't even speak), finally recovering and go home tomorrow. I expect the dose to be reduced considerably. so, if you feel you are getting dehydrated,get help, i left it too long. Big mistake.
hugs to all
I agree Nicky that we must copy our messages, at least for now. There are gremlins in the threads despite the best efforts of the moderators! But actually good to know that I am not the only one to have trouble. I often think I'm plain stupid! My email saves everything I do, just in case, and calls them drafts, which would be helpful here.
I do feel sympathy for your mum. All of you. I lost my parents just a few years ago and I miss them now more than ever. But strangely time helps in that I am getting used to the emptiness of missing them. It never goes away, but it does become a part of you. Sounds silly. I had to accept that I would always miss them. But grandchildren are a joy! My little Anna.......7........is a whirlwind!
All the best to capers! I do my daily homework ploughing through all the advice and good sense on this thread. Gives me courage. I need it!
PS this reply says it has been autosaved. Not noticed that before. I might check after sending.
PPS just posted and it says I must correct highlighted errors, but there aren't any. Trying again...........
I agree the new forum format seems to lose posts quite regularly and saving them beforehand seems the only way to make sure what we’ve spend time writing isn’t lost in the ether! I replied to a separate post the other day, in quite a lot of detail only for it to be lost. Funnily enough I went to reply to the original post and thought it strange that I seemed to be logged in as I usually log out as soon as I have written something. Anyway it allowed me to post a reply and then confirm I was not a robot and then lost the post as I wasn’t logged in after all. Grrrrrrr.
Anyway thank you as well for your kind words. We are all doing well as a family although I think my Mum is now feeling my Dads death, and absence, more acutely now than when he died in October. I’m sure it will hit us all in different ways and I’m not sure i have accepted it yet. However life, for all of us, does go on and my young grandson is a joy and certainly helps whether he knows it or not!
nicky.........just to say that i wrote a reply to your kind post earlier this morning but it seems to have disappeared altogether, despite me confirming that I was not a robot! No energy to rewrite, but thanks so much for your message. I do hope you and your family are still coping together.
quickly re epirubicin. i also wondered if he had said eribulin..........epirubicin so obscure. But my friend's notes plus a check with onc sec confirms that he did offer epi. strange. But for me Mermaid's good advice was that cape is well supported here on this active thread. I could be a cape 'crusader' too, and would benefit from all the shared experience here. I have read through many of the posts which go back quite a long way. Who knows? I may eventually have some advice to share of my own. So I will ignore epirubicin.
Nicky, well done for your 11 years on the BCC website! You are an anchor here, keeping an eye on us! I said in my lost message that I will be posting soon on the ablation thread to explain what happened to me, but Mermaid should know that ablation is an excellent option. 3 of my 4 tumours are gone. The last one is small and indeterminate. Because of my new situation involving unexpectedly my left kidney it will not be done as planned. Cape for me now. But for info and sharing I will explain in more detail on the ablation thread. I'm still a bit up and down.
So sorry my earlier rambling lost into the ether. I will save first before clicking on 'post' this time, just in case. The new website appearance has arrived with some problems as I know other posts have been lost. Here goes..........
It's good to see you posting but sorry to hear that the ablation knocked you for 6. When you have the energy please do add to the Liver ablation thread, if you can find it!!! The new format is rather annoying (I suppose until we get used to it) so threads have been combined (such as the one of 'Inspiring Stories') which has pushed a lot of threads much further down the pages.
As to chemo, I've had FEC but not heard of 'E' on its own, or maybe once in the 11 years I've been on here. As Debs has suggested did your onc mean Eribulin? As I've had Capcitabine and Eribulin I can compare the side effects and effectiveness if you want. At the moment a lot of Cape Crusaders are suffering with side effects which is such a shame as overall it is a very well tolerated chemo. I think it is a case of getting the right dose and hoping that even then you don't suffer too much - easier said than done in some cases.
Good luck whatever the next step is.
Thank you Mo
Ive looked on the American site but epirubicin alone evades me so I would probably go for the cape. There’s a good support group here for the Cape Crusaders plus it seems to work very well for liver and can be taken for as long as it’s working. The side effects seem to vary from person to person but many have also said on the American site that it’s the easiest chemo they have been on so that’s encouraging. Just a thought but you don’t think he made an error and meant to say “ Eribulin” instead?
Take care Mo and will check out your post on the other thread when you feel up to it
Good to hear from you too debs! I will fill in a bit more about my recent experiences on the ablation thread as it isn’t really relevant here. And we ‘met’ on the ablation threads didn’t we? I haven’t posted there for ages..........have just been so low. But feeling better suddenly and so will write something there soon. It all became complicated. One thing on top of the other. For me it is looking like cape next. Not looking forward to it but the ladies here seem to cope somehow. As usual the exchange and sharing of experiences is so valuable so this will be my thread to visit in future.
I might throw out a general question here........my onc has offered me a choice in fact between cape and epirubicin. I can’t find much about epirubicin taken on its own...........I only see it as the E in FEC, in combination. Has anyone here tried epirubicin on its own? I think I will go for cape simply because it is obviously a common choice.......much more known about it. I am small........42 kgms at the moment........and can’t be hit too hard. I think cape is weight dependent so I hope I can manage.
debs, I will post on the ablation thread soon and tell you about my experience there. You should see it bumped up in the list. But you should certainly ask about RFA as an option if you are stable otherwise. Lovely to hear from you, and best wishes to everyone usually on this thread, coping so well with their treatment.
So pleased to hear from you Mo, was getting concerned.
I was turned down for cyberknife to liver as I already have cancer in my bones. I’ve just had a CT scan and see Oncologist next Wednesday. I am going to ask about RFA so will be pleased to hear more about your experience when yiu feel up to it.
My account has been used by someone else so I'm hoping the moderators have changed my password so hoping this is now ok.
Carolyn...........I seem to have cancelled my previous message rather than posting it, so here goes again! I have visited today because I might be changing to cape myself. I see you are posting here these days so thought I’d say I have sent you a pm. I have been ultra tired since the liver ablation so have not had the energy to even visit bcc let alone leave messages. But feeling suddenly much better, although have to recover the lost 5 kgms before treatment change. Not easy. You seem to be coping with cape quite well............better than e/e.........a disaster. Anyway I’m just waving my little flag to say hello again as I slowly emerge.
Thanks to to everyone posting here. All the experience and advice is so useful, although I haven’t started yet. Good wishes to you all,
Just wanted to say have a good holiday in Spain. We went to Valencia last year and i had a week off Cape to enjoy red wine and tapas. I am sure you will too. The extra week off did not affect my TMs at all.
Have a good week fellow Capers
hope that you are all feeling as well as you can. Like many others I also seem to have more effects during the week off, but not as much as some. I did not start my 7th cycle because we are going to Spain on Tuesday and he didn’t want me to take the Cape whilst away. Apparently my bloods are very borderline and he is worried about infections....the immune system is low whilst on the pills - as we all know. He said that they would improve without the pills so will be okay in Spain... I just hope that my markers don’t rise too much. He was happy for me to go without the pills. I am really looking forward to a break but just a little anxious as well.
Does anyone else get shaky, I feel shaky inside but am not actually shaking - it’s a bit like being really hungry....even though I aren’t and it can be just after I’ve eaten. I mentioned it some time ago but the Onc didn’t seem interested, he said that was a side effect he’d never heard of before so probably not due to the meds......although he did mention in my GP letter that I mentioned being tremulous at times.
Carolyn did you enjoy your day in bed. Hope you’re feeling better on your reduced dose.
Ramade, George and Graceland girl hope the SEs are subsiding a bit now that you’re back on the pills.
hugs to everyone
I don't blame you for having a day in bed. Sometimes it can feel like a treat ( hope that doesn't sound too daft). I read the paper then snuggle down under my duvet, allowing hubbie to wait on me. I have been dosing myself up on paracetemol and ibrufen today. Ho hum. Hope things pick up for you tomorrow, Carolyn.
Ramade, hope your anti sickness treatment works. Gosh, sounds like you have had heavy snow. I am in the Midlands and, although it is cold, no snow as yet.
Have a good weekend all and hope SEs ease up
Thanks ladies for your replies ....it's horrible feeling like this. I'm in Devon Ramade but it's easy at moment ..Huby did a quick trip to aldi for sup plies early so we are ok with things. ..but not eaten much the last 2 days. ..I find milk and cuppa soup my best friend .
Decided to have a day in bed ....
Carolyn, George and all, no doubt that the week off is horrendous, not sleeping, feel sick all the time, diarrhoae(can't spell this word, too hard), then constipation. i have heard on the radio this morning that boiled water with some sprigs of rosemary in is good for that sicky feeling. i am going to try today. Snowed in today in Somerset and still snowing hard, good job hubby did grocery shopping yesterday.
love to all
I can definitely sympathise as i finished my week off yesterday and was actually looking forward to starting Cape again today. Recently, and I don't know why, i experience back pain at the end of my week off which stops me sleeping. Not feeling great today, but have started Cape anyway.
Hope, after your rest, you feel a little better. Make sure you have a good rest today. I try to incorporate 'rest days' into my schedule.
Look after yourself
Oh George I have felt horrible on week off cape this time. .wobbly, sicky, bone pain ..hoping Sunday back on will improve. Guess the body rebels when chemo just stops after 2 weeks.
Haven't slept at all during night so hoping to go back for nap later ....