Breast Cancer Care Forum

Hi again thanks for your input Mo. It made interesting reading.  I am still taking ranitidine and gaviscon, my reflux isn’t too bad.  It is interesting how opinions differ, when I saw my GP about four or five weeks ago he also said to continue with all of my meds.  It was after that when I read up about the SEs and mentioned it to the Onc and he said to drop the Lansoprozole -‘for a few weeks’ - to see how it goes. As you say it is a matter of balance   love to all,   x ... View more

Hi everyone hope you are all as well as you can be. I am about halfway through my eighth cycle now, looking forward to my week off next week    I missed my last cycle because I had awful pain in my upper abdomen and back so they decided to miss a cycle to see if it could be the Cape causing it. They also ordered a scan which came back stable—yay!!!   I then got a bit proactive because the Cape seems to be doing okay for me and I don’t want it to stop.  I read through the side effects of the other meds that I am taking, mainly for reflux and I discovered that long term use of Lanzaprozole can cause these problems- I have been taking it for years, at least eight... long before being diagnosed  I showed it to the Onc and we decided to stop it and restart the Cape.  Well all of the pains have disappeared- though I still suffer reflux- taking Gaviscon regularly. This cycle I am a bit more tired and constipation/diarrhoea but I think that I am getting used to the Cape again after my break.   I am taking 2000mg twice a day so 4000mg, seems a lot but my SE’s are manageable - they do say that there could be room for a reduction in dose if necessary    fingers crossed and lots of hugs to everyone    Lynne x ... View more

Hi mo.   Thanks for your input  i had my scan today and am now awaiting results.  My GP advised me to take Oromorph regularly ie. 4 times a day for 3 days and anti-sickness 3 times a day as well. The pain is much better and the nausea but I hope they don’t reappear when I stop the meds. Of course we all know how hard it can be waiting for results.   Hope everyone is as well as they can be.  FF hope u are feeling better and that your energy returns.   also Carolyn, hope things are staying stable with you   take care all   !ynne x ... View more

Hi again everyone. I hope that things are still looking up for you Carolyn and that everyone else is as well as they can be   I was supposed to start my 7th cycle last week but I have been having really sore pains in my abdomen, chest and back.  I was so disappointed when he said that for that reason he wouldn’t give me the cape until we had found out What was causing it.  Even though my TMs had fallen to below 100 for the first time in a long time and I have had few SEs which are all well manageable    The pain is really quite bad at times and I feel nauseas.....today I have started being sick as well. Has anyone else had similar——- he ordered a scan which came through for Thursday this week so not too long hopefully to wait for answers.   My husband wonders if it is gallstones and not at all cancer related??       ... View more

Hello Carolyn.  Just wanted to send you a big hug and to let you know that....along with so many others.....my thoughts are with you  xx ... View more

Hi again 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.   xx ... View more

Hi again Jay   glad you’re home and getting along with the cape so far.....hope the cape works for you..   after my holiday I had my bloods done before starting my 7th cycle and was pleased to see that myTMs hadn’t gone up at all....in fact they had fallen slightly. Off for bloods tomorrow for checks before starting my 8th cycle   there is also a thread - Xeloda/Capecitibane your top tips  please - which has loads of info and support...look out for it   xx ... View more

I take mine with or after breakfast and then after dinner in the evening.  I was told that it disperses into the bloodstream quicker if there is  food in the stomach .  The label on my box says to eat after and within 20 minutes of eating.     ... View more

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 Xxx ... View more

Hello Jacksy....I cannot offer much info but I have read something about this as well, but I do not know where  my oncologist is sometimes happy to chat and at other times not....I expect it depends on how busy the clinic is.....I will try to remember to ask him about it on a chatty day. Is yours approachable for these questions   xx ... View more

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 ... View more

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   Lynne ... View more

Hi Jayrand I had Pacitaxol followed by Cape. Although I didn’t have many SEs, so I had 16 cycles.  Felt tired , woozy and had nausea.  After the 16 cycles I had a scan, which showed tiny progression but on the whole it kept me stable but didn’t see any reduction.  After a seven week break during which I tried Tamoxifen- but the SEs were awful...constant and painful UTIs.....I went onto Cape.  I have had a huge drop in TMs and my SEs aren’t too bad.  Was due to start 7th cycle but I am on holiday now and Onc said to miss a cycle.  I was a bit worried but I am glad now that I am on a break.  It is very warm here in Spain, which is nice but I think the fewer SEs without the Cape is better. I will be restarting next Friday and wondering if my TMs have risen at all    Hope the Cape works for you as it has for me after after Pacitaxol was a disappointment    xx     ... View more

Hi everyone  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    Lynne x     ... View more

Hi Graceland girl.....I am pretty much the same with bloating and feeling full, but am hungry again.  I mentioned it to my Onc. and he said that it’s not unusual with my cancer...ie. peritoneum.  He advised me to eat little and often, which I try to do now.  I eat smaller meals with a snack in between.  One problem is that when I snack I tend to go for ‘treats’ maybe biscuits or crisps or cake.  Trying to have healthier snacks like banana or fruit. And Carolyn I am always being told how thin I look, but I am within the healthy weight range....... I lost a lot of weight during IV chemo last year but have gradually put some back on   agree with everyone else as well regarding feeling unwell in week off.  Diarrhoea and nausea etc.   I was due to start cycle 7 tomorrow but mentioned to Onc. that we were hoping to go on holiday next week so he insisted I have a cycle break.  Hope the TMs don’t go up too much, but really looking forward to a week in Spain. ,     ... View more

Hi Nicky.  We also use Axa Ppp and have done for three years.  I have claimed once on a trip to Majorca for UTI and submitted the receipts when I returned home and received a cheque back from them within a week.. Like you say it Covers both of us = another benefit for us is that there is no age limit, a lot if insurances only cover up to 70 and my husband is 74 now.and has had a minor heart arrack. i discussed the terminal question with my Onc and he said that he didn’t consider.secondsry as terminal, these days it is incurable but treatable and he said that he saw no reason why we shouldn’t be having the same conversation next year when it is due to be renewed again.  He did say that he can’t predict the future but then nobody can about anything. when I rang and spoke to the insurers I mentioned this to them and the lady asked me if I had ever been told that I had less than 12 months to live, I said no and she said that wsa all she needed to know. Do you have any connection to the military - we both served and were told that the price was discounted because of that.     ... View more

...Hi Graceland girl...   I think that you should  definitely go if you feel  well enough.  We enjoy USA and have been several times since my diagnosis in 2012.  We do road trips and have a hire car so can - on the whole - do things st our own pace. The last time we went We had earlyish nights, but were up early.  If you can have a time to relax each day and do things at your pace and your friends understand that then you can enjoy it.   I am just finishing my 6th cycle...we have a holiday in Italy booked for May but I have a secret desire to go back to the US later on in the year .... just hoping that the peachy pills continue to work their magic   Having said all that I also enjoy day trips to the coast or nearby attractions... just nice to have something to look forward to    Let us know what you decide   xx     ... View more

Hi. I am just about to finish my 6th cycle...week off starts Saturday. I have two red spots on the back of my right hand. I thought that it was due to the SE of dry cracked hands but maybe not. My fingers and palms are dry and cracking a bit, but the udderly cream helps a lot. No sign of any hair loss yet, so fingers crossed..though my Onc did say that I was unlikely to lose it again. Hoping that my week off doesn’t prove too troublesome I usually end up with Diahrea and nausea. Love to all Xx ... View more

Hello again Helen.  I agree it would be nice to meet up again - and there are so many places to do that.  A bit nearer the time we must find out where you are staying...unless you already know.  Biking had really  taken  off here now so I expect places are booked up quite quickly    xx ... View more

Hello again everyone.  Interesting to read about everyone’s weight gain losses.  I lost about a stone and a half on the EE combo which didn’t work for me and gave me dreadful mouth ulcers .  I have put about half a stone back on, but ONC still mentions me looking thin.  I am within the Bmi range for my height so don’t worry about it too much. I have intermittent diahrea which usually lasts a day....but it tends to be one or two explosive sessions (sorry TMI) and then I am fine for the rest of the day.  Happens every few days and I am trying to see if it comes with any particular food but it seems random.  I try to eat little and often, but fitting in with pills and husband - who is a three meals a day man - I have adopted your rice pudding pot for my evening pills, seems to be okay.   I am half half way through my 6th cycle and my fingers are dry and sore but the udderly cream helps.   off to see the GP in half an hour, hoping to persuade him to prescribe me some mild sleeping pills, sometimes I am awake nearly all night, and then off all day.  Will see what he says..   love to all    Xxx ... View more