Hello and thanks for your replies. I too am worse on my week off. I finished on Friday and since then have felt sick and got stomach ache and diarrhea has started and I don't want to do anything. My TMs go up and down each cycle. But as you all say, if the pills are working, it's a price worth paying.
Hope you all have a good week and Lynne enjoy Spain !
Love GG XXXXX
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.
Hi All, I wonder if anyone else has trouble after eating. Even if I have just a small meal now, I feel so full and bloated and need to loosen my clothes. But at the same time, I feel empty inside and want to eat.
Does this sound familiar to anybody ?
Hi Bon, yep doctors should read this site for sure. Variety as you say is the spice. i bought laxido over counter very effective without endangering or clashing with our meds.
Now this is interesting.... i have had HR pos for years, had biopsy done and i'm no longer HR pos, i am not HER either so i guess this means i have become triple negative, i will discuss this next time, we were stunned at the consultation, call me thick but i didn't think this could happen.
love and hugs
Hi Ramade, I've only done one cycle but almost immediately became a bit constipated. Not too bad as I tended towards diarrhorea before. Docs should read this thread. It is apparently possible with cape to have an explosion in the morning and constipation in the afternoon. They say variety is the spice of life. I've been prescribed laxido to offset the constipating effects of codeine. Seems to work.
Let's talk about the weather
love to all Bon xxx
i hope your platelets and blood spots recover before next round. Thanks for confirmation it’s not just me who spends half the day in the loo! Are you ok when on the peachy pills as for me it’s everyday on or off pills! I too eat bland food, soup, oven chips and baked potatoes, I don’t eat dairy but my OH has found lovely puddings for me made from coconut milk. They are a treat all from Sainsbury’s!
Scan booked for Monday 7.20 in the evening, I’m usually heading for bed soon after that so will be excited for a trip out in the dark.
results the 6th Feb. Hoping for stabilisation or improvement in liver as new oncologist described it as extensive liver lesions of all sizes.
Trying to stay positive.
Good luck to all on cape. Xx
I've had good news my tumour markers are now down to 1600 from 2900 3 weeks ago so going in the right direction. I’m on my third cycle of cape, I’m finding it quite hard to manage, I eat and then 2 hours later I’m on the loo. Every meal!! I’ve tried the Imodium given to me by chemo nurses but this just gives me worse stomach ache. I’m not sure what to do, it really restricts what you can do, I spend the majority of my time at home because of the tummy problems, just wondered how others managed it!
i have also had my dose reduced for 3rd round from 2150 to 1650. But no change to tummy or fatigue.
any suggestions welcome!
Good luck to all cape crusaders!
hi all,well i told the onc that i had bad constipation and he said no this meds gives you diarrhoea.
well i guess that's it then. i have bought some Movicol though, on the sly!
Hi Ramade, if you decide to give it a go get one as natural as you can, and if you find it helps it’s very easy to make your own, trust me if I can anyone can! Kxx
Metoclopramide is the third anti sickness drug i have taken, (been feeling sick for over a year now and only just started cape) and it seems to work better than any of the others. Still don't feel like eating.
Hi All ,
It sounds like we all have the same SEs...tummy ache, diarrehea followed by constipation and a sickly feeling after eating. Also my fingers have started to crack and bleed. But if the pills are doing their job, I guess I'll keep on popping !
Also, thanks everyone for travel advice
Love to all..GG xxxxxx
Hi Ramade, have you looked into taking Kefir? It certainly helped me when I had problems with infection after some dental work, which I appreciate isn’t your issue, but two friends of mine..one did have bowel problems, the other more digestive (ulcer and indigestion)..have found it has helped them, so it may be worth a try. Kate xx
Can anyone help, side effects are really sore tummy and either constipation or diarrhoea. Does anyone take gaviscon for this?
I don’t have any links to the armed forces but my Dad did and I think it was through him that I found out about this policy. I still think it’s pretty reasonable even without the discount. The past couple of years I haven’t been able to travel further afield due to being on chemo so have used Eurotunnel again for European trips. As I’ve said I’ll try and update the travel insurance thread and let this thread get back to its roots!
Having said that 8 hope all Cape crusaders are coping with the side effects and any dosage reductions help, but still kick the little uggers hard.
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.
Hi Graceland girl
Id say go especially as your oncologist has said you are fit to travel. Pace yourself as others have said. Since my secondary dx in 2008 we have gone several times to USA and also to South Africa on a couple of occasions. In fact we’re off to Miami next month as I’ve just had my most recent scan results and as I’m still stable and currently NED in my liver I have grabbed the bull by the horns! The stumbling block will be insurance. I have just taken out an annual (yes, annual!) policy with AXA PPP who will cover me and my husband for worldwide for £465 which I think is a good price. They don’t ask any questions about health although there is a question about being terminal. When I said that I had secondary BC but it was being treated and wasn’t curable they said that it was fine. They only do annual policies so if you can find a single trip one for less then maybe go with that. I will update (when I can find it!) the travel insurance thread.
...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
Hello everyone , hope you are all feeling quite well on this sunny day. I've lost count how many cycles I've had of Cape...I might be on my 7th one. I've been lucky that I haven't had any dreadful side effects. Mostly mine are feeling bloated when I've eaten even if it was only a small meal, and not being able to do anything strenuous. I need to sit down all the time. I do get diarrhoea but that seems to make an appearance on my week off ! Because I'm not feeling too ill, my friends want me to go with them and make a return trip to Graceland, Tennessee. Has anyone ventured over the water to USA whilst having treatment ? I asked my Onc what he thought and he said go, and I could take a break from the pills. I'm not sure if I will go as I'm a bit worried to commit mysel....but its nice even to think about it.
Best wishes to you all GG xxxxxxxxxxxx
hi Carolyn and everyone, i have just finished my second cycle so i'll let you know if the skin blemishes go during this week off as my platelets build again. interesting.
hugs to all xx
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
Hunger is something I don't experience. Would be good if it did. Most of my clothes are too big.
love to all Bon xx
Thanks for replying Carolyn, i looked in the mirror this morning and thought oh no now i've got skin cancer aswell. i feel relieved that it's a side effect and l'll talk to the oncologist aswell next time i see him. i scrolled back and see someone, i think Angelfalls wants to compile a list of side effects because our group are certainly finding a lot more than is described on the packet. Glad you had a good lunch, i find Cape makes me hungry and i'm piling on the pounds but,you know, i just don't care, i have ordered larger size trousers from Damart!
all the best
Hello all you Capes, i now have brown and red patches on my face, they came suddenly so i'm guessing they are a side effect of Cape, Anyone else? i look a fright!
hugs to all
Hi Carolyn and George
just back from oncologist appointment, reduction of cape by 20% not sure what that brings it down too, maths was never my strong point!
Apparentley tumour markers are down from 2900 to 2600. Not sure what this means but he said it shows it’s working. Does anyone else have tumour markers recorded my last oncologist never used them, so I’m in the dark a bit.
Feeling more positive today, scan on 28th Jan, results 7th February. Hoping it’s good news then and will then continue on 3 more cycles.
well it’s my 38th wedding anniversary today so going to have relaxing day with hubby. Film watching and chilling I think.
Hope all well with everyone else.