My Onc doesn't like me going abroad whilst on Capecitabine. So this year, I'm going to Orkney! He would give me time off if necessary but he is adamant that I should be in reach of an NHS hospital just in case.
Yes it's certainly possible. I've been on several holidays when actually taking capecitabine....and got cover from Mia and on my recent holiday from eurotunnel...Discuss with your onc...I stopped capecitabine for a couple of weeks to allow my feet to be on good form...because after a few cycles they get very painful towards the end of the cycle...I restarted capecitabine whilst still away....last weds because I knew I wouldn't have side effects before end of hols..and had arranged to do so with my onc.
Hi lovely ladies and especially Helen who is having a rough time of it right now. Thanks for the update chocolates and please pass on my best wishes to Helen that she gets home soon and this has just been a temporary blip.
Hi and welcome to Marie123. A difficult time for us all when we hear that we now have secondaries, wherever they may be, so we do all understand the lows that this news can bring. I have had mets for nearly 7 years now, firstly in my bones and then 5 years after that diagnosis they were found in my liver. I have had lots of ups and (more) downs over this time and the knowledge and support we find on here is just the best. The things I have found out about what to ask for regarding treatment etc has been such a life line for me - quite literally as I made sure I had a test done on my liver mets for HER2 and found out I now was HER2+ having been HER- for over 10 years. This of course changed my treatment options but if I hadn't learnt about the fact that recpetor status can change by reading this forum I would probably not be here now as my treatment wouldn't be the right one. Support has also been great and the secondaries part of this forum is visited by so many ladies who unfortunately have to stick around - just like our mets - and therefore get to know each other which is why we end up having little expressions such as 'angry eyes' and talking about dc (Daniel Craig) and ph (Paul Hollywood) and Helen's 'boys' as we joke about how nice it would be for them to brighten up our day Please ask any question, whether its about Helens boys, secondaries, treatments, scans or anything you like as someone is bound to be able to help.
Take care everyone else, sorry I've not mentioned everyone but just to say your holiday sounded fantastic pam01 - forget the washing, you won't be needing all those cruise clothes for a while unless you slink around the supermarkets in them LOL.
Nicky x
Hello Chocolates, thanks for keeping us informed about poor Helen. All my best wishes for a swift recovery and a return to her own home - you always feel better in your own bed. Best wishes to all. Barton.x
Belinda, I'm not sure it is working. I think I feel slightly more short of breath. My oncologist is in India so will talk to him when he returns. Do for a scan in April. Very tired from this chemo. Having to get the neulasta injection doesn't make it any easier. My friend, John has mets and is on gemcitabine too. He had two treatments of it and his platelets dropped. He was coughing up blood and had to be air lifted to Philadelphia. He is home now but giving him a month off before they decide what next. Hoping your port works well as mine. It has been in for 9 years now. Good luck!
Afternoon everone. Ive been on holiday so ahve only had the chance to skim through the thread but first of all best wishes to Helen.....hope shes soon sorted and home ;and love to Sheila......such horrible news and so scary...but hopefully plans soon in place to treat this.
So Ive had a great holiday...couple of days in Rome and then cruising...Olympia, Athens, Ephesis, Istanbul, Naples...planned my capecitabine tabs to have a break whilst away and so feet were fine...lots of walking and exploring! now left with washing and ironing to sort...but hey ho!....back to drizzle in south wales......but daffs not open yet in my garden so not missed them....feel ready to face next stage of the journey!!
Good luck to everyone facing tests/results this week.
Good Morning, to all my new lovely friends. I haven't cried this weekend, so hopefully I have turned a corner. Good luck to all who have treatment this week . I will be thinking of you. I'm a bot confused, what is angry eyes ?
Once again thank you
M
Morning ladies. I've not been on for a few days so good luck to everyone having treatment this week and get well wishes to Helen. Hope she has been able to take her "boys" in their aprons into hospital with her to keep her and the other patients entertained and to make sure the place is nice and clean!! We had the most beautiful day here in N. Devon yesterday fabulous sunshine and even I dispensed of my coat at one point though still had boots and two pairs of socks on. It's amazing what a bit of sun does and how it makes you feel. We were down near the beach and it was as busy as a summer day. Today? It's piddling down again just for a change.I only have to go to be a human pin cushion this week bloods one day then bone jab another. Hope everyone enjoys what is left of the weekend.
Chocolates,thanks for letting us know about Helen. As the others have said please pass on love and best wishes when you are next in touch with her.
Sheila, good luck with the treatment, either option can work well but fingers crossed for steriotatic radiotherapy as it's so precise and a bit easier to cope with.We're all with you.
Nice and bright here in Sussex. Hope you all have as good a day as possible xx
Hi chocolates, just seen your post about Helen. Would you give her my love when you hear from her. I'm sure she will be fine. As you say she is a strong lady.
I wonder if it is the morphine that as caused the low blood pressure as this can be a SE.
Lots of love Sheila. Xxx
Hi Janette, add my angry eyes to the list. Waiting is a nightmare!
Love Sheila. Xxx
Belinda, So glad you got a port! Funnyface
Oh my goodness, what lovely supportive new friends. Thank you so much. Today has seemed a bit brighter with the sun shining and all of you.
Take careM
Sheila and Marie, just want to re-iterate what everyone else has already said...this is a very rocky road with lots of ups and downs....sometimes hard to see a way through but we all seem to eventually.
I have just had it confirmed that i now have a pulmonary embloism to add to my problems. m now on daily injections and am terrified that this means my mets have spread. Have a pet scan in 2 weeks and then the agonising wait.......
At least the sun is shining today!! xx
Thanks Tournesol, I hope all goes well with the trial. I believe they really look after you when you are on these. Good luck.
Lots of love Sheila. Xx
Hi Marie, please don't feel guilty! We are all the same. Sometimes we can forget what is happening and then it comes back to haunt us and we feel so miserable! As Bev says it really does get easier as time goes on and there are some excellent treatments out there. Don't be afraid to be your own advocate and if you have any concerns at all see your onc.
Take care and come on here as often as you need to.
Lots of love Sheila. Xx
hello, hope everyone is having as good a weekend as possible. Sheila, I was sorry to hear your recent news but your onc sounds very good and from what I've read the treatment can be very effective.
I found out last week that I have a place on a clinical trial and will be starting next week. Feeling nervous about side effects but will be glad to get back on treatment.
Thanks again everyone. Hoping I get MRI next week and then treatment plan. It would be great if all was sorted by middle of April. I have read some inspiring stories and these help me to keep positive. My daughter found one where a lady has brain mets and these have been kept stable for 7 years with faslodex which is what I am on at the moment. If only treatment worked as well for everybody.Nicky, it is pants! I do have a lot of faith in my onc though. He got me through a bad patch last summer I'm sure he will do his best to get the best treatment for me now.
Dawn, thank you. I'm glad the kadcyla is working and giving you some relief from pain.
Helen, hope you are coping with the chemo and that your pain is easier.
Have a lovely weekend everyone. I think today is supposed to be the best weather wise so make the most of it!
Lots of love Sheila. Xx
Hi everyone,
I am very new to this , so sorry if this is very muddled.I was diagnosed with bone mets 2013 . I am on Tamoxifen , bone injections and have had raiotherapy , However , it feels like it has just really hit me. I cry most days, and feel guilty for being like this, Is this mormal ?
adding my thoughts & hugs Sheila as you start out on a new treatment for this latest problem. It was interesting how many commented on their runny eyes during treatments. I used to find mine ran a bit more over the years on herceptin but more recently on Kadcyla they tend to stream at times like leaky taps! but on re-reading your post I think you were talking of one eye so your onc was really on the ball picking up something other than just a side effect. So here's hoping his quickness - and yours on reporting it will mean a really good response to whichever treatment they decide on.
I seem to be getting on ok with Kadcyla - it will be my 8th treatment next week. I don't seem to get any side effects other than runny eyes & nose. I also seem to get many days now when I don't need to top up my breakthrough meds and last week at my pump refill hospital visit I asked if they would reduce the morphine in the pump to see how I would manage. (I have morphine/bupivacaine & clonidine in the mix) 10 days on and it seems o.k. I had been getting really bad breakthru pain in my thigh and that has stopped but I still get quite a few of the nerve type sensations which although not painful can be unpleasant.
Helen I am so glad that someone is at last taking your pain problems seriously. It is so hard living with it day in day out. I hope linking up with macmillan nurse will help to get you proper management of your pain. It took me a long time and although it isn't perfect by any means it is better. Keep on keeping on!! they need to experiment to find what is going to work for you.
Belinda I hope your port is settling in 🙂 and you get to appreciate the benefits of these great little gadgets lol. If you find it is painful when accessed do ask for numbing cream to use each time. I find mine feels nothing probably because it is sited quite high up with only a thin layer of skin over it.
Congratulations to all of you who keep this thread going. It is such a amazing resource of information that we all share and just so supportive and though not a frequent poster I do try to keep up with all the posts.
Dawn
xx