I had a great time in Ireland we did too much as usual well tried to fit everything in. We flew into Cork hired a car went and kissed the blarney stone then went to Kinsale where we were staying the night, next day drove to Co Kerry stayed in the mountains for 2 nights which was lovely, we drove round the ring of kerry which the views are breathtaking then we drove to Co Clare on the way drove round the dingle area, and stayed 2 nights before getting a flight out of Shannon. My feet stood up pretty well as we were in the car quite a lot of the time although have been suffering a bit since being at home. I have had an extra week off chemo as we were away and that has certainly helped.
When does Jacquie get back from her trip?
Kay glad to hear your markers are still coming down.
Cathy hope you had a lovely time in Switzerland you lucky thing.
I’m keeping my OH busy with a list of jobs, I think he can’t wait to start his new job I think he thinks it will be easier to work than be at home.
Just back from my weekend in Hertfgordshire. Made it to Hatfield Palace, Beli, and thought of you! Even managed the 2 mile walk around the park though my feet are complaining today.
Glad you had a good time in Ireland, Beli - definitely on my list of places to go to.
Think, Jacquie, you are back this weekend - you must let us know all about it. Really keen to sign up myself. And the weather has been fantastic for you - unless you had to do lots of walking and it was TOO hot!
Have had a wretched 2 days - some wierd reaction to the Zometa that has now passed (to the extent that I am writing this from Heathrow- off for business). I have never been so tired in my life before…involved looking up the word somnolence. I am going to mention it the next time I go to the hospital as it was very very strange.
Glad you had a nice weekend in hertfordshire…we had a fantastic long weekend in Switzerland. My son was on top for which was a delight, he loved it and we went to a music festival after dinner each night,
Anyway like you kay must be quick, need to check the departure board!
Girls ~ just to say I went on a Odyssey break a year ago in April and is was Great! cant tell you what we all did as the element of surprise is what its about! go if you can!
Beli - yes it was really strange and I probably should have rung the hospital to discuss it as it actually really upset me how down I was, I think that its just harder to cope when you are tired and I was so tored I could hardly move. Have you been on zomsta the whole time ? How do you feel after each infusion?
Hi All,
Sorry I didn’t report back straight away but have been catching up with things. Odyssey was AMAZING. Absolutely brilliant from start to finish. You HAVE to go if you haven’t already. Don’t waste any time. The people are so lovely, they really took such good care of us. It was just a shame there were only 9 of us, and they had space for 14/16. A few had had to drop out at the last minute, but basically they’ve already raised the money, and it costs them the same to put it on for 9 as for 16. So tell everyone you know. They run them in the West Mids/Wales region, Kent and Scotland, and are for anyone who has had cancer (or is still undergoing treatment).
The weather was brilliant and the whole element of surprise was such fun. You litearally didn’t know what you were doing until you arrived at each activity. We all had such a great laugh, and it was a total rest from normal life and the responsibilities of family etc.
I am fitter and tanned and more refreshed than after 10 days in Spain with the family!
Go on the website and get booked on - you can always change dates if things crop up.
So how is everyone - some of you have had nice breaks. Kay, where did you stay in Herts? I live really near Beli and Hatfield House too. Beli, Ireland sounds great. Can’t believe you’ve been away with work again Cathy, especially after feeling so unwell. I’m glad you had such a good time in Switzerland.
Manon - glad you’ve booked onto Odyssey - you’ll love it. I think Dawn’s jetting off again for another holiday soon! and Tracy is going to kick some ass at the hosp tomorrow, to see if they can make her feel better.
It’s good to catch up with everyone.
lots of love
Jacquie
Have replied on another thread about Odyssey but having read what you’ve posted here, I am even more certain about booking in for one soon.
I stayed in Wadesmill in Herts and had a really lovely weekend, thanks for asking, Jacquie. My feet also seem to be now on the mend from the walk around Hatfield Park which is good!
Hope the recent trip went smoothly, Cathy, and you are feeling fully recovered.
Sorry Cathy haven’t been on line recently weve had a few probs at home. I have been on Zometa the whole time, I know sometimes ladies do have a few problems lets just hope it was a one off and you will alright in the future.
Hows everybody else doing, glad you enjoyed your time in Herts Kay where did you stay in Wadesmill.
Glad you had a great experience Jacquie on your Odyssey hols.
Anybody know how Dawn is doing haven’t heard much about her recently.
Tracy what was your decision when you were at the hosp.
Can’t remember the name of the place we stayed in Wadesmill - it was an Old English Inn (courtesy of my Tesco vouchers!). Dawn is off on her holidays again - think she is away for 2 weeks and went last week. I too am off tomorrow but just for a week in Cornwall with the girls (and Hubby). Just hoping the weather will be better than the forecast indicates! Don’t mind if it isn’t that warm, just so long as it isn’t wet.
Not much news really from me - spent the morning at the hospital as starting my 5th cycle of xeloda. Feet and hands have been much better on the reduced dose so am hoping it is still doing the trick in terms of controlling the tumours.
Tracy - how did you get on at the hospital? Hope you are feeling a bit better.
what dose of Xeloda are you on now? I am also having the hand foot thing. My hands are OK,but my feet are bad. I am having to limit my lifestyle - ie no dog walking, dancing etc to keep my feet OK, so get rather frustrated. If it is working though It is worth it. I suppose I will have to wait and see my next scan results and if it is working stick with it, but if a lower dose works and reduces side effects - I want to ask oncologists to let me try that. I am already on a lowish dose - 1650 mg twice a day. I would be interested to know if anyone is on lower dose and still getting good results. I know Pink Dove is a good example! It would be good to know if there are others getting good results on low dose too, as then can argue with oncologists if they don’t want to try lowering my dose!! Last time I mentionned going on lower dose, it they didn’t seem too enthusiastic, instead talked of coming off Xeloda and going on Vinorelbine - I would prefer to save that for later really!
Also is anyone on same dose, but longer interval between treatments? I am two weeks on and one week off at the moment.
I have been on xeloda for 20 months now and have two dose reductions to cope with hand/foot thingy. I started on 2000mg twice a day, dropped that to 1750mg x2 and eventually to 1500mg x 2 (last Christmas). My feet are a veritable mess but that is more my fault, I think. My hands have been fine but I do wear gloves and loads of cream most nights. (I sometimes give myself the night off for a treat!) I would ask if you can knock out the little pill and just do the three biggies and see how you get on for a few months. If they did put you on vinorelbine, you could presumably go back to xeloda at a later date as it has not failed you yet.
I have been on the lower dose of Xeloda for 2 years 1500mg twice a day, my tumour markers have been going down slowly, I do from time to time have an extra week off if I’m going on holiday or have a special occasion to deal with, my onc is always happy to do this as my results have been stable for some time now. I was on a bigger dosage at the beginning but I was unwell so onc lower straight away. My hands and feet are sore at times or very dry and split.
I am a relatively new liver chick but have no experience of Xeloda as am still having first line chemo.
Thought I would mention that I’ve just finished reading Lopsided by Meredith Norton where Xeloda hand/foot syndrome had her crawling on the floor and unable to use hands to open doors etc. She was being treated in US. Interestingly, she put up with it until her doctor in France prescribed three pills and 12 hours later she was fine. No change of dosage. Unfortunately she doesn’t mention which drugs, but there’s obviously something out there.
Thanks everyone for your useful comments. It’s weird how differently these drugs affect us isn’t it?. My hand are OK, just slight redenning and tingling. It is my feet which are the problem, perhaps I should try and walk on my hands!!
I might read ‘Lopsided’. I haven’t read many ‘cancer experience’ books - just Jane Tomlinson’s two and Next to me by Gloria Hunniford about her daughter Karen Keating.
Hello everyone. I sincerely hope everyone is doing well. I have been following these threads for some time. Can anyone give me the link for Odyssey as my younger sister has just finished her last chemo( she is triple neg. so no treatment options) and I desparately want to do something spectacular for her. Have read posts saying what a wonderful time they had on a Odyssey break, tried to google it but got 2 zillion pages. Any help much appreciated. TY.
It’s www.odyssey.org.uk. If she has a tiny sense of adventure she’ll love it. They will take really good care of her. It’s just a shame you can’t go too!
Jacquie
Back from my holiday in Cornwall - had a really good time despite pretty poor weather. Went to the Minack Open Air theatre and actually got rained out! The performance had to be abandoned because of torrential rain - very impressive though as you could see the rain coming from across the sea. Managed a couple of cliff walks though (despite the feet) and visits to Heligan Gardens, St Michael’s Mount and the Eden Project. Also ate at RIck Stein’s Seafood Restaurant at Padstow. Just had one quiet day when I didn’t feel too good and struggling with my feet, so am quite pleased!
Feet are quite a bit better on the lower dose - am now on 1500mg x 2 a day, Jumpforjoy. Started on 1800mg and then went up to 200omg for 2 cycles but was getting really painful hands and feet as well as awful diarrhoea, so he reduced it to 1500mg after the 3rd cycle. Am now on my 5th cycle and doing really well - onc had written to me to say that my tumour markers were 21 after the 4th cycle (were over 400 3 months ago). Like Jenny I wear gloves and socks at night with lashings of moisturiser inside and that seems to help more than anything. Also am being very careful about what shoes etc I wear - have been wearing my walking boots for anything of any distance. I get lymphoedema in my legs (as well as my arm) and the walking definitely helps that, so am trying to strike some kind of balance.
Hope everyone else is doing ok - trying to catch up with even a week’s posts is virtually impossible!
Hi Kay,
Good to hear you. Glad you had a good break. It’s years since I went to Cornwall - I recognise all those places you mentioned with fond memories.
That’s really good news that your feet and hands are improving. About time too! It’s hard to believe what a real pain and hindrance these side effects can be.
Talking of rain, my two eldest are just back from a week’s camp in Somerset so there’s loads of muddy washing to sort out - you can just imagine. My son got his A level results and while being one grade off his offer, persuaded them to let him in to Nottingham Uni as hoped for 2009, after his gap year. Now we’ve just got R’s GCSE results to look forward to this week!
I don’t know about anyone else but I’m finding the olympics a bit of a hurdle (excuse the pun) - they all keep talking about having another go at a medal in 2012 and I’m thinking…well, I just hope I’m still here in 2012. Sorry, didn’t mean to depress anyone but it’s getting to me at the moment. I’m having a great time going to the theatre, just been to Oxford for 2 days just the two of us, etc, but I get home and the bl**dy bc is still here hanging round my neck.
I’m tired of the mental gymnastics of forcing myself to look forward to the next thing. It’s tiring!
Okay enough rambling. I just had to get that off my chest to those who understand and who won’t be alarmed at me talking like this.
Much love and hugs to you all
Jacquie xx
just an update on my sore feet problem. Saw the onc on Thursday. He has put me on the same daily dose, but for 10 days instead of 14. Therefore 11 days for feet to recover before next cycle.
Feet not too bad so far (on day 3). Am already using lashings of cream, taking peridoxine and Alpha Lipoic acid, and limiting my activities so I don’t think there is anythng else I can do! Hopefully the dose reduction will do the trick!
Thanks for any tips. I have found the forum really useful. Discovered Udderley smooth cream and Alpha Lipoic acid through this site.