well I seem to be bucking the trend because my week off is definitely my best week of each cycle!
Hope the flu jab goes well Belinda. I had mine last Thursday, and from Saturday it was quite sensitive and sore, although much better now. The surgery were very good accommodating me to fit into my chemo schedule - the vaccine only arrived Thursday lunchtime and I got mine that afternoon, the first one they have given out, as the flu surgeries don’t start until the end of this week.
Can I ask which cream people are finding most effective for the hand/foot effects? I have both Cavilon and Flexitol, but I’m not sure when to use which. The Cavilon is a barrier cream so presumably helps stop problems arising whereas the flexitol I think is more of a treatment if problems occur?
I’m at the hospital as I write this, just had my bloods ready for the next dose of Abraxane, then round 5 of Xeloda kicks off tomorrow.
Oh Nicky, I hope the blister is not painful! I have had heel cracks but haven’t had the blisters.
Hi geewhiz, I found Flexitol was marvellous, at first, I haven’t tried Cavilon but at the moment my wonder cream is Eucerin Intensive 10% Urea Treatment Cream. I found whilst Flexitol was an effective barrier after a few months I needed something to sink into the skin and at the moment Eucerin is very effective.
x
Well, the weather has cooled down over here, windy and a bit of a drizzle… the sun has disappeared and my feet are much better! Not my hands though, the skin on both thumbs are peeling off. Woke up really tired today and with headache (better now).
But got some really good news yesterday: my tumour maker has dropped down to 39 from 73 during my 2nd cycle!!! I couldn’t quite believe it and made the nurse to repeat it. As you said on another thread belinda, “Just after I put the phone down I burst into tears (of relief!)”.
Here is some positive news for all you Xeloda users and hope it works for a long time for all of you.
Whooo hooo that’s fabulous news about your markers. My understanding is Xeloda is often slower to show a response as it’s in tablet form…so 2 cycles in and a huge drop in markers…wonderful!!!
x
hello ladies or is it ‘xeloda princesses’?. I am soooo pleased to have found this thread and hope to get to know you all over the coming months. I have just started my second cycle of xeloda after completing 6 cycles of taxol & avastin in August (had mets in liver lung & skeleton but now just one left in liver).
So far the SEs from xeloda haven’t been too bad (moisturising hands & feet like crazy to put off the inevitable) but I did feel awful 24 hours after completing the first cycle. I wasn’t sure if it was SEs or if I had picked up a bug (lots going round at work and my son’s school) so can’t wait (haha) to see what happens after this cycle completes.
It is so good to hear of people doing well on this drug - M, what fantastic news, it almost makes me brave enough to ask what my markers are now!
Hope you all keep well and keep posting. xx
Hi poppy, I’m sorry you have to join us but I hope Xeloda works wonders for you. x
PS…if anyone is about to have the flu jab, mine went well, felt a tiny bit yuk after last year’s jab but I’m full of bounce after this one.
Thanks for the advice re Urea cream Belinda - I read your post as I was at the hospital getting my abraxane, so asked the pharmacist there. She didn’t have the Euderin, but gave me an Udderly one with added urea. It is very pleasant to use and sinks in very well.
m1yu, great news, so pleased Xeloda seems to be working well for you.
Nicky, hope your feet are getting better. I get very sore feet and blisters after walking only a very short distance, which is very frustrating. Depending on how I respond once my abraxane/Xeloda treatment has finished in December, the plan is for me to continue long term on Xeloda alone, but if that is the case, I think I may ask about a dose reduction: I’m on quite a high dose at the moment (2,000 twice a day - roughly baby elephant dose I think!), and I don’t know if I can cope with enforced not walking on a “permanent” basis.
Anyway, just starting cycle 5 of 8, so well on my way - and only 9 days until I fly home to Oman with my son for his half term holiday and we can be together with my husband and daughters! I’m getting an extra week off between cycles 5 and 6 to allow this to happen, so looking forward to a lovely holiday!
Hi all – glad to hear good news from many of us. Had my flu jab this morning, and, as in all years past, no problems whatsoever from it - can’t even feel where the nurse did the injection. Don’t forget to get yours soon!
Well this week off has been fantastic so far, no SEs so far and no more peeling on my feet, I’m sure this is what a week off is supposed to be like! I feel encouraged by how well I feel to book a short break to Sorrento during my next week off to celebrate our 10th wedding anniversary.
I too went for my flu jab this morning, I was annoyed at first it would mean missing the England - France rugby, but judging by the final score, I’m glad I missed it! I did tell a little lie, when asked how I was, because I have a stinking cold, but blew my nose a lot and ate some extra strong mints, to blow my nasal passages open to hide this fact, before I went in. If I have to wait, it would be 6 weeks until I could next have one because of going away. I work with too many germ ridden 4 year olds to risk going without as autumn/winter steps in.
Poppy sorry to hear that you have had to join us, but hope you are finding all the information you need. Hope you are encouraged by the longevity of Marilyn’s xeloda treatment and good news posted by m1yu and Belinda.
I ordered some of the udderly smooth cream with urea from Amazon and it did calm down and soften my blistered bits. So much so that I can’t see any dry bits left and the very pink bit is the same colour as the rest of my feet.
Julie I am on 2150 twice a day - does that make me a full sized elephant then? :0)
Oops Nicky, didn’t mean to imply anything! Mind you, elephants are beautiful creatures - we lived in West Africa for 6 years, and were very privileged to see lots of elephants, often in our garden, stealing the mangoes.
So pleased to hear you are SE free, and that your feet are better. My feet definitely seem better since following Belinda’s advice and getting a cream with urea in it - plus it is much pleasanter to use.
Has everyone got this awful weather at the moment? Coupled with chemo lethargy, I’m feeling very loathe to do anything much at the moment. Have a batch of crab apples waiting to be turned into jelly and cheese, but there’s always tomorrow!
It’s been really windy where I live for a few days and today is the first day without much wind and we’ve got fog! I live by the sea and it’s like an angry animal with the strong wind.
Tomorrow is my last day of my 3rd cycle. And this cycle has been the worse so far. My WBC and NEUT are the lowest since I started chemo over 2 years ago, and not surprisingly, I’ve got the worst cold for years. Hope I can get rid of it before I goes away for a 2 week holiday from the 24th.
m1yu - sorry to hear that your last cycle hasn’t gone too well! you’d hope that as your body gets used to the chemo, it should become easier - but I guess this isn’t the case. I too have had a stinking cold, it’s stopped streaming but has left me with such awful catarrh that I can hardly breathe. I had my chemo stopped twice because of poor blood counts, but fortunately this time they are improving, not ‘normal’ yet, but a step in the right direction.
After saying all was well, my foot is killing me!!! My right foot just under where the arch is, is really sore to walk on, it doesn’t look too bad, a little flaky and pink, but is so sore, the pain is not in relation to the appearance, as other parts look grotesque, but feel OK!
I hope everyone else is doing OK and m1yu if I don’t ‘speak’ to you before you go away, have a fantastic time!
Oh yes, horrid isn’t it Seems to be worse when I’ve been walking more than usual. My feet are very slowly improving, I think - two steps forward and one step back maybe, lol? I loved the mini-heatwave but my feet hated it!
Went to GP 2 days ago for planned medication review, came home with flu jab … yesterday was the start of a “week on” peachy tablets. Today I have a nasty sore throat… reaction to flu jab or, more likely I think, some germs were floating around in the waiting room. Grr! Otherwise I’m still doing well. It’s good being a Xeloda princess
Oh Nicky, poor you with a sore foot. Not only is it (literally) a pain, it is so frustrating as it affects your mobility too. Following Belinda’s advice, I managed to get a cream with Urea, mine is Udderly Smooth, and I don’t know whether it is a coincidence but my feet seem much better since I started using it. Previously I was getting blisters and sore spots under the ball of my foot after walking really quite pathetically short distances.
Sorry you picked up some horrid germs mrs blue - hope they fly away again soon.
Happy hols m1yu - where are you off to? I leave on 16th for two weeks in Oman, and can’t wait.
Best wishes to all the other Princesses and our Queen!
Hi all - my “royal” feet have been more than a bit hurty recently, so I’ve ordered some Udderly Smooth with urea - haven’t tried that variant yet, but have been a fan of Udderly for years, and am hoping for a big improvement. Thrilled to hear that m1yu and Julie are feeling well enough to go on hols, and hope you both have fun. *waves regally* xx
Hi All
Having a really bad week off. The diarrhea is awful and the rash on my face is terrible. I’m on lapatinib with Xeloda, I must be getting too much of the drugs because these side effect are terrible. All the skin on my face is pealing off and Im scared to cough. I’ve rang Clatterbridge and they have just told me to take max dose of diarrhea tabs, I’m there on Wed morning so ill see what they say when they see me.
Well I’ve had my moan now, time to watch the House of Elliot then off to the chemist for more drugs!
Oh Sue, that sounds awful - so sorry. Hope the max dose helps, and that they get you sorted out properly on Wednesday. It’s wretched when the drugs that are supposed to be helping us give such dreadful side effects.
I’ve arrived safely in Oman, despite the fog’s best efforts causing delays in Abu Dhabi. Lovely to be home and have all the family together again - and 37 degrees and sun!!
Oh Sue, I’m so sorry to hear that you’re having so many difficulties right now because of the treatments - and I guess it’s hard to know which of the two might be causing these problems. I do know that some of us just haven’t been able to tolerate Xeloda, and that might be happening to you - I hope your onc agrees a break or reduction of one or both of these treatments, so you can recover a bit. Sending love - xx
Thanks Julie and Marilyn
I thinks it’s the combination of the two drugs, I think I’m just getting too much.
On the plus side my cough has gone and I’m able to stand without pain for much longer, a real asset when waiting to pay for my retail therapy.
Julie do you live on Oman, sounds very exotic. I just love the middle east, I’ve always been interested in the culture and history.
Marilyn, hope you are well.
Been to the chemist and I’m now back on the sofa, watching my new TV.
Glad you arrived safely and home to be with your family. I’m going back to China, where I came from. Mainly to see a herbalist to reduce side effects and help with the immune system.
Just back from onc’s appt and he’s going to do a bit of adjustment with my next cycle because of the trip! Yey!! He’s asked me to take it for 10 days rather than 14 days so that I can enjoy my holiday. And then resume the normal dosage when I come back. Lovely to have an understanding and considerate onc!! He also told me not to worry about my NEUT. As long as it’s above 1.0, I shouldn’t worry. But a cold just might affect the count, so hoping for no hiccups for my blood test on Thur. Nasty cold is taking its time to leave me:-(
Sue, it’s bad enough to have one chemo! 2 at the same time? You must be really feeling the SEs. Hope they can do something for you on Wed.
Seems to be worse when I’ve been walking more than usual. My feet are very slowly improving, I think - two steps forward and one step back maybe, lol? I loved the mini-heatwave but my feet hated it!