Thank you Lavender…i have only just read your message and ‘ditty’ x
Dulcie xxxx
Pinkylou - I’m doing OK mostly. Have scans and onc next week, so will see if I’m staying on Cap for a bit longer as only scheduled to end October just now. How are you?
Dulcie - hope the chemo works for you and you don’t have too much bother with SEs. Have you got a date for Marsden?
Hi Gail5 why might you be coming off it…my brain…you probably have already said! When did you start it Gail?
I go the first week in October …i was hoping they might see me earlier…as i …think…i might have a new tumour growing quickly on mx site…yikes…
Too much ‘dithering’ has gone on between surgeon and onc…had mx early July…my drain was removed far to earlier! So so glad the Marsden are taking me on!
Dulcie xxxx
Hi dulsie , what a story hope you are ok Did they do a ct scan before your mx, how big are the lung specs ? I had breast cancer 4 years ago when I was 39 , I had a lumpectomy , 6 months of chemo , 30 radiation , sentinel node removed no nodes, they didn’t do a ct scan they did chest x ray and liver ultra sound clearest so I thought, I gave had a mammogram and a MRI of ny breasevery every feb since then, I have always had discomfort along my scar line, my cancer was Er plus which they realised when they removed the tumour, anyway this year I had my mammo which was clear , MRI can back investigatand nd it turns putt I have a tumour back in my scar line. They did c t an found 8 .5mm specs on lungs , so we did taxol and avastin 12 sessions , didn’t go alot but reduced my scar line tumour which was 6cm in length and about 2 in width,we don’t actually know whether dices are from first tumour or second as they are saying the new scar line tumour is er neg, but I didn’t realty they know, I am now on xeloda , I am on 3rd cycle but I seeing onc on 1st oct and surgeon as my chest has been stable since feb they now remove scar line tumour, I really don’t know sometimes, a couple of people of mentioned royal mars den , I will wait and see what happens on the 1st x
Sorry about my phone text , tumour was 6cm by 2 cm not inches , but I know it has only been there since since last year.
Hi again pinkylou …the first thing you say about …did they do a CT scan before mx…? They should have done …then my mx would have been a smaller op…no need for major surgery…
Your tumour size is similar to mine …plus you know far more than i do about lung mets…onc has given me the ‘brush’ off for weeks…until the Marsden requested them! My GP didn’t get anything either! I am still waiting for this 5 pages…about my lungs…i did look on onc’s screen piccy…and she couldn’t seem to find them?! But the Marsden are concerned …so at least i will be looked after…
Can they operate again on scar line…? only i haven’t got any spare skin where i think the tumour may be growing…the main tumour doubled in size in three weeks!
If you think your treatment could be better…ask to go there…
Dulcie xxxx
Hi dulcie how did the royal marsden know about you to ask for scans ? X
Also they said they may have to take some skin off my back , I just want it out and this lung situation sorted. I have been taking tamoxifen for the last 4 years an oestrogen blocker so that could of been controlling the lung specs , who knows x
Please PM me pinkylou! I would go and see your GP straight away and get an URGENT referral to the Marsden…it will depend on your PCT if they allow you the funding…fingers x because mine did!
Dulcie xxxx
Dulcie - I don’t think onc will take me off Capecitabine if she thinks it’s working. It’s just that my initial list of appts only has 6 cycles on it. I started at the end of June and I’m near the end of cycle 4. Waiting for appts is the pits, but hope the chemo works for you in the meantime.
Pinkylou - sorry you also seem to be having a time of it. Hope your appts go well too.
Hi Gail please let me know how you get on with your scans! I do hope it is working for you…and you can stay on it …if it suits you!
Thing of you also pinkylou …
Dulcie xxxx
Morning everybody. Just to say I have joined the cap club. I started my first cycle of Cap at 8am this morning. I took three big peachy pills and one small one (will repeat again at 8pm tonight). The Sister in the chemo unit explained things to me, Lanzaprozole to prevent acid reflux, anti sickness drugs to help nausea, and moisturiser for my feet. They also gave me emergency contacts, so everything has been well organised. Apparently I will have at least three cycles initially ( am also having Herceptin and Zometa), and they will then review things.
Last night I went onto Amazon and ordered some of the Utterly moisturiser with Urea in it (as others have recommended it), together with pure silk socks and gloves, as I thought I could put these over the moisturiser, and they would be nice and light to wear.
Question: How long on average does it take before the SE’s kick in? It’s my wedding anniversary next week, and my hubby has organised a special champagne day at Goodwood races for the whole family. Bit worried that the Cap will be causing SE’s, and I will spoil things if feeling rough.
Hi Lemongrove welcome to the capecitabine club. I am currently in the week free period of cycle 10. I think everyones experience of side effects is different. My experience is that i have had little in the way of side effects and have never needed to use the anti emetic or the loperimide. like you i ordered the udderly cream(just ordered the third one yesterday BCC should seek commission!) and started to use it but early on had very few probs with feet or hands. Over the last 2 or 3 cycles my feet have been very dry and durng the second week of the cycle have hurt to walk on. for a few days I have to wear different shoes each day cos they seem very sensitive to rubbing and each shoe touches my foot ina slightly different place. I have been alternating the udderly with flexitol heel balm which doesn’t feel so nice but has higher amounts of urea and i think gives added moisturisation. I have also had a few days at the endof 2 weeks taking tabs where i feel more tired…manifested mainly as a greater struggle in getting up. I have been taking 2000mg twice daily but i am considerably larger than you and prof has been threatening to reduce it over the last few cycles but one thing and another, (at one point it looked as if markers were beginning to rise but then fell again and then he wasn’t in clinic!) has meant I have remained at higher dose. My markers haven’t really reduced on it but have stayed between 50-60…so I guess stability is the next best thing!
With a bit of luck you wont be having any side effects at all next week. Pamx
Hi LG - I’m just ahead of you - I started thurs evening and have just taken my 4th dose - I’m not a little lady so I have 5 big tabs each time! So far so good - a slight looseness, and some flatulence afer dose 1 but touch wood, I can cope with that! Creaming like you on Udderley - bet the cows never thought they’d be joined by cancerous ladies!!
Keep updating as you go!
Nina
hi lemon grove I love good wood, I understand everyone is different , I am on my third cycle , I have had a big of sickness and acid reflux , hands were quite sore not feet , I put aloe Vera on them , and moisturiser , xx
I started on Wednesday Lemongrove and sitting here wondering when the se’s are going to start…and what they will be! I have had to take laxatives…but nothing at all! I did sleep last night with my arms ‘wrapped’ around a plastic bucket! What a sight…
I hope you get to have a wonderful day out…and good weather too!
Hi everyone x
Dulcie xxxx
Hi all Lesley I’m on cycle 12 and had v little se upset belly mainly red and dry feet I’m on 4big in morn 3 big 2 small in eve u might not get a lot of se sum don’t its norm v well tolerated I told my onc its like I’m not on chemo god help the day I have to stopp I hope the se are gd to u don’t sit around waiting for them to happen get out there and enjoy y self hi to all newbies welcome to club I don’t post often but always here if any one wants a chat tc Laura xx
Thanks for the replies to my question - very encouraging that the SE’s seem to be fairly mild for most.
Day 2 and no SE’s yet, so hopefully I will be OK and not spoil our day at Goodwood next Wednesday.
As I’m writing this post, my little 7 month old grandaughter is laying fast asleep in bed next to me clutching her teddy - so cute. My daughter bought her a sit in walkie thing, and she likes us to push it up and down the hall (preferably at break neck speed). We’ve been doing that all morning - hence why she is now so tired, and I’m laying on the bed!
I am sooo envious Lemongrove …it’s so lovely to have your precious granddaughter with you …mine live across the world ( 2 boys)…i have to ‘close’ off to that…my older boy loved to sleep in my bed…last time they came here…he talked all night…on one occasion…he was so slim when i hugged him i thought he would break…!!
Dulcie xxxx
Lemongrove - as Herbgarden says, everyone seems to be different on this one. I had acid reflux pretty quickly but looks like your meds are sorted out in advance so you mght be OK with that. Feel a bit tired sometimes but it passes fairly quickly usually and hands are just starting to become more of a problem on cycle 5.
Pam - I struggle to get up too, but not sure if it’s more to do with the student flats across the road. Since the smoking ban they hang about outside smoking late at night and can keep us awake at night.
Nina, Lemongrove and Dulcie, hope you continue to have few issues with SEs.
Laura - Good to hear you’re still doing so well on cycle 12. Hope I can last that long. My unit has someone on over 60 cycles which would be great.