Hi Kelly, oh i am so sorry! That really is pants to put it mildly. I know nothing about your drugs, but the Marsden sounds like a really good idea. They saw me quickly nd still return my calls the same day!! Better than my local team!!
Living for NOW is wonderful, but hard. I hope your day tomorrow is as you would like it… and the next…and the next…and the next.
Cyber hugs, Goodnight.
Sadie Xx Xx
Hi Kelly, Sadie, Tina and all,
So sorry to hear your news, Kelly-I really hope the Xeloda works for you. I have heard lots of good reports about it. Wishing you good luck. It must be so hard for you at the moment. The Marsden is definitely a good option. Sadie - hope your temp.is more normal now and you can enjoy a few good times during Easter. Tina, hope you’re well. Weather cold here in Wales - hope it warms up again for hols!
All the best, Sarahxx
Hi ladies,
hope everyone is doing ok + coping + responding well to treatments 
Kelly I hsent you a pm yesterday- I’m so sorry you are having such a crap time. We all have everything crossed that you respond brilliantly to capcetabine. Big hugs x
how is everyone else?
I’ve been feeling ok, bit more tired now but I’ll be having my 5th cycle of chemo next week so fatigue is to be expected I guess. I’ve been having lots of pain + strange itching+ tingling in a huge area of chest wall. Under arm , right across chest + even around my back. This area was all affected by skin mets so I’m naturally very anxious about what’s going on 
Seems bizarre that the scan showed a good response in my nodes but I fear progression in my chest wall. But we all know it’s possible to have shrinkage + progression at same time. I’m hoping and praying my fears are unfounded.
We had a ball at the races last week. We didn’t go to ladies day Friday- we went to national day on Saturday. Got all glammed up, drank champers all day + hubby won over £1200 so a fab day all round
it’s my little boys 2nd birthday on 10th may + I want to take him to euro Disney for a few days. I’m a bit worried about going without insurance but we are going to drive and so could be back in the uk quickly if need be. We are going to look at prices this weekend + if it’s too pricey we will go down south instead, to Peppa Pig world. He loves peppa so he’ll love either option.
Looking forward to hearing everyone’s news soon
tina xx
Hi, Just a quickie Tina, if you do euro Disney, take a letter from your gp or hospital saying you get very tired nd cant stand long. Take it to customer services inside Disney nd they give you a special card - you can walk to the front of all the queues! We may as well get all the ‘benifits’ we can. I did it with my two nd we had a fantastic time!! Highly reccomend!
Sadie Xx
Wow that’s a brilliant tip sadie thanks Will defo do that- anything to conserve my energy has got to be worthwhile (+ queue jumping is another bonus lol!). Thanks again.
Hope you are well how’s the chemo going?
Xx
Weekly chemo is hard going!! Thursday nd friday are cr**. Cant do anything!! Nausea is under control, but no energy!! I hope the ability to lift my head up will start to return tomorrow!!
You are all in a pickle with the ‘new’ SE. When do you next see someone to get some answers??
The ability to queue jump is fab!! The look on others faces, but i would swap it all for a different medical history!
Sadie Xx
Hi sadie
sorry you’re struggling with the weekly chemo. It sounds tough Dont think I’ll be offered weekly taxol as I clearly resisted taxotere. How often do you have the avastin? Fingers are firmly crossed for you anyway. You always sound in good spirits + that’s gota be a good thing
I’m hoping to change my appt this weds so I see the onc before my chemo. Very worried.com my little boy keeps me distracted but worrying developments like this also fill me with dread. He loves + needs me+ I pray this evil bast*rd of a disease isn’t going to steal his mummy away any time soon.
I’ve had another scan appt for mid may after my 6th chemo. Feel a little ‘over-scanned’ tbh. But I’m going to push for a pet ct this time as they’re more sensitive + detailed + should show what’s going on in my chest wall.
Have a great weekend everyone- sun has made a reappearance here!
Tina xx
Hi Tina what you sd about taxol was interesting as I was on taxotre and it didn’t work for me but I’ve been offered taxol so am now worried I’m going to see prof on tues so I’ll ask again tc laura x
Also I know what you mean about little boy mines 11 he as been round me all week very cuddlie and kps asking if I’m ok we was out y day my hubbie was walking in front of me and he kpt saying wait for mum dad lol such a shame they have to go through this at such a young age I can’t think about it only make me cry
Hello ladies… hoping for some advice … my friend heather has just had 1st taxol/ avastin, 3 weeks on, one week off. She tried the cold cap as this worked well during her previous chemo for primary and she kept her hair. this time tho she said the cap made her feel sick and claustrophobic and she became so anxious and agitated that they had to sedate her to complete the chemo. from what i have read of your experiences there seems little chance she will keep her hair anyway on this chemo, so I told her this 'cos I don’t want her to stress out with the cold cap when its not going to help… was this good advice?? she wants my advice, we have been friends 30 years and her parents have died so I am taking ‘mum’ role a bit, but this is the first time in a long friendship when I have no personal experience to draw on, and I am struggling…xx
Hi bestfriend all I can tell you is I tried the cold cap for 3 months but it still made my hair fall out blow out when windy or fall out when washed I remember brushing it and it falling out in my brush so one day I was sitting in the chemo unit and after speaking to the nurses decided not to go for it again i spent 4 hrs up there every 3 wks because of the cap I never regretted stopping it just before My op
My oh shaved it it was the best thing I had ever done I know it’s hard but it does grow back in 14 months I have a whole head of hair that as been cut a few times just try to be there for her but I never regret not having the cap tc laura
Hi Bestfriend, I can’t really add much to Laura post. I hated the hair falling out bit, but once it was gone, it was ‘better’ nd it was the THOUGHT of it happening that really was worse. Get prepared with hats, wigs etc and just do it one day. Amongst tears and hugs, shave it off nd then it is ok!!!
Tina, delighted your little one has given you so much joy today. I can’t even type how awful it is looking at my beautiful children nd thinking how this disease is effecting them. It’s the worst pain you can imagine. I think you know what I mean.
It has been a hard week with worrying low tempetatures and so tired! I am trying to find the energy to go out for a meal tonight to share some of the day with OH nd kids. Then back in hospital tomorrow for more…
Sadie Xx
Thank you Laura and Sadie… I will pass this onto Heather, I think she will be relieved not to wear the cap. Hope you manage to enjoy your family time Sadie…Heather has only just had 1st lot of chemo, so no real se yet, but is in a lot of pain caused by mets in lymph nodes in her back, chest and pleura so lots of pain meds. lets hope chemo shrinks it all xx
Hi Bestfriend
My experience of cold cap was also not very effective, I had it for the first 2 cycles of my Chemo and my hair was still falling out so decided to shave my head and regain some control over my body.
I’m now being treated for a recurrence and haven’t bothered at all with the cold cap, I know its a massive upset losing your hair and now having done it twice it doesn’t get any easier however it’s a small price to pay if it zaps the b*ggers!!
Hello everyone else hope you’re all doing as well as possible-and enjoying the sunshine. I’m awaiting the results of a body scan and to say I’m nervous is an understatement, I’m also due to have my last cycle of chemo this week (dependent on results) but my lymph mets certainly don’t feel any smaller, more rads has been discussed and I think this will follow (again subject to results) really feel like this is a ‘last chance saloon’ however reading other positive stories on here does make me feel a little better.
Claire x
Oh Claire, the waiting is just horrible torture. How long till you find out?? Fingers, legs, toes and arms crossed for you - i look quite a sight!
Goodnight all - i hope we all sleep well and the hot flush fairy does not visit, shortly followed by the night sweat gremlin!
Sadie Xx
Hi Claire and all,
Really hope your scan shows some positive results. Thinking about you and wishing you well. Would cyberknife be an option for you-?- it’s a kind of super-accurate targetted rads thing. Lemongrove is the expert on here - she’s mounting a campaign to help people, esp. those with secondaries, get access to the machines through the NHS. It can be put over areas previously done as it is so precise. Maybe worth enquiring about if normal rads don’t pan out as you expected - although they can be very effective too - fingers crossed for you with everything!
Hi Bestfriend - I had cold cap too in 08 with my first session of chemo (FEC) - it is not at all comfortable and very cold - of course! Didn’t work at all for me as all my hair - every bit! - fell out anyway eventually - most about 3 weeks after chemo session. It also adds about an hour or so to the chemo, which was a pain. So sorry that Heather is in so much pain and hope it can be relieved.
Sadie - well done on starting the “3 word thread” - it’s good fun! It must be very worrying with your low temps and tiredness - Taxol weekly is no picnic. Maybe you could try some iron-rich foods for the tiredness - I used to eat beetroot/beet.juice, liquorice - both of which I hate - and liver pate, which I like, but which is very fattening! No idea if it worked, mind, but my bloods were always OK. Also had 10+ strength manuka honey and sometimes veg juices and berries regularly. Not sure if these things are good, but I’ve read about them/been told about them and they can’t harm. " Anti-Cancer" by David Servan-Schreiber is an excellent book re:foods and lots more stuff.
Tina - hugs to you - you’ve been on my mind a lot - hope you have a lovely trip for your little Dan’s birthday and you get some anwers about your chest.
All the best to everyone on here, Sarahxx
Hi ladies
another glorious day here Hope you are all ok.
Haven’t heard from sandra + margaret for a little while- hope you are ok ladies xx
I’m off to Manchester today to meet up with claire (poppet) looking forward to a nice day. Got chemo tmro + hoping to speak to my nice rads onc about my concerns. Feeling really anxious as it seems to be feeling worse by the day. So scary this disease- a living nightmare It feels like a really big area that’s affected + I’m worried that before long, I won’t be able to move my arm. Just praying thereis something they can offer bt I doubt they can blitz the area with rads again, which would be ideal…
Thinking of you all
tina xx
Good luck to you Gingerbud. I know this a trying time for you.I hope you have a lovely time in Manchester before the chemo.xxx
Thanks neelima Had a lovely day in Manchester with claire on tues. We had lunch + a bottle of champers in Harvey nics so a real treat! My chemo was actually cancelled yesterday as my bloods were too low. I was quite pleased as it means I can enjoy the sunny Easter weekend now instead of feeling lousy!
How are you doing anyway? How’s treatment going? Anything nice planned for the weekend? Hope you’re well xx
hope everyone else is ok + is able to enjoy the sunny bank hol
take care xx
Hi all!
I hope everyone on here is coping OK and having a nice Easter hols.
I’m OK - seeing the onc.next week - always an anxious time - not sure if he’ll order a scan, think I would like one to check all is OK, though. Not having any pains in previous mets areas, but still tender from rads last year and now got some lymphoedema on my chest as well, around the areas radiated. My arm is a little better, though, with massage and losing 1/2 a stone. I’m still enormous, though! In the spirit of self-control - bought only a small box of Thornton’s Continental chocs for Easter, but already nearly finished them. I expect I’ll attack my son’s Easter egg too as he only really likes to smash it up, rather than eating it! Your day in Manchester sounds lovely, Tina, and nice to see Claire. I’ve also been worried about Sandra and Margaret;hope they are OK. Better go and tackle the hoovering - cat’s fur everywhere! Love to all on here,
Sarahx