Breast Cancer Now Forum

Hi Angelfalls and all you Pixies. I finally had my scan on Tuesday after a `Jobsworth` in Admin told me on Monday that it would be another 4 weeks even though it was urgent. Some of these people in Admin think they are so special. Anyway phoned again and spoke to someone else who fitted me in the next day. The Onc said because I had not been well and my liver bloods were worrying he thought there may be progress, still he should now have the scan results when I see him on the 28th which will give a better picture. I started Xeloda yesterday 1800mg twice daily so I`m hoping for good results, It seems to work well for a lot of secondaries. We plan on a quiet Xmas, going to our Daughters for Dinner but will be home for tea. On Boxing day lunch going to Grand-daughters for a buffet at lunchtime but will only stay a couple of hours. We will be `slobbing` around the rest of the time, eating and drinking when we want and generally doing nothing. To all you lovely ladies, have a lovely Xmas and a Happy, Healthy New Year. Thanks for all the support given to me during the past year. Hugs, Pam.xx ... View more

Hi there, I`m a newbie and due to start Xeloda next week. Just been reading through the posts and its very encouraging. I`m dreading the SE`s, but hopefully I won`t have many. I did Paclitaxol for 6 months which finished in September, the SE`s for the first few weeks were awful but then settled down and I found it a very do-able chemo and I was stable at the end of it. I`ve been on Tamoxifen since then but been very unwell the past few weeks, the Onc has now told me he feels there is progression and the Tamoxifen has done no good. I had my Onc appointment brought forward to today, so I am now waiting for an urgent CT scan and he will see me again on the 28th. I have so many appointments in December so I`m glad all my Xmas shopping is done. Any tips or hints most welcome, but I think most of them are now on this thread. Pam.x ... View more

Hi there Pixies, how are you all doing! I know most of you are not on Pixie Dust now, but its good to find out what you are doing and what treatment you are on I have been unwell for a few weeks so had my Onc appointment brought forward to today. I should have had a scan before seeing him but `it got lost in the system` so now they are trying to get an urgent scan done before I see him again on the 28th. After being on Tamoxifen since I finished Pixie Dust at the end of Sept the Onc has decided It has done nothing and I have progression. I am hopefully starting Xeloda next week. Any of you Pixies going down this route and doing well, I would love to hear from you. What are your SE`s etc. Well hope you are all doing OK. Hugs, Pam.xx ... View more

Christine, thanks for the update on your little trip away. So sorry the treatment hasn`t worked, fingers crossed there is something out there to help you. I see the Onc on Friday and must admit I am dreading it, I know my tumour markers have gone up dramatically and my breathing is not too good. Even though I am on high dosage patches the pain at my wound side (also the shingles side) is driving me mad. My Mum seems to have settled in the Care Home which is a big weight off my mind, its a lovely home with a good reputation. Mum is full of praise for the staff, food etc. We know know that we have done the right thing even though we had some reservations at first, its only 5 mins drive from from our house so we can go and see her every day even if its only for 15 mins sometimes, we had a 45 minute drive to see her when she was at home so we only went every 3 or 4 days. Now its down to sorting her bungalow out. Hugs to you all, Pam. xx ... View more

Christine, so happy for you and glad you have got funding for the new treatment. Sorry about the pain, I just hope the Ketamine works for you. You have got a great attitude about going in for the treatment, make the most of your stay. I also was awarded DLA at the highest rate and mobility etc, its a great help and after all we have worked and paid in for it. I have had a good day today after a few down days. OH and myself went over to Mum`s bungalow today to sort some things out as it looks like she will be in Residential Care permanently. Just got all her old photo`s together and bought some albums so I have spent a couple of hours going through them and putting them in order in the albums, mind you it will take weeks and a lot more albums. Still it will be nice for her to look through instead of looking in an old shoe box! Once again Christine sooooooo happy for you, let us know how the pain treatment goes. Hugs to you all. Pam. xx ... View more

Hi Angelfalls, glad the new treatment is being kind to you. I had my last Pixie-Dust on 24th September and have been exhausted ever since, takes me all my time to get up in the morning and I always have a sleep in the afternoon. Like you I would appreciate andy tips. Having shingles hasn`t done me any good either but the pain seems a lot easier with the patches. Plus we have had to put my 96 year old Mum in a nursing home, she had a fall in her bungalow 2 weeks ago and we had to get the police to break in, we had keys but she had chains and bolts on. She ended up in hospital for a week before moving her to the nursing home. We have all now realized she needs 24/7 care and being an only child a lot of her caring was up to me. She seems to have settled so we are keeping our fingers crossed. Just wish I hadn`t got this b****y disease and could do more. I have had a couple of really good days feeling `normal` but today I am not at my best. Still there`s always tomorrow. Hugs to you all, Pam. xx ... View more

Sharon, keep your chin up. We all get these setbacks but I`m sure there will be another treatment out there to help. It is good news about the lung so hang on to the positives. I am still suffering with shingles I never knew it would be this painful, I am now on buprenorphine 35 patches as well as co-codamol. I am keeping my fingers crossed that it is on the turn as the pain is not as intense today. Hugs to you all, Pam ... View more

Christine, give yourself a pat on the back! Let us know what the pill is, I`m on tamoxifen now but don`t know how long for. The Onc did say he was hoping it would keep me stable but won`t know until I have another scan and I don`t know when that will be. He also said my tumour markers would probably go up which is a bit daunting. Always interested to find out what new treatments are out there. I had to see GP yesterday as the shingles pain and pain from wound site was driving me mad, anyway I am now on patches for the pain and fingers crossed it is a little better today. Good luck with the scan and hope they manage to get a vein without too much trouble. Even though I have finished Pixie Dust I still have Zometa infusions every 4 weeks and it is still `hunt the vein`. Well a cold weekend is forecast (I hate winter) so wrap up warm all you Pixies. Hugs, Pam. xx ... View more

Angelfalls, sorry to hear about your bronchitis as if we don`t have enough to put up with. I still feel rubbish and haven`t been out, the rash has now faded but I still have the pain and off my food which isn`t helping as I feel worn out. I was so looking forward to having a few weeks off from hospital appointments and doing my own thing and trying to be `normal` when this lurggy hit me. Christine, good luck with your last chemo, as Angelfalls said try and get a meal out to celebrate. Where have you got the nerve pain? I have a lot of pain at the mastectomy site but I was told it was scar tissue after having 4 operations at the same site, I still have to have dressings as it is still slightly open after it burst open 2 years ago. Well hoping we all feel better in a few days, what we all need is a dose of warm sunshine. Hugs to all you Pixies, Pam. xx ... View more

Hi Pixies, thanks for your wishes. I have felt cr@p today and virtually no sleep last night, so today I have had a duvet day. I haven`t even got dressed. As well as the pain from the shingles I have had trapped wind causing pain, anyway the OH went and get me some wind-eeze but it hasn`t had much effect. Must try and get back on the Red Wine treatment ASAP! Hugs, Pam.xx ... View more

Hi Pixies, Laura yes I will try the Red Wine and join you in a glass in the evening. Shame about missing the lunch you`ll just have to have an extra glass of wine to make up for it. Good to hear you are having a spending spree, nothing lifts your spirits more. I am just debating whether to have a new kitchen. Have seen a few posts on the American site about RFA and it seems to be successful. My Onc has never said if I only have one tumour in my liver, I must ask him at my next appointment and if so ask him about RFA. From what you say the children have settled back to life in the UK and are doing well. Christine, yes the shingles are very painful, just hoping I will get some sleep tonight as last night was a write off. The GP has given me a high dose anti-viral 800mg, 5 times a day so hoping it kicks in soon. Well I`ll start my trial now Laura, Hugs, Pam.xxx ... View more

Well after finishing Pixie-Dust 2 weeks ago and thinking I would start to feel better, I now have shingles. I didn`t feel too good at the weekend with some backache and a stitch in my side, did the normal pain killers and hot water bottle and last night was impossible to sleep. I woke up this morning with a painful rash around my middle. GP said sometimes this can happen after chemo, anyway he`s given me some cream and strong antiviral tablets plus pain killers. This b***dy disease, treatments and SE`s are driving me mad! Hugs, Pam.xx ... View more

Hi Horsie (Laura), Good to hear from you, I was worried something was wrong, so glad it was the internet and not you. How is your treatment going and how do you feel? Are you finding the NHS ok after having your other treatment abroad? I am so tired now, can`t believe its worse now than when I was having chemo. I went for my Zometa this morning then did some shopping, had lunch then slept for 4 hours. No doub`t some of the other Pixies will be along soon to send a message, we are so glad to see you back. Hugs, Pam. xx ... View more

Thanks Angelfalls, went out for a meal last night with OH and tomorrow we are going to my daughters for lunch, just trying to think of meals for today `maybe a take-away`to save me cooking Ha! Yes I`m hoping the Tamoxifen does some good. Hugs, Pam. xx ... View more

Christine, so glad you are nearly finished with chemo and just hope you get good results. Fortunately I have had very little problems with nerve pain, its been mostly on the fingers of my left hand so hoping now the chemo is finished it will get easier. Fingers crossed that Progablin works for you. So you live in Blackpool, we used to have a static caravan on a small site near Great Eccelston a number of years ago and regularly went into Blackpool to see a show or go shopping. Have a good weekend and hope it is pain free. Hugs, Pam.xxx ... View more

Pinkylou, yes `Boots` tomorrow after flu jab (the needles never stop). Just hope I have as much success as you with the hair. Pam.xx ... View more

Well, back from the Onc, he was really pleased with me and declared me `STABLE` Yeah! The good vibes from all you Pixies must have worked. I am now on Tamoxifen and see him again in 8 weeks. Millykins, glad you are coping with the treatment OK. I also have infusion of Zometa every 4 weeks for my bones. My hair got very thin but I managed to go 5 months before wearing my wig, I just treated what I had very carefully. I still have hair but in very bad condition and thin so just waiting for some growth so that I can have it styled and coloured. Hugs to all you Pixies, Pam.x ... View more

Thanks Pinkylou and Angelfalls, it means a lot as you well know. What would we all do without the support of one another. Pam.xx ... View more

Well tomorrow is D Day for my scan results so a sleepless night for me, just praying that there is no progression. I haven`t been feeling too good the last couple of weeks, odd aches and pains etc. Plus my Mum who is 96 has started with Dementia, she has overcome BC twice and been brilliant for her age until recently. I am an only child so its been hard the last few weeks, I don`t know if the stress has made me feel bad and bring the aches and pains on. Just praying that when I see Onc tomorrow that the Pixie Dust has done its job and there is no progression. Hugs to all you Pixies. Pam.xx ... View more

Signed and passed on. ... View more