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roxy12
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25-08-2013
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10-12-2013
08:47
Hi everyone. I have just found this thread and as I am about to start Docetaxel in January the posts have helped prepare me. I THINK!! Have been on evorilmus and exemestane for about 17 months and have had sore mouth etc so I am hoping I will cope with this chemo. Thanks for all the info. I am going to make the most of the next few weeks and spoil myself at Christmas. Hope you all have a good Christmas despite going through treatment. Wishing you all the very best. Love Sheila xx
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10-12-2013
08:31
Well I thought that E/E had stopped working and it has. My lungs and bone mets remain stable but there are some spots on my liver and the onc wants to try to knock them back with Taxotere. He said that if this reduces the mets in lung and liver I would be able to go back on hormone treatment afterwards. Has anyone any experience of Taxotere? I would really appreciate it if you would give me any advice you might have. I'm not expecting a joy ride but if it works I will put up with a few months of feeling rubbish. Not starting until 8th of Jan so will enjoy Christmas. Hope everyone else has a lovely Christmas too. xx
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09-12-2013
09:20
Hi Jan, I have tried various mouthwashes but still have trouble sometimes. I think the best one has been Mu-Gard which they gave me at the hospital. Do persevere though as things will get better. I was worse last winter and have got some ulcers at the moment so am wondering if it is because your immune system is lower at this time of year. Try to make sure that you eat healthy foods even if these have to be soups due to sore mouth. Good luck. Sheila xx
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06-12-2013
06:16
Hi Porkie, You are not a wimp! E/E is hard and I think I have had most of the SE. I have sore toes (fungal infections) my finger nails are awful. My mouth improved for a time but is sore at the moment. I have small nose bleeds and have some neuropathy in 2 of my toes! Get some nausea and fatigue at times.Having said all that, I am living a fairly normal life so I am thankful for this drug as it has kept me stable for about 16 months.( Last scan wasn't quite as good as previous ones) The onc said that he may try Xeloda if this scan shows more progression and having seen some good results on this forum I am willing to give it a try. I am sure you will get used to the SE. They do get easier to tolerate after a while and I hope the combo gives you a long time of stability. xx
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05-12-2013
05:12
Hi Porkie, I started E/E combo July 2012. I had my flu jab last year but had flu like symptoms over Christmas last year and mouth ulcers and felt really awful. I wondered if it was because I had had the jab. I haven't had it this year because of that but I don't know for sure if that was the cause.I have been stabel on the combo for over twelve months but I have a feeling I will be changing treatments soon. We shall see. I had a scan yesterday and will find out the results next week. Try not to worry. It is a worrying time when the scans are due. Hope everything is fine. xx
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02-12-2013
09:07
Hi Lucramsy, When I had my chemo for my primary the nausea was quite bad but I eventually found the right treatment to help this. I was also very tired but I would go to bed in the afternoon for a couple of hours sometimes to sleep but sometimes I would take a book or a magazine. Pamper yourself and don't push yourself to carry on as normal. If you have a good day treat yourself. You wil get through this and I'm sure it will be worth it but do tell your medical team how you are feeling and they will help you I know. xx
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01-12-2013
04:39
Hi Jaqui I have lung and bone mets but at present I am not having trouble sleeping (well not because of the lungs. I take Nytol at the moment because I am a poor sleeper anyway) Just thought I would say that hopefully in a few weeks the Xeloda will kick in and you will find that you can breath better. Take care. Sheila. xx
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01-12-2013
02:19
What a lovely and moving tribute to Marilyn.She was obviously a very intelligent and good person. Marilyn was a great comfort to me when I was first diagnosed with secondary breast cancer 2 years ago and I am truly sorry that she has lost her fight with this awful disease. Her legacy lives on though to inspire others with MBC and she will not be forgotten. R.I.P. Marilyn. xx
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30-11-2013
09:11
Hi Lynnq, When they found my skin met they just removed it but they said that I couldn't have radiotherapy as I had already had it in that area. However I later had a couple more "spots" in that area so I had to have my reconstruction removed. That was about six months after the first skin met was found. Ihave to say that one of the nurses saw my second skin met and didn't think it was anything but the surgeon knew striaght away that they were. Also when they found my first skin met, that is when they checked everywhere and found my lung mets so I am "glad" it was spotted as maybe the secondaries would have got a lot worse before they were treated. Sheila x
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30-11-2013
05:03
Hi Elsa, I had a skin met on my scar line 3 years after my mastectomy. It was a white lump. I had had it for a few months and thought nothing of it. It was on my reconstructed breast. When I went for my check up with the breast surgeon she was concerned and took a biopsy. It was BC. I also have what looks like excema but this is due to my radiotherapy. If you are worried I would get it checked and you will probably be reassured that it is nothing. Sheila xx
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28-11-2013
10:41
Kenni and Anniejac, I am a really poor sleeper not just because of the BC but just in general and all summer I have been waking around 3am and the only way I could go back to sleep was to go on the sofa. This helped but I don't know why. However I couldn't keep doing that so I asked the GP for something to help me sleep. He gave me 2 weeks of Zopiclone (3.5mg) but said he wanted them to last me 2 months! He didn't want me getting too used to them. I now take half of a Nytol and it really helps. You need your sleep to help your immune system and to give you strengh to fight the cancer. I definately feel much better for a good nights sleep and if I do wake at 3 or 4 am I manage to drift off again. XX PS I always manage to go to sleep when I go to bed. ( maybe this is the glass of red wine!)
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27-11-2013
10:19
Hi Kennie, I'm glad you have come on this site. I don't know where I would be if I didn't have the support of this forum. I was dx 2 years ago with lung mets, have since found that there have also been bone mets on my spine since Jan 2012 although these have remained unchanged and I do not have any symptoms. I have not had any chemo as yet. I have been stable on Evorilmus and Exemestane since July 2012. I can't advise you on the chemo but I would certainly ask your onc the next time you see him if he thinks this is the right approach since you have already had this chemo. There are plenty of treatments out there so don't think this is the end of the road! When I found out I had secondaries I took clothes to the charity shop and bought new bedding as I thought I would soon be in bed all day! Two years on I still go swimming and walking etc. AND shopping for new clothes! Also sending you hugs!!!! Sheila xx
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25-11-2013
08:32
Hi 2Catlady, Sorry you are going through a worrying time. I was put on Tamoxifen 2 years ago and it didn't work for me. I have been on Evorilmus and Exemestane since then and have had stable results although I may be due for a change after the next scan. ( in two weeks ) It has lasted about 17months and I am thinking that the Evorilmus may be the other drug he intends to use but am not sure. Exemestane is another AL like the Letrazole and it has worked for me after the Tamoxifen so try not to worry. Easier said than done though. I know! Like you I am ER pos PR pos and HER neg. Take care. x
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23-11-2013
04:34
Marilyn was a great support to me when I was diagnosed with secondaries 2 years ago. I will remember her. R.I.P. Marilyn. Sheila xx
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19-11-2013
08:59
Hi Mags, Sorry to hear that you too are coming off this combo. I think I may be on the same as you after Christmas. I will let you know. If when I see the onc in Dec he says this, I am going to see if I can wait until after Christmas before I start. I wasn't well last year so am hoping for a better one this year! Look after yourself and good luck with the next treatment. Sheila xx
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18-11-2013
01:38
Hi Valia, Sorry that the treatment has not worked for very long for you but hopefully the next one will do the trick properly! I have managed to be on the combo for about 18 months but it is looking like I will be changing after the next scan too. Take care. Sheila xx
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15-11-2013
04:50
Hi Angelfalls, I'm glad that your lung problems have been resolved and I hope that you get back on track soon. Regarding the dosage, I have stayed on 10mg but I did get the flu like symptoms on and off for a while when I started the Evorilmus. I felt particulary unwell last Christmas so am hoping for a better one this year! The nails! Well I know what you mean. My nails are terrible. I did have acrilics done to start with but I did catch them and it was really painful. I tore off my own nail a few times along with the acrillic nail and my finger would bleed. I have gels now and these are better. Not perfect but they do seem to protect the nail but I am wondering whether to give up to be honest and put up with my soft peeling ones. Good luck with all the SE. They do get a bit easier although I have a sore mouth again at the moment. It isn't as bad as it has been though. Jan, I hope you are okay with the E/E combo. Not everyone gets a sore mouth and the SE do get a bit easier to tolerate as time goes on. Take care everyone. Yes it has gone quiet on here Angelfalls. I too hope all is well with everyone.
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12-11-2013
08:58
Hi Elliedog, I don't have the same kind of BC as you and am on different treatment but just wanted to congratulate you on the great news! Sheila x
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02-11-2013
03:17
Thanks Angelfalls. My mouth is quite sore today but have got a mouthwash so hopefull it will clear up in a few days. Still feeling a bit nauseous especially in the morning. ( If I didn't know different I would think it was morning sickness but I am WAAAY past that!) Hope everything goes ok for you next week. Brighton Belle, I have bad nails like you. We have spoken before about this and they don't seem to be getting any better. I have had acrillics but kept catching them and causing a lot of pain so have had gels a few times. They do look better but I am going to stop having them done and just put up with no nails. Like you I have noticed that if you put a pale nail polish on they do look slightly better. I also had clippings of my fingernails sent off which came back clear but I saw the podiatrist because I had a sore toe and she said that clippings can often come back clear because the infection tends to be in the nail bed. My toe nails are fungle but she said if I put gel polish on it can help kill the infection.Haven't got round to this yet Treatment for fungle infections is not very nice though so I am not going down that road. Good wishes to everyone. Sheila xx
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31-10-2013
05:41
Hi everyone. Hope you all okay.How did you go on Angelfalls when you saw the onc? Hope things went well? I have a question to anyone on any kind of treatment really. Until very recently, I have felt pretty well on the E/E combo. I hadn't had a mouth sore for about 2 or 3 months. Other symptoms had also stopped. However, the last few days I have developed a sore mouth, am feeling nauseous, and have upset tummy! Is it normal for S/E to wain and then return? I thought I was doing well!!! Sheila x
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