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Anneemay
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since
29-01-2016
120
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29-10-2016
04:44
On Tuesday and Wednesday this week I spent the days with my 4 sisters just chilling together and catching up face to face, playing games, watching DVD's, eating and chatting. It was really lovely as although 3 of them live only 20-30 minutes away we are not always able to meet together at the same time. My eldest sister came down from Derby for a few days but unfortunately my sister in Germany could only join us via technology. I am the second eldest and the first to be originally diagnosed with BC. my 4 younger sisters have also been on the BC "journey" one of them completed her treatment this year, so although it was not the main topic of conversation, it obviously was spoken about. I feel so "lucky " if that is the right expression to have wonderful sisters to support and care for me, who totally understand what I am going through, since my secondary dx. I am just hoping that they will not have to experience the same "journey" as me in the future. Ann xx
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28-10-2016
11:21
1 Hug
Hi Karen the treatment you have described sounds like the one I have just started on which is Capecitabine, you have to take it twice daily, morning and evening preferably 12 hours apart and the dose is calculated on your weight and height. So far I have seemed to have tolerated the treatment without any major problems and reading through the Cape thread it seems to be a generally well tolerated and manageable chemo. I have mets. in pleura,lung and bones, which I also was gutted to find out a year ago after being clear for 13 years. I have worked my way through the tears, the anger and of course the fear that I can't be cured. There is no such thing as a magic wand to make it disappear, so I am putting my faith in my oncologist to find a treatment that works, so that I can get on with living my life again. I am sure that your oncologist will put you on the most effective treatment to treat the mets. and if that doesn't work there will be other options, so please try not to worry. Sending a big hug. Ann xx
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28-10-2016
10:33
Just completed 1st cycle so also classed as a newbie I suppose, saw my oncologist on Thursday to discuss any problems with the treatment. Apart from feeling perhaps a little more tired and sore throat which reading through this thread is caused by the Cape, so far I have not had any major problems. My oncologist reassured me that this means I am tolerating the chemo. well and that I will not necessarily get any further worst se. I am hoping she is right although I did prepare by stocking up with Udderly cream and wet wipes!!! 😳 I will remember to make sure I take my next cycle with food, to see if this prevents the sore throat, thank you everyone for all your first hand advice. Ann xx
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22-10-2016
05:35
Spent most of the day in garden, potting up plants that need transplanting when raised beds are in. Have put some snowdrops in underneath the Camelia we moved earlier in the week and hubby has built first of three raised beds. So things are progressing as planned but having to take little breaks between tasks though as feeling a little bit more tired on 2nd week of Cape. Ann xx
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21-10-2016
09:06
I have also finished the book which I enjoyed and now continuing to read the book I was reading previously. Ann
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17-10-2016
01:22
I am on day 4 of my first cycle and took a anti-emetic for the first 3 days as advised, so today I'm trying without it, 1 less pill to take!!! So far so good and apart from feeling a little more tired I don't feel any different. The tiredness could be because I have had a busy weekend visiting family 😊 My son drove ,but travelling in a car for 2-3 hours I find is just as tiring as driving your self. Hoping to go to Pilates this evening so may need a little nap soon 💤 Ann xx
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16-10-2016
02:30
Will be thinking of you Thursday Karent and hope that you have the news you want from your scan results. Your post reminded me of my daughters wedding 16 years ago in St Lucia it was such a lovely time and I have very fond memories of the occasion. My daughter and son in law have given me 2 wonderful grand daughters and I am visiting them all, with my son and grandson, at the moment. I feel so lucky to have my family around me at this time when I am feeling a little more vulnerable. That also includes my husband who helped me through my initial primary diagnosis in 2002 and now is incredibly caring and supportive since my secondary dx last year. I have " trained" him well as he knows how to cook, work the hoover etc. and at the moment helps me care for my PleurX catheters. It is times like this that makes you appreciate what you have and I don't mean materialisticly, time with your family is so precious. Ann xx
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14-10-2016
06:40
Thanks George that is really helpful and seems more manageable. Good to hear that your tumour markers are falling and that Cape is working for you. My oncologist does not seem to measure them, not sure why. Hope that you have a good weekend as well. Ann
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14-10-2016
11:02
Can I just clarify that when the Cape instructions say "take with a meal" they mean a proper meal and not just a snack like a piece of toast etc. as we normally eat our main evening meal between 6-7pm so if I need to space the doses 12hourly I need to be eating breakfast between 6-7 am. which to be truthful I don't fancy eating that early. I am not generally a person to go back to bed once I am up and at the moment my sleep pattern is not very good. Any suggestions gratefully received. Ann xx
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13-10-2016
07:19
Yes they gave me Loperemide so I am well prepared, hopefully I will not need it. I hope your fingers heal quickly and your more comfortable soon. Hugs Ann
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13-10-2016
02:47
Thanks Carolyn I have hopefully joined both the gardening and the book club, so what with them and doing a bit of art work, I should be totally preoccupied over the winter period. !!!
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13-10-2016
02:16
Hi can I join in please, we have not got a very big garden but both my husband and I find it very thereputic to potter as some people say. In fact we are in the process of revamping the back garden as it has got a bit tired looking. I have been busy the last few weeks potting up the perrenials I want to keep, as we have decided to put in some low raised beds, so that we can improve the soil within them. I am hoping that it will make the bed more manageable and the plants will love their new home. Ann
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13-10-2016
01:59
Can I join in please, I am an avid reader, have a kindle and have downloaded the No 1 Ladies Detective Agency. I enjoy reading most genres apart from science fiction and horror.
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13-10-2016
01:53
Just joined this group which by looking at the forum gives extra support to members such as myself with a secondary dx. which came as a bit of a shock last September after being clear for 13 years. I have pleural, lung and bone mets currently being treated with Denosumab and Exemestane, however due to the pleural mets causing effusions I had PleurX catherters inserted in March following a unsuccessful talc pleurodysis on the right side. I say currently being treated at this moment in time because as from tonight I will be starting Cape chemo to try to dry up the effusions as they are continually draining a significant amount. I am hoping this will work, but I know there are no guarantees with any treatment. Ann
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13-10-2016
01:14
Well here goes, I take my first dose of Cape this evening 1800mgs to try to dry up pleural effusions which are being managed with PleurX catheters, I had inserted in March this year. I have ordered the Udderley cream from Amazon recommended by members on the forum, which I have found so informative. I have always had a very sensitive digestive problem bordering on IBS so I am not looking forward to the possible se that may occur with Cape. I have also heeded some of the advice posted on the forum in relation to the big D and have prepared by stocking up on wet tissues !!!! Just hoping now that Cape will be effective by reducing the amount of fluid currently draining between 300-600 mls each side every 5-6 days, so that I can have the catheters removed. Ann
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04-10-2016
09:42
I am really pleased that you have been able to get insured for your trip to Greece and hope you have a lovely time. Does the policy include medical expenses or cancellation that may be related to cancer or is this excluded? As after I went through all the relevant questions with the person at Insurancewith regarding my condition,I was told they could not insure me. I am assuming that they are questions all people are asked with secondary breast cancer, so I can't understand why I am not able to get insurance. Ann
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04-10-2016
09:17
Hi Sarah I had a Pleurodesis on the right side in February but was not successful hence the insertion of the PleurX catheters in March. We have just returned from a holiday in Spain which although caused me some anxiety prior to going, worrying if I would have problems with the catheters, we did have a nice time with no problems. I am seeing both of my consultants on Thursday to review management of the pleural effusions as I posted earlier and hoping that the Cape will work if that is the plan. Ann
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14-09-2016
08:37
Hi Sarah did the GemCarbo chemo not work in drying the effusion up? I have pleura,lung and bone mets. also on Exemestane and Denosumab at the moment but as I said in my post probably going on Cape next month. Hopefully it will work and from what I can gather from the forum posts Cape seems to be well tolerated. Ann
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