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kittycat40
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since
01-05-2012
44
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13-09-2016
12:53
Hi Mariposa how are you getting on? The Eribulin has stopped working for me now but I was on it for 10 months. I am having vinorelbine & carboplatin now xx
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08-06-2016
12:05
Hi sorry I haven't been on here for a while. Having a lot of building work done at home! Yes it seems like we have been on a similar path! I am still on Eribulin (since December) and it's working...fingers crossed it continues for a while. It makes me feel like I have no energy and feel out of sorts but I have recently had my dose decreased by 30% so it's a bit better. I don't know anything about immunotherapy so would be interested to hear if you find anything out. I have been referred for genetic testing, not sure if that is the same test you have had? Take care xx
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08-06-2016
11:21
Hi sorry to hear you're in this position and so young. I was 38 when first diagnosed. I am 46 now. There are lots of treatments for Oestrogen and HER2. Also alternative procedures to chemo e.g SIRT, RFA etc.wishing you all the very best xx
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01-02-2016
08:41
Hi I have just had my claim accepted but I have bone, pleura and liver mets. Secondaries in the bones can be treatable for many years so it isn't classed as terminal (less than 12 months). I have had bone mets for 3 years which are still stable (fingers crossed!). My Onc can't predict my situation but I have progression and there is limited treatment left, particularly as I am triple negative. Hope this helps a bit. Take care xx
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20-01-2016
02:46
3 Hugs
Hi I have triple negative sbc in bones, pleura (fluid around lung) and liver. I am currently on Eribulin chemo and Denosumab injections. Primary dx 2007, mets from 2012 onwards. If I can be of any support please send me a message. Love & best wishes xx
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19-01-2016
04:50
Hi Tina so sorry that you are so worried and scared. There will be a treatment plan for you. There are quite a lot of drugs out there. My mets are inoperable and I have had them for 3.5 years so far. When you first find out it takes over but it becomes less so in time and when you start treatment. Look into all your options not just what the onc says as well. I get the impression they seem to stick to the chemo route but there are other procedures. I will be researching some of them in the coming weeks and will post on here if I find anything. Be easy on yourself. We are all in this together. Love and best wishes xx
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16-01-2016
11:53
Hi Sarah any cancer spread (mets) is incurable but most are treatable. Please say yes to anything going is my advice. There are quite a few treatments out there and not just chemo. Ask your onc about surgery and radio as well. Everyone's prognosis (time left) is different depending on how you respond to treatment. There are lots of positive stories on the forum and some people live for many years. It is very hard to get your head around. I find some days are easier to cope than others. All the very best to you big hugs xx
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16-01-2016
11:17
Hello lovely ladies I am so sorry to see you having to join us on here. It's a very scary and worrying thing to go through. I have secondaries in bones, pleura (fluid around lung) and liver. I have new liver mets so am on Eribulin chemo at the moment. I don't come on here as often as I probably should but please message me if you need support or would like to ask me anything. I am no expert but was originally diagnosed in 2007 so have picked up quite a lot of information! I have had various treatments as was originally hormone positive but with massive thanks to Nicky on here that I had my receptor status checked and found I am now triple negative. No wonder none of the treatments were working!! I have also had SIRT (radiation beads in liver). They appear to have possibly kept the original tumours in the liver stable apart from 1 which had grown a little but of course they don't work on any new ones. I am always reading and looking into any other options. The Oncs don't always tell you what there is out there. They just seem to follow the usual procedure. I find it helps me being a bit in control of my own illness. Going to be looking into more things soon so if I find anything I will post on here. I am am using a mindfulness app Headspace which seems to help. My motto is to try to not to let the fear and sadness etc overshadow today while I am here and living. Not always easy to do but I try to! Love and best wishes to you all xxxx
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05-12-2015
01:29
Hi Everyone just wanted to give an update and see how everyone is getting on. I have not been on the forum for a while. I had SIRT in August. Just had my first scan and it shows more new tumours in my liver so I am disappointed and worried again. I am starting Eribulin next week. Hope you are all as well as you can be best wishes xx
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11-10-2015
11:35
Hi Julia sorry I haven't been on the forum for a little while. I saw a bowel cancer consultant regarding the SIRT as it is usually used to treat bowel cancer patients. They have fairly recently given it to BC patients and found it can work. They give 3 cycles of Folfox (5FU, oxaliplatin etc) chemo with the SIRT. Christies and Nottingham do the SIRT but I am not sure where else do it. Hope you are ok. Best wishes xx
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09-09-2015
11:36
Hi Ellie the diagnosis must have been a big shock for you. All the very best with your scan results.....I got everything crossed! I see my Onc next week to see what is next to try. I have a portacath too. Only had it a few weeks. It's just starting to settle down now. Mine is where my bra strap is....doh! Never thought of that at the time and bet the male Dr didn't either lol!! Take care xx
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02-09-2015
01:47
Hi BJH sorry to hear about your situation. I was diagnosed in 2012 with sternum and spine Mets. They thought it was just in the sternum to start with which is classed as local recurrence. When they saw the spine met it is classed as distant spread. So I think you are in quite a good position prognosis wise. There are lots of treatments especially as I assume you are ER pos. my bone mets have remained stable. do hope you av family and friends to support you. This forum is very good too for chatting to people who have been through it. Take care xx
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02-09-2015
01:38
Hi mrs G I had SIRT last week. I had to go for a trial work up 2 wks before. They go into your main artery in your groin and map where the blood flows to. They insert coils to stop the beads going to other organs. It was straight forward apart from having to lie still for hours! The actual beads procedure was quicker and nothing to it really. I had a reaction to the dye I think as I had severe indigestion pain but I am fine now. I feel tired and little out of sorts but I am having chemo as well. All the best to you xx
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02-09-2015
01:33
Hi mawfred sorry to hear you are in pain and naturally worrying. I think you need another bone scan. Keep pushing for answers it might be something unrelated. All the best xx
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02-09-2015
01:28
Hi ladywolf thank u for ur reply. Yes I sometimes wonder about our limited options but I know they are doing more research into it now. Are you due for a check up or scan to double check the bone and skin mets?
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22-08-2015
08:59
Hi Suze thank you very much for your reply. I was first diagnosed in 2007, ER pos. Had FEC & rads then tamoxifen. Bone mets 2012, liver mets 2014. I had cape earlier this but it didn't work but I found out after though that I wasn't on the maximum dose for me so don't know if I can try it again in the future. I have just had the triple negative results. I am having SIRT on Tuesday for the liver mets but will need to av some more treatment after. It's good to hear you are doing so well. We keep going on hols too....its good to av them to look forward to and keeps you going! Love and best wishes xx
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20-08-2015
03:19
hi everyone is there anyone who is triple negative and has mets to bones and liver? I also have a pleural effusion.
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20-08-2015
03:01
Hi marie I am so sorry to hear you are going through all of this and with a young baby as well. As you probably know, there is a lot of different treatments out there. I am hoping to have SIRT next week. Try to take a day at a time and don't look too far forward. The ladies on here are very supportive too. Sending you big hugs xx
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