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Carabel
Member
since
01-05-2012
194
Posts
5
Hugs
29-04-2017
01:18
Yes do keep us updated Moijan x
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29-04-2017
03:48
1 Hug
Truffle shuffle I hope you got your last paclitaxol. When will you have your scan?
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29-04-2017
03:46
Good news yesterday. Liver ALTs have come down a bit so back on cape at a reduced dose. Only 2nd day and bones feel very sore - is this a normal side effect of cape? Also very fatigued. Didn't have any of this on first cycle. Oh dear I'm never happy - desperatel to get back on chemo and all I can do is moan lol. Hope everyone has a lovely holiday weekend. Xx
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25-04-2017
05:23
Hi Hans58 and Tracey1964. I was diagnosed with TN recurrence in September 2016. Primary diagnosis was in 2012. I have recurrence in chest, possibly lungs, bones, liver and now brain. I had 16 paclitaxol which shrunk the chest/lung mets but did have spread to liver and brain during this time. Now on capecitibine. Was about to go on a trial for tnbc but brain meys meant I wasn't eligible. I'm doing well and still working. Have not asked for timescales yet. Just taking things one day st s time. Good luck with your treatments. Xx
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25-04-2017
07:50
Hello everyone. Thank for your encouraging words and information. I spoke to oncologist last week about why I had to have cape before thinking about any brain radiation ands it's apparently because they need to get liver under control. Radiation could make me too sick for chemo and they don't want anything to get in the way of the chemo. Subsequently however my blood results came back and I couldn't get my second cycke of cape because my liver ALTs have doubled. They think it could be that the liver was struggling to cope with toxicity of cape (I had full dose) and that I can try again on a reduced dose this week. So fingers crossed that the numbers have come done. I did have liver pain last week which is not so bad now so I am hopeful! On the plus side I got away for a lovely overnight stay on the island of Arran with a good friend. Good luck to everyone with their treated and I hope we all get a bit of sunshine soon. It's been freezing here last few days. Xx
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19-04-2017
07:29
1 Hug
Hello all. Thank you so much for your replies. It is reassuring to know I am not alone. I have developed another symptom coming from the brain mets I think. My left leg and arm arm are weak and shaky with presssure one when walking the pressure on my foot makes the leg shake and when I hold anything in my left hand my arm starts shaking. Using keyboard at work is also becoming difficult. Anyway I've a load of questions for onc when I see him tomorrow. Marnster glad you've been doing ok on your new treatment. Here's hoping it does its job. Lissa I hope your symptoms continue to improve Truffle shuffle I think it's awful what the reike practitioner said to you! Completely out of order and you should definitely complain. Xx
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18-04-2017
07:12
1 Hug
Hi truffle shuffle and thanks for replying. I don't feel so alone although sorry that you are also in this position. I have been put onto capecitibine for both the brain and liver mets and have been told they are not (at this time) considering wbr or gamma/ cyberknife. I am still working as I was determined to carry on as normal but worried that this could be the wrong thing to be doing if life expectancy is now very short (I haven't asked). I am mainly well but have some nausea and a shaky leg and arm as well as the usual fatigue! I am wishing you lots of luck with the paclitaxol - it seems to work well for lots of women. Please keep in touch and let me know how you are getting on. Xx
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17-04-2017
10:41
1 Hug
Hello. I had posted a new thread and was advised I should repost here so that I could hopefully connect with some others with a similar diagnosis. I was diagnosed with SBC in September last year (tumour in mediastinum). In February I found out there was spread to my liver (Taxol stopped after 16 weekly doses) and just two weeks ago as part of the work up to go onto a trial I was told I had 3 lesions on my brain. In hindsight, I had experienced some dizzy spells and a few relatively minor headaches but having had labyrinthitis previously I didn't really think much of it. I had been experiencing some pretty horrible nausea but nonone really suggested this could be due ot brain mets (put it down to the liver mets) but now think it is more likely to be related to the brain mets. I have now been started on capecitibine and am just In the middle of my week off. Side effects not been too bad. I am finding the brain mets thing really pretty scary and have been experiencing a shakiness/weakness in my left leg and Arm. Also this week I've had quite a bit of pain in liver area but read somewhere this could be due to tumours shrinking. Would be great if that were the case! Carabel x Add Comment
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17-04-2017
10:24
1 Hug
Thanks everyone for your comments. I will pop over to the other thread you mention. Truffle-Shuffle we seem to have the same(ish) types of mets. Thanks again and I'll catch up with you on the other thread. Xx
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14-04-2017
12:10
Hi mejules Sorry I don't have any experience of sbc in bone marrow. I went from initial diagnosis of sbc in mediastinum in October last year. It has since spread to my bones, liver and brain and I have just started capecitibine chemo. I did 16 of a planned 18 taxol which was quite doable. As others have said you will find a way to live with your diagnosis. I am still working and try to take each day at a time without thinking too far ahead. Good luck with your treatment xx
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12-04-2017
04:07
Hi All I was diagnosed with SBC in September last year (tumour in mediastinum). In February I found out there was spread to my liver (Taxol stopped after 16 weekly doses) and just two weeks ago as part of the work up to go onto a trial I was told I had 3 lesions on my brain. In hindsight, I had experienced some dizzy spells and a few relatively mi9nor headaches but having had labyrinthitis previously I didn't really think much of it. I had been experiencing some pretty horrible nausea but nonone really suggested this could be due ot brain mets (put it down to the liver mets) but now think it is more likely to be related to the brain mets. I have now been started on capecitibine and am just at the end of week 2. Its not been too bad so far. I am finding the brain mets thing really pretty scary and wondered who else is in a similar position? Carabel x
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18-02-2017
10:11
Hello ladies. I have just found out I have liver mets. I was diagnosed with sbc in September last year with a tumour in my mediastinum along with pleural and cardiac effusion. I went onto weekly taxol which had slightly shrunk the tumour after 6 cycles. I had to have a four week break and another two week break after I had multiple pulmonary embolisms and then pneumonia. Another scan aduring this period showed that the tumour was the same size but also showed some mets in my spine and pelvis. It is thought these were not new and that they only became apparent as they were healing. Anyway back on taxol (had 16 in total) my most recent scan showed no changes to initial tumour and bones but now showing the Liver mets. I am waiting to have a liver biopsy (initial tumour was not accessible for biopsy) to check whether receptor status has changed (primary cancer was triple negative) and to confirm whether I am eligible for a trial that my onc has discussed. If not the trial then its likely that I will go on to have cape. Was obviously very disappointed that the taxol stopped working as I was doing ok with it in terms of side effects and it was a shock to find out that there was progression to the liver. I think my onc was also quite surprised. It's good to read that people have lived for years with liver mets.
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18-02-2017
08:50
Hi there can I just check - is palbociclib for ER positive breast cancer only? I am triple negative and am currently considering going on the METRIC trial. I have had recent progression on Taxol (first chemo tried). Waffles I am also in Glasgow. .
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11-11-2016
06:27
Hello ladies - just catching up with your progress. Hope everyone gets back on track with their treatment and good luck with scans. It's hard not to worry. I only got home from hospital today due to a few complications. Will see oncology next Thursday but not sure if they will consider me fit for chemo although I do hope so. Take care xx
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31-10-2016
03:43
Hi Still in having iv antibiotics and on oxygen. Hopefully will get on top of things soon . However will miss chemo again this week so I understand that frustration! Especially since the ct I had on admission showed it was shrinking tumou Here's hoping we all have a better week x
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30-10-2016
04:35
Hi ladies Tat hope you get sorted and you manage to have your chemo this week! Glad you enjoyed some family time. did you get your CT results? I am still in hospital unfortunately- breathing not improving so may have added infection. Apparently blood clots is a recognised complication of active cancer. Not sure whether chemo will go ahead this week but Thursday is still a wee bit away so I'm hoping that I improve enough! Very frustrating knowing that it's been effective and has been interrupted by other complications. Hope everyone has managed to enjoy their weekend x
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28-10-2016
10:27
Hello to all. Tat and Marirose i think you will both have had another cycle by now? Hope its gone well and side effects not too tiresome. My hickman line was a success and made last 2 chemos so much easier. Again side effects minimal so all good on that front. However I was admitted to hospital on monday where ct scan revealed multiple blood clots in the veins around my lungs. I am extremely breathless and currently on iv blood thinning infusion. Hopefully they can get things under control and I can be discharged on the injections. There was some positive news in that ct showed the tumour had shrunk slightly but i had to miss chemo this week. I so hope i can get back on it next week. Take care all. Xx
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