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Mowser
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24-11-2014
131
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23-03-2016
11:48
Hi Chris, yes I have just finished this trial-unfortunately it didn't work for me-after three months I have had significant progression so am onto next treatment in a week or two. Do NOT be put off though-it could work really well for you-I know of other women who it has worked really well for! And for a long time! I was just unlucky! I had to take a couple of Blood pressure medications to keep the BP under control, and had to increase my thyroid medication as it lowered my thyroid function. It also can impact your kidneys-I had to come off drug for 5 days as I got unacceptable levels of proteins in my urine. Also felt very tired and achey on it but it's OK-they monitor you very closely, are a lovely friendly trial team and they will look after you! If you want to ask me anything else about it feel free! And good luck if you go ahead with it! Xx
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23-03-2016
11:47
Hi Chris, yes I have just finished this trial-unfortunately it didn't work for me-after three months I have had significant progression so am onto next treatment in a week or two. Do NOT be put off though-it could work really well for you-I know of other women who it has worked really well for! And for a long time! I was just unlucky! I had to take a couple of Blood pressure medications to keep the BP under control, and had to increase my thyroid medication as it lowered my thyroid function. It also can impact your kidneys-I had to come off drug for 5 days as I got unacceptable levels of proteins in my urine. Also felt very tired and a hey on it but it's OK-they monitor you very closely, are a lovely friendly trial team and they will look after you! If you want to ask me anything else about it feel free! And good luck if you go ahead with it! Xx
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25-11-2015
12:04
Hi all, quick question. I remember reading an old thread over 6 months ago about Radio Frequency Ablations, and it prompted me to ask my onc to consider it for me last March which he did, and it seems to have been reasonably successful. However, I am back in the same situation again, with a rogue liver met not behaving whilst others appear pretty stable, and I was wondering if I can ask for it to be done again? Has anyone here had more than one RFA? In what time period? And can you remember the cut off point from a met size point of view after which they won't consider it? Any help or advice gratefully received! Love to you all Mowser xxx
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09-10-2015
05:32
This may sound a little unimportant but its not to me!! My teeth are really stained, and I havent been to the dentist in about a year now. I am very self conscious, and am desperate to have them cleaned and polished. However, I am on EE, which is known to cause problems in the mouth especially mouth ulcers-in fact I have already had to have a 10 day break from it to get a big one under my tongue to heal as it was stopping me from eating it was so painful. I am back on it now, but want to get my teeth cleaned!! Does anyone out there have experience of having dental work on this combo, and if so, is it safe? Dentist keeps saying it is the teeth they are cleaning not the gums, so thinks he thinks it is OK, but then why does the info on EE stress the importance of using a soft toothbrush to brush teeth while on it, as the gums must become quite tender and vulnerable.. Any advice much appreciated!!! Mowser
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23-01-2015
04:15
So confused about when they decide anything is significant or not! Thought scans were always more reliable than TM's...the onc is always saying that..... ...yet, I saw my TM dropping slightly last two times I have seen him, BUT my CT scans show growth in the liver tumours AND new liver mets, but he has kept me on the same treatment - that I dont think is working for me. I am in a lot of pain and discomfort unless on strong pain relief....Have told him about pain, and he just said try peppermint oil. Worried and confused.... Mowser xxx
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22-01-2015
10:26
Hi Bev, Nothing much to add as all the other ladies have said it. Im so sorry Bev that this particular treatment has stopped working, but don't give up-there will be other treatments that could work-speak to your McMillan nurse or doctor for guidance-we are all here with you lovely lady. Hugs and lots of love, Mowser xxxxxx
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20-01-2015
08:27
It is Bev.. unbearable, heart breaking, cruel, and so so painful at times. xxxxx
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20-01-2015
08:24
Yep, every single one Bev, it always happens, Love and hugs Mowser xx
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20-01-2015
07:23
Hi Bev, I really think what your BCN says is right- and that it is because you have been coughing and have strained your diaghragm muscles-I have multiple liver mets all over, and somedirectly under my ribs, and the pain and soreness I get is more a dull ache, but it only really hurts when I breathe in, hold my fingers steady on the spot, and let the liver really press hard against it-then it hurts. But not at all by any gentle touching. And i agree with you, if there had been anything kicking off such that you could actually feel it, you would have seen something in your last bloods. Try not to worry lovely lady, you take care, you have been through so much the past couple of months-you need a break!! Scan results will be with you soon enough, and based on what you describe, I find it hard to believe it is anything ominous. Loads of love, will be thinking of you tomorrow, Mowser xxxx
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20-01-2015
12:28
I am sorry that i cant help you with that-I am sure that others on the forum will, but what a lovely thing to be plaaning to do SpringSummer, and what a great forum name I love it. Good luck with fulfilling your dreams! Mowser xxxx
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20-01-2015
12:26
Hahahaha, I have already told my son and OH that if I am able to, I will definitely haunt them, but in a good way!! Like unravelling the toilet paper when they are on the loo, or pulling back the bed covers if the OH finds another woman after me!! That'll teach her!! 🙂 😉
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20-01-2015
11:53
Helen, so glad to hear you are back on form, moving about, and feeling a tad better albeit drugged up to the eyeballs-arent we all!! You have such a wonderful, whimsical sense of humour that always makes me smile. It makes me feel as though I am in one of those wonderful black and white comedies with Cary Grant amnd Lauren Bacall! Just getting my insurance confirmed with MIA today-not been feeling great these past couple of days. Worried it will spoil my holiday 😞 Hope you ladies all have a great day, sun is shining, and where is this flipping snow they keep promising us? I love snow!! Hugs 'n stuff, Mowser xxx
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18-01-2015
03:33
Hi Nanofthree, It is perfectly normal to worry about things progressing-you have been doing brilliantly so far, and the fact that Capecitebine has worked as long as it has, I think is a very good sign that what you have is a slow growing, unaggressive form of the disease that responds really well to chemo! So you could carry on this for years yet!!! Even if, at some point you find that it has progressed, you do not need to be overly concerned, because even if it does,there are lots (and I mean lots) of alternative treatments to switch to, that can be just as effective as Capecitebine!! So you keep doing what you are doing-try to put it to the back of your mind and carry on enjoying life-you are doing everything you can and as long as you are being regularly monitored you have many, many happy years ahead of you, I am sure of it! Re blood pressure tablets, my OH has a large dose, as he suffered a massive heart attack last year, so is on all manner of different drugs including those to control cholesterol, and blood pressure and he is absolutely fine-no side effects. Blood pressure tablets are very effective, and safe! Have a great Sunday with your family! Love Mowser xxxxx
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18-01-2015
03:12
Hi all, Had a MUCH better nights sleep, thanks everyone. Way too cold to go outside today! Dogs would if we would! Ellie on a health kick this month, so making her own Tomato and Basil soup as we speak....The OH has all the vegetables prepared for Sunday Roast Chicken dinner, (he makes the BEST roast dinner in the world) I have just booked a weeks holiday for us, dog walking in Pembrokeshire for early March. Taken pain relief for my liver and back. May treat myself to a glass of wine with lunch-used to be such a party animal but am a lightweight now!! Quiet day for us today-staying in from the cold. Helen I do hope you are feeling better and that your back pain has eased. Hope everyone else is doing OK with their Sundays... Take care all, Hugs Mowser xxxx
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18-01-2015
12:08
Oh cw17, I am so sorry. It does put a terrible strain on everything doesn't it. At one point during our argument yesterday he said, I cant take much more of this, I am this close, so I screamed, well just leave me to die alone then. When he asks what wrong-sometimes I too spit out what do you think is wrong, Im tired, I am in pain, Im tired, I have cancer. It's all soooo boring, even to me, so God knows how he can put up with it. Don't get me wrong, I am doing great by all accounts, but it is the constant COPING we have to do. I am sick of COPING with this. It's exhausting. And the majority of my family and friends just don't see any of the hard stuff, because we protect them, and present our best possible selves all the time, try to stay upbeat and leave the c--p for when we are on our own, or just with the OH. Its awful. I can't go back to being who I was, to my old life (I used to be the life and soul, so much fun, always upbeat, happy, optimistic) but I have changed-this awful disease is changing me, in ways I don't particularly like. And then inside, is the vulnerable ball of the old true me, who is dying inside with emotional pain at the thought of leaving my autistic daughter to cope in the world without me. As you say, I am not crying for me, I am crying for her. I havent told her anything yet because I cant cope with her knowing, and seeing the pure terror on her face at the thought of her mum leaving her-I am a single parent-her dad sees very very little of her and she has no relationship with him to speak of. Its one day at a time for sure. But I do get so much support from this forum, and from all of you. Its comforting to know others get how hard this is, even though I wish you, like me, didnt have to deal with it at all. Lots of love and hugs, Mowser xxxx
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18-01-2015
11:52
Oh Desi-2, That would be upsetting. Dogs are part of the family. Some people are not as good with drink in them, he will probably be sorry about it this morning. Try not to worry about things-you have enough going on. You just take care of you, Lots of love Mowser xxx
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