Breast Cancer Now Forum

Hi All   started rads on Monday and got last treatment today. Can't say it has been pleasant at all. Am exhausted & feeling spacey now. Find out what tomorrow brings for me, will let you know, once I've finished, they have said I am going to be exhausted.. Moijan I had two bouts of Eribulin and did OK on them both. Hope you do too. smartie xx ... View more

Hi Moijan, thanks for asking about how I'm feeling. Actually feeling pretty rubbish. Gradually got worse over the last week/2 weeks. Abdomen still tight and swollen - am waiting to see if Spironolactone increased dose helps, not enough fluid for a drain. Liver results from blood test this week not too good, all heading in the wrong direction after moving in the right one for a few weeks. eye still the same,almost no vision now in right one, also have numb forehead on left hand side, a new development. Feeling lethargic and don't want to do anything. Body generally very stiff and weak. No appetite, trying to force foods down. Feel like I did when I came back from holiday in the summer when I went from bad to worse so it's a bit of deja vu. Start radiotherapy on Monday (scared) & know I will be exhausted even more. Sorry for moan but it's good to get it off my chest & share. I do hope everyone else is doing better. Sending love to all. Smartie X  ... View more

Well can't say it was a pleasant experience but the rad team were very good and I got through it with the help of a Lorazepam. The mask is quite tight (I guess it has to be) to make sure that they zap you in the same place every time. It's like a cross between a fencing mask and Hannibal Lector! Starting the treatment a week on Monday and will have 5 sessions over the week. It apparently only takes a few minutes for the actual zapping but then they also have to position you etc. So I will be strapped in for about 10 minutes and left on my own in the room for about 7 minutes for the radioactive bit. That's the bit I don't like the being left on my own strapped down. Perhaps I will practice a bit of meditation beforehand and see if it helps. Almost lost vision totally now in the eye anyhow so it needs something to happen, if it doesn't have any effect on vision hopefully it will shrink the tumour for a period of time at least. Thanks for everyone's kind thoughts - you are a great support to me. Smartie X  ... View more

Hi Mojan i had these antibiotics a couple of times whilst I was on Eribulin. I tolerated them pretty well with hardly any side effects. I normally have terrible diarrhoea with antibiotics but found these to be some of the best, for me at least. Think they are broad spectrum so cover most issues which is probably why the side effects list is so long. I've given up reading them, I don think you'd take anything if you took notice of all the warnings! hope you are feeling ok. Smartie X ... View more

Hi All   Saw the radiotherapy team yesterday and they feel they can treat the orbital tumour palliatively. Side effects will be potential short term headaches, extreme tiredness and blurred vision all of which I'm getting anyway so I figured I hopefully would not be any worse off (famous last words). Obviously it's not a cure but it should stop it growing for a period of time (how long no-one knows) so that it doesn't cause any more side effects or damage. My droopy eyelid is likely to remain but if I don't do anything the tumour could push the eye forward out of the socket or grow backwards and impinge upon the brain tissue itself. I'm nervous about going to the planning session which is tomorrow as they make a mask for the treatment and I'm claustrophobic so really scared about having my head encased and clamped down. Hope I can cope. Then I will have 5 sessions of radiotherapy itself.  The onclogist looked at my abdomen too and said there isn't enough fluid yet to drain it off and the main part of the discomfort and tightness is due to the swollen liver. My steroid dose will be increased once I start the radiotherapy so hopefully this may assist the liver in reducing a little too. Feeling under the weather, lethargic and uncomfortable & scared about tomorrow. Wish me luck. If anyone has any experience they want share about the mask fitting I'd be grateful.   Hope everyone is as well as can be Smartie x ... View more

Hi Ladies, Sharon I'm like you with a swollen stomach, it is unbearable. I'm finding it really difficult to sleep as it seems to get tighter once I'm in bed-how about you? It wakes me up every hour or so so I am feeling exhausted. I am measuring it every day and it is gradually getting bigger, they have increased my diuretics to see if that helps but if no change this coming week I'm going to get  drained too. I'm just going to have a one off rather than a permanent drain I think. I'm not on any treatment now as you probably know but did have 12 cycles of Eribulin, last year and the beginning of this year. I didn't have numbness so can't help you there I am afraid. I'm feeling really ropey, just wish I could get some relief for abdomen, any tips gratefully received, I'm struggling to eat as I can't seem to fit anything in, there seems to be too much in there with fluid etc. to fit in food as well. sending lots of love Smartie X ... View more

Thank you. Tournesol hope you are doing ok. I am feeling rough, vision almost gone completely in right eye, got appointment at radiotherapy unit on Tuesday to see if anything can be done. Will update you. Abdomen swelling (ascites again I fear) it has been fine for weeks now it's distended and tight, makes me feel like I can't breathe & I'm struggling to eat anything more than a babies portion size. GP has increased diuretic dose to see if that helps. Not sleeping well either - had sleeping tablet in desperation last night and now feel like a zombie today, still kept waking up in night but did go back to sleep relatively quickly. Don't want to take another one as they make me feel so rough afterwards. Trying not to feel sorry for myself, I know there are ladies amongst you putting up with far worse without moaning! Let us know how you are Tournesol. Smartie X  ... View more

Hi Tournesol, I don't normally check this bit of the forum so missed your post. Sorry you are feeling so down. Is there a counsellor, or similar, at the hospice that you could discuss your thoughts with? Have to say that I've felt so exhausted and listless the last few days it feels like I'm never going to feel any better again. My eye and associated headaches are getting me down and I have been referred to the hospital to talk about palliative radiotherapy to the tumour in my eye/on the brain surface but I won't make a decision until I know what the side effects versus the potential benefits are.  Although I am at home not in the hospice currently I can associate with your feelings totally, I just feel I am existing, waiting for the next "event". Not much now to look forward to largely because I have no energy. Finding it difficult to go out for dinner for example, as I'm ready for bed by 8pm, even after having a sleep in the day, and I'm on steroids - don't know how much I'd be sleeping without them! Hoping it's still the after effects of my shingles but I suspect it's not and it will never end. Got my step brothers wedding coming up at the end of October but I don't know whether I'll make it as it means travelling away for a couple of nights as its where he lives, guess I should use it as some sort of target and try to stay well enough to go. cant seem to put my mind to anything, guess we are both a bit depressed, only natural I suppose. Try to stay positive as I will, need to find something to occupy my time. my thoughts are with you at this difficult time Smartie x ... View more

Janice, I know what a difficult decision it is to decide on no more treatment but I am glad you (like me) are at ease with it. It would have been my 6th chemo and I think my body too was saying enough is enough. I hope you can enjoy some quality time now with your family and friends. I have spent the last month enjoying a few treats and weekends away at my sisters etc. For those of you debating hospices I would have no hesitation in recommending them from my experience. They are specialists in their field and offer all sorts of support, mental and physical, and to the close family as well as to you yourself.  Hoping you are all as well as you can be. Smartie X  ... View more

Thanks for the tips. I slept like a log last night after taking 1x10mg tablet (with my MST) couldn't wake up this morning, not sure if that's the tablet already kicking in but if it is I'm quite happy as I have been sleeping so poorly recently I have been exhausted. Or perhaps it's just psychosomatic! Hope everyone is ok and coping with side effects. Smartie x p.s. Marirose, didn't know you had MS to contend with too, you are one strong lady. ... View more

Hi All, Saw my GP yesterday & it looks like it is the tumour causing the headaches and double vision. He has prescribed some Amitriptyline as it targets nerve pain better than some others, he says.When the pain comes it's unbearable and seems to be happening once or twice a day, after reading or watching tele or being a passenger in a car, all seem to trigger it. Double vision there much of the time. GP suggested watching TV in sunglasses (lol!) Still tired and not sleeping very well, I can get to sleep but then wake up and can't get back off, my mind races and worries. Feeling a bit sorry for myself, at least the sun is shining though & we are hoping to take a run out to the Welsh Coast tomorrow for fish and chips on the beach - might have to wear an eye patch! Smartie X ... View more

Hi Carolyn, thanks for the message. Shingles have largely dried up now so seem to be over the worst. Feeling tired still & having problems with double vision & headache last few days, not sure if it's shingles related or to do with the tumour in my eye socket. If it's not one thing it's another but trying to soldier on. Hope you are doing ok, Smartie x ... View more

Daisy so sorry to hear your news, thinking of you & your family at this difficult time, thank you for sharing it with us. Tournesol - sorry to hear you are suffering too, sending positive thoughts to you. Smartie x ... View more

Hi All, (thanks for your comments) just a quick update to say I am continuing to regain strength and mobility but it has certainly been a long slog. Got to see my sister at the weekend, it was lovely to have a change of environment (we visited her in Hertfordshire) and with about 6 pillows and 3 wedge shaped supports I managed to sleep ok without my hospital bed. I even managed a couple of glasses of wine!   weight is slowly starting to come back on but my stomach has shrunk so much I am finding it difficult to get much into it at each sitting, little and often and fattening is my motto at the moment!    I developed a rash over the weekend which I went to the doctors with yesterday. Turns out I have shingles! It never rains but it pours doesn't it? Get rid of one thing and then another appears, making me feel a bit depressed as I just seem to be improving and managing to do a few more things & something else comes along. I am on Anti-Viral antibiotics and currently only have a small amount of pain in my side which I am assuming is from the shingles and not my liver (fingers crossed). I have been really tired which looks now like it is from the shingles rather than just general tiredness which I though it was. anyone else had the misfortune of developing shingles and if so any tips?   sending positive thoughts to all and hope treatments are going well, & that the sun is shining wherever you are. Smartie x ... View more

Hi Maria.   I too am claustrophobic and was worried about my recent MRI, it was on my brain so I had to have my head in the scanner. I asked my GP to prescribe a relaxant (Diazpem) just a small dose which I took an hour before hand and as the scanner is not radioactive (it's just magnetic waves) someone can come in to the scanning room with you. My husband came with me and massaged my feet the whole time, I felt safe with him there and having someone making contact with me. I was really chilled & surprised myself. So if possible see if you can do something similar. good luck! Smartie X ... View more

Feeling a tiny bit stronger every day. Can now get up the stairs on my own albeit slowly. Am eating much better although stomach has shrunk so it is little & often & trying for calorific items. Have managed a glass of wine, first alcohol for 9 weeks. Have walked into town from my apartment & had a coffee. Feel like progress is really slow but at least things are heading in the right direction determined to enjoy things whilst I can. Hospital bed proving to be comfortable - thinking about going to visit my sister in a couple of weeks, just a bit worried about sleeping in a normal bed again, will have to see how it goes. So all in all, not too bad, no pain, no new symptoms still got lymphedema in legs but right leg a little improved. Feel like it's a slow improvement but when I think back just a week ago I have come on somewhat, from feeling like I was at deaths door to now is a big step forwards. Hickman line coming out this Thursday - having blood transfusion on Wednesday its last use (HB only 88). Thanks for your thoughts, will keep you posted. Smartie x ... View more

Hi Tournesol, so sorry to hear about your brain mets diagnosis. I've only got one which is on the surface of the brain rather than in it & connected to the tumour in my orbital socket, I had some problems with vision & a droopy eyelid but touch wood, I've had no other symptoms. As I've stopped all treatment now not sure what's going to develop but trying not to worry too much. My onc thinks my liver Mets will cause me more problems first - don't know whether I should be glad about that or not!! Hope you are not getting too many symptoms-try to stay strong. Smartie x ... View more

Thanks for the replies. I have slept on the air mattress for two nights now and last night better than the first so hopefully I'll get used to it, not a bad sleep either. I have decided to bite the bullet on the line removal and am booking in for the week after next, I am going to have a bit of sedation to help with the anxiety and in case of any "sticky" issues! I am eating a little of what I fancy, which at the moment is plenty of chocolate - have discovered Montezumas giant chocolate buttons 58% cocoa & very moreish!! Love to everyone on this sunny Friday  Smartie X ... View more