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Bone mets - please join in

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Re: Bone mets - please join in

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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Mowser, so pleased you had a better nights sleep. Let's hope it's the same again tonight!!! Lovely you've booked a break - weather should be a bit better then.

J - I hope yur back improves - always such a worry when we get a niggle - you're right our minds are our own worst enemies.
Desi - so sorry about yur oh - they are so difficult aren't they - I know exactly what yu mean. Just hope things are a bit better today. You just don't need this on top of everything else.

Nanofthree - can't really help you as only just over the year mark with sbc but perhaps some counselling would work for you. Someone who you could talk through all these worries and then leave them there for the week and relax a bit inbetween. I'm thinking of you xxx

Quick update on Helen - she can stand today but still struggling so tucked up in bed hoping for further improvement tomorrow. I've hinted heavily that she should still seek medical advice tomorrow. She sends all her love to you wonderful ladies and is very grateful for your concern.

Have a good rest of the day.

Huge hugs,
Hxxx
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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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Good afternoon everyone
Hope the non sleepers can rest this afternoon and have a better sleep tonight.
Desi, hope your OH has started to make it up to you and you're feeling a bit happier.
Natalie (going to be strange calling you this!!) I'm hoping you get some relief for your back pain but we all know what it's like when our imagination runs riot.
Helen, been thinking about you and hoping you've got something to help with your back pain.
Keep warm ladies and only go out if you really have to!
LD x
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Can someone please give me some advice? I have had mets in the bone for six years now, and have been on capecitabine for the past three years. All ok so far but I am finding that the more time that passes, the more worried I get. I know there are some of you who have had mets for longer than six years. Am I the only one who worries more as time goes by? I feel as though my luck will run out soon and then my mind goes into overdrive. Went for a checkup last Friday and my BP was sky high. The hospital now want me to go onto blood pressure tablets. Anyone else on these? Any side effects? Love Ruth x
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Hi Desi-2, aww sorry you had rubbish evening with your oh....MEN!!! I hope he makes it up to you today.
Helen, hope you are feeling better today, been thinking of you.
My back still not great and feeling very tired today, get CT scan and TM results on Thursday...hope it is not going to be bad news, the pain i can cope with its what it does to your imagination i hate!! 😞
Hi to all, hugs J x x
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Morning ladies. Hope everybody is ok today - its lovely and sunny here in South West. Helen, I do hope you managed to get some relief overnight and are feeling better today. Big hugs xx

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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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Morning ladies wondering how you are today Helen?
Just going to have a little moan I'm afraid, after a lovely Christmas and calm new year OH went off to his football yesterday (season ticket holder) and unfortunately reverted to type on returning home, new it wouldn't be good as he was later than usual and as expected staggered in, real nasty mood on him lots of swearing and mumbling under his breath about shouldnt have bothered coming back, but what really upset me was that he was even mean to our dog. Not physically just ignoring her but when she been sat waiting for him to return for several hours he knew that would upset me. She's devoted to him and it does plague my thoughts as to whether he will treat her right and not neglect her when I'm not here. I'm sorry if that offends people with children it must seem quite trivial but can't help it😞
Xxx
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Ive been up since 4am too... its the prednisolone. But small price to pay to be able to breathe so much easier! Had a nice cuppa but feel a bit peckish now so time to pop some crumpets in the toaster i think.
Hope youve managed to drop off Lynn and
Mowser....hope you're far away in the land of nod too!
A very early good morning roll call to everyone else! 😉 xxxxx
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Hi everyone.....as you can see unable to sleep...but a lot of us have the problem don't we?
Sometimes resort to zopiclone but too near to morning now....hopefully will drop off soon for a couple of hours...
Just been reading all of todays posts....
Helen .. Hope Your back pain is better .. Like everyone else I think u should be seeing medic..
When I first started reading and posting here I got lots of support from reading Lemongrove..so sad...
Hope u are sleeping Mowser...l tend to have 2 or 3 bad nights then a really good one.....hope the good one happens Sunday night (now tonight) since I am looking after my adorable and very energetic granddaughter for the day.
Having read all of todays posts. (Sorry now yesterdays aren't they). Can see how busy it has been.....so sending love, kind thoughts and hugs to everyone.....l.
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Yes thanks, can go to bed now...Please God let me sleep tonight....

 

See all you lovely ladies tomorrow ...sleep well Helen xx

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Thanks for the update Chocs. X
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Helen is usually an early to bed girl. I heard from her earlier and the pain meds were making things a little more comfortable. She has promised me that if no better tomorrow she will get medical advice.

J, hope your back settles too. What are we all like?!!!!

Had a lovely evening with my daughter. The only pain I'm currently suffering is from my purse!!!!

Huge hugs,
Mowser hope you have a better night.

Hi faraway, Sheila and Mavis - thinking of you all.

xxxx

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Hoping you're feeling ok.
Big gentle hugs, LD x
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Hi Helen hope you are ok xx
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I sent a message has been seen but no reply as yet x

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Ditto....BCC girls to Helen, BCC girls to Helen, is anyone there? Come in Helen!  ❤️

 

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Helen, hope you are ok lovely. X
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Helen ive just come on to reiterate what everyone else has said. You really must get to the bottom of this pain.
Mowser...hope you get some sleep whatever it takes! Read all the other posts and sending love to everyone. Xxxx
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You tell her natalie 1!

 

Helen, we are on the (your) case now..Hope you have managed to get a medical opinion and some support with this today...

 

Mowser xx

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Helen, i am with everyone else, if you haven't already you really need to get in touch with the hospital even if it is just for advice....i think i must be coming out in sympathy for you, we had to cut a shopping trip short as my back has given me a lot of pain today 😞 so get it sorted or it is the naughty step for you madam!!!!
hugs J x x x
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Sorry to hear you are suffering so much Helen, I hope you've been able to get some advice from a professional and something positive is bring done for you. Sending gentle hugs.
Bev, glad that you have some help regarding the breathlessness and that things improve soon.
Belinda, I hope everything went well yesterday and you feel OK after the chemo. I had a port fitted under local anaesthetic about 2 weeks before I started chemo and it's been such a relief. I just get 'plugged in' straight away in the chemo ward, no delays, no hunt the vein. Unfortunately I couldn't have a power port fitted otherwise I'd have asked for one, they just don't use them at the hospital I went to, so I still have to have dye injected into my arm for scans etc but now this isn't being used on a regular basis my vein doesn't cause any problems. My port is in my chest, a bit prominent for my liking but I just have to make sure my clothing hides it and it's where the surgeon recommended it went as there have been less issues with these ones that he's fitted.
Porkie, sorry to hear of the changes that have been picked up on the scan.Good luck with your treatment and hope it relieves the bloating.
Mowser, hope you get a good nights sleep. I get the occasional sleepless night, normally once a week it seems and definitely had this more often when on Cape. I don't have any words of wisdom I'm afraid I just hope things improve for you.
I was very sad to hear about Lesley/Lemongrove. She was a very active member of the forum and gave invaluable advice about treatments for brain mets. A very strong lady who will be sadly missed.
Apologies to anyone who I have missed out, it's been a very active thread recently, and I hope all those starting new treatments gets the results they want as well as all those on current treatments.
Nicky x

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Hello, Helen. I'm with everyone else on this - you really need to contact the hospital now. You shouldn't have to suffer pain like that! You haven't posted since this morning so I hope it means you are getting the help you need. Please don't suffer in silence! As the others say, if it was someone else, you would be giving them this same advice. Don't mean to stress you out here. I know you must do what you feel is right. Thinking of you. Love and hugs, Barton.x

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Yes I have come here again 'cos I'm a bit worried Helen. Don't wish to frighten you but spinal cord compression can give you weak legs, a huge onset of pain and you don't always lose your bladder control. Of course, I hope, it's not that at all but something or nothing. But maybe you can have it ruled out quite quickly at the hospital. I had some simple checks when I developed sudden back pain late December just gone. X
Thank you for that info Lemon D, really helpful. X
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Helen, I am with Chocolates on this one. I don't know if you have ever had this type of back pain before, where you feel unable to support your weight, it sounds scary and painful and debilitating and you cannot just leave yourself high on pain relief for the weekend with no other support or a medical person to have a look at you.

 

You are so good at giving brilliant advice and support to others on here, this does seem like it would benefit from a medical opinion before Monday! At least then you will know what it is, that you are treating it in the best possible way, and you can get yourself better sooner. Please, please take care, and do call an emergency doctor for this-they will not blink about sending someone out to see you-and you are not wasting anyone's time..

 

Take care, I hope you get pain relief soon, please please call someone or get someone else to call someone for you.  🙂 xxxxx ❤️

 

 

Julie, I am thinking of you today-I didnt know Lesley, but by all accounts she was a wonderful strong woman with a lot of family and friends who loved her dearly, including you. Love and hugs to you.


 

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Porkie - sorry I missed your earlier post. Sorry to hear the results from your scans. What's next - I really hope you get your new treatment plan soon and they get everything under control again quickly. There certainly isn't a dull moment with this disease is there.
Belinda - I have a power port in my arm - it works really well. It also does ct scans etc. would totally recommend. I'm terrified of all procedures but it's actually ok to have. The worst bit for me was finding a vein to start everything off. The port has been great - I would go for it.
Helen, I'm very worried now - I really think you should be phoning the hospital. If one of us was posting about our back you would be saying phone the hospital - so please, please phone them and tell them exactly what yu are experiencing. They are the experts - let them make the decision as to what you should do. Also, I'm going to be worrying about you all day and that's not fair on me or the other ladies. So PHONE now. Xxxxx
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Good morning everyone
Just typed a long post and somehow it's disappeared grrr.
Bev, I'm glad you now know what's causing all your breathlessness and hope your breathing eases quickly.
Helen, your back pain sounds awful. It's typical that it happens at the weekend, but even so someone needs to help you. If your hospital can't help and your legs can't hold you up to go anywhere, you need to get an emergency doctor out to you.
Mowser, I could have joined you and Belinda for a drink in the middle of the night!.
Julie, thinking of you on this sad day.
Belinda, I've not got a port but have a pickman line and although I was terrified about the procedure I sailed through it with the help of sedation. I'd definitely recommend that you get a port especially as it will be used so often and the thought of finding veins weekly makes me shudder!
Keep warm everyone
LD x
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Mowser hope you managed to get some sleep eventually there,s nothing worse than lying ther not being able to sleep,but sounds like you are well prepared .
Helen hope your back gets better as the day goes on if it doesn't you really need to ring your hospital ,take cared
Hope everyone is doing ok ,we had a little bit of snow last night so no doubt when I go shopping it will be busy as people panic buy as soon as they see a little bit of it.
Take care all
Kaye xxx
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Thanks for all the info Jackie! That's really helpful. X
Helen, I'm a bit worried you said your legs are buckling and the pain is very bad. Do the hospital know about your legs? Why do these things always happen at the weekends. X
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Helen, I feel for you. I do hope the pain eases a little as the day goes on and you manage to get some relief. If it continues I woild be contacting hospital again because they should check you over if you are in that much pain. Take care,Jackie x

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Hi Belinda - good to hear that first chemo went well - lets hope it continues that way. I had a port fitted in my arm before chemo last year. I pushed for one because I hate needles and it has been the best thing I did. My only downside is that because I have lymphodeama in my other arm it is difficult to have blood pressure taken as not all health care prof seem to want to take on leg. Also my port does not take the dye for scans so again have problems finding access for this so my advice woild be to try and get a power port fitted as these can take the dyes. I was terrified about the actual procedure but it was done under local and I didnt feel any pain. My understanding is that once done it can be used for chemo straight away so perhaps if it was possible to have fitted on week off when bloods at their best this woild limit infection risk. Good luck in your decision. Jackie x

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I get zoplicone prescribed 3.75 mg get me off to sleep and wear ear plugs asked for them when in hospital last year and now on repeat you can get Sleep eaze from boots these ones are antihistamine where mine arent xxx

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Thanks chocolate xxx I had to laugh at getting addicted to sleeping pills,if only!!!
I have diazepam for spasms. I've been told I can only have a few as they are addictive too. God really I wish I had time to get addicted to them grrrr. I've had the mST,oromorph,diazepam,paracelemol ,ibuprofen and still in agony . On top of cap and anti sickness so I'm slightly high and in pain .i can't get out of bed as legs just buckle and can't hold me up. Hopefully will be better tomorrow. Xxxx
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Trying to catch up here, so much has happened,
Porkie, I am sorry to read you have had some spread, hope the Tamoxifen can hold things stable and give you a longer chemo break. X
Bev, hope the asthma can now be taken care of nicely, now you finally know, have some answers. X
Mowser, you sound a well prepared person for your sleepless nights. I could have joined you for a lime drink, 2-4am. 🙂 X
Natalie I used to take Amitriptyline, hope it helps. X
Helen, hope the back pain eases up over the weekend. Good old wheely chair. Can't believe the Peach Pills Saga. X
Thinking of Lemongrove, her family and you today Julie. X
A few flurries of snowflakes here, nothing much, the first of the year. Feeling ok, my first Paclitaxel yesterday, went ok. I should have had a port fitted a couple of years ago, was in hospital, waiting, but got knocked back because of emergencies and decided to go home rather than be admitted that night as only had two chemo sessions to complete. However been advised to push for port again, anyone with one, did you have it fitted mid chemo? I'm bit worried of infection risk? I'm on weekly chemo, three weeks on, one week off. A local anaesthetic and straightforward? Thanks. X
Have a peaceful weekend all. X
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Morning ladies,

Mowser, I really hope you managed some sleep. At times I find it difficult - I now just accept it and lie there with my eyes shut. Sometimes for hours but I try not to fret about not sleeping - if you know what I mean. Eventually I do drop off but feel awful the next day. My dr took Helen's view - only gave me a few tablets because they are addictive!!! Is there another bed yu can sleep in away from yur husband - I only ask because I found myself getting very irritated with my oh snoring, and not in a relaxed mood to sleep. Huge hugs xxx
Helen, I didn't realise you'd switched to the sister hospital of faulty towers. What an earth is going on? So sorry you had all that mix up over yur tablets. Now yu have a really bad back. I've struggled with back pain since being a teenager and know exactly how you feel. My advice is to max out on all painkillers and then get up. However difficult and painful it sounds you need to get up and about. My gp presribes me a muscle relaxant for at night to stop the spasms - I think it begins with d. However I am assuming that you have back spasms - if you really can't get up after all painkillers you will need to go to hospital to get checked. Easier said than done. When I phoned they presribed over the phone, husband collected prescription and what a relief. Anyway please look after yourself and don't suffer - huge gentle hugs sent to you.
Bev, pleased that they have finally presribed some meds that will make you fell better - fingers crossed they work quickly and effectively and your breathing really improves..
Hope everyone else is doing ok - wrap up warm - it's cold this weekend - and if you have snow I'm very jealous - don't think they'll be any here in the south.

Huge hugs everyone xxxx
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Thanks ladies,xxxxxx no I don't have BCN or mac nurse. We managed to get me on wheeled computer chair and wheel me to bathroom absolute agony but at least my bladder is empty. Better not drink rest of day as I don't think I can do that again! I'll just put a straw in oromorph an sip that. Lucy in the sky with diamonds .......... Xxxxxxxx
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Aww Helen, just read your post, hope that pain eases, if your maxed out on tabs maybe a hot water bottle may help take the edge off???? Sorry i know it is not much help but it may just do something.
Sending you a huge hug J x x
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Morning ladies, very cold here in the northwest and the snow has just started to fall.
Julie, so sad here of your friend Lemongrove, my heart and tears goes out to her family.
Mowser, hope you managed to finally drop off to sleep, there is nothing worse than lying there willing yourself to go to sleep, i have finally given in to myGPs advice and i now have just half of the amitriptyline 10mg tabs she prescribed, i dont have one every night just when i feel i need one, and they dont leave me feeling groggy.
Hi to everyone else, hope you are all ok and have a good wkend.
Hugs J x x x
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Helen that sounds awful and can't believe the hospital are so unhelpful. Do you have a macmillan nurse from your nearest hospice? Xx
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Mowser used too hate those nights hope you managed some sleep xxxx
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Good morning lovely ladies.
Well I'm stuck in bed back pain is horrendous. I'm dying for a wee but just can't move because of pain. It started last night and is worse. Any tips on how to get to loo would really help 😞 . Hospital said if I can't get in just to take pain killers?! A whole bottle? I'm already maxed out on all of them,great help they are.
Very gentle hugs ,Helen xxxxx
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Still awake, tea and hot water bottle cold, Pint of lime cordial and water drunk...*twiddles thumbs*

Taking the sleeping tablet now. Wish me luck...

 

A very nauseous, achey, bored out of my brains Mowser xxx

 

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Well lovely ladies, looks like I am in for (another) sleepless night. 😞  I am beginning to pick up the signs.

 

This time I haven't bothered with the usual denial and 'giving myself the benefit of the doubt' lying in bed tossing and turning for hours until the gremlins arrive to mess with my head in the dark while the OH snores peacefully (for him) loudly (for me)  beside me..  

 

So I have sent him to bed in the advance party, made a cup of tea, a hot water bottle, a pint of lime and water (with ice), got two books, my laptop open, Plex on my wide screen TV, remote control at the ready. Even popped a sleeping tablet in my dressing gown pocket to ease myself into sleep when the time feels right. 

 

I HATE these nights. I need to have as much stimulus around me until I am confident I can relax into sleep.

 

Jury is still out on my hair. I have fondly nicknamed myself Period Head.

 

Night night everyone. Hope you are all managing a lovely sleep. Very jealous.

 

Hugs and all 

 

Mowser xxxx

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So sad to hear about lemon grove condolences to her family xx
Helen what a nightmare day for you,glad you got there in the end ,when I go for mine I have bloods done same day and only wait about an hour and half while they get blood results which take about an hour ,so by the time I have a drink they are usually ready.
Bev glad they finally found out what's causing your breathlessness hope it eases soon xx
Hope everyone else is doing ok .
Night all
Kaye xxx
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Julie D ,just read the sad news about Lesley. My heart goes out to you,her friends and family. God I hate this disease so many taken far too soon. All my love to you Julie xxxxxxx
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Bev so glad your nurse was on the ball, I have asthmaand so most colds etc go to my chest, the inhalers do help and you should start to feel mire comfortable with breathing.

 

Helen,I had a similar problem last week. When I was treated in London they used rtrospective blood tests for my Zometa, at the Sussex hospital I had to have bloods done the day before treatment, the Sussex hospital changed this several months ago and so back to retrospective bloods BUT different nuse this week, wouldn't do it, phoned pharmacy they were doubtful..... in the end managed to get her to ring the Onc who'd ok'd it. Eventually said she would do it, then we had problems with my port, nurse wouldn't listen to how we usually overcome problems...... not a good day but done eventually.

 

Am going to my friends (Lesley/Lemongrove) funeral tomorrow and am feeling so sad and angry. I'm glad that Lesley has now finished this journey and is at peace but I hurt for her lovely husband and her family and I wil miss her.It is a buriel so I hope it is a dry day.

 

On a more cheerful note I'm looking forward to next week as I will be meeting up with several other SBC women for lunch in London. It will be good to see some people again and to meet others for the first time.

 

Hope you all have a good weekend xx

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Oh Helen you could write a book on your adventures!! 🙂 how frustrating, hope you managed to get it sorted in the end.
Bev, glad to hear you got to the bottom of your breathing problems
Hugs to all J x x
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Porkie,Oh yes,it could only happen to me lol .i know what you mean. It's strange getting anxious over getting a poison,yes I eventually got pills a some hand cream too! Every cloud .... Lol
Good night lovely ladies,hope us none sleepers manage to grasp 40 winks,I'm busy working my way through listening to all the Poirot talking books Xmas pressy from hubby,David Suchet has a really relaxing voice when he's reading,night to everyone xxxx huge hugs ,Helen xxxx
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Oh dear Helen - it could only happen to you. I do hope you manage to get the pills later. Strange isnt it that we are now wanting all the horrible drugs we can get whereas before my diagnosis you wouldnt even get me to take a paracetomol! Bev - so pleased that you are getting some relief at last, I hope you feel lots better soon.xx