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Bone mets - please join in

2catlady
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Re: Bone mets - please join in

Fantastic news faraway xxxxxxxx go girl xxxx
rosie53
Member

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Hi Helen, good to have you back, hope you had a fab time!!
Hi Faraway, that is brilliant news, bet you feel so relieved.
Hugs J x x x
Faraway
Member

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Hi All, good news for a change since starting Docetaxel my TM have reduced by 80% had 3 cycles so far. Got CT on Mon and all if ok they will ring with results the following day saving me a long journey and normally hours waiting in waiting room! Xxxxx
Barton
Member

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Hello everyone.  Can I give you a tip regarding backscratchers? Instead of using a spaghetti server, why not get a telescopic backscratcher from EBay? It goes down to about 5" long, and cost me 99p, postage free! I was amazed, but it is absolutely brilliant. I keep mine at work but am wishing I had bought 2! Hugs, Barton.x

roxy12
Member

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Good morning to everyone. 

I hope everything was okay Porky with your scans. There is always something to worry about with this disease but I am sure they will sort things out for you. I have only just found out that they were thinking of palliative care back in October but my daughter asked them not to give up on me. ( I was too lll to realise what was going on) they said they would not give up and here I am feeling much better and chemo is keeping me stable. Keep positive Porky.

I hope everyone else going through scans and appointments have good news.

Have you had your appointment yet Belinda? I hope you are OK.

Glad you had a good break Helen despite the insensitivity!

Chocolates, I hope you are well over the virus and back to normal. You deserve a break now!

 

Lots of love Sheila xx

madge1
Member

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Good morning ladies,
I have just read the Daily mail on line and there is an article in there which states "anger as fund cuts six breast cancer drugs"!!!!! The Cancer Drugs Fund are taking off Perjta, Avastin, Kadcyla, Eribulin, Afinitor and Tyverb !!!! This has really upset me and tearful as I write this as I was hoping that these drugs would be available as was told there are many lines of treatment when I was first given my double whammy diagnosis, and this gave me hope that I could have a normal life for as long as possible!!! They say that these drugs are "insufficient value for money and not cost affective. What are we to do ????? I was told I had many years as there are many options out there, but it seems that these are being taken away !!! I am on Perjeta with Herceptin at the moment just had my 5th cycle this week !!!
Love Julie
Xx
2catlady
Member

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Good morning lovely ladies,hope you have all been okay and been keeping my spare hubbies amused when I've been away!

Mavis,I was a member of inspire and it was very useful. But I got a lot of creepy men from other countries wanting to be my friend! I also got a couple of religious nuts telling me I was lucky to be chosen by god to have cancer!! So I stopped using it.
More normal people on here lol

Had a nice break,the sheer amount of people walking around smoking was awful. As no smoking policy was not enforced and being in a wheelchair you tended to get their smoke in your face.
It's not my disney that I love in USA .staff rather surly in parks. Had to prove I was disabled by taking blue badge and explain why I needed a chair and what I was able to do so I was able to get a green card so I could use wheelchair to get on rides !! (As I can't stand in queues and need chair to sit in while waiting)
My angry eyes were used quite a lot I must say! Especially being told off by a disney person for not getting a ticket to come on ride as I was disabled,she said she'd let me on this time but not to do it again ,grrrrrrr! Apparently for some rides I needed blue badge,green card proving I'm disabled and a time slot card,double grrrrr and really angry eyes!
The Christmas decorations were lovely and I sang let it go at top of voice when it was on if firework show. The disney "snow" was pretty too around the Christ,as tree. But it was absolutely freezing cold never got above 1*. But apart from a few blips I enjoyed it but would not go back.

Oh,I'm still reading posts so hope everyone is okay .
Chocolate,oh iPads can come on live chat. I do hope so.

Well,I'll love you and leave you as washing pile calling,speak soon,huge hugs,Helen xxxxxx
Bevlaar
Member

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Hurray...easier access to live chat at last! Will look fwd to joining in.
Helen...welcome back tomorrow and hope youve been a good girl over there!
Im still having duvet days due to chemo....a new side effect cropped up tonight. Really painful ankles and knees!
What next? Breathing still sounds like a tractor rumbling through the bedroom!
Onc says its not really a side effect but didnt have it going for chemo on saturday and the family all say i had it after the other 2 too.
Dont want to think its the disease....but cant help worrying...and other people have said they get breathlessness after chemo. Dont know if anyone gets it this noisy tho too. Its so tiring when it keeps you awake at night....worse than listening to snoring!
Confused.com!
Nite nite ladies xxxxxx
sivam
Member

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Hi dear friends, dont want to be on the naughty step either, I am doing quite well still, now that I have some strength.7 days into Capecitabine and so far no "trots" feet are playing up again and district nurse is still dressing heel ulcer, which I believe Cape plays a major role.Am being lined up for a  CT scan next week, slightly worried because the rib and scull pain is worse, managing with Paracetamol, had a bad reaction with Oramorph "eugh".Hope you had a lovely time Helen.Love,Light and Laughter xxMavis

Ps Do nay of you follow the American forum "inspiration"?I find it quite informative.

Chocolates
Member

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Ladies, did you see that from next week you can access live chat on your iPad, mobile device. I know a lot of you don't take part as too inconvenient. Would be really good if you could join us from next Tuesday.

Hopefully one of our lovely moderators will copy the instructions of what to do on this thread so you can get yourselves sorted before next Tuesday.

I'll say welcome back Helen now as I'll be in work tomorrow and may not get a chance to post. Hope you had a lovely birthday and a fab time at Disney. Looking forward to hearing all about it.

Huge hugs everyone - fingers crossed for good news from scans/treatments.

Hello Sheila, Mavis and faraway - hope you're doing ok.

Huge hugsxxx
bertie1
Member

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Hi ladies haven't posted much as been busy with hospital appts and scan results next week starting to feel anxious now.Hope everyone is doing ok and good luck to all with appts,scans and results.
Bev hope you start feeling better soon xx
Take care ladies
Hugs Kaye xx
Bevlaar
Member

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It works really well Mowser...i keep mine by the bed and take it out with me in my bag if im going to be out all day. Works instantly xxxx
LemonDrizzle
Member

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Good afternoon everyone
Don't want to be put on the naughty step or miss playtime when Helen comes back, so thought I'd better report in.
Hoping ultrasound went ok Jackie and the 2 week wait for results isn't too stressful for you, Janette.
Billben - your idea of using a spaghetti server is fab, I'm definitely going to pinch it as itching is getting worse after each treatment. Does anyone have any good creams that can help as it drives me mad? Thanks, LD x
Mowser
Member

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Thanks so much Bevlaar!!

 

I will ask the docs for a precription tomorrow, you are a star!  Keep warm, hugs

 

Mowser xx

Bevlaar
Member

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Hi Mowser...and to all the other lovely ladies! Well...seems I'm not the only one who can't make the loo in the night! I seem to have become incontinent on chemo! Cant rush coz I am so breathless.

As for the dry mouth I'm the same too with tongue sticking to roof of mouth but when j was in hospital they gave me a miraculous remedy.....its called
A S Saliva Orthana.....artificial saliva.
Sounds repulsive but its just a small spray bottle containing what looks and tastes like water but you just spray a little around your mouth and it works wonders. No bad taste. See if you can get it from your gp. Its on prescription. Xxxxx
Mowser
Member

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Resourceful Bill-Ben!!

 

I have resorted to lots of strategies like that-bringing my breakfast up the night before as I cant drag myself out of bed...Even sometimes the trusted pottie by the bed because I am too tired/feet have hurt too much to get to the loo-my Welsh nan would be proud!!

 

As I was having a wee the other week, squatted over the pottie/bucket with toilet paper in one hand and steadying myself on the bed with the other, I turned to my partner and said 'Who said romance is dead?'  We laughed so much I nearly fell off!!

 

One question to all you ladies-I have terrible dry mouth in the nights. So much so that it feels as though my tongue has swollen and sticks to the sides of my mouth. I have a pint of water by the bed, But it does nothing-the dry mouth returns within minutes. Any suggestions about how you deal with this? It really is quite uncomfortable and disturbs my sleep which is fragile enough at the moment!!

 

Thanks Mowser xxx

bill-ben
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Post code lottery again. I have read on here about tumour markers but the hospital had never mentioned anything about them to me. Last time I saw the onc I queried this. I was told the hospital doesn't use them as they find them unreliable and prefer to use scans which are more reliable. It's just a bit thought prevoking when you read some people are getting this that or whatever and you are not but I suppose we are all different so treatments will vary. I am on bone strengtheners the one that starts with Den something or other (the same as geordiex) I cann't look back to see how to spell it! I get itchy especially at night so have to slap on more moisturiser than I've ever used before. I even keep a spagetti server beside my bed to scratch the unreachable parts!!! 

rosie53
Member

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Morning ladies, yes it has been quiet on this thread, it will be the naughty for us all when Helen gets back from Paris!!!
Porkie, i hope it goes ok for you today, i know it is easy for me to say but try not to worry too much it may be something totally unrelated to the C word...sorry i hate that word so always just use the letter!
Only 4 needles at scan yesterday so not too bad 🙂 just the dreaded 2wk wait now for results!!!
hugs Janette x x
Lynnq
Member

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Hi Jackie, hope all goes okay today. I have been following your post and wonder if it could be anything due to your constipation, hope they get it sorted.
Janette hope they found a vein quickly...last time I had a scan the nurse, bless her couldn't find one so the doctor came in......he told me that it was 'inconvenient' only being able to use one arm.....they were very rushed that day and I could see that he wished he hadn't said it as soon as he did. He got the vein straight away though!
Kenni & Mowser.......when I go for my 3 monthly ONC i see one of 2 oncs, one tells me that TMs are the best way to monitor.......the other says that we shouldn't set much store by them......one day I will be cheeky enough to tell them what the other one says.......
Hope all are as well as can be and that all appts, scans and results are what's hoped for.
Xx
Chocolates
Member

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Oh Porkie, so sorry to hear your latest woes. I hope the scan is ok and they find out what's wrong. It could be non-Cancer related so stay strong. Let us know when you can how you get on.

Morning everyone - yes it has been quiet - general clean up day for me today with some ironing and a bone injection squeezed in to. Hope everyone is ok - Bevlaar - how are you doing? Mavis, Sheila, faraway, spudlab and everyone I've missed how are you all. Helen will be back on tomorrow and she'll want updates otherwise you'll all be on the naughty step!! Be warned.

Huge hugs everyone,
Hxxx
belinda
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Hope all went well yesterday Janette and everything is ok for you today Jackie. Take care. XX
Porkie
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Good morning ladies

Very quiet on this thread kast few days so hope everybody is doing well as can be expected.

I have not been well for last few weeks with swollen abdomen so emergency ultrasound and appointment today. Am really worried - usually take things in my stride but havent been able or feel like eating since Sunday so there is obviously something very wrong. But enough about me - hopefully Helen is having a whale of a time with Micky and best wishes to evetybody else having scans and results in the coming weeks. Jackie xx

rosie53
Member

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Hi Kenni, when i have my denosumab injection the place where they inject is itchy for about a week but i dont get a rash, i do however get mouth ulcers the first week after having it, does anyone else???
Hi to all, im off for my CT scan and TM praying they can find a vein and dont leave feeling like a pin cushion!!!
Good luck to all having scan/treatment or results this week.
Hugs Janette x x
Chocolates
Member

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Evening ladies, just a quick sign in to see how everyone is doing. Helen will be proud of us all whilst she is away. Geordie, I have itchy skin on one forearm. About 6 spots which despite creams etc never quite go away. I'm going to mention it to my onc in feb when I go just in case - my mind wants to say skin mets but I do think it's just the denansomab.

Good luck to all those having scans/treatments/results this week.
Huge hugs,
Hxx
Mowser
Member

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Hang in there Kenni,

 

Even if they need to switch treatments, there are plenty more of them to try.

 

Something will work, and then something else will work after that. It is just about keeping one step ahead of the disease-they are getting quite expert at it. I am in the same boat-waiting to see if my new treatment is doing anything to halt/stabilise the liver and bone mets...

 

You keep the faith and try not to worry,

 

Mowser xxx

geordiex
Member

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does anyone having Denosumab have or had an itchy rash xxx

Kenni
Member

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Hi Mowser
I am completely different from you. My TM is raised but my ct scan show modest shrinkage. My oncologist also don't know why there is contradiction in my TM and scan result. I am on my 5th cycle of Cape and if my TM up again then my oncologist is going to put me on something else. Very worry time for me.

Mowser
Member

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Thanks Lynn q and Belinda.

 

I am going into get blood tests done so he can see TM results when I see him on Tuesday. Thing is, my tumour markers had dropped again slightly the last time I saw him, yet my CT scans showed new lesions and the original liver mets starting to grow again, so I am not confident now in reading into the TM results as I had been before.

 

Even he was a little bemused about why the TM results had dropped,  yet my liver was showing signs of kicking off again-I had pushed for the scans earlier as I had not been feeling great, and I am glad that I did because if he had just relied on the TM results, as he had been doing in between three monthyl CT scans, we would have been none the wiser over Xmas and the New Year and it would have delayed going onto a new treatment.....

 

Mowser xx 

Lynnq
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Hello Hollymeg. I was dx with hiatus hernia about 4 years ago before Cancer Dx. Had reflux symptoms and was put on lansoprazole. I was advised also to raise my bed at the top by putting wooden blocks under the bedhead. Always take a couple of spoonfuls of gaviscon before I go to bed as well.
They told me thst if I took ibrufin to always take it with food snd no more than 400g x 3 daily.
For the past 3 or 4 months my reflux has been a lot worse....and I have suffered from naseau.....GP upped my lansoprazole from one to 2 a day and has also given me domperidone to take 4 times a day for 4 weeks thrn i will see him again. He told me to stop taking ibrufin cos that can cause upset stomach.

He did suggest some painkillers in a patch form to replace ibrufin but I decided to just try the paracetamol alone for 4 weeks and see how I manage. Think I may need a little extra so will discuss the patches next tme I see him, don't feel the need yet to make an earlier appt
Xxx
Lynnq
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Hello Mowser. Zometa are infusions thst I have every 4 weeks. They do the same job as Denosumab. When I first went onto treatment Onc wanted to give me Denosumab but it had only just been approved by NICE so the pharmacy at my hospital were dragging their heels a bit about prescribing it. He gave me the Zometa to get me started on something but said he would change it to Denosumab as soon as it was allowed. Zometa is given intravenously takes about twenty minutes and there's the faff of finding veins etc so Denosumab is easier, tho more expensive - he told me.
Anyway most of the ladies are given Denosumab now......he did mention changing mine, but we both agreed thst since the Letrozole/Zometa combination is working for me we would stick with it. It usually means about one and a half hours at the hosp every 4 weeks, plus the 2 hour round trip but I am retired so don't really mind.
Adcal is a calcium/vitamin D combination ....a supplement - they give me a months supply when I have my Zometa infusion and I take one a day. Don!t know if they only give it out with Zometa but I am sure thst one of our other lovely ladies will be able to tell you......

Forgot to say that after i have my infusion I always have more pain in the areas where my mets are for a couple of days........I limke to believe that it is the Zometa giving the cancer a good kicking.......
Xxx
belinda
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Hi Mowser, hormonal treatment can take three months to show a drop in markers.
Adcal is calcium and Vit D chewy tablets and Zometa is just a different bisphosphonate, bone strengthening, infusion. I think the Denosumab you are on is a newer drug. I do know bone pain can get worse even if it's healing but I don't know about liver. Can you have bloods taken after 4 weeks just to see if Letrozole has kept things in check? Take Care. X
Mowser
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Hi guys,

 

Can you help please? I have mutliple bone and liver mets, bone mets mainly in two places on my spine-where two of my vertebrae are completely replaced by cancer..

 

I had been on Cape for 9 months and four weekly Denosumab injections, but last consult showed progression of liver mets so now have been switched from Cape to Letrozole. Dont know how this is working for me-will find out a week on Tuesday when i go back for my blood tumour marker results. Can you tell me what are Zometa injections and Adcal for? I only have Letrozole and Denosumab? 

 

Also how long did it take for the Letrozole to kick in and start working? I am still getting liver and back pain, so am obviously a bit anxious that the Letrozole is not doing what it should? Can you get pain even when it is working?

 

Mowser xx 

hollymeg
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Hi lynnq I too was diagnosed with hiatus hernia in dec, I had never heard of it. A few weeks before my ct scan I had been to docs with reflux and was given omprezole which really helps. Can we not take ibuprofen with this condition? . I'm glad your mets are under control too. My tumor markets are normal as far as I know anyway. I am on adcal but no bone strengtheners. Thanks for your reply

Lynnq
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Hello Hollymeg. I have bone mets in my upper spine and top few ribs, also in my pelvis and skull. They were discovered soon after initial Dx and I was put on hormone therapy (letrozole) . That was over 2 years ago, my bone mets have remained stable and in some places got better. My tumour markers have fallen at every test but by less now tho still going down and ONC says that this shows that treatment is still working in reducing as well as keeping mets stable. I have Zometa infusions every 4 weeks and also Adcal. Have some aches and pains but paracetamol and ibrufin work well enough for me at the moment.
Tho just been told to stop ibrufin because of reflux and hiatus hernia so may have to find something else...
Hope you keep well on the Examastane. Xx
hollymeg
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Hi can I jump in and ask you girls a question. I've been told I have about 4 hot spots on a bone scan but not yet showing on ct or mri. Due to pain at bottom of spine and the bone scan I'm being treated at early bone Mets and being kept on Examestane which they think is making the mets slow growing. I'm being rescanned in 5 months. I apparently also have several hemangiomas in my spine too. I just wondered if anyone else had similar diagnosis and wondered how long the hormone drugs alone kept working?

JulieD
Community Champion

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Helen, just wanted to add birthday and happy holiday wishes for you before you go, have a fab time!

 

I think the virus might be coming to an end , yipee! Not coughing as much and feeling more human, it's been a nasty one but thankful it's on it's way out.

 

Not much to report on really as not been out of the house since 23rd! Have been reading all your posts though and hoping for a good start to the New Year for us all xx

bertie1
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Hi all hope you,re all doing ,got back home yesterday after a lovely holiday in Tenerife so nice to relax and forget about the C for one week.Now back to normality start my sixth cycle of Cape after three week break Onc gave me so I could enjoy Hols ,ct scan on Monday just hope thigs are stable my last TM count was down to 18 so hoping this shows shrinkage on scan.hope you all had agood xmas it might take me afew days to catch up with everyone's posts.
Helen happy birthday and have afab time in Eurodisney xx
Happy new year to all you lovely ladies
Kaye xxx
stresshead
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Thank you Mowser and Pam 01....you have certainly put my mind at rest. However, i have no idea why the Dr has put this as i certainly cannot do all pre disease activities...indeed finding it hard to function properly on most fronts, can only think he may mean there are no symptoms which are bad enough to prevent me having my next cycle??? xx

LemonDrizzle
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Good morning everyone
Looks like things are getting back to 'normal' for us all now even if that means struggling to sleep.
Happy birthday Helen - have a fab holiday and no sneaking anything or anyone back that you shouldn't!
Bev, fingers crossed that Docetaxel is kinder to you this time.
Chocolates, so annoying that being ill always happens in school holidays - drives me mad.
Enjoy your walk with your dogs and have a fab evening, Mowser.
Hope you can all enjoy what's left of the day and rest as much as you need to.
LD x
pam01
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Morning everyone. Bev good luck with treatment and aftermath! Helen happy birthday...have a great trip......ive taken off my engagement ring nad wedding ring because my hands became sore and itchy esp under rings and I couldnt get to it.....also easier for constant moisturizing!......great for trips to eg eurodisney when you can keep hubby on his toes!!

Chocolates hope your cold resolves over the weekend...a pain when it ruins your hols!!

Best wishes to all....

Mowser
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Morning all,

 

Bev, good luck today take it easy, and get a lot of rest. 🙂

 

Helen have a wonderful holiday-I have never been to Disneyland in Europe or USA-think I may need to plan a trip-it sounds so fun, we are all big kids at heart!

 

Am off to walk my beloved spaniels today for the first time in four days-slap wrists-I hate it when they miss their walks, but I just have not felt up to it with everything else that is going on. They do get the run of the garden when they are not walked, and I at least try to throw the ball for them a bit out there to compensate!

 

Tonight am off to see cats at the London Palladium-an Xmas present for my daughter who has a girl crush on Nicole Scherzinger. My son and partner coming too so am really looking forward to it-its a great musical!

 

To everyone else, have a good day, good luck with your treatments or results, be as pain free as possible, and enjoy as much as you can!

 

Huge hugs

 

Mowser xxxx 

Chocolates
Member

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Morning ladies, signing in for roll call. Looks like the big cat is away for a few days so we can be really naughty!!!! Seriously, Helen have a simply fantastic time and a very happy birthday to you. I hope the weather is ok so you can really enjoy your trip. Looking forward to some mickey magic - sprinkle it all over us please. Gc and dc have come to stay - they're a bit grumpy that you won't take them with you. I've decided an early spring clean here will keep them busy - both have their aprons on!!!! I'll look after them for you so don't worry!!!

Bev - good luck with your treatment today. Look after yourself and just rest. Hello everyone else - hope we are managing - I'm glad the festive season is now over. It's very difficult and emotional - and hiding feelings is hard - didn't want my family to see me upset. So now its back to normality - well whatever that really is but I do feel more comfortable about it.
Good luck to everyone getting treatments results etc this coming week. Back to work for me on Monday - with this terrible cold and cough I don't feel like I've had a true break. It just keeps coming back - everyone has it though so I'm not too worried.

Huge hugs
Hxxxxxx
Porkie
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Happy Birthday Helen and have a great time with Mickey! Very best wishes to everybody else, Jackie xx

Desi-2
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Hope the chemo goes okay Bev and the after effects aren't to bad this time don't forget about anti histamine for the breathlessness xx
Desi-2
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Happy birthday Helen have an amazing time away you deserve it! Xxx
rosie53
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Goo morning ladies.
Helen hope you have fantastic trip to see Mickey and his friends, wishing you a happy birthday too.
Belinda i hope you can get that back pain sorted soon, if your anything like me the pain i can deal with its what it does with my head (imagination) that gets me down more!!
Sorry to read a few of you ladies have had a bad nights sleep i am not a good sleeper usually, but went to bed last night at 10.30 and didnt wake til 8.30....that is unheard of for me not even a trip to the loo it must have been the Lakes air that knocked me out.
Well busy day today taking the crimbo decs down and give the house a good clean, hope you all have a nice relaxing weekend ladies
love and hugs Janette x x x
2catlady
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Thank you Sheila xxxxx I'll bring back some Mickey magic for all xxxx
roxy12
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Helen have a lovely break and a fab birthday! Give us the details when you get back won't you.

 

 

Love Sheila. Xxx 

2catlady
Member

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Good morning lovely ladies,hope we are all doing okay.
Thank you for the birthday wishes.xxxxx

I'll not be posting until Thursday as I like to have a C break when on holiday .

Well,I've packed case which my sister nearly had kittens when she saw it. She said your only going for three nights! I didn't tell her if still got makeup to pack lol. I keep that bit quiet hee hee.

Just a quick question has anybody had sore fingers underneath their wedding rings while on cap. I've had to take my engagement ring and eternity ring off( can't get wedding ring off,but I'm very surreptitious so wouldn't take off anyway.
It's so sore,red and itchy .ive been putting hydrocortisone cream on which is helping a bit. Only started while on cap!

Huge Mickey hugs to everyone,Helen xxxxxx
Bevlaar
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Morning. Early morning roll call for me ladies!
Maxine.. I've been awake hours too since 3am. The dreaded dexamethasone munchies too. My daughter came in at 3am from night shift in police and brought home some of the delicious chicken and chorizo pasta I'd made her to take in....hey presto! In microwave and gone in 3 minutes hehe! Followed by 2 M&S chocolate biscuits and cup of tea.
Watched the recorded Skyfall then drifted off to sleep around 5am. Yes....the lovely Daniel Craig.

Helen...have a happy birthday and a great time in Paris. Bring home a lovely souvenir for yourself!!
Off to chemo at 2pm...3rd docetaxol. So a few duvet days on the cards early part of next week.

Hope you're all well ladies and any test or scan results anyone has prove to be encouraging. My scan is on 9th.
Love bev xxxx