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Bone mets - please join in

Jam
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Re: Bone mets - please join in

Thanks Ruth that's so encouraging for me and my family as I have been having Zometa for 2 years. Only in my bones too. Fingers crossed for the future for us all. Love and hugs to everyone x Janet x
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Hi Lynn. Just to say that after being on Zometa monthly and then six weekly for five and a half years I have now been on infusions every 12 weeks for almost a year now. So far so good. I just have to trust my onc that this is the new regime now and has been proven to be as effective as more regular infusions. Touch wood but so far no progression, in bones only, on this. Love Ruth x
Jam
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Hi Lynnq fingers crossed for you too. Onc only suggested 6 or 8 weeks I think he understands the anxiety we feel and 3 months would be quite a big step to take. It's perhaps worth asking next appt I'm just pleased I got to see the consultant Onc this time. xx
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Hi Jam, pleased to hear about your scan result being still stable, such a relief for you..

I Had a bone scan a week ago today, both my onc and bcn are on holiday but they promised me that one of the other bcn would ring me on Wednesday with results....fingers crossed....

Ref Zometa. Some time ago - about nine months - one of the Oncs that I Saw suggested that i go onto 3 monthly Zometa, i usually have it every 4 weeks.
I mentioned it on here and one of the ladies told me that some research and trials had taken place at the American College of Oncologists and they had found that after a while.....a year i think....it could be decreased to every 3 month and would still work well
However I am still on 4 x weekly because I have not had a further appointment with that particular onc., and none of the other oncs have mentioned it....think I Have had 3 appts with two different oncs since then. If it is suggested I wouldn't really mind because it is a two hour round trip to the hosp.....would prefer maybe 6 or 8 weeks tho.....3 months seems a long gap...

Xx
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Hi Janet, thats great news, like me you can relax for 3 months again now :-) can't advice on zometa as i have denosumab.
Hi lovely ladies, hope everyone is doing ok.
Hugs Janette x x
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Great news , enjoy xxxx Marie

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Janet, I've always had it every 6 weeks so I wonder if it's what oncs think or hospital procedures that makes it so different for us all. I'm treated at Christies so I wonder if 6 weeks is standard there. Fab news about being stable.
LD x
Jam
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Hi Everyone just want to share my good news with you all have just been for Onc appointment and am still stable. Saw consultant Onc today which was a nice surprise he is changing zometa to every 6 weeks as trials have been done and he says when we have been on zometa for a while 6 to 8 weeks is just as effective. So starting me on 6 weeks for now. Has anyone else been informed about this. Love and hugs to you all especially those of you struggling at the moment xxJanetxx
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Well that's not what I've called the little munchkins this weekend! Theyve just been picked up to return home but I'm assuming that's Chocolates' home, not Marie's? They are clean, well fed, wearing new clothes and very happy after a lovely weekend enjoying the fresh air and sunshine. Whoever gets the honour of looking after them next weekend, don't expect much sleep and be prepared to play silly games and sing silly songs at ungodly hours as they really love those things the most. They also enjoyed a tiny bit of Prosecco and lemon drizzle cake too, so make sure you have both ready as it does help them to sleep! I'm off for a well deserved rest now and then going out for something to eat after my hectic few days.
Hope everyone's managed to have a good weekend and, like everyone else, my thoughts are with those who are finding it tough at the moment.
Have a good evening, love to all
LD x
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They have been named: Billy, Willy Dilly and Silly
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Hello lovely ladies, first things first. I was told by my onc  and neuro surgeon that physio wouldn't help me. I get on with both of them and do respect what they say. Howvever , my cognitive therapy nurse suggested I have some. Met a really good physio who understood what I was saying. I have had a couple of sesssions with some exercises to do at home. It's worked for me, less pain and feel I'm getting more strength back in my arm . If it's all in my head the improvement , I don't care as I feel I'm doing something positive. Marie xxx

 

Feel I must talk to some of you. Congratulations to Lynnq, Nicky and Pippie great ironing Ross was very pleased with his frilly blouse, sorry shirt.

Chocolates you are so funny, as if I would send the quads out in dirty nappies. Thank you for nominating Ross and I for the Daily Mail parents of the year.

Belinda , Ross says thank you for the firelighters.

Lemon Drizzle thank you for looking after the qiads. How's your voice after the nursery rhyme singing at 2 this morning?

Helen , stop listening to idle gossip, Ross was not happy with the washing, too much chatting .

 

The weekend was wonderful. We sat and watched the sunrise, Ross stroked my hair and looked deep into my eyes. He told me he loved ME very much.

Now back and keep wanting to have some honey, strange because I don't like homey. I also want to eat coal, very odd. I will keep you posted. Marie xxx

 

PS hugs to all , in my prayers , good luck for treatment scansa ne results M

 

 

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Well I'm pleased that Ross has been kicked by his horse, the razor sharp creases in his embellishments clearly weren't enough to cool his ardour. Marie, the flippertigibbet (is that a word?)may have given him quads but she hasn't even got around to naming them....so I have taken on the duty. Of course they are named after their handsome father, so the boy is Rosco, and the three girls, Rosalind, Rosanna and Rosemarie. I suppose one named after that hussy is allowed, she might even make them some new aprons. What's with the aprons, I missed that bit of the story!!!
Good luck for next week everyone, I'm having scans on Tuesday, my dear late Mums birthday, results week after xxxx
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Good afternoon lovely ladies,
Ouch,Belinda,that sounds awful. I read putting a very dark nail varnish on helps but it may be a bit late now. I've sent a question to the nurse on bcc before. It may be worth a try . I found it was very helpful to be able to ask a nurse a question.xxxx

Chocolate,We have tried talking to Marie about the quads but she won't listen . Mind she couldn't answer either as she was stuffing cream teas in. She was onto her 7th scone!!! 🍩🍰🍪!!

I've set my record button for programmes ,Belinda,thanks. I hear they are about a dreadful mother who abandoned her quads to run off with a man on a horse?!🐎

Oh,breaking news!! Apparently Ross has been kicked by his horse ( horse was so fed up of carrying him and a women who wouldn't stop eating cream teas. She was getting very heavy to carry) apparently wherever it kicked him have swollen up like two footballs !! ⚽️⚽️ 🐴
I think rolling around in the hay may be put on hold !!

Oh,I can't wait to get our own pin and I will be proudly wearing mine. So come on bcc.

Sheila xxxxx Chris xxxxxx

Huge hugs to everyone,Helen xxxxxxxx

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Hi  ladies, just got back from Bowness went yesterday morning just on spec as the weather was meant to be nice and boy was it lovely up there, we were sat outside a wine bar drinking preseco in just a tee shirt then went for a lovely walk, the hotel we stay in is fab, the lady that runs it  bakes cakes and cookies and leaves them in your room for you and in the reception to just take when you fancy a treat :-) oh and they are scummy. Had a lovely time just what the doctor ordered.

Hope you are all keeping well and enjoying the weather 

Hugs Janette xxxxxxx 

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Afternoon ladies, hope weekend has not been too bad. Yesterday was lovely but chilly here today - have snuck the heating on for a while. Hubby not noticed yet!! Yes I'm also thinking of our Sheila and chris - both of them are continually on my radar and I send them strength and positive vibes at what is obviously difficult times.
Not so busy for me this week thank goodness. Looking forward to a fairly normal week but of course the quads will be back before I know it and if that woman turns up with child again I shall wash my hands of them all. Helen, it's over to you to sort this out with marie and have a word. Belinda has said she is willing to go with you but you have to do the talking. So ladies, please sort it all out - I want it resolved by tonight. If needs be I've looked on eBay and there are chastity belts available which might be our only option. Let me know if you want me to get one for marie. As if we haven't enough to cope with without all this extra stress.

I hope everyone has managed to do the survey bcc has put up - it doesn't take long at all. Also the pin badge decision - it's our chance to get what we would like and I'm really pleased they are consulting us rather than just doing. I look forward to buying loads of ribbons with black edging and wearing them with pride.

Right I must go and prepare myself for the return of the quads. However, I know that LD will have looked after them really well so at least they won't arrive in dirty clothing with dirty nappies for a change.

Huge hugs everyone,
Hxxx
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Oh that makes sense FF :-) thank you...yes tender is how they feel..I can still knit though so that's great. X
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Bel, When my finger nails got yucky, I only covered them when they were oozing and I was out and about. I thought they needed air. They got very tender. Hubby did most of the dishes! I then came off that chemo and they healed. I don't know what would have happened if I was on it longer. I suppose I would have lost them. It never effected my toe nails. FF

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Hi Tournesol.....have you tried Eurotunnel. Don't know what your circumstances are but they offer worldwide travel insurance, no medical questions, but you must be under 70 and your GP must say and put on your medical records that - when you took out the insurance - you were fit to travel.

One of the ladies in my SBCC support group had to cancel and she had to pay £30 excess and also £30 for a letter from her GP..but that is all...everything else she'd paid was refunded..
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Morning all, :-) yes I too have been hoping Chris is having some good days with her family and I'm hoping Sheila is now home again from hospital. XX

I have a trivial question about chemo nails, my nails are 50 shades of grey at the moment, weekly Paclitaxel, one is lifting slightly, a bit ouch. Can anyone offer any advice, to put plaster on or not to tape down? No oozing or anything....yet. :-)
Helen I'm not so sure re Marie NOT being in the family way again. There are rumours! I spent my Saturday evening with my lager and a few pkts of salt and vinegar at Ye Olde Sea Dog. Ted behind the bar tells me there's an "exclusive" Jeremy Kyle next week, plus talk of Sky reality show. :-/
X
Glo
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I have used Fogg Travel 3 times this winter for ski insurance at very good rates. They charged me £15 above the normal premium with an increase in the excess of £170 if used for anything related to the cancer. I'm sure cancellation was included but like you I don't take it out until a few days before I go. At the time I had lung Mets and 1 liver met and was on e/e.
Also try insurancewith.
Not sure what the situation would be now with 2 liver mets, slight pleura effusion and on capecitabine! Will found out in due course I suppose!!
Good luck Glo xx

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Hi all,

Just thinking about holidays and having to cancel, has anybody found a travel insurance provider who will offer cancellation cover? I haven't been able to get it recently (even buying the insurance a day or two before departure!).

Hope you are having a good weekend so far. It's sunny (albeit a bit chilly) and I'm off for a walk.

Tournesol x

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Good morning lovely ladies.
I haven't got any contact details for Sheila. I'll give her a shout SHEEEEILAAAA! Are you there? Hopefully she heard that.
Shiela if you are reading we are all thinking of you.xxxxx

I hope Chris is comfortable ,she is in our thoughts and we all send her love xxxx

Bev,I hope you are packing as YOU ARE going on holiday xxxxx

Janette,wow,it's so close! But you need to watch out you may be on babysitting duty that week.you may have to pack them in you luggage!!xxxxxxx

Now,Marie,we need to have serious words. You can't just go passing your quads around. And I'll know what I'll be ironing of Ross' and giving it a sharp crease if washing comes my way!! Well it will stop more babies.!!

Chocolate,I must say the quads look adorable in matching aprons. I will send all the hubbies along to give you a break,they will do housework,massages what ever your heart desires!! Aprons are at the ready. Mind Bear insisted on bringing you some edible creatures,but I've persuade him to bring chocolates and wine.( I'll not mention what he was going to bring you to drink,any one who watched the survivors program !!!) xxxxxxx
Huge sunny hugs to all the wonderful ladies on here, Helen xxxxxxxxxx

Ps Belinda ,I'm sure duel can go ahead now that Marie is not in the family way?! Xxxxx
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Ah Bev hold the thought of a holiday at sometime, if not the one you planned another time, never rule it out. Be kind to yourself, WBR and chemo, blooming tough stuff.x
Not long until your holiday Janette, have a good time.x
Now ladies I have sent Mr Ross some "literature" in the post....whisper..having THE operation...no more babies assured. I don't know if he will shred my "literature" with his teeth and flounce but I tried.
Have a good weekend all, I'm enjoying the whoo lovely steroids I can do anything day of my cycle. :-) x
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Hi Janette, you go and enjoy yourself, you deserve it and what a great celebration. I know that it does happen that at some times someone has good news at the same time as someone has not so good news but that is what this disease throws at us. I have had to cancel many a holiday particularly over the last 2 to 3 years but I make sure I plan another and I cross my fingers that I get to go on it.
Back onto the quads though, I do have worrying news of a 'sign' for poor chocolates. I was doing the codeword puzzle in my newspaper yesterday and successfully completed 'quad' as one of the words when, what should happen but the word 'twins' also came up as I completed it. It's a sign, I'm sure it's a sign, so watch out for Master Ross, Marie, he's out to get you with child again ;-)
Have a good weekend everyone and, Bev, I do hope the fatigue and tiredness isn't too bad, especially with the SEs of the chemo to deal with as well - you are going through a lot right now but I hope that your next holiday is just around the corner.
Take care
Nicky x

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Hi funnyface, I go to New York 28th May, I can't wait I love the place this will be my 4th time :-) usually go November time when it's all chritsmasy but have been wanting to see it in a different season so chose this date as it will be our 10th wedding anniversary and my hubby's bithday and it shouldn't be too hot and muggy then.

Morning ladies, hope you all have a lovely weekend the sun is shining although it seems a little chilly in that breeze......A perfect washing day :-) please feel free to bag it up and send it round to mine ladies.

Hugs Janette xxxxxxx 

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Janette, When is your holiday? I live west of Philadelphia...so will be waving to you in New York. Funnyface

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Well Marie, I didn't see that coming at all - not in my dreams or nightmares! Considering I've already mentioned Social Services perhaps my name would have been better not being in that hat, but seeing as they've been left on my doorstep I'm more than willing to have them for the weekend. Not to help you of course, but for Chocolates' sanity. That Saint has been working all week, looking after her own family and is still expected to babysit those munchkins of yours. I've msde sure they're clean and fed and have just got them to sleep, but it was mighty hard. Hoping they sleep through the night or else me and hubby won't be in any state to look after them tomorrow and I wouldn't like to admit defeat so soon. I see you're off gallivanting again Marie, please take heed of Chocolates' warning about being with child again upon your return. Well everyone I'm off to bed. Tomorrow's meant to be a nice day so I'm hoping to get lots more washing blowing on the line.
LD x
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Good evening ladies, thank goodness the week is over. Jenette, so pleased with your fab news. Always appreciate those kind of postings and hope you have a really good weekend xxx
Bevlaar - good to see you posting. Your holiday is still up for grabs - it's about how you feel and respond in the next few weeks. No onc can say how you will feel so try if you can to rest up and gather your strength. You can do it Bev and we will be with you every step of the way. Take a day at a time xxx
Sheila, if you're reading the thread we are all thinking of you and wishing you stronger. Looking forward to having you back soon. Out of interest does any one have contact details for Sheila? Xx
I'm sure I've missed people out and you lot are so busy in the week it's hard to keep up so huge hugs to everyone.

Well apart from juggling the quads - thank you LD - I e been at work and hosted the bcc question time event locally this week. Mine was all secondary and it went really well. Was very nervous but the team were fab, I would do it again. Has anyone else managed to get to one?

Looking forward to catching up over the weekend and of course a quiet one without the squabbling, screaming and nappies. It's been tough - and I see that woman is off again this weekend. She's got a cheek. If she comes back and is pregnant again - well I'll be moderated if I say what I really think.

Right then - have a good weekend. I'm looking forward to it.

Hxxxx
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Hello lovely ladies, I hope you have all had some sun this week, it makes such a difference.

 

THE ERROR Of MY WAYS

I have been considering the quads upbringing and can now see that I have not been fair to Chocolates. I am sorry. To make up for this I have put all your names in a hat, Congratulations Lemon Drizzle you have won the quads for the weekend. That noise outside is Ross securing the horses. Babies on your doorstep. Good luck.

 

Ladies be afraid , be very afraiid sorry be excited be very excited next week it could be you.

 

Have now added everyone's name to the washing rota, please remember when ironing , Ross likes a crisp crease.

 

Away for the weekend so will catch on Sunday. Hope you all have a good weekend. LD please open the door!

 

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Bev lovely to see you posting and dont give up on the holiday - you may still make it. Janette - so pleased with your news - enjoy yourself now.xx

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You still might get there ,the Onc didn't say no so wait and see how you are take care Bev xx
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Bev, so sorry about the holiday, it's a hiccup. Take care Marie xxx
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Bev..just adding my thoughts to everyone elses. Stillhere you are so right!!.x
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Great news Janette!!

Love and best wishes to all those with appointments, scans results.x

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Janette,I used to put some emla cream ( the stuff that numbs ) on my tummy before I had my zolodex. One nurse at GP was great and no pain as she used to work on oncology ward and the other one I used to nearly jump off the bed as sooooo painful!So hence the cream.
Hugs,Helen xxxxxxx
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Bev, I'm sorry to hear of your disappointment re:  your holiday, he didn't say no to it so try not to be too down.....feel bad now having posted how much I was looking forward to New York!! I understand how you are feeling I was convinced I wouldn't be able to away but I can and you will too.

Hope everyone is okay,  just been for my zoladex and boy has the doc made a mess, got a lovely bruise, sometimes there's hardly a mark and other times its a mess prob depends how it hits the muscle.

Take care hugs Janette xxxx 

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Bev,huge hugs. It's not your last holiday so get that out of your mind now or you're on naughty step.angry eyes on now👀

Oncs never commit to anything ,there are treatments that are very good and ladies thriving with brain mets!
You will get to your holiday in June ,it's still a long way off.
Huge hugs xxxxxx Helen xxxxxxx
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Hugs Bev, that must be a huge disappointment for you. This ****disease is such a roller coaster, we are sad, happy, anxious, relieved all at once. Perhaps your Oncs are just wanting to wait and see, rather than No to your holiday?? Thinking of you as well as being happy for Janette xxx
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Im not doing too badly thanks Nicky just lot of fatigue. Im just so disappointed that I'm not going to be able to go on my holiday to greece with the family in june. Was so looking fwd to it and lets face it....realistically we could have been looking at my last holiday :-(
I touched on the subject in Oncs office and noone said anything....just lowered their eyes .....i hate this ****disease. Its spoiled so much for me and the family. X
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Janette,get that case packed and look forward to your holiday xxxxxx huge hugs Helen xxxxxxxxxx
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Morning ladies,

Thank you all for your best wishes, feel like i can finally start looking forward  to New York now....yippee!!!! Had a good chat with her and she explained that just because I have more pain sometimes doesn't always mean that things are progressing it's just my "C" playing up that day!!!

Well off for my zoladex and denosumab this morning, have a lovely day ladies.

Hugs Janette xxxxxxx 

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That's great news Janette, now stop worrying for a bit and get on and enjoy things :-) I make sure I do, every time I've had a stable result I get on with life - until the next spell of scanxiety starts, normally 3 months after the last one!
How are you doing Bev after the rads have finished? I hope you and Sheila are doing OK but I understand that you can feel very tired from the after effects.
Hi to everyone else, hope you are doing OK and still enjoying the sunshine even it's a lot chillier.
Nicky x

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FANTASTIC news,Janette xxxxxxxxxx
Massive hugs,you go girl, Helen xxxxxxxxxxxxxxxxxxx
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So pleased for you Janette xx
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Great news Janette xx
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Yay good news Janette. :-) x
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Great news Janette! xx

 

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That's great Janette, you must feel so relieved. Time for a celebration now x
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Yippee, great news. The quads are cheering xxx Marie
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Hi ladies, hope you are all okay, well I needent have worried, both my scans were stable :-) sooo relieved!!

Hugs to all Janette xxxxxxx