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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

Jultz
All the best for your scan and results ..look forward to you being a stable Mabel too.
Then enjoy xmas ..I've been Xmas shopping in town today so just opening a nice bag of chocolate buttons ..family size of course ..anything smaller would be a insult to Cadburys!!
Hugs xxxc
Carolyn52
Member

Re: Bone mets - please join in

Whoop whoop ..stable Mabel again.
It's a better idea having less denosumab I have mine 6 weekly but with a view to going back to 8/12 weeks later. they say that the first six are the most important and then it's a maintenance dose really.
I still get bone pain for ten days after mine but can put up with it as I'm know I have over four weeks pain free!!
I think u should embrace less bone juice ..some thing less invading the body !
Bet chocolate and wine will b involved later today too.
Hugs xxx
funnyface
Community Champion

Re: Bone mets - please join in

Janette, I can see your glowing face all the way across the big pond!! Now you can plan lots of holiday fun!! FF

julzd
Member

Re: Bone mets - please join in

Great news Janette I get my scan today at 515 so I'm starting to stress about the veins now. Have a good night you can now relax love Julie x x
rosie53
Member

Re: Bone mets - please join in

Hi, Stable Mable checking in! 😆😆😆 finally got home from appt, scan fine "stable", markers 25.  I asked if my mets were sclerotic or lytic and she said they are sclerotic, she asked why I was asking and I said that there had been a discussion on the forum about it, she did say though that it doesn't really make any difference which they are??

Now then, I have one slight worry, she said she wants to change my denosumab to every 8 weeks instead of 4 weekly as I am ok with pain at the moment, does anyone else have them this far apart?? I'm just a bit scared of my pain increasing again however she did say that if that happens she would swap back to 4 weekly again. 

Hugs Janette xxxx 

rosie53
Member

Re: Bone mets - please join in

Yes got hubby by my side! Still waiting, my appt was for 10.15, the waiting is the worst part isn't it!
Janette xxx
redridinghood
Member

Re: Bone mets - please join in

Janette, Hope your wait isn't too long! I find waiting rooms difficult.......can't concentrate. Is there someone with you? Take care & let us know,

 

mo          x

Marirose
Member

Re: Bone mets - please join in

Sending you good cyber vibes Janette (((hugs)))  xxx

rosie53
Member

Re: Bone mets - please join in

Morning ladies, just sat in clinic waiting to see onc for CT results 😯😯hopefully it's not a long wait!
Hope everyone is keeping okay.
Hugs Janette xxx
bonariensis
Member

Re: Bone mets - please join in

Hi Sharon I'm sorry that things are not going so well right now. The hospice will give you the best care whenever you need it and you won't have the stress of constantly having to chase after it. Hope you get sorted and back home soon. Keep in touch, lots of gentle hugs  B xxx

redridinghood
Member

Re: Bone mets - please join in

Sharon, Sending my love too, along with the others, and to say I agree with them that hospices today have such a wide ranging role. They can get people sorted out, and have much more experience and knowledge than docs and hospitals. Hence your referral. When you get a chance let us know what you're up to! We all drop in here regularly and will be wondering how you are.

 

mo                xxxxxxxxx

funnyface
Community Champion

Re: Bone mets - please join in

Sharon, I'm not sure how hospice works there, but I know here you can go to a facility or have it at home. I did hear years ago from one lady over there that hospice had a lot of nice programs like art classes. I hope hospice can get you sorted and maybe you can enjoy some of their complimentary services. Tons of hugs! FF

julzd
Member

Re: Bone mets - please join in

Sharon thinking of you hope you get sorted and back home soon sending positive vibes and hugs julie x x x
JulieD
Community Champion

Re: Bone mets - please join in

Sharon, I  just wanted to add my love to the others. Sorry you are struggling and you are probably a little worried about the hospice but I  know lots of women who have gone in for a few days and the hospice has got them back on track, meds sorted and back home. Sending you positive energy and strength xx

 

racer
Member

Re: Bone mets - please join in

Hi Sharon sending hugs and positive thoughts xxx

rosie53
Member

Re: Bone mets - please join in

Hi Sharon, thank you for keeping us dated. Thinking of you and holding your hand.
Sending you a huge cyber hug (((((())))))
Janette xxxxxx
Moijan
Member

Re: Bone mets - please join in

Hi lovely Sharon,

 

yes, the hospices are excellent..often better at sorting out pain relief and other bits, than the hospital.and they are good at listening!

 

thank you for getting back to us, we all check in daily to see how things are going.please keep us posted. Much Love,xxx

 

Moijan 💜💝💜💜💝💜

Marirose
Member

Re: Bone mets - please join in

Dear Sharon

I can only say I agree with Carolyn she has put it so nicley. So many have found the hospices so helpful at least they have your interest at heart.

 

Sending loads of cyber ((((((((((((((hugs)))))))))))))) and love xxx

Carolyn52
Member

Re: Bone mets - please join in

Hiya Sharon.
It's good to hear from you but sorry that you are struggling. The hospice will help and I'm sure you will be in safe hands for the very best care .
Please keep in touch with us as we love to hear from you ...we are all holding hands for you and sending big hugs and cyber cuddles .
Xxx💜💜💜
scratch
Member

Re: Bone mets - please join in

Hi all things aren't too good ..got myself an appt at hosp today .theyre putting me in hospice for a few days to try to help me..im sad but feel like Il be in good hands.x❤ sharon
Bernie610
Member

Re: Bone mets - please join in

Thank you all! I'm not currently having chemo, I was just worried re the massage with it being in my bones and your right I had complimentary therapy at the hospital during chemo xxx
JulieD
Community Champion

Re: Bone mets - please join in

Hi Bernie,

I  agree with Carolyn. I can't see a problem. As Carolyn says keep an eye for breaks in skin etc and ensure you use TCP Savon or similar if necessary. As for the massage I think that as it's your legs it should be ok, sometimes we're advised not to have massage on our operated side but thats upper body so....enjoy! xx

Carolyn52
Member

Re: Bone mets - please join in

Ps ...on the subject of night time tinkles ..I didn't do the wine last night but had my usual small glass of tonic water and did seven tinkle free hours !! didn't sleep well though but at least stayed in bed !!
Think I will do the A to Z tonight of chocolate names ..by the time I get to c wi'll probably have to get out for some munchies !!
Carolyn xx
Carolyn52
Member

Re: Bone mets - please join in

Hiya Bernie
I'm no medical expert but that doesn't sound a problem ..you get massages as part of the alternative therapy at some hospitals ..just b careful that they don't break the skin when u get the pedicure if you are having chemo though ..infection etc.
Enjoy some pampering and relax.
Carolyn xxx
Bernie610
Member

Re: Bone mets - please join in

Hi ladies thank you for all the support and advice. CT scan tomorrow 🙀. Can I just ask if you know if I am ok to have a pedicure that includes a massage to my lower legs? x
Moijan
Member

Re: Bone mets - please join in

Yes Sharon, how is it going? Hopefully you have been doing some lovely things and that is why we havent heard from you? We are all thinking about you and batting your corner.

 

Moijanxx

Moijan
Member

Re: Bone mets - please join in

Hi Bonariensis, sorry to burst your friends bubble...am sure she felt very comforted thinking that, but alcohol is a diuretic! i love alcohol, but....as I keep getting ? Uti's I am avoiding alcohol as it and caffiene irritate the bladder, as well as being diuretics.

 

as for not drinking after 6 pm, that may hold some merit, but on chemo I have to keep my fluids up, so im always drinking water etc, late in the day.

 

oh, and one more tip ladies..look this up if you dont believe me....the brain shrinks, so we need water to ensure it doesnt shrink too much..can feel dizzy etc.  when im bell ringing, I drink extra water to give my chemo brain a chance to function better.

 

spect ive P'd you all off now😦

 

moijanxxx

Carolyn52
Member

Re: Bone mets - please join in

Hiya Sharon
How r u ..we are all thinking of you and hoping you are getting a bit stronger .
I think the nurse told me that they had changed the flu jab ingredients this year ..asked me if I was allergic to eggs???? Which I thought was a strange question but to be honest ..I've had no problems and if anyone is going to get se of anything its usually me !!!
Like the wine idea though ...bonariensis ..anything to stop the three hourly tinkles during the night!!
bonariensis
Member

Re: Bone mets - please join in

Hi all  I was told by a friend who said she had a glass of wine at lunchtime if she'd got meetings all afternoon that  having a glass of wine STOPPED you peeing so much and my experience has been (although it might just be wishful thinking) that this might be true. xx

rosie53
Member

Re: Bone mets - please join in

Evening ladies, I'm also a night time pidller!! And I don't drink after 6 either, it drives me potty! 

 I'm jumping on the flu jab wagon, not with the trots though, I'm starting with ANOTHER cold, I've not been right since I had it done around 5 weeks ago. I've had tons of vitamin C today and have started taking echinacea too. It's my birthday next week and we are off to the Lake District at the weekend, if this cold hasn't gone I'll be sooooo mad! 😡😡😡

Hope your all okay. Sending a shout out to Sharon  (((())))

Hugs Janette xxxx 

Carolyn52
Member

Re: Bone mets - please join in

Good advice Stress head
Hic ..larger glass of red wine tonight then.
Warning :
Any new ladies reading the thread ...please do not take my new health regime seriously ..I'm a complete idiot !!
Xxxx
stresshead
Member

Re: Bone mets - please join in

Carolyn, if not drinking after 6pm doesnt help with the nightime visits you may as well have another glass of wine.....and a bit more chocolate. I love your new healthy regime!! x

Carolyn52
Member

Re: Bone mets - please join in

Oh Stacey .
Poor you ..don't know the medical reason why we need to wee so much in the night.I don't drink anything after 6pm ..yet still have to get out ..sure I have a second secret bladder tucked away to keep me awake !!!
Carolyn xxx
Stacey
Member

Re: Bone mets - please join in

It's BANG BANG in my neighborhood until at least a week after New Year.   Hate it.  Thankfully neither of my two dogs are afraid.  One does not like them but tolerates the noise. The other barks like a madman (maddog?) at every loud bang.  

 

Tired all the time now because the Anastrazole makes me get up at least six or seven times a night to wee.  If I didn't I'd literally wet the bed ... not very nice.  Letrozole did it to me too ... but with the added SE of heart palpitations.  I'll just have to live with it ... but combined with getting up to wee and my dog barking at ever blast I'm not likely to get much sleep until mid January!

Carolyn52
Member

Re: Bone mets - please join in

Only bought Kojak lollipops as I don't like them !! Why so many fireworks though ? The weekend here has been bang bang and my son's poor dog almost jumped out of his fur every time . Hate them ..it's a man thing isn't it ??
julzd
Member

Re: Bone mets - please join in

Hiya my stomach is ok today been eating all the trick or treat sweets the kids better hurry up and get them haha. Hope your hubby is ok Carolyn have a good night tonight no doubt my the dog will be going wild with knocks on the door. Thanks moijan hope your ok love Julie x x x
Carolyn52
Member

Re: Bone mets - please join in

Jultz
Hope your tum is better today ..hubbys is even after sprouts and parsnips with his roast yesterday ..it could well have been the flu jab !!
Well I'm all healthy today with my 2pm choc .had choc raisins so surely they count as at least two of my five a day ??
And my evening pizza is a Hawaiin so the pineapple is another of my five a day.
My glass of red wine ..with grapes ..surely makes up my five today ?? impressed or what with the new healthy me...haha .
Carolyn xxxx
Moijan
Member

Re: Bone mets - please join in

Oh Jultz sorry about the tum. i must admit the flu jab makes me feel ill when ive had it, so I dont tend to bother,

 

scrambled eggs, stewed apple can help with diarhoea.  (I would avoid chocolate)I do hope you feel better soonxx

 

love Moijanxx

julzd
Member

Re: Bone mets - please join in

Hi Carolyn I had my flu jab last week I've had an upset stomach too today has been my best day I've also been loaded with cold I think it was the flu jab but I know there are a few sickness bugs going around x x
Suskak33
Member

Re: Bone mets - please join in

The Bone man is an athopedic surgeon and has full details of my scan - yikes!
racer
Member

Re: Bone mets - please join in

I must admit we bought one tub of sweets and we have eaten them so had to buy more . Fireworks have started in our area. I am hoping to go out with my youngest tomorrow night if I am up to it. It will keep him happy .
Watching GP race and settling to watch Poldark later. My guilty pleasure lol xx

Carolyn52
Member

Re: Bone mets - please join in

Hello racer
Yes I did a bit of online shopping yesterday too ..Xmas is a good distraction from hosp and scans etc.
Well this Halloween lark seems to b going on for days ...got lollipops ready for treat or trickers ..yum hope they don't call and then I can have them myself !! always buy things I don't like though as it would break my heart to part with choc.!!
racer
Member

Re: Bone mets - please join in

Thanks everyone xxxx Hubby is worrying especially if I feel tired . My youngest had us up in the night with a tummy bug so been disinfecting everything . Ordered my Christmas groceries and going to do some Christmas shopping to distract me. Will order
some things online and try not to go into overdrive lol!
Sounds a good idea with the chocolate Swiss roll . I seem to be craving sweet things at mo and stopped slimming world until I know what is happening xxx

Barton
Member

Re: Bone mets - please join in

Carolyn, sorry to read hubby is bad again - he's being put through the mill lately! Hope he is better soon.

 

Hugs. Barton.x

Barton
Member

Re: Bone mets - please join in

Yes, bonariensis, the CT scan appointment arrived in the post yesterday. If it hadn't come I was going to ring my Oncs secretary on Monday. As it happens, I will still ring her to ask for a copy of the report from my last Onc appointment. She is supposed to send me a copy every time, but she usually forgets. It's so annoying as I have to ring each time. The CT scan is for Friday, 11th Nov, so still some time, but it means I will have to wait ages for thevresults again, I expect.

 

Re.the fire - will check out Arty Stuff thread!

 

Hugs. Barton.x

Carolyn52
Member

Re: Bone mets - please join in

Good morning ladies
This day seems endless as sons dog didnt understand the clocks changing so I was up at silly o clock.
Hubby has the trots ..blaming the flu injection and I'm worried about my water bill for the amount of time he has flushed the loo!
In fine but on my 2nd chocolate swiss roll already with the coffee.....oink oink .
Xxx
bonariensis
Member

Re: Bone mets - please join in

Hi Racer Waiting seems to be a big part of all of this whether at the clinic or for results. How can i say try not to worry. All i can say is distract yourself with as many good things as you can and take each day, each hour at a time. B xx

bonariensis
Member

Re: Bone mets - please join in

Barton Have you got a scan appt yet? I wanted to continue the architectural thread but have done so on 'arty stuff'

Moijan
Member

Re: Bone mets - please join in

Hi Racer, you poor thing. I hope everything works out.

 

sounds as if you are very brave too, my word!

 

yes i think honesty with the kids is best, they can cope with it generally.

 

lots of love

 

Moijanxx

racer
Member

Re: Bone mets - please join in

Hi everyone, just to update you I went for bone marrow assessment yesterday. We had to wait a while and I was getting nervous . Had not been told after an hour that they were running an hour and a half on top of that . Just so busy and terrible to see how many unwell people there are at the clinic.
I had both tests and it was a bit uncomfortable when taking samples but said I did well. I was just thinking about the other people waiting and to get it done quickly . One of my tests they could not withdraw any fluid and said should have results in two weeks . Heamotology were concerned about my platelets as they had been 50 and should have been 150 prior to transfusion . Will need a top up with blood . Feeling tired today and a little sore . Just trying to rest. Trying not to worry and taking a day at a time .

Since I was diagnosed in 2010 we have always been straight with our three children who are now 16,13 and 8 . The youngest was very unwelll when he was a baby and we were always advised to be straight but obviously putting it in words that they could understand . It has meant that they are supportive and advised their Schools so they can have support from friends etc . Hope this helps .
Kids want to go and get Halloween costume so hoping I can put my feet up for Strictly later . Have a good weekend everyone xxx