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Bone mets - please join in

2catlady
Member

Re: Bone mets - please join in

Hi,Sheila,so glad you home and on the "mend". Zometa can make you VERY achey first and sometimes second time( I felt as if I was being burnt alive ! Every bone/muscle hurt) but nothing after first shot.
Your onc will be so impressed with you on Tuesday 😉
Huge hugs,Helen xxxxxxxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi Sheila, I've been reading your updates and you've certainly been through a few rough times recently. Hopefully the zometa will kick in to help with the calcium levels, you don't need any more stays in the hospital however nice everyone can be!
Enjoy your time at home and hope you get some extra (good) answers when you see your oncologist on Tuesday.
Nicky x

roxy12
Member

Re: Bone mets - please join in

Hi everyone,

Well, Another night in hospital!! Had bloods done Thursday just to make sure things were still going the right way. ( only had them done Tue before chemo) but registrar must have been being cautious.. Well got phone call at 5_30pm Fri to say I needed admitting to local hospital as calcium was rising again. I thought I was drinking plenty but not enough obviously. I had bloods done again twice! Will have to get a line put in! Calcium now down again and consultant said that my bones showed to be improving significantly! 😀 

Home sat morning and drank and drank till I couldn't drink anymore! Water mostly. Gone off wine anyway. 

Feel much better and everyone says I sound more like my old self. Still a lot of back pain though.  I started on zometa last Tue when I had chemo. Will that have anything to do with it?

My see the onc on Tue after his holiday so I will  get a good update, not that his registrar hasn't been great.

 

Chocolates, can't wait to hear which car you choose! Get something that makes you smile every time you look at it!

 

Helen, good luck with the cap. I think you will do well on it. Remember we all have to just keep going as there will be other new treatments out soon.

 

Bev, I have not read all the posts as not well enough until today and this thread is so busy but hope you find a little hideaway where you can toddle off to whenever you want.

 

Good wishes to everybody. Take care. Love Sheila. Xx

rosie53
Member

Re: Bone mets - please join in

Thanks ladies, hey chocolates i kept my oh up half the night too but like you say it makes a change from him keeping me up with his snoring 🙂 we have a spare room so i kicked him out of bed at 3 so i could sprawl all over the bed!!
Thanks Janet will have a look at that link later.
Janette x x
Jam
Member

Re: Bone mets - please join in

Hi Janette go onto www.chillow.co.uk and look at the items on there. I have found them great for cooling when hot and especially at the inferno stage. Janet x
Chocolates
Member

Re: Bone mets - please join in

Morning ladies - Janette - same here. What I'd give for a natural good nights sleep. Helen don't fancy more needles, so that ones out. Not so keen on tablet taking so I suppose it's just grin and bear it. I can't wait for winter - it was really hot here last night. Hubby also bleary eyed this morning as my tossing and turning kept him awake - opps! Makes a change from his snoring. Anyway after a rather long ramble I'm sorry but no idea how to stop them. Someone must have the magic formula.

Have a good day - it's Sunday already - where did the weekend go? xxxx
2catlady
Member

Re: Bone mets - please join in

Good morning everyone.
Hope we are all okay.
Janette ,I know what you mean ,when I was put into early menopause last year they were awful.i permanently sleep with a fan on. I have a can of cold spray next to bed too. My poor hubby froze in the winter as heating was never on and I slept with windows wide open and fan on (cheap heating bills lol) I still sleep with broken sleep every night because of then. Acupuncture is supposed to be good for them,but I never fancied more needles being stuck into me. Some ladies are on mild anti depressants to stop them!?
Hope you get some sleep soon,huge hugs,Helen xxxx
rosie53
Member

Re: Bone mets - please join in

Morning ladies, any tips to combat night sweats??? Omg...they are horrible one minute i am i soo hot the next i'm freezing!! Just had another sleepless night due to them 😞
love an hugs a very tired Janette x x
Chocolates
Member

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Fantastic Bev, I don't think I'll qualify as I earn too much. Will wait and see though - you never know!!
rosie53
Member

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Yey Bev thats fantastic!!! Really pleased for you
Love Janette x x
2catlady
Member

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You go girl,that's fantastic news,yippee! Crack a bottle open.
Huge hugs,Helen xxxxx
Bevlaar
Member

Re: Bone mets - please join in

Helen, chocolates janette.....I had the award letter in the post today from HRMC. Theyve awarded me £350 a month until further notice! This is means tested based on my 24 hours a week. This is from 29th sept as theyve already paid me £506 which clearly must have been backdated. xxx
spudlab
Member

Re: Bone mets - please join in

Chocolates

 

I started a phased return to work this last week. The aim is to get back to 37 hour week - that will be less than I was doing before. I am not very good at sticking to the programme - I did 6 hours on Wednesday and 7 and a half on Friday instead of the 4 hours I was supposed to do. I have a board in March who will decide if I can stay in the navy but I can tell them what I want. I have until the end of January to fill in the forms. I have a new boss starting next week and that may influence my decision. There are opportunities opening up potentially in the NHS that I could switch into.

 

My joints are really sore but no worse than when I wasn't at work. I have also gone back to the gym although I took a sleeping pill last night and stayed in bed instead of the gym this morning. I will get out in the garden this afternoon as my exercise - some lawn mowing, digging and planting. My garden is better than it has ever been and I really pleased with my vegetables even if I don't like eating them much. We had potatoes and leek from the garden last night. 

 

Anyway I hope everyone is having a good weekend.

 

2catlady
Member

Re: Bone mets - please join in

Hi,chocolate,make sure you look after yourself,working in a school is exhausting. Oh car shopping how exciting . Oh I think a little open topped sporty number for you to show MrC off lol. Take care and rest xxxx
I'm okay thanks,very tired and sore. Apparently the soreness peaks next week,yikes! But as long as it settles for Mickey I'm okay with that.
Janette,my PIP was backdated a year! It was a lovely surprise. I bought my self a lovely cushioned garden bench ( we won't mention the parasol!!!)
Huge hugs lovely ladies xxxxxxHelen xxxxx
Chocolates
Member

Re: Bone mets - please join in

Janette - you shouldn't have to wait. However when yours does come through it will be back dated so you'll be off on holiday again. Did you read bev's comment - you may even get working tax credit too. Sorry to hear you didn't take time off - my four days this week was exhausting. Not sure how long I can keep that up for. Only 3 days this week as due treatment so a bit easier.

Helen, my onc will no doubt tell me off - the usual but while I can I want to get on with my life. Going car shopping tomorrow - very excited. How you doing - how are the sores - are they beginning to heal? How do you feel in yourself - I'm hoping a bit stronger every day. xxx

Sheila - good morning - hope you are feeling a bit better today. Huge hugs to you xxx

Go well everyone,
Hxxx
rosie53
Member

Re: Bone mets - please join in

Hi Helen, oh i won't be giving in as regards to my PIP i will contest it if they refuse me, like you say its not fair as this disease is so unpredictable, really needed a few days off last wk because of increased pain but didnt because of money!! Arrgg!!!!
love Janette x x
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies,
Welcome back chocolate,oh wow soooo pleased you got PIPs that's fantastic news. Will be holding your hand next week when you see onc. Mind he's going to say no tests and your fine xxxxx Mr C will have a word with him if he says anything else. I have a look at Mr Cs apron lol. He needs to help with shopping today at Sainsbury's.

Oh,Bev,that's a lovely surprise for you,make sure you spend it on something nice for you.

Janette,it makes me so cross when docs won't sign forms,this disease can change so fast. Also the extra expense of just dealing with SE and treatment can be so expensive . Just parking in the hospital ! Try to get a Macmillan financial advisor to fill your form in. It took me a year and two letters from my MP before I got it! So don't give up. It should be automatic grrrrrrr.

Huge hugs to our Sheila (((((xxxxx))))) keep strong lovely lady.

Anna,glad you have finally got your rads.your platelets will be fine by next week.

Huge hugs to everyone and have a lovely weekend,Helen xxxxxxxxxxxxxxxxxxx
geordiex
Member

Re: Bone mets - please join in

pip goes from age 16 to 64 I get £138 per week lady at maggies centre did forms got a bluebadge within a week and the whole process just took a few weeks ,am obviously lucky xx

rosie53
Member

Re: Bone mets - please join in

Morning chocolates, I have applied for PIP in June, my onc wouldnt sign the relevant paperwork because she said she didnt feel i was at that stage yet!!! But i applied anyway and got a letter back saying it would take up to 20wks or more before i hear anything!! 😞
Love and hugs to all Janette x x
Chocolates
Member

Re: Bone mets - please join in

Bev that's interesting - is it means tested? I can't really find any info about that bit. I work 19.5 hours per week and sometimes more but am quite highly paid. Oh well I guess I'll wait and see. How long after your pip decision did this come through?

Janette - I've got all my fingers and toes crossed for you for a fabulous holiday which goes smoothly. Hope you are feeling ok still. I got my decision about two weeks after applying - not long at all to wait. If you are thinking of applying please do - get your ds1500 and go for it. We all deserve it for what we have to go through.

Morning Helen, gc working hard here. He says he'll be up to you later on once he's finished typing up a policy for me. Flowery apron growing on me - (excuse the pun) let me know what you think.

Bundyrum- hope you start to get things sorted soon and you are feeling a bit better. It's worry after worry isn't it - although we seem to learn to deal with the ups and downs more as time goes on. A smoother ride would be appreciated though wouldn't it?

Spudlab - how are you doing? Have you made any decisions yet about your career or are you just putting those on hold for the moment and concentrating on yourself? Look after yourself.

Faraway - if I remember correctly you're away now. Hope you have a fab time.

Everyone else, I'm thinking of you all. Have a good weekend.

Huge hugs everyone,
Hxxx

Bevlaar
Member

Re: Bone mets - please join in

Hi ladies....back on the subject of PIP. Thought I'd let you know because I certainly wasnt aware.
I checked my bank balance today and couldn't understand why there was more in there than expected. A payment had gone in yesterday from HMRC for Working Tax Credits for £506!
I haven't claimed this but when I looked on their website, apparently if you receive PIP you are entitled to disability element working tax credits too! You have to be working 16 hrs a week or more.
They must pay it automatically if you're awarded PIP.
I work 24 but am going to cut it down to 16 (2 days) next month.
So if you work make sure you look into this too.
Love and hugz....Bev xxxx
Bundyrum
Member

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Thanks for your replies everyone.  I've another blood test next week.  The good news is I have my second round of radiotherapy booked for next week now - I feel I have been waiting ages.  Fingers crossed the low platelets don't delay this...  Have a good weekend everyone.  Anna.

rosie53
Member

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Hi chocolates, so pleased for you getting PIP thats great news!! Did you wait long for it to come through?? Touch wood my pain has not been quite as bad today, still managing ok with para's and naproxen
Welll i'v askf my GP today for a letter to take with me when i go to Spain nxt wk but he insists i don't need one, said i will be fine as long as have my dispensing labels on the boxes....hope so!!
Love and hugs to all Janette x x
Chocolates
Member

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Hello lovely ladies. Have been reading posts and keeping up with your news. Helen so pleased you've finished rads - just feet up now getting ready for Micky magic!! Thanks for sending gc my way - he's just arrived - without his apron because apparently you wanted to keep it! I've put him in a flowery one we have here - not quite the same.

Sheila - huge hugs to you lovely lady. You're doing great - one day at a time. That small post of yours brings smiles to my face - we're always here for you and waiting now for you to come back on more regularly. All in good time though.

Hi Jeanette - how are you doing - pain all sorted I hope. Bev - I think your scan results are good - I know where you are coming from though but hopefully you'll settle on the good side of the fence. Let's hope for the same or better next time.

Hello everyone else - sorry if I've missed anyone but I'm so tired. Was a hard first week back - was cheered up though by arriving home to my PIP letter - with enhanced mobility as well. So pleased. Going off on Sunday car hunting. Very exciting. Such a relief financially as well, cancer holidays for treatment don't come cheap - we've had two lots and our saving for a rainy day and some have all gone. This will hopefully get us back on track and maybe a small holiday next year.

My heart is still fluttering a bit - will mention to onc next week - which I'm sure will mean more tests. That's what I hate - just let me be normal for a while please.

Anyway I'm so tired - have a good evening and will be on on the weekend.

Lots of love and hugs everyone.

Hxxx
spudlab
Member

Re: Bone mets - please join in

Platelets are the sticky bits in your blood that stop you bleeding if you cut yourself whilst other goodies in your blood get activated. Symptoms of low platelets includes bruising and bleeding. Some people don't notice anything at all!
rosie53
Member

Re: Bone mets - please join in

Hi Shelia, good to hear from you!! Glad your starting to feel a little better
Love an hugs Janette x x
2catlady
Member

Re: Bone mets - please join in

Hi,Sheila ,lovely to hear from you. You just rest up lovely lady and get yourself well.
Massive hugs,Helen xxxxxx
roxy12
Member

Re: Bone mets - please join in

Hi you lovely ladies. Hope everyone is doing well with their treatments.

I have been very tired etc and had a long day at clinic on Tuesday. Bloods, doctor and then chemo.

More bloods yesterday. Nice not to have anywhere to go today. Hoping to feel better after this cycle! Just lazing around.

Feeling rubbish but Dr on Tuesday seemed happy with bloods so remaining positive. Rest week next week.

Hope your rads have gone OK Helen. Chocolates, I hope school has gone well.

Natalie, it was christie I was in and can't fault them one bit! The food was good as well.

Take care all of you. Lots of love Sheila. Xxx

pam01
Member

Re: Bone mets - please join in

Bundyrum...I think there are a lot of potential reasons for low platelet counts...some of which are simple like viral infections, drug side effects etc..........other is a sampling error and so well worth simply getting it re checked...It partly depends on how low it is...tends not to cause problems unless very low so may just keep an eye on it...also whether other things in your blood are low as well ...like red and white blood cells.....sometimes it can indicate a problem with your bone marrow and with the production of platelets.....and this is sometimes caused by cancer in the bone marrow.....but a lot of simple things to look at before jumping to that conclusion!!...

2catlady
Member

Re: Bone mets - please join in

Hi,Anna,sorry to hear your problems. I can't answer sorry but I'm sure someone will be along to answer your questions.
Huge hugs,Helen xxxx
Bundyrum
Member

Re: Bone mets - please join in

Hi ladies.  Has anyone had problems with a low platelet count?  Symptoms? Causes?  My GP rang through my blood results today, and it seems my platelets have dropped further.  I will be tested again next week but I was wondering about the above questions????  I am learning way too much, and still needing to learn more.

 

Thanks.

Anna.

2catlady
Member

Re: Bone mets - please join in

Thank you ladies xxxx
Lol bev,at mr GC.poor man will be shattered with all us ladies. He may have some homework to mark for chocolate this weekend.
Oh Tracy,you must watch frozen ,it's a great Disney film.
Huge hugs lovely ladies,Helen xxxxxxx
Bevlaar
Member

Re: Bone mets - please join in

Well done helen....glad that's over with for you! Relax now and enjoy the film....I might just watch reruns of Oceans 11, 12 & 13.....haha! I want a piece of GC too! 😉
Desi-2
Member

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Well done Helen now time to recover for your holiday! Not seen Frozen might give it a watch!
Love Tracy xxx
2catlady
Member

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Hi,billben so sorry you are having a rough time. I'm not sure what to advise apart from eat tiny amounts of what u fancy,even if it's sucking a sweet or licking a lolly or an ice cream .
Hope you get sorted soon,huge hugs,Helen xxxxx

Thank you ladies xxxx
Yippee!!! Rads over,thank god! I'm celebrating tomorrow by subjecting my sister to DVD of Frozen lol I'll not sing though!!
Huge hugs to all the lovely ladies,Helen xxxxxxxx
Oh,chocolate,first week nearly over for you too! Xxxxxx
spudlab
Member

Re: Bone mets - please join in

Did they tell you to put the drinks in the fridge and get them really cold? They are much better that way. If they have given you milky ones and you don't like them, there are some that are more like juice
bill-ben
Member

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Hi ladies not been on for a while so I hope every one is as well as can be. I need to pick brains. Two weeks ago I got a massive infection in my mastectomy site I won't go into details but it was disgusting!! I was put on high dose antibiotics which touch wood has cleared everything up but now I have totally lost my appitite. I have hardly eaten a thing for ten days everything just makes me gag! I had my second dose of chemo on Monday and nurses gave me some special drinks but they are awful. I wondered if any of you ladies out there have experienced the same thing and what you did to get over it. I know I need to lose alot of weight but 1.1/2 stone since the end of July is probably not the best way to go about it!! So if any of you ladies have any ideas they would be gratefully received!

bertie1
Member

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Hi Helen so sorry you had a rough night ,your week off should give your body chance to recover .i feel more like myself today so I'm going make the most of it and going out for anice lunch with my niece and a walk around the lake.Good luck with your rads today.

Take care

Kayexx
Porkie
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Helen

Keep your chin up - you are amazing! You will soon be on that plane to see Mickey. xx

pam01
Member

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Goodness you have been through so much in the last few weeks.....hoping you feel better later so you can celebrate the endof this part of the journey......and the journey to disney just around the corner!!xx

2catlady
Member

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Good morning lovely ladies,
Tracy ,so glad you got everything sorted ,yes diclofenec is good xxxx
Last rads today,yippee!!!! Had a rough night being sick so not sure if it's rads,chemo and new D.... bone injection( wow so quick and no IV!) or probably all three!
Thank god next week is week off so poor body can recover a bit .
Well I'm going to have to drag myself out of bed and go to hospital.
Catch up soon,huge hugs,Helen xxxxxxxxxx
bertie1
Member

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Hi Bev stay positive at least things have stayed the same and not got any worse it shows the cap must be doing something .I just hope my results show it's working after my 3rd cycle.


Love Kaye xx
Desi-2
Member

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Hi Helen yes I saw GP and he has prescribed Diclofenac in his opinion better than ibuprofen and to take regularly with paracetamol as you said. I must admit that just after one day of taking at regular intervals it's feeling better, so il keep it up and hopefully if the chemo shrinks the cancer the pain may reduce too. It was interesting to read I think it was Pams explanation of radiotherapy because I had been thinking why can't I just have some more of that. Got my wig today and I'm quite pleased with it. Showed my son and he said he wouldn't actually have guessed if he didn't know so that's good! And a soft jersey hat and a nice wrap around scarf so all set for headgear.
Also had a good result in Boots today, after being let down twice for an appointment with their Macmillan trained make up lady I agreed to settle for a general makeover with no 07 products and by way of an apology came away with what must be over £100 worth of free products!

Bev it's great to hear you are stable definately time to celebrate!

Mavis it's good to hear you are coping keep it up!

Tracy xx
2catlady
Member

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Hi,Linda,oh crossed threads. Glad you had a great time and I see your bikini got an outing.
Yes,liver and lungs came as major shock to me. I was expecting more in bones,but that's life ... I'm on my first chemo cap and at a new hospital,yippee. So hopefully I'll get to hear those words I long to hear that I'm stable.
Enjoy your TV and I'll catch up soon,huge hugs,Helen xxxxxx
LYNDYLOO
Member

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Evening Catlady

 

Not been on here for a while.  Just catching up with what has been going on.  Sorry to hear yours has spread to lungs and liver. That must have been a shock when they told you that. 

 

As you know went on holiday to Corfu with hubby, daughter her hubby and grand kids.  Throughly enjoyed it all.  Stopped at one of the Louis hotels fully inclusive. 

 

Went back to work on 19 August which at this moment in time throughly enjoying after being off for 7 weeks with operation and 2 weeks holiday. 

 

Hope you are feeling alot better.

 

Just going downstairs to watch Hollyoaks.

 

Take care. Linda

2catlady
Member

Re: Bone mets - please join in

Hi,Mavis,great to hear from you and great the SEs aren't too bad for you or at least tolerable.
Huge hugs,Helen xxxx

Tracy,any news from doctor on your pain meds?
Huge hugs,Helen xxxx
sivam
Member

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Hello my Dear Friends, all going well with Everolimus  and Aromasin, some Diarhoea but nothing as bad as with Taxol, intense overwhelming sleepiness, so guess what, I am having to to give in to the desire to sleep.

I am following this thread on a daily basis and gaining great comfort from your words, so glad I plucked up courage to join you.Love and Light xx  Mavis.

bc-lass
Member

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Stable is good x
2catlady
Member

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Hi,bev,stable is fantastic at least you know cap is working and C not growing. I'd be celebrating if I were you.
Don't worry about your holiday you will get away just a little later.
Huge hugs and crack a bottle open to celebrate,Helen xxxxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi Bev. Sorry your results weren't what you wanted but as the other ladies have said the tablet form is a slower acting chemo, it doesn't blast the uggers like the IV but it does give you a better life/treatment balance. When I started it last Feb (2013) my onc didn't want to scan until at least 4 cycles. I think my first results were stable (hooray) and then after that I got good shrinkage in my liver mets. It kept everything at bay until a new tiny met was shown on my most recent scan so I've gone onto the dreaded IV chemo.
Dubai will still be there next year and something to look forward to although my oh, who went there for business a couple of years ago, said it was just like our local shopping centre but with sand everywhere 😉 Can't please everyone! Have a short break to Europe, great cities and we've done loads recently when I also couldn't fly long haul. No jetlag either 🙂
Take care
Nicky x