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Bone mets - please join in

Faraway
Member

Re: Bone mets - please join in

Hi All, well finally out of hospital that was eight days I will never get back. My neutrophils dropped to 0.0 and took ages to get back up even with GCSF injections. They could have discharged me Sunday afternoon but because the pharmacy closed at 1pm they could not supply me with antibiotics and when they finally got round to sorting my drugs they sent me home without antibiotics! Not looking forward to next Docetaxel unless they can either reduce dose or give me these injections to help boost immune system. Sorry to hear you are also suffering Bev. Good luck to all waiting for results xxxxx
rosie53
Member

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Hi Bev, good to hear that you are feeling a little better today, it sounds like you have had an horrendous time i really feel for you, can't offer you any advice as i have no experience of chemo just stay strong lets hope you are over the worst, nice to hear you have your daughter looking after you too, they are so precious to us arnt they, my 22yr old has been amazing since my dx in March.
Helen, hope your ok love, not seen any of your lovely cheery posts for a few days???
Hello to all my lovely "boney" friends hope you are all well.
Love and hugs Janette x x
Maire
Member

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Apologies in advance for this post but just wondering if anyone had clear bone scans before finally being diagnosed with mets?
I continue to have pain in my left thigh (burning) and pain in my upper spine (a hard pain which doesn't resolve with pain killers).
My bloods are normal and none scans have been clear.
I also have tenderness in my right side.
The doctor is confident there is nothing amiss but I remain convinced there must be something. I can't help shake the feeling that I wouldn't have all these persistent pains otherwise.
Can anyone advise?
Think the gp
thinks I'm just over anxious but it's now interfering with my work.

Bevlaar
Member

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Thanks barton and belinda ... i will try the milk as i love it. Sounds very appealing at this stage! And yes water is vile! Ive had no breakfast so just fancying some beans on toast! My friend just rang to say shes made me some of her lovely chicken stew and on her way with it...yum! Another best friend has just gone. Mum is here cleaning and cooking for me.. and my precious daughter has taken few days off work to stay with me while her dad goes to work...well looked after. Sorry if i havent been able to catch up on all your posts this week but wish u all well. Xxxxx
lizH
Member

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Hi Barton ,

I am having taxol weekly and have just started getting leg pains! Very uncomfortable, did they prescribe anything for it?

Liz x

Barton
Member

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Hello, Bev  hope you are improving.  When I did FEC-T in 2011 (the T being Taxotere), I found my taste was awful, too.  Having read the tips on the Primary pages originally, I tried the pineapple too, and it worked.  I found that pineapple and milk (believe it or not) were the ONLY things that tasted normal.  Even water was disgusting! Give milk a try - at least if you can stomach it, it means you are getting some fluids. 

 

 

I really feel for you, though.  Even though I wasn't anywhere near as bad as you (or some other people here), I know the Tax was the worst for me - far worse than the FEC. I cannot describe the leg pains!

 

Wishing you all the best.  Barton.x

belinda
Member

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Sorry if someone else has already mentioned this tip but for anyone having to keep up their fluids try using straws. It's easier if you have mouth ulcers too and you will drink more using a straw. Also there are lots of fruit teas to tempt when everything tastes the same. X
LemonDrizzle
Member

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Bev, I'm so pleased to read your post this morning, I've been thinking about you all night. All I can say about food is try anything you feel you might be able to eat - something you might be able to eat today might taste horrible tomorrow, so nibble on those shortbreads while you can. I was lucky being in hospital because the drip gave me fluids which I couldn't get into my system any other way because the taste of everything was so awful, even water. I hate to say this because I know how difficult it is, but drink as much as you can also take your temp regularly just in case it is high and you need to be in hospital.
Hope the rest of the day is manageable.
Huge hugs LD x
Lynnq
Member

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Hi Bev, i am so pleased to hear that you have a slightt improvement, you must make a note of all of your SEs - they may be able to give you something to help you through them next time. I am no expert but have heard\read that fresh pineapple can help with the 'taste' problem. Hope you continue to feel progressively a little better until you are well.
belinda
Member

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Oh Bev it sounds quite dreadful, I hope you have now turned the corner and next time something can be done to make it much more bearable. X
Bevlaar
Member

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Just woke up after first  nights  sleep  since  saturday.  Slight improvement!  But what  a nightmare!  Cold sweats...perspiration  running down my throat  and neck like a river and hallucinations! Tea and liquids just take like nail varnish remover! Food is vile, only thing i can taste which is nice are sweet shortbread  biscs. 

And the pains....!!

 Lemon drizzle..im really encouraged by what youve said and you're  so brave!. .,I know i have to go on too but onc will have to do  something for  next time. dont think ill get through another! 

but thank you  all for keeping ne sane through  this...,.youve been so supportive  and i can feel how much love and genuine sympathy  there is here.....thanks lovely  ladies  xxxxxxxxxx 

carolsav
Member

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Just catching up with posts. Bev i cant believe wot u are going through. It sounds awful and i just hope that by today the se are lesseninng. Keep strong and take somw comfort from wot the other ladies who have been through this treatmenr are saying.
Thinking of you xxx
geordiex
Member

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Hi hope your feeling a bit better this morning xx

LemonDrizzle
Member

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Bev, I know exactly how you feel - it was me at the beginning of April and I honestly thought I would never see the summer. I had my first docetaxel like you on a Friday and ended up in hospital on the Monday for a week. Because I was so ill the onc reduced the dose but said she would give me 8 cycles instead of the 6. Anyway I only lasted for 3 as the toxicity was too much for me. Your onc will be able to do the same. Even though me and docetaxel were clearly not made for each other, I told the onc that I would carry on with it as it was doing really well in getting rid of my unwanted guests. So, even though it's horrendous, you wil find the strength to persevere unless there is a change of plan. Hopefully the SEs won't last as long and you'll be able to see light at the end of the tunnel.
Love and hugs LD x
pam01
Member

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No experience.. but thinking of you and hope you feel better soon.xx

geordiex
Member

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better with paclitaxel weekly not docetaxel xx

su-bee
Member

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Bev I had weekly taxol. Wasn't too bad, jusy knackered. Couldn't face the last one , it just gets you down twice a week for 6 months. 1 for blood tests.

Bevlaar
Member

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Wont it be worse weekly?? Xx
lizH
Member

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Thinking of you Bev .... Liz xx

Desi-2
Member

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Bev it sounds horrendous if your no better tmo though I would go in if I were you xxx
geordiex
Member

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he may change paclitaxel is a taxane the same but can be given weekly xx

Bevlaar
Member

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The thought of having to have 6 of these is killing me. I hope onc reverts to his original plan of only 3! 3rd one is on boxing day too 😥
geordiex
Member

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I was dehydrated gp had been but was a bit of waste of time I was put on a drip for fluids and IV antibiotics for ecoli ,not a good time ,but came out the other end xx

bertie1
Member

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Bev hope you start feeling better soon sending hugs to you
Kaye xxx
Bevlaar
Member

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Thank you. Onc ward wanted to send ambulance at 7am but i was too ill to move! Want to stay home. So they rung gp instead xx
geordiex
Member

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hi Bev they may reduce your dose as I said earlier made me really poorly ,but got changed to weekly paclitaxel and was much better ,your symptoms might subside soon but try to force some fluids down ,hope you feel a bit better soon I called the onc ward and went in last year you probably won't need to do that but you must drink to flush it out even though your mouths sore 😞 xxx

rosie53
Member

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Bev, i really feel for you, your really suffering arnt you, hope you feel better soon try to stay strong.
Thinking of you, love and hugs Janette w x
Bevlaar
Member

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Still ferl so ill. Cant eat or drink properly. Everything hurts my throat neck to feet. Just writhing on bed crying. Gp came out..upped morphine but not helped much...cant stick it. How much longer. Will all be like this? Will onc reduce dose.
stresshead
Member

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hi Bev hope you are feeling better..i know exactly what its like..just had my 6th and final cycle....slept all day yesterday.no energy and nausea today. Just hold on to the fact that it will pass. Not sure at the moment whats worse...dealing with the side effects or knowing the dotaxol wont be killing any more bad cells. Love and hugs.x

Desi-2
Member

Re: Bone mets - please join in

Morning ladies
Bev how are you?
Tried to do some Christmas shopping this morning but dull drizzly weather and lack of shopping companion found it hard to get into, have to try again another day.
Called to chase my clinic app for tmo and after being told not to be silly to soon for results and no app for me have to wait til next week, finally she had to eat her words as the results were there so I've been squeezed in (after much tears) well sometimes you need to do this it seems before anyone listens to you. Hope to get some treatment his week.
Best wishes ladies xxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi Bev
I felt rotten after my 1st dose, especially when the steroids wore off. I hope you only feel rough for a day or so then pick up. I had loads of shivers, felt so cold, slept a lot and had lots of bad aches especially in my bones where the mets are. Haven't been anywhere near as bad on the other 3 cycles I've had although currently sympathising with you as I've picked up a bad cold which is doing all the same things 😞
Nicky x

bertie1
Member

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Morning ladies hope you all had a good weekend.
Bev hope you are feeling better today and the side effects start to ease,
Hope everyone else is doing ok and good luck to all with scans ,results and appointments this week.
Love
Kaye xx
madge1
Member

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Morning ladies,
Hope you had a good weekend!!! Bev, I hope you are feeling better today, I know how you feel with the side effects of the Docetaxol!!!! I only had one treatment of it !!!!!!! Wishing everyone good luck if they have appts, scans, and results this week !!! And also wishing you well if you've been feeling unwell !!!
Love Julie
Xxx
Desi-2
Member

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Bev thinking of you and hope you pick up tmo xx

Spent this weekend rebonding with my twin brother! Haven't seen him since our mums funeral last year. We've had our ups and downs as I mentioned before but oh how I wish he lived back in this country now. He was left Tetraplegic after a diving accident when we were 21 and if I can muster just half the guts and determination he has shown over the years I know il give this crappy disease a run for its money!

Hears to a hopeful week for all of us awaiting results and treatments xx
rosie53
Member

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Hey Judy has finally been voted of scd....now we just need to lose Stevi Richie from the X Factor!!! Best is yet to come though with Ceeb Jungle 🙂
Good night lovely ladies, Janette x x
trudy2010
Member

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Golly me, Ive just clicked with what you mean by SCD ! I thought it was Secondary Cancer Diagnosis 😞

So much prefer Strictly !!!!

Lynnq
Member

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Spoil yourself Bev...hugs and love on the way!!!
rosie53
Member

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Hi Bev, sorry your struggling, stay strong sending you a huge hug love Janette x x
geordiex
Member

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and drink plenty xxx

LemonDrizzle
Member

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Bev, you will get through this and cope with the awful SEs. I asked for meds for everything and still have a mini pharmacy just in case. Ask for things to help as soon as poss, don't wait for next appointment which I assume is in 3 weeks.
Rest and stay in bed if you need to. LD x

2catlady
Member

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Bev,huge hugs. Don't suffer ring onc ward they can give you "things" to help with SEs
Rest and take it easy ,huge hugs coming your way,Helen xxxxxxx
su-bee
Member

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Bev they have lots of medication to help you, make sure you note all the symptoms and talk to them about them.
geordiex
Member

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with docetaxel

geordiex
Member

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I ended up in hospital for 10 days last year dehydrated E-coli horrendously sore mouth they put me on weekly paclitaxel much better and didnt interfere with neutrophiles mind you lost finger and toe nails which are back and left with peripheral neuropathy in feet and hands but some people have no problems or very few at all ,hope you feel better soon xx

Bevlaar
Member

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Feeling dreadful after docetaxol. ..been in bed all day. This is awful. Cant eat or drink anything. Hot and achey and sleeping on and off.. How will i stick this for days???
Nellgwyn
Member

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Sympathies for everyone who’s feeling nauseous at the moment - feeling sick all day is so awful and debilitating.. I’ve just had a bad week feeling sick, the runs and being horribly weak, but it suddenly seems to have resolved itself and I feel much stronger all round. I was worried about it being something suspicious but in the end I think I just had a bad tummy bug - I went right off food but kept myself going with bananas and ginger beer! I also found lemon and ginger tea to be soothing - I make it in small cafetiere (a tip we found in a turkish cafe - it really seems to extract the ginger wonderfully after steeping a while). I’m on Tamoxifen but onc thought it might have been the Naproxin/Omeprozole - he had told me to take them regulalrly to build up the effect - I did stop them and surpsingly I found I could cope most of the time with just paracetomol - less tablets to take is good as well. Mx

bill-ben
Member

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Morning Ladies  saw my onc last week she said if you need something for dry lady bits just watch you get one without eastrogen (dont think I've spelt that right ) as it is added to some creams . I am  on Letrazole which doesn't make me feel sick but my appetite is still haywire Sugarpuffs and blackpudding for breakfast !!I still find meat hard to stomach and seem to only want cheese and crackers and tinned macaroni cheese . I was also told  to take anti sickness pills regularly not just when you feel squiffy and that really helped when I was feeling rough .Hope this helps .Have a good day everyone Vicky xxx 

2catlady
Member

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Thank you LD, I'm soooo excited about tonight xxx
oh I'm taping SCD tonight. I'll watch tomorrow morning. It better be Judy's last dance .
Hugs,Helen xxxxxxxx
LemonDrizzle
Member

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Good morning everyone.
Liz, you did really well keeping cap on! Hopefully steroid buzz won't last too long and you'll be able to get some sleep soon.

Janette, you're so right about feeling sick and wishing you could be sick instead. Have a good day at Cheshire Oaks - I'm going on Wednesday with my daughter and it will be the furthest I've been from home since March. Make sure you rest as often as you need to and enjoy yourself.

Helen, Judy was better but has to go. Have a fab time tonight and make sure you remember to record Strictly.
You don't want to miss her last dance!

Lynn, your onc surprises me, I thought scans were given every few months. At least you stuck your ground which isn't always easy - you should be very proud of yourself.

Bev, hope you have another good day.
LD x
Lynnq
Member

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Thanks Janette....going to speak to GP about Femera brand and lubrication cream in Thursday (think I should have non oestrogen one?)
Also about sickness. - will let you know what he says about that.......he is actually quite a nice man, always been very kind and helpful. Just a bit concerned about going in with a 'list'. Because ONC made me feel a bit of a nuiscence I suppose.
Husband says I am too sensitive.......
Have a lovely day shopping....going to do some baking - always takes away stress, and then will pop and see granddaughters with some cupcakes.......i have so much to be grateful for!!!