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Bone mets - please join in

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Re: Bone mets - please join in

Great to hear your feeling better Bev xxx
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Hi,bev,fab news ,yippee to getting home! And yippee to TV so you can watch SCD lol.
Hugs,Helen xxxxx
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Bev

Fantastic news :-)Smiley Happy

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STRICTLY tonight ladies! 😉 Who do you think is going this week??
Helen...yes i have a TV in my room so will be tuned in. Doc says neuts are more or less normal now and i havent been in pain since yesterday so painkillers stopped, i.v. penicillin changed to oral and he said this is one step nearer to going home! 😅
So could be tomorrow or Monday 😅😅😅
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Thanks girls I will ring on Monday , I am not due to see Onc until end of January and I don't want to wait that long, Had an MRI to check for spinal compression and all was ok , but things can change quickly, I will let you know what happens next xx Jean xx

 

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Hi Tilly, I had two repeated rads to the sacrum after several years in between. Agree with the others go back to the Onc and let us know how you get on. Take care. X
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Tillybob,I agree with pam ,you need to see your onc and see what he says.
Good luck and hugs,Helen xxxx
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Hi Tillybob........If you are getting increased pain in the area of your previous treatment I would go back to your onc and seek his advice....he may want to repeat the MRI scan to have a look at what the bones are doing...and in particular to check they are not touching or likely to touch or damage your spinal cord.....I had a similar experience to you...my secondary disease presented with some pain and throbbing in my back....An MRI showed a collapsed T4 in contact with spinal cord...I had emergency radiotherapy to the area over 5 days...that was nearly 4 years ago....I asked re repeated radiotherapy if necessary.......I was told that the concern is the total dose of radiotherapy given to your spinal cord.......too much can cause damage similar to the cancer.....so they would have to think about it....plan the direction very carefully,and consider how long since the last radiotherapy dose............personally if I started to get pain in the same area I would be straight back to the onc........better for him to review everything than for the GP to do it second hand........good luck...Pamx

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Hi Ladies, I wonder if any of you could give me some advise, to cut a long story short, dx Feb 2011 with inflammatory Bc , secs found in lungs and T4 of spine, after usual treatments lungs now clear and spine was showing damage due to cancer but no evidence of active cancer, In April of this year i started with increasing pain around the area in spine, eventually after bone scans it was shown that the bone in spine had crumbled onto nerves so i had 5 rads to the area in July, although the pain never went away it was much improved , however the pain is returning , at the moment i am managing the pain through my GP , my issue is, do I go back to my Onc or carry on with pain meds ? My onc said the damage in the bone would probably never heal , can i have more rads or is it as I suspect a one off treatment, Really don't want to experience the terrible pain i had before. I had a CT scan after Rads and Onc was happy nothing sinister there, but it is always a worry.Thanks ladies.xx

 

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Good morning everyone

Bev, great to see you're on the mend - hoping you have an even better day today.

Liz, hope you're feeling well after yesterday's treatment.

Desi, hope you're feeling ok after yesterday's rads planning and you've got answers to your skull questions.

Helen, well I think you're probably right about hubby 4 tonight. Don't think it helps him with the publicity again about his and Ola's strained relationship, but as you say it will free you up to do other things - forget jobs around house maybe look for next suitor instead, much more fun! Glad your scan is sorted out but I expect it's a bitter sweet feeling bracing yourself for it and then waiting for results.
LD x
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Good morning lovely ladies,hope we are all good.
Bev,glad you are feeling a bit better. And hope you have TV in room as it SCD night! Xxxxxxx
Tracy,how did it go yesterday? Hope every thing is okay with you xxxxx

Well,lemon drizzle,now Judy has gone it could be anyone in dance off! I think my hubby number 4 will go Mr Steve b but at least he will be able to get on with jobs around the house! Lol

Julie, I eventually got scan after two days of ringing. It's next Thursday ,so only one week of worry until I see onc on the 4th for results ( if he's remembered to look at them,Karen is so right about him,lovely but dozy lol )
Huge hugs,stay strong lovely ladies,Helen xxxxxx
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Thanks for the update pam! Was thinking about you all today. Was mad to be in here today of all days. Would have loved to have been there to hear what they had to say....but lets hope you made some impact.
Im much better again tonight. Still on iv penicillin but in the best possible place xxxx
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Hi Bev,,,,sorry to hear your news...glad you are feeling a little better and well cared for......Im just back from BCC meeting where you were missed and everyone sends best wishes.....Everyone spoke about the inequalities in access to treatments accross Wales let aone between Wales and England....and although there was a lot of words they did appear to listen a little and have promised to return to feed back any progress in 6 months or so.........so we will be expecting your input then!...in the meantime hope you are feeling better soon. (((hugs Pamx))

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Thanks...I'm in my cancer centre hospital and theyre outstanding here. They just told me theyre moving me before breakfast to a single room as I'm neutrapenic.
Been doing my obs every 15 mins for first hour then hourly now 2 hourly overnight. To think I'd been 5 days in excruciating pain juggling a concoction of painkillers. ..and they got my pain relief controlled within a matter of a few hours. Xxxx
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Desi and Liz, hoping everything goes well for both of you today. LD x
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Desi only saw your post today and have replied good luck for today.

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Hi Bev sorry to hear you're in hospital but at least they've sorted out your pain relief and hopefully you'll start to feel better soon .Sounds like they are really looking after you I stayed in the same hospital 3 years ago when I was on Fec and they really are good there.
Take care
Kaye xxx
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Hi Bev pleased your pain is under control now finally. You and I seem to have the same SE with Docetaxel. i spent a week in hospital with neutropenia but a few days after being discharged I feel myself again and I am sure you will too, hang in there. Sending you hugs xxxxx
Ps I am experiencing head pain with my hair falling out (using cold cap so not great handfuls coming out) is there anything that can ease the pain?
Take care everyone xxxxx
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Morning ladies,

Get well soon Bev and all who are feeing rubbish.

I have my next taxol this afternoon, I am soooo tired I may fall asleep while they do it. I am drinking plenty and trying to eat well but has anyone got any tips on things that will give me a boost

Love and best
Lizxxx

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Oh dear, sorry ladies thought my first post didnt go so did it again!!! 🙂 obviously not awake yet
x x
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Morning ladies,
Bev, you are in the right place love, no one wants to be in hospital but i am sure you will be feeling much better soon.
Tracy, good luck today.
Lynne, glad you got sorted with your meds, your GP sounds lovely.
Hi to all my special cyber friends hope you are all ok, love and hugs Janette x x
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Morning ladies,
Bev, you are in the right place, no one wants to be in hospital but sometimes needs must!! I bet by this time tomorrow you will be feeling tons better.
Tracy, good luck today!!
Lynne, glad you got sorted with Femara and some cream, your GP sounds lovely.
Hi to all my special cyber friends hope you are all ok.
Love and hugs Janette x x
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Hi Bev, just popping into your 'room' to see how you are (waves at Belinda in the corner!)
It sounds that docetaxol really didn't like you one bit, I think it must be the Marmite of chemos as some have horrendous experiences and others, like me, it doesn't. I hadn't been adding much over the past day or so because of this asI didn't think I'd be very helpful! However you are in the best place possible and sounds Ds like the pain control is one big relief, let's hope the wbc and neuts start picking up soon as well although you are only just into the lowest part of the cycle so like geordiex said expect that they could all go a bit further down. I hope you have lovely nurses to look after you, on any recent stay I've had in hospital I've not been able to fault the great NHS staff of all levels. Take care.
Nicky x
Ps Hi to all mets ladies, hope your own treatments are going well, you are being listened to if not, and any scans or results due soon produce happy faces 🙂 xx

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Hi Desi, hope all goes smoothly at your planning I saw your post but have no experience of rads to the skull. Do you know how many sessions you are having? X
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Tracy,good luck. I'll be thinking of you xxxxx I'm sure there was a thread but they get lost so easily.
Huge hugs,Helen xxxxxxx
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Bev glad your in the right place to be looked after now will be thinking bout you today and hope you get stronger and stronger my word no wonder you were so poorly if your nuetropinic. Xx

Off for my rads planning for skull and spine today if anyone has experience of skull rads can u please make contact did start a new thread but no response xxx
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Hi Bev...sorry to hear that you have to be in hospital, but glad that you're there and being looked after and made better.
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Oh,bev, huge hug. You are in the right place and you will get everything to make you comfortable. Hang in there xxxxx
I'm sitting next to Belinda . We will need more chairs as we all arrive to hold your hand.
Huge hugs and stay strong lovely lady,Helen xxxxxxxxx
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as I said earlier on thats exactly what happened to me was horrendous glad your on the ward you feel safe and they will decide what to do xx

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Great news you are in less pain, goodness what an awful time you've had. Oh I had my own room once too! Agree it's so much nicer. And peaceful and private. Once the meds really kick in you will start to feel much more yourself Bev. (I will sit quietly over here, comfy chair, as I expect more of us will be popping in to see you as soon as they wake up.) x
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Bev, being in a room by yourself will make your stay much more bearable - it helped me to cope with being in hospital so much. It will be so quiet compared to being on a ward and easier to nod off whenever you can. So glad they've sorted out pain relief after all your suffering, hopefully you'll get stronger each day now as your wbc increases. Don't be alarmed if it goes down further before it starts to get higher, mine did and I survived to bore everyone about my ordeal! If you start to get any more SEs tell someone straightaway so you can be given something to help because in my hospital it took ages for pharmacy to deliver meds after docs had prescribed them.
Hugs LD x
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Thanks...I'm in my cancer centre hospital and theyre outstanding here. They just told me theyre moving me before breakfast to a single room as I'm neutrapenic.
Been doing my obs every 15 mins for first hour then hourly now 2 hourly overnight. To think I'd been 5 days in excruciating pain juggling a concoction of painkillers. ..and they got my pain relief controlled within a matter of a few hours. Xxxx
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Bev, nobody wants to be in hospital but you're in the right place. You'll start to feel better once the meds kick in and they'll find the right antibiotics to treat the infection. Because of your low wbc they'll take extra special care of you too. When you're on the mend you'll have lots of funny tales about the goings on in hospital to amuse us all!
Hugs LD x
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Oh Bev hope you are soon home and at least now the doctors can get you back on track and feeling stronger.
Take care, we will be your online visitors by your bedside until you get home. X
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Knew it would happen. ...been admitted at 5 today. Couldn't stand let alone walk. Very weak. 11pm Doc just came to tell me very very low wbcs. Done blood cultures as well...infection. he said no wonder i was ffeeling like i am. All hooked up now to iv fluids antibiotics and painkillers so difficult to type. Xxxx
Docetaxel just didnt like me one bit!
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Hi Bev sorry you're still not feeling well hope they get you sorted today as you shouldn't be left feeling this bad.
Hugs to yo
Kaye xxx
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Hi,Lynn,so glad you got sorted. You GP sounds lovely. Hope your died effects go now. It does take about 7-9 days for new brands to kick in as you will still have residue from others in system.
Hugs,Helen xxxxxx
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Hello everyone....again

Bev so sorry that you are still feeling unwell.....it sounds dreadful..if only good wishes could help, thinking of you a lot and hoping that you have a better night tonight..........i can only reiterate what everyone else has said.

Helen...my onc has also told me that bone mets ache as they heal .. Glad to see you posting again

Well i saw my lovely GP and asked if I could go back onto Femera brand of Letrozole....he asked me why and then listened to me very carefully and immediately said that he would amend my prescription. I mentioned the vaginal dryness and he gave me a prescription for a non-oestrogen cream. We then chatted for a couple of minutes about SEs....he's a nice man and I needn't have worried......
Wish you-all could have such a good GP. My hubby is ex military and we have moved around a lot, including overseas so have used many GP surgeries....this one is certsinly the best!!
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Hi ladies, hope everyone is ok, iv had a day off work today the weather has been nice here and i have got stuck into some cleaning and made a chocolate cheesecake.
Oh Bev i really feel for you, you really should not have to put up with this pain etc, please don't suffer in silence get in touch with your bcn or onc surely they can get something sorted for you.
Good luck to all having scans/results etc
love and hugs Janette x x
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Hi,Tracy,your onc is on the ball and looking after you thank goodness.

My feeling rough was pain in bones and muscles ,feeling soooo sick ( that's cap,but I'm sick with everything so nothing unusual there) and getting over infection in toe.and on top of that lack of sleep. All made for a can't be bothered few days and feeling like the preverbal bus had hit me! Infection gone now so feeling more like me again and pain is more under control. Feeling sick ,well as long as I've got toast I'll survive lol.
I'm going to ring CT people on Julie's advice and see what's going on. ( Julie I'll let you know if I keep clothes on lol )
Huge hugs,Helen xxxxx
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Bev you can't be expected to do this again there must be more help for you can't imagine how your coping don't know what to say but hope you get some help soon xxxx
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Helen my onc said can't do chemo and rads not sure if it's becuase its to skull because he did say before when it was just spine that we could do both. I think he's trying to juggle treatment with quality of life and as I ahd been struggling with recovering from the Fec he doesn't want to overload me. Oh I do hope you get your scan soon and it shows good results if you don't mind my asking have you been feeling unwell due to cold or bug symptoms or the pain? Just wondering if it's related to the Cape side effects? Xxx
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Hi,Julie ,just answered your PM xx thanks for advice xxxxxxx hopefully see you soon xxxxx

Bev,get onto ward and let them sort you. You shouldn't be putting up with this. They will probably take you in to keep an eye on you as they won't let you get dehydrated . It will be best place too xxxxxxx

Oh,Belinda ,you've made my day,healing mets. Oh I do hope so xxxxxxx sending you a hug xxxxxxxx
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Morning Ladies, just want to say a quick Hello to all of you, especially those of us who are so unwell at the moment.

Bev, I don't think you should suffer like that for so long? Sounds like you are having an extreme reaction to chemo and/or injection?

 Can you contact chemo ward for advice again?

 

My hospital gives me a chemo record book, with a traffic light system for all possible side effects. You are in the red in my book, with is classed as contact hospital immediately for advice?

 

I think the thing is, we all have different pain thresholds, but obviously nurses and doctors can't assess if we are 'wimps' or not? Without seeing you, they could be making general assumption on expected discomfort level?

If you are the kind who can tolerate a high degree of pain without complaint then let them know. 

Sometimes being brave and just bearing it  just makes it harder for ourselves? 

Stay strong everyone

Julie xx

(The other one. haha)

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Oh Bev, what a nightmare, don't put up with the stomach problems, you will be exhausted and feel dehydrated if it continues. Wish you could get a break from all this rubbish, make sure your GP or Onc team are looking after you well. Is someone at home with you right now? Take Care. X
Good to see you're back Helen, if it's bone pain with your drop in markers might it be your mets are starting to heal? I have been told, many times, by my Onc healing bone mets can be very painful. X
Everyone else, having scans, waiting for results, GOOD LUCK! Never gets easier, all the waiting. X
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Oh Bev 

what can I say, this can't be right, hope they sort you out soon.

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Worse today. In awful pain last night and had to call out of hours at 11pm. Gave me codeine phosphate but i took 2 sleep tabs as well .. shdnt have. Awful toilet probs now..cant stop going evry 10 mins (wont describe it!!)...still sleepy and stomach pains. Cant seem to come around. This cant be right x
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Hi,LD,lol,yes,I wish I'd run off with Bryan . I like that,onc with chemo brain lol .i think he's been sampling the product. He's always on holiday!! Well his cousin is owner of planes starting with V....n so I reckon he get lots of free flights lol
Huge hugs,Helen xxxx
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Helen, nice to see you back but a shame you're not feeling too well. I was hoping you'd run off into the sunset with Bryan after Sunday night! My hospital has to give ct scan within 2 weeks of request so hopefully yours will come through soon - only problem with mine is they are lousy at writing reports quickly and getting them on the system. Still think your onc has chemo brain!

Julie, wishing you a painless and stress free ct scan.

Lynne, hope appt with gp is successful. It annoys me so much that cost is a consideration, surely we're worth it.
Bev and Desi, hope you are both starting to feel better.
LD x