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Bone mets - please join in

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Re: Bone mets - please join in

Hi everyone I went for my routine appointment with my onc yesterday. Whilst I was waiting to go in I saw several ladies wiping away tears as they came out. By the time I went in I was feeling very sad for them and all of us. This  week there has been a lot of positive news about cancer,a new radiotherapy  bullet treatment,  immune therpy treatment and  breast cancet treatment to stop metastases.  This probably won't  help me but maybe will help our daughters or grandaughters so trying to be poditive now.Cancer is a bummer though!

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Re: Bone mets - please join in

Hi KAM80, Kate, so sorry you have to join us but this is a very supportive place. X
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Hi 2ndtimeunlucky, sorry you have had to join us but you are very welcome. Im similar to you, i was 38 when dx with primary and had lumpectomy, radio and put on tamoxifen, my mets were discovered last March in my bones and was devastated. Feeling a lot more positive now, please take time to absorb your dx, we are always on hand to give support and info
hugs Janette x x
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Re: Bone mets - please join in

Lynn,

I can understand your worry, it's only natural. It sounds like your medical team are being very watchful and proactive which is good, though a bit scary for us. As the others have said, try not to read too much into it, it could be something completely unrelated to cancer. I know it's imposible not to worry, when I'm in such situations I try to prepare for the worst but hope for the best, if that makes sense. Will be thinking of you and sending positive vibes for a good result xx

 

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Hi 2ndtimeunlucky,

 

Sorry you are having to join us but welcome to the thread. You are bound to be feeling scared and overwhelmed at the moment, there's a lot to take on board and try to assimilate and deal with. It does get easier and most of us find that once we have our treatment plan and it's underway we start to feel a little less anxious as there is something being done. You've had a tough time, and this is a big shock so try to be gentle with yourself and come and talk to us whenever you want xx

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Hi Lynn, thanks for all the pm help. so sorry to hear about your pain, hope it gets sorted asasp.

Take care Marie xxx

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Hi All

I was here around 4 and 1/2 years ago and did not expect to return. This time not so good. I was first diagnosed when I was 38, treatment was lumpectomy, radiotherapy and tamoxifen. The past 12 months or so Ive had mastitis twice treated with antiobiotics the past few weeks have had a dry niggling cough. When I went for my annual check i was sent for an x-ray which come back looking okay apart from "fluffy shadows" but no masses evident. Was not too worried as though most probably an infection? Sent for CT Contrast on chest and abomen 2 days later, I receive the devasting news of the spread. I start pallative Chemo next week. Worried and scared.

Reading these threads is unbelievable how many women are going through this ... warriors I salute everyone xxx

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Hi lovely ladies,

Just returned from my onc appointment - all seems to be well & good thank goodness. Continue with herceptin, denosumab & exemestane until a CT in Aug. Also told I can go on my holiday in July - watching the Tour de France, got to get my fix of men in lycra! Now I have to ring for insurance - MIA have been very good for last few holidays. And, amazingly enough my PIP claim came through this week!!!!

Sorry to hear about you Lynneq - it was lovely to meet up with you last week on the IoW and I hope you get sorted out promptly.

Thinking of everyone living with this horrid disease and wishing you all the best.

Love Helen x

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Re: Bone mets - please join in

Hi everyone I went for my routine appointment with my onc yesterday. Whilst I was waiting to go in I saw several ladies wiping away tears as they came out. By the time I went in I was feeling very sad for them and all of us. This  week there has been a lot of positive news about cancer,a new radiotherapy  bullet treatment,  immune therpy treatment and  breast cancet treatment to stop metastases.  This probably won't  help me but maybe will help our daughters or grandaughters so trying to be poditive now.Cancer is a bummer though!

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Thanks Belinda. I think that the Gabapentin is doing the trick. Onc did say thst I was not on a particularly high dose so could add more if necessary.
GP prescribed Amitriptyline for me a couple of years ago but I didn't react well to them. I do however have 2 friends who swear by them.
Thanks also Nicky & Janette. My husband is coming with me when I go for the scan...he won't come into the centre with me - my choice - but he will take me out for a nice meal afterwards!
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Hi Lynn, a really common place for bone mets to be found is your cervical spine. I have mets there, sounds as though the medics (may) be checking this area out in case some rads might be of help to me? If Gabapentin doesn't help, it made my nerve pain worse (but others find it really effective!) there's Amitriptyline. X
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Re: Bone mets - please join in

Hi Lynn
Sorry you have this worry and you know you can share all those anxieties with us on here as we do all understand. I hope that nothing untoward shows up on the scan and it's good that your whole team has pushed this forward, if nothing else but to stop the waiting around. I too get lots of aches and pains and have previously asked for a brain scan as I was convinced I had brain mets, but that was over two years ago! This disease plays such nasty tricks on us and as Janette has said her aches which she was so worried about turned out to have a totally different reason. Good luck with the MRI, definitely not my favourite experience as it's so bloomin noisy. I feel like I'm in a sci-fi film and they are practicing all the sound effects they can possibly get their hands on 😉
Hi to all other mets ladies, I hope everyone is coping with treatments, scans and the waiting for results. Thinking of Bev and her family.
Nicky x

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Morning ladies,

Lynn, I wouldn't worry too much it is more than likely going to confirm that it is a trapped nerve, do you remember my painful shoulder/arm? They said it was a rotator cuff injury but still did an MRI just to confirm this, but like you say  it is still worrying isn't it. You have a fab GP etc, I was also dreading the MRI as have heard scary stories about them but I just closed my eyes the whole time and and sang my favourite songs in my head ☺ good luck and keep us posted on your results.

Off to work now ladies hope you all have a lovely day 

Hugs Janette xxxxxxx 

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Good Morning everyone, hope you're all as well as you can be.

I'd like to share with you my latest experience which is both reassuring and a little scary.

About 4 weeks ago I developed really painful neck and back of head pain. We were away at the time staying with family and they were so bad that I was awake all night and almost got my husband to take me to A& E to see if they would give me stronger pain killers. Got home next day, made appt with GP (they're very good - saw me after surgery). GP gave me Gabapentin and diagnosed trapped nerve. She referred me to physio who was reluctant to do anything without seeing scans. GP told me this a week later when I saw her for more Gabapentin....which were easing the pain but not completely. GP told me they'd requested my previous scans and physio appt would come through soon. We went away for a week GP said to increase Gabapentin if pain was a bother on hols - Saw physio just before we went away who gave me some simple exercises. On return had a letter from Onc saying that due to 'clinician availability' they were bringing my next consultation - due early July - forward. I saw him Monday, he told me that they'd brought my appt forward because the GP had contacted him asking if this could be cancer related, since I do have skull mets.

He then asked lots of questions, got me to do lots of arm lifting and neck turning and suggested MRI scan within a couple of weeks. Also suggested I increase dosage of Gabapentin - the pain starts to reoccur before my next lot is due. Had a phone call yesterday - day after seeing Onc- from MRI people asking me to go in for scan tomorrow evening at 6.15.

ONC was reassuring, my tumour markers are stable and last bone scan showed that my bone mets are stable, the report didn't mention the skull mets. Says may be 'wear and tear' not necessarily cancer related.

Whilst I am reassured by their response - all of them - GP, Onc and Mri people and I know some of you ladies have problems with 'laid back' medics ..... I also find it all a bit scary.

Sorry for long post, haven't mentioned it to family - apart from husband.

I certainly have no grumbles with the NHS...i have only ever had one MRI scan, on my breasts and it was awful but it's what we have to do isn't it.
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Re: Bone mets - please join in

Good morning everyone
Shiba, a big welcome to you. I can't help with skull mets but hoping you don't have to wait too long for your results and treatment plan.
Hope your back is improving again today Chocolates.
Good luck to anyone having tests or getting results this week
LD x
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Hi again shiba, I don't know if you may have already found them but a poster, sadly no longer here, Lemongrove, was very knowledgeable about treatments for brain mets. If you do have brain mets confirmed that is. She knew lots about cyber knife treatments which I understand to be a kinder option to whole brain rads and also has the advantage of being able to be repeated if necessary. This waiting must be very stressful for you. Have chosen a very stylish cup with lid and straw for you at the cafe. X
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Morning lovely ladies, it's a beautiful morning here in Manchester, Hope you are all okay, I'm off to Beechwood cancer centre today for my weekly meeting with the ladies and having reflexology for the first time.

My hubby has gone off to work this morning proud to be wearing his sbc pin on his work polo top 😊

Hugs Janette xxxxxxx 

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Hi all, thanks for your welcome to this thread. I know that its been hard and difficult for all on here these last few months. Your posts have helped more than you can imagine. I am sure i am only one of many who read more than post and get reassurance from them. Thinking of you bev xx

 

Chocolates thanks for bumping brain mets thread, although ct scan showed skull problems in brain some of symptoms are similar. The mri is to see whether i also have brain mets but as they arn't confirmed yet i am coping by facing one day at time.

 

Hi, catlady, might pop over to cyber cafe later to check whether frothy hot chocolate can be served in cups with a lid and a straw as one symptom is loosing control of hand and don't want to drown anyone .

 

Belinda i was told rads might be considered. I am on hormone treatment and denusomab for bone mets plus painkillers. Have also been put on high dose steroids to reduce the pressure on brain.

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Hello Helen, thank you so much for letting us know about Bev (I have been thinking of her a lot lately).  She was so supportive to me when I first started on the Cap, and to all the other ladies on the Forum.  Thanks, too, Belinda, for passing on all our messages and best wishes and kind thoughts. Hugs, Barton.x

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Chocolate I agree love, we have lost too many wonderful ladies these last few weeks, it's heartbreaking and it makes it so hard to remain positive!!

But we cannot let this ugly disease win, I am determined to live life to the full and enjoy my time with my family and friends.

Take care everyone huge hugs Janette xxxxxxx 

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I hate cancer, it's been such a difficult time for us hasn't it ladies. But I'm trying to remain positive and realise that without us all it would be even harder. Thank you everyone xxx
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Hi all, just to let you know I'm starting a thread for sending on our love and thoughts to Bev. I'm going to print off and post the messages onto her. So would really love you to visit here,
http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Messages-for-Bev/m-p/948265#U94...
Or I can copy the messages already posted from here.
Belinda. X
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Welcome Shiba, sorry I can't really advice you on skull/brain mets but I'm sure their is someone on here who can and also as Chocs has said you can contact the helpline.

Take care Janette xxxx 

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Hello shiba, do get back to us when you have the plan. I can think of a couple of ladies who had rads to skull mets. Are you on any treatment for your bone mets yet? We are a friendly, supportive bunch but so sorry you have to join us. X
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Morning ladies, thank you Helen for letting us know about Bev, so sorry to hear this its unfair.

Bev im sending you all my love and hugs, try to stay strong, I am sure you will see your daughter's ring and it will be a very proud moment for you.

 

Hugs Janette xxxxxxx 

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Dear Bev

 

I am so sorry to hear the news. `I hope you are comfortable. You have been such a support for all the women here, please take care and i will be thinking of you.  ss xxx

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Oh Helen, I'm so sorry to hear this. I will send you a PM.
Dear Bev, I feel certain you will get to see Laura's ring, I hope you are comfortable, not in pain. And are being well cared for by the doctors. Sending love and strength to you and your family. Love Belinda. X
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Ladies,I've had contact with our lovely Bev.
Her last treatment Vinorelbine has also failed.
The onc has given her just months. She is extremely tired and has a collapsed lung too.
Bev tells me she doesn't even have the strength to post.
She's very worried she won't see her daughters engagement ring as Laura's on holiday.
This is truly breaking my heart writing and telling you all this very sad news.
Bev,we are all here for you xxxx you are a truly lovely lady and friend.
Massive hugs coming your way from all of us. Helen xxxxxxxxxxxxxx
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Hi shiba

 

Welcome to the forum.  I'm sure you'll find lots of information and support here from fellow members.

 

As Chocolates said you might also find it helpful to call our Helpline.  Opening times are 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000

 

Very best wishes

 

Janet

BCC Moderator

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Shiba ,welcome to our mad group. You will get lots of support and advice from the ladies on here as they are FANTASTIC !
We also have the cyber cafe which is a C free zone where we can be silly and have a laugh.
So welcome and huge hugs,Helen xxxxx
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Morning ladies, and welcome Shiba. Sorry you've had to join us but we are here and ready to offer you support and advice where we can. Between us we have a wealth of knowledge and of course the bcc helpline is very very good. I've bumped the brain mets thread up for you just in case there is something there that might help you. Hopefully someone will be along soon to offer you some more advice.

My back is a bit better this morning - taking meds for it so I can keep it moving. The pain has moved slightly which suggests to me it's just my normal back pains playing up so hopefully will be better soon. Lovely day here down south ready for washing and ironing as you do.

Huge hugs everyone,

H xx
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Hi, i have been lurking in the background for a few years and found lots of help and reassurance and i'm very grateful. I wonder if i might join in on your thread and ask if any ladies have experience or advice on an issue i can't seem to find any info on.  Bit of background info (extensive and widespread bone mets dx 2010). I have just been diagnosed with skull mets that are growing into brain am waiting on mri and result of treatment plan after mdt'm and wondered if anyone has any experience of this or knows of where i might find some, thanks for any help you may have. Love S xx

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Ah hope the back sorts itself out in a couple of days Chocs. Mermaid I will remember that exercise! Really helpful. Also Edwina's counting. Glad you had such a nice member of staff C.
Have a good weekend everyone. 🙂 x
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Morning ladies, it's taken me ages to catch up with you all and it's only been a week. Welcome home Janette, so pleased you had a fab time. Now you can rest and recover - I'd have a cooked breakfast everyday if I could - yum xxx
Orse - I am totally with you on the scan. I'm a complete mess. Last time I had a bone scan I was in such a state that they did my body and then went to a different machine to do my head which did it from the side which was much better. Couldn't get out there quick enough though. I think I dread the scan more than the results - I know but I also think I'm going to die. It's dreadful xx

I've had a really long week - so sorry for not posting - I certainly don't want to add to people's worries. Work is hectic and I have developed a bad back from Thursday. I've always suffered from back pain so nothing new but trying to work, keep the family going and smiling at the same time has been difficult. I'm not going to get it checked out yet as I've had many a trouble with my back but I do promise if it's still bad in a weeks time I'll get it checked. I'm trying to keep moving so it doesn't seize up but I'm so tired I want to sit down. To all you lovely ladies who have spine mets I take my hat off to you - mine is small in comparison xx
Right time to get up again. Going to walk over to the cafe for a massage from Mr gc. That will definitely make me feel better - although as I haven't been in for a week I need to catch up with what's been going on!!!

Huge hugs ladies,
Hxxx
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Hello everyone...my hospital offer an eye mask to put on the sort you can sleep in to keep out the light. I use that because even if I open my eyes I can't see the plate above me. Also in Yoga we do a breath exercise to calm the mind and I use that when having scans. Breathe in slowly to count of 5 then hold for 5. Then slowly exhale to 5 and hold again for 5. Keep repeating the cycle or even increase to 6 or more seconds instead of 5. Hope that makes sense, I even use it when in the waiting room for appointments. Wishing you all a peaceful sunny weekend. Xxx
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Helen, I had a pm from her Wednesday.
Marie xxx
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Thank you,juile, I sent her a text earlier this evening and it's odd she didn't answer as she always dose. It's just me being mother hen and worrying.
Hugs,Helen xxxx
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Hi Helen

 

Chocolates was on Chat on Tuesday. I think she's had a busy week at work and will probably be on at the weekend to put our minds at rest xx

 

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Hi,ladies,has anybody heard from chocolate. Just worried she's been a bit quiet on forum.
Xx
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Corrrine I'm so pleased you had  an understanding and nice radiologist, it is good to know we still have staff in NHS that will go that extra mile. Yes, I think it would be lovely to give her the praise she deserves and let the bosses know they have a gem. Hope you haven't got to wait too long for results.

 

Edwina, I do that too!

 

I've got CT scans on Monday, don't get results till 6th July as it seems to take for ever to get the scans reported!

 

Hope everyone manages to have as good a weekend as possible

xxx

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Corinne,I told the sister that two nurses on ward were fantastic. I also told the two nurses they were fantastic at their jobs and they were genuinely taken aback . Everybody needs to feel appreciated and as you said it rarely happens these days.
Xxxxxx

Edwina, I done that too. Xxxxx
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Hi everyone...with my scans I always try to count it out, so if they say it will take ten minutes I try to count  to six hundred usually it's over before I 

get there does  that sound daft!  I suppose I am going purposely slowly so I can tell myself it wasn't  too bad....such a big kidder!

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Hi Helen..,

Tbh I think I may ring the Hosp, it's rare that people get the acknowlememt / praise they deserve nowadays...


C xx
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Corinne,so glad it went well for you xxxxx
What a lovely radiography lady
If I were you I'd tell the hospital how nice and caring she was.
Huge hugs,Helen xxxxxx
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Hi ladies..

Well the nitemare that is THE bone scan has now been completed..

I had the loveliest radiographer ever... She wudnt let the plate come anywhere near my face.. Put her finger in the way which apparently it senses and won't go any further.. She made sure I was happy with the distance that it was and only gently moved it down if I agreed and when I had enough no argument... She even let me turn my head so I was facing my ex not the plate.. .. And held my hand all the way through... I can't say it was pleasant and I can't say I didn't cry... But that thoughtful kind lady made it doable for me!!!!

The nhs does still have some very dedicated caring people..

Thanks for all your advice and for thoughts- and I'm glad it's not just me that has a 'thing' about scans... Just the wait for results now!!!

Corinne xxxxxx
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Hope it goes ok for you Orse.  

 

Being scanned (any kind!) is a strange and horrid experience, and I always feel incredibly lonely lying there.  for me the worst bit is if it's with contrast because my veins totally disappear as soon as the word canulla is mentioned.  Not to mention that weird wet your pants sensation!!

 

I just hang on to the fact it is will be soon over, my mantra is "this too will pass" (hope I'm not being too corny).

 

Just wanted to say you are in good company, and we all sympathise.

 

SHP x

 

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Oh,Belinda ,I didn't know that about breathing great tip.
Helen xxx
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Budge up ladies, let me join you on the bench of those who really dislike bone scans, yes especially when it passes over the face. I tend to over breathe like mad as it's sensitive to your breathing (isn't it?) and it moves a little further away when you do. Take care. X
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Dear Orse,

You are not a whimp, we have to put ourselves through so much with this blasted disease, and are likely to have at least one thing that really gets us.

I was going to suggest music too. As the bone scan isn't like some of the others where you cant wear metal etc I would think you should be able to take your music. Play your best loved songs, close your eyes and try to imagine yourself at one of your favourite places doing something really nice.

Hope it goes better than you are fearing xx