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Bone mets - please join in

Ladywolf
Member

Re: Bone mets - please join in

Hi ladies

Thanks for the reply... Surgeon is insisting that it's done via GA.. Would much prefer local.. Glad it doesn't hurt too much.. And that hunt the vein will disappear.. Took chemo nurse two hrs to fit cannula last time😲

Gonna be starving by this evening!! 🍕🍐🍑🍓🍪.. Why is it when someone tells u not to eat u need too!!!

Wolfie xx
JoolsW
Member

Re: Bone mets - please join in

Hi Ladywolf

i had my portacath fitted in January. Like JulieD I had mine fitted under a local anaesthetic and it was fine. I went straight from the theatre having it fitted down to the day unit for my first chemo through it.  Again like JulieD says it can be a little sore (although I found it just felt a bit odd) for first couple of days but you soon get use to it and it becomes just part of you and you don't notice it's there. Good luck with it all xx Julia 

JulieD
Community Champion

Re: Bone mets - please join in

Ladywolf, I had a port fitted about 3 or 4 years ago, no sedation just local anaesthetic! It's so much better than having to hunt the vein! I've got mine below the collar bone that's often the chosen site but I know others have different places. It may feel a little sore for a couple of days but nothing major, they actually used my port within days of installation. Good luck hope you don't get too hungry waiting xx

rosie53
Member

Re: Bone mets - please join in

Springsummer, good luck with your results, I'm sure it will turn out to be an infection and all will be fine.

Podry, that's fantastic news, really pleased for you!!!

Morning to everyone hope you are all keeping well 

Hugs Janette xxxxxxx 

Ladywolf
Member

Re: Bone mets - please join in

Hi ladies

Anyone got a portacath fitted??? I'm due to have operation to fit one this afternoon.. Any advice on where to fit? And if it hurts - I'm a wimp 😫😫😫
Surgeon is insisting on GA, so no food now until tonight!!

Wolfie xx
scoobiesue
Member

Re: Bone mets - please join in

DElighted for you Podry. Enjoy lots of celebratory drinks. xx

JulieD
Community Champion

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Glad you did share Podry/Audrey, we do like hearing good news both from women who have secondaries and those like you who have (thank God!) been spared being a member of the gang no-one really wants to join! All good news lifts our spirits and I'm sure you'll understand when I say I'm so glad you are not joining us

Podry
Member

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Spoiler
Spoiler
 

Thanks SS, glad to hear that, I was worried that since it is such a contrast to others situations here, It may be insensitive. But wanted to share since people have been supportive. 

 

springsummer
Member

Re: Bone mets - please join in

Podry good news like yours really bucks me up. Go girl!

S

Podry
Member

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Thanks girls for your good wishes, I have a celebration drink planned with my firends over the next two nights. Glad mine was a happy result, sorry so many are not. But I (these last few weeks) and many others are very lucky to have these forums to bring support and hope at dark times.  Thank you all again so very much, virtual {{hugs}} all round to those who need them and virtual high fives for those who deserve them. Everyone here! Take care girls and thanks again! Xxx

springsummer
Member

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Hi JulieD it does sound like infection doesn't it? (needing to be reassured).  Podry - well done! Congratulations. Now just forget about it and  enjoy xxxxx  

JulieD
Community Champion

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Hi SS, glad you were seen today and hope the results tomorrow will show infection, with sore throat it sounds likely and if you've already started anti biotics hopefully you'll shift it quickly. Good luck tomorrow will be thinking of you x

 

JulieD
Community Champion

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Audrey that is such very good news! So happy for you! Have a celebratory drink or something - cheers! xx

springsummer
Member

Re: Bone mets - please join in

Hello everyone

 

an update on my breathlessness.

 

Went into the Marsden today and they did an ecg and an X ray and took bloods for infection. White cells are fine, heart fine but still waiting for the results of the infection. So tomorrow morning first thing need to go back in for an emergency  CT scan to rule out a blood clot and wait for the infection results. So, either a blood clot, infection or the cancer has progressed. The last one is the only one I am worried about but I think it is too soon to have se - the cancer would have to be pretty nippy . Have started taking antibiotics today and have a bit of a sore throat which is good. Isn't it? means more likely to be an infection?

 

Thanks for telling me to phone them. Would not have dreamed of it otherwise. Just thought part of dealing with this s....t disease. Maybe I'm to stoic. Love SS 

Bucks Lass
Member

Re: Bone mets - please join in

Hi

 

i have been on letrazol for about two years and solved the nighty leg cramps by drinking a glass of tonic water every day but haven't worked out how to cure feeling as though I'm being boiled up at some point each night. When everything was getting me down with the dragging pain in my back the end of last year my oncologist suggested palliative radio treatment in January. The effects the first week were truly dreadful but since then I have hardly had any pain at all so worth asking about. I think we all have off days when you feel all weepy but they will pass.

 

Another tip I've found very relaxing is adult colouring books, particular garden ones. Best pens for it are Faber Castell Pitt artist pens from a company called Tiger Pens. I love knitting too.

Bucks Lass
Member

Re: Bone mets - please join in

Hi 

 

I have had bone cancer which developed after being all clear from breast cancer for several years. I was diagnosed a couple of years ago and after lots of ups and downs reasonably up now. Two things helped along the way, a blood transfusion when I was feeling absolutely dreadful and some palliative radio treatment last January which has given huge relief from the back pain. Onc says it may not come back for up to a year but I shan't hesitate to have it again even though the effects are really dreadful for a week afterwards.

 

i am having monthly Denusab injections, letrazol and Adcal tabs daily plus paracetamol. Managed to keep mostly off codeine since the radio treatment.

 

would recommend breaks away as often as you can afford it as it helps to keep you cheerful.

 

Anne

belinda
Member

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Wow Audrey, what fantastic news, after all these weeks! So very pleased for you. X
Podry
Member

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Hi ladies, 

It has been so nice to read today of positive results but also I'm sad to hear of those who are having difficult times right now. I wish  everyone well with what is going on for them individually right now.

 

I finally got my full results, following an xray then Bone scan which strongly suggested bone mets, I had an MRI last Friday, after a stressful day around breast care nurse trying to put my appointment back another week, my GP rang me directly with the MRI results.  It's negative, I do not have bone mets! Obviously I am delighted (understatement of the century) but very thankful to all who offered support on here during the last few weeks of uncertainty (8weeks in total!). 

 

Thank-you again, I am sending hugs and good wishes to every one of you brave women who are in the group that no one would choose to be part of.

 

Audrey x

 

springsummer
Member

Re: Bone mets - please join in

thanks everyone. Called the team and am waiting for them to get back to me! Bit worried now! I also have lung mets but this feels different. Apart from that I feel ok.....

funnyface
Community Champion

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Edwina, Fantastic news!!  You deserve a special treat! Spoil yourself! FF

funnyface
Community Champion

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Springsummer, Please do contact your doctor. Back in July all of a sudden I was extremely short of breath. I couldn't walk 45 steps without having to sit down. I have lung mets and though t my chemo had failed and that things had got majorly worse. Well, the chemo had failed and I was slightly worse. The onc said the chemo had  given me a toxic reaction. He out me on 20mg prednisone and stopped the chemo. I took a 6 week break, then started a new treatment. I had been on the other chem for 8 months when it happened but from what I understand it can happen anytime. I'm breathing better now than I was last summer. Hoping this means I'm healed and maybe the new treatment is kicking a$$! Good luck! FF

springsummer
Member

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ok will do - doing it now!  ss

Downbutnotout
Member

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Springsummer - please contact your chemo unit straight away about your symptoms. If it's nothing, then all well and good, but you need to make sure all is ok. I did really well on Carboplatin but needed a few blood transfusions because it really hammered my haemoglobin, which caused breathlessness, but I also started to get palpitations which were the result of low magnesium - which can be a very serious problem so you need to discuss it with your nurses.

X

scoobiesue
Member

Re: Bone mets - please join in

Edwina . Terific news. Hope you keep well. Sue xx

springsummer
Member

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hello Edwina 

 

really good news! yes. God, what an awful thing to go through though. I am recovering from my first round of Carboplatin. Feeling much better today. have a tight feeling in my chest though and breathless when i do anything.Is this side effects? Does anyone know? Feels like I imagine a heart attack to feel like. Sure it is not that though. About to lose my hair again so trying  to sort out a wig that doesn't look too much like a wig.... worst thing for me about chemo is the boredom when you are too unwell to do anything. ss xx

edwina64
Member

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Hi stresshead i gave only ever had 2 bone . scans one first off and another 1 year later onc said not good because you have to gave radioactive inj. Have had loads of ct scans and they can tell from that i think. Thanks everyone for your good wishes hugs to everyone x

 

 

 

 

 

 

JulieD
Community Champion

Re: Bone mets - please join in

Great news Edwina! Smiley LOL

 

I've never had a PET scan,they are more expensive and not all hospitals have them. They are  more detailed but having said that they can also be more difficult to be interpreted as you are injected with a different type of

fluid and it's not always easy to tell exactly what type of activity is showing.I've only had a couple of bone scans during my Sec dx the rest have been CT scans, which do report on organs (which luckliy for me are ok) but also tells me of stability/changes to bones.

rosie53
Member

Re: Bone mets - please join in

Hi ladies,

Edwina that's great news, I bet you feel so relieved now!! 

Stresshead, I have a bone scan every 6 months and I have a CT every 3 months, never had a PET scan.

Hugs to all Janette xxxx 

belinda
Member

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Great news Edwina. X
Marirose
Member

Re: Bone mets - please join in

Hi Edwina

Great news I bet you are really relieved now you can settle down a little and best wishes for your new treatment.

Hi Stresshead 

Have you read my recent posts the CT scans show mets on bones so don't worry that they may not always give you confidence but they can see any changes. I questioned it myself but after the onc and radiologist examined both June's scan and recent MRI slice by slice I now believe them. Apparently Pet scans are more expensive but more thorough not all hospitals have them it seems to be private health care scan I'm not sure someone will proberly tell me I am wrong. My onc doesn't do TM's as she doesn't think they are accurate enough my last onc said they were inconclusive I feel if I went down that road it would confuse me even more. I hope your scan will be ok and I hope you can get some resultion about your pains

Best wishes to all ladies awaiting scans and results xxx

stresshead
Member

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Pleasant...hope yo are feeling a little better now. We all have those days ( me especially, it seems) and understand totally.

 Edwina..geat news...hope a little of your god luck rubs off on all of us.

I wondered if any of you bone mets ladies can help me.......do you have ct scans or pet scans to monitor your mets?

I was led to believe that you needed either a bone scan or a pet scan to detect problems but i'm not sure now: i have skin mets, which are not usually detected on any scan which is really c**p, but i have recently had a lot of aches and pains on my torso and hip (mets are on chest back and abdomen). I am really concerned that my bones might now be affected but when i mentioned it to my onc he said i didnt need a bone scan. I am due to have a scan on Monday and when i asked if it would be a pet i was told no it woud be a ct to check on my organs.Any info would be greatly appreciated. Thank you. x

Lynnq
Member

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Hello Edwina, very pleased to hear your good news.  It must have been such a relief when they told you, especially after such a long wait over  your appt. time.

hope you settle down well on the cape...

edwina64
Member

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Hi everyone...well just got back from my hosp appointment to get results of brain scan. Had to wait one and half hour over app time and was really anxious by time i was called in . Had to see new registrar and not my usuall onc but he said brain scan showed all clear from cancer...hurrah! He assured me that all the problems with my numb lip and chin are all dental and nothing to do with cancer. It's just sinking in now...thats good news right? Anyway can collect new pills tomorrow  (cape) and start taking on Thursday  It's  been 3 months of the toothache saga with no denosemub or pills so glad to get back on to something at last. Can't go back to denosemub for 8 weeks after tooth extraction and have lots of bony aches but hey I am on the upward stretch now! Anyway thanks to everyone for your kind wishes and valuable info which has really kept me going xxxxx

scoobiesue
Member

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Lynnq. Thank you so much for your encouraging post. I was diaognosed 5mths ago. After my femur fractured. Spent the last few months either in tears or denial. I am taking Letrozole and my bone strenghtening tablets daily. Hope you continue to keep well.Thanks to all you ladies who give such hope to us newbies. Love to you all Sue x

Lynnq
Member

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Hello Pleasant.  really sorry that you are feeling so down. I  haven't been posting much lately been very busy but I read your posts snd thought I,d respond.

I have bone mets in my skull, sternum and upper few ribs.  I was diagnosed Oct 2012 with the bone mets just six weeks or so after they discovered my primary.  I have had bilateral Mx - had primary cancer in both breasts.

 

i have been on Letrozole ever since and a four weekly Zometa infusion.  I used to have 'tingly mets' after my Zometa sometimes very achey and I would also be very tired.   I used to tell myself that it was the Zometa giving the cancer a good kicking.  My  Onc doesn't do regular scans, he says that - in my case - tumour markers are a good indication.  They reduced from over 400 to around 37 in the first 18 months or so and since then have remained at around 37.  I don't seem to get the tingly mets anymore either.

 

Recently  I Had to have an mri scan, i had bad shoulder and neck pain so they decided to check it out....it turned out to be a trapped nerve.

 

however the report came back from the Mri stating  that they could not find any cancer, and were it not for the fact that the radiographer had seen my scan of two years ago he would be dubious that there had ever been cancer.   When I asked what it meant he said that it showed that the treatment was working and that they would continue with it.  He would not guarantee that there wasn't any tiny cells still there.  I also had 'shadows'' in my peritoneal area which are no longer showing.  

I am still on Letrozole and Zometa.  I use paracetamol and naproxen for my aches snd pains.  

During the early stages I felt very much like you, very scared but I have had some lovely times and holidays with my family, and try to live for the day!!!  I am now 65 years old.

 

Marirose
Member

asant Re: Bone mets - please join in

Hi everyone

Weather awful here. Pleasant1 hope you are feeling better about your tumour twitches I get them from time to time they are scary but scans show no movement there I do have skin mets around it and they often twitch too.

Edwina I do hope you are feeling better with your pain and I will be wishing you luck for tomorrow with your scan results.

Also you Jan good luck with  your results

Downbutnotout I do hope the sickness is now slowing down it's an awful feeling to feel sick all the time.

Love to all who are waiting for result and love to everyone xxx

 

 

 

 

 

 

 

rosie53
Member

Re: Bone mets - please join in

Morning ladies.

Hi Pleasant1, hope your feeling a little better this morning, it's ok to have your "down days" we are dealing with a lot living with this horrible disease!! As for your pain, give your meds time to kick in, I'm on tamoxifen, denosumab and zoladex injections, and now I don't really have a great deal of pain it's more achey days I get now and then really, however my left hip/leg  (where I have mets) as been a bugger this weekend!! This time last year I also would be freaking out with worry but now I don't stress half as much, my onc gave me a good talking to, she explained that just because I have more pain sometimes it doesn't necessarily mean that it is getting worse!! Its the nature of the beast unfortunately and some days can be rough and I am learning to understand this. Please try to  not to let your mind run away with its self (easy to say) could it be the feeling your getting in your stomach be nerves because your worrying???

Take care and be kind to yourself sending you Hugs Janette xxxxxxx 

Podry
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Thanks Red, yes the women on here ar a strong example of positivity in action and no one wantsto be in the club.  SOrry to hear about your own situation too. My kids were young at initial diagnosis (yougest 7yrs). I had Letrozole initially as a follow on from Tamoxifen but I asked to be changed due to join pain and have been on Extamestane since with much less problems.  Hope it settles or your onc can change you to soething that is asier to cope with.

edwina64
Member

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Hi pleasant I have 'tingling tumours ' so I jnow what you mean. Especially where I have mets to my ribs but scan shows all ok. My letrozole didn't  kick in for about 6 weeks my bc nurse confirmed  this but you do get lots of aches with it so dont think it's  a cancer spread, prob just s/e. Still it all gets you down at times hope you feel better soon. I had brain scan Fri get results tues scared of the results but know have to grin and bear it. Stumbling from one situation to another!  

Pleasant1
Member

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Hello ladies

 

Really fed up with my tumour discomfort and tinglings. The aches seem to get worse by the day. Do any of you have painful/uncomfortable or tingling tumours? Wondering if it's possibly Letrozole doing a good job, or something sinister because it feels like it's growing from my ribs into my stomach area, which is really freaking me out.

 

I won't be scanned until end of September so will be worrying for weeks at this rate. I've only been on Letrozole for a month, along with having now had two Zoladex and dynosomab injections.

 

Any tips for how you've managed to struggle through the last 12-14 years Dawn? You must be one amazingly strong woman. I'm not doing well believing I'll get anywhere near as long, particularly feeling so uncomfortable and down-hearted. Saw Inside Out today. I really feel my 'Joy' is lost in the deep pit of no return and I'm letting total sadness overwhelm me.

 

Sorry to be so down. The weather down south is awful, but that's not it because if I had my health I'd be happy with any old weather and any old situation. Just want to be well and be able to do and enjoy physical activity instead of constant bodily aches and misery.   😞  X

Red
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I am in South Wales by the way.

Red
Member

Re: Bone mets - please join in

Thank you Dawn. That does help a bit. I guess it's not knowing and then remembering the last time that is freaking me out. I am also going to have Denosumab and continuing with Herceptin so here's hoping I can help someone else like you've helped me in 12/14 years time.

dawnhc
Member

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Hi Red, I'm not sure if this is any help but like Belinda I have been on a number of different chemos. Taxotere I found very hard going in my earlier days of diagnosis when it was quite a new drug. Back then we were kept in hospital overnight each time! Vinorelbine was one of the chemos I had after 2ndary dx with bone met and that I found very manageable. My bc is not hormonal but I was on just herceptin & bisphosphonates for 12/14 years. Make sure if you have any side effects from the vinorelbine that you let your onc know straight away - it's usually best to get on top of sickness etc. quickly and if one thing doesn't work for you there are plenty of others you can be given. Don't know where you live but down south if only the sun would shine we might all feel a bit better. xxxxx

 

Dawn

belinda
Member

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Hi, Capecitabine and Doxorubicin. X
Red
Member

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Thanks Belinda. Which other chemos did you have?

belinda
Member

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Hi Red, Tax is a really tough chemo, I had Paclitaxol and felt really awful throughout. You may find Vinorelbine so much easier, the other two chemotherapies I've had I found much easier than Paclitaxol. Good Luck. X

Red
Member

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Hi All. Feeling really depressed this morning as can't stop thinking about starting Vinolerbine chemo next week. Has anyone been on just Herceptin and hormone treatment for bone mets? I was on Herceptin and Anastrozole for 6 years then mets appeared. I really don't want to feel ill like I did on the Taxotere. Sorry to be so miserable. Red x

Pleasant1
Member

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Happy Saturday eve.

 

Here on the Prosecco, having remained tea total since secondary diagnosis mid June.

 

Just wondering if anyone's experienced tingly tumours since taking Letrozole and whether anyone feels like hazarding a guess whether this may be a good or bad sign of hormonals working. I won't get scanned for another month and have only been taking Letrozole for a month, along with having Zoladex.

 

I can't actually type properly on this fizz. Want to write a bit more but brain and hand co-ordination's not in sinc.

 

Laterz!

 

X

Red
Member

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Hi Podry. We are both in a similar position. I have just been diagnosed with bone mets to my acromion and am starting chemo next week. The onc assured me that the side effects with this one (Vinolerbine) are not as bad as the FEC and Taxotere but I'll let you know next week. I too was diagnosed with primary in 2005 aged 36, with a 1 year old, with a recurrence to the neck nodes in 2008. I thought I'd left it all behind but no such luck. Like you I am frightened, not sleeping properly and terrified for my children but I have taken great comfort in the stories in this post from long term survivors. I would never wish to be part of this club but now that I am, I am so grateful to all you ladies who have replied to me already and given me such hope. Together we are strong.

Red x

Podry
Member

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Hi again all, with so many people on here you will not remember me, I joined this group about 4/5 weeks ago I think; I am undergoing tests to confirm if I have a bone met. I was initially dx in April 2005 10 years ago aged 39. Pain, which it truns out has been caused by a rotator cuff problem, prompted tests  initially an X-Ray showing a shadow on the acromium (bone in hsoulder) then bone scans which when intially were report to Gp said while not 100% it looked like a met (only one though) then MDT asked for an MRI which happened yesterday (wow they're no fun, I thought for a moment I wouldnt be able to do it! I felt so claustrophobic even though I am not!) anyway the MDT will meet on Thursday and I have to see the onc in the afternoon for results.  I am beside myself with worry, not sleeping, fretting and convincing my self 100% in each direction every passing minute. The waiting is so difficult and started with that first xray way back on 9th July. 

I have been so encouraged to read of the positive stories on here regarding how long people have lived with this god awful condition but equally I am not unaware of the personal and physical costs of this. Regardless of the outcome on Thursday I'm gonna get started on preparing and completing my bucket list. Hugs to all who need them and thanks for listening/reading. It feels a bit indulgent to rant on here when so many are dealing with such difficult situations when I am essentially 'well'. I hope and pray younall have a good week end. Audrey x