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Bone mets - please join in

Chocolates
Member

Re: Bone mets - please join in

Orse, I've got all my fingers crossed for you - it is so difficult when having scans and results - especially now the kids are at home. Sometimes they are a welcome distraction but at other times they can be very difficult to cope with. Is there someone who could help or take them out for you so you get some time alone to just gather your thoughts?
Glo - I hope your scan goes well - that is a while for results - are you planning anything in between to pass the time?
Aunico - glad you are now out of hospital - sounds a dreadful experience. I hope that this reduced treatment continues to work for you and there are no more infections xxx

Ladies, I haven't heard from Helen for a couple of days. I'm just hoping that the taxol has made her very tired and so she's resting a lot. Fingers crossed everyone xxx

I'm doing some sorting out today at home - a good clean is needed so this will keep me occupied. Hope marie is having a lovely hol.
Good luck to everyone else having scans/results/treatments this week.

Huge hugs,
Hxxx
Orse1970
Member

Re: Bone mets - please join in

Hi Glo,

Thanks for the reply.. And the hugs... Need them right now!!
Sending you hugs for Wednesday... Wot a nitemare tho having to wait until 17/8 for results.... At least I get mine over in one.. Ish anyway!!
Bet you are really plsd with the results from your review.. Hoping you c has and continues to be nuked by the chemo.. My TM are and always have been within normal range, oncologist says just not going to be an indicator for me..
C xxx
aunico
Member

Re: Bone mets - please join in

Hi it's the type of infection they said I caught. Pretty bad apparently. I'll chat to them Wednesday as I'm pretty gutted that I only lasted 4 weeks on it!

 

Vicky

Glo
Member

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I know how you feel! CT scan for me Wed, after 9 sesions of taxol! Had a review after 5 when my TM had dropped quite a lot (for me) and my liver tests were all better! So onc thinks things are going in right direction! But you never know! Unfortunately my onc is on holiday until 17/8 so don't know when I will get scan results!
Virtually hugs and hand holding coming up!
Glo xxx

Orse1970
Member

Re: Bone mets - please join in

Hi ladies

I've got a crap week coming up.. I have a CT scan tomorrow and and appt with my oncologist on Wednesday..

To say I'm scared doesn't even touch the sides.. This is my first chemo since knowing about all my mets.. And I'm petrified that the chemo isn't working, and that the cancer is spreading.. I've noticed a reduction in my skin mets, but that's not reassuring me at all..
I know it doesn't help but all I'm doing is crying or shouting at my family - I feel so sorry for them!!

I've learnt to cope with the day to day life but when Hosp appts loom I go to pieces..

Any of you lovely ladies have any coping strategies?? I feel like just staying in my bed, but it's the school hols and I have to try to function for them.

Thinking of everyone else who is going thru a tough time at the moment, esp Helen who helped me during my mets diagnoses...

C xxxx


stresshead
Member

Re: Bone mets - please join in

Have missed quite a few days on the forum and was devasated to hear about our lovely Helen. It seems there are a lot of us struggling at the moment but none more than her. She is an absolute diamond and my thoughts and prayers are with her for a good response to the treatment. Thanks Chocs for the updates.

Best wishes to all.xx

Pleasant1
Member

Re: Bone mets - please join in

geordiex THANK YOU for posting this. She's great. I'll be emailing and flagging her up wherever and whenever I can! Had a stress filled few days and I'm over four pages behind on the forum. All sounds worringly awful for most on here and sending everyone best wishes for as much respite from symptoms as possible.
Much desire to curse and swear as no other words seem to cut it. I need Stephen Fry as a moderator when I'm up! x

Tinkerbelle
Member

Re: Bone mets - please join in

HI all - I hope everyone is as well as they can be.

 

Chocolates - I hope they get you sorted soon; toothache is horrible.  I can't offer any advice re dental treatment as before I was allowed Denosumab I had to have 5 teeth out so not enough left to give problems. I had a maxillofacial scan where you stand up and it goes around your head. Have you had this one already?  You have to put your front teeth over a little mouthpiece and for hygiene purposes they put a little rubber sheath over it (like a mini condom)   Smiley Embarassed.

 

I'm sure there is mention of dental issues in one of the old threads; perhaps they might put your mind at ease a little bit.

 

Please could you also send my love and healing thoughts to Helen?   I'm so sorry to hear that she is so poorly. I have everything crossed for her that this chemo works its magic for her

 

Tink x

Marirose
Member

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Vicky I am on e/e combo what is PCP. I have been on this treatment 12 month now and 4 stables on the CT scan it was very hard to begin with but se get easier as time goes on. There is a thread in the medical and treatment issues and you will find alot of information how other people coped with everolimus and exemestane alot find it difficult because of the se's hope you do ok. Good luck

Jam
Member

Re: Bone mets - please join in

Can't help Vicky but wishing you all the best x
aunico
Member

Re: Bone mets - please join in

Hi all I'm back after a4 week trip to hospital! I have been on everolimus and exestame and managed to react badly and pick up a PCP infection which they're associating with me being on the everolimus. Anyone else come across this before?

 

Disappointed as had only started the drugs about a month ago but they're keeping me on exestame for now. Also disappointed as I always thought my immune system was fairly robust. 😞

 

Vicky

easy_tiger
Member

Re: Bone mets - please join in

Hi Sallyhennypenny, 

 

I'm new to the forum. My amazing mum was diagnosed only a few months ago with breast cancer, with mets to her spine and lung. 

 

Like yourself, she had spinal compression and was given 5 daily radio therapy sessions straight away as a matter of urgency. 

I am so pleased your pain and numbness has gone away - I was wondering, how long roughly after the radiotherapy did it take for you to return almost 100percent back to normal. Thanks x

LemonDrizzle
Member

Re: Bone mets - please join in

Thanks for letting us know about Helen, Chocs. Along with everyone else, I'm willing the taxol to work with the minimum amount of SEs so she can be placed on a trial when necessary x
springsummer
Member

Re: Bone mets - please join in

Dear Chocolate

 

thank you for the update on Helen. I am so sorry to hear the news. Please let her know my thoughts are with her and I am willing she can cope with the Taxol and be able to go on a trial

 

 

Jam
Member

Re: Bone mets - please join in

Edwina hope everything ok just wonder if he's one of these people that try to frighten us and put thoughts in our heads(as if we don't have enough of our own). My dentist said it was quite rare when I discussed it with him and someone I know slightly has just been though it all. So fingers crossed for you xJanetx
Jam
Member

Re: Bone mets - please join in

Just to let you ladies know for future reference my raised calcium level made me ache and hurt everywhere a different place each day and was getting worse no pain relief seemed to work . Lucky for me I had a blood test for my infusion because it is quite dangerous if left. Was given fluids yesterday and responded well, have had more today and they've let me come home as long as I drink and drink and drink. The aches and pains have decreased significantly. And I now realise it was my own fault for not drinking enough especially when it's warm. So if you're told you should drink plenty please do. I will have another blood test on Thursday and hopefully will be able to have my zometa infusion xJanetx
Chocolates
Member

Re: Bone mets - please join in

Oh Edwina, that sounds very scary. I think it might be a good idea to hold on to the fact that he is not sure at the moment. There still could be another explanation. A scan may well confirm that this is nothing worse than a severe infection which has affected the nerves. I know it's silly to say but try not to worry too much. I've got my fingers crossed for some positive news xxxx
edwina64
Member

Re: Bone mets - please join in

Hi everyone, sorry to hear Helen is still suffering praying the chemo will work for her xx

I went to the hosp today to see the facial team re my toothach. The xray didn't  show much so he said the fact that my lip and chin have gone numb could indicate cancet spread as 70% of people with this are from breastcancer mets. Hd said he would take my wisdom tooth out but because of denosemub it might take time to heal, but then said if it is cancer it might not  heal at all! I wonder if anyone has had this or any dental treatment. I feel so worried have to have a scan of my head...sounds so serious , what next.

Lynnq
Member

Re: Bone mets - please join in

So sorry to hear that Helen is unwell, my thoughts are with her. Hope the new chemo helps and that she begins to feel a little better.
She has given me so much support always, but particularly about 18 months ago when I really needed a virtual friend. Like we often say it is easier to speak to others on this forum than close relatives.
Barton
Member

Re: Bone mets - please join in

Oh, Chocolates, thank you for the update on Helen. So sorry she is suffering at the moment - please give her all my best wishes for the taxol to work, with few or mild se's (preferably none!). Thinking of her. Hugs to Helen, and you, too. Barton.x

Marirose
Member

Re: Bone mets - please join in

Thanks Chocolates for the update on Helen I don't know what we would do without you keeping us in touch with Helen's condition. We really are sending vibes for her to get a little better she has been such a strong voice on this web site and we all love her xxx

funnyface
Community Champion

Re: Bone mets - please join in

I'm sorry to hear that Helen is so poorly. She is such a fighter giving it her all! Janet best of luck with your calcium issue. Never heard if it before this. Sarn, WOW that sounded scary and a bug mess. Take care and feel better soon. My oncologist wanted to biopsy my lung again to recheck how hormone positive I was before I started letrozole because it's been almost 10 years since my cancer was biopsies. I told him NO! I already have a partial collapse of my right lung and in 2012 the rest of the lung collapsed. It did manage to reinflate on its own in a few months. I'm not taking any chances. I told him every time he gives me a new chemo it's a luck of the draw if it works or not, so I'm going to go with the same luck if this hormonal treatment works or not. My original breast cancer in 1995 was ER + and 10 years later eith nets it was the exact same, so I'm going with 10 more years probably hasn't changed. FF

Stillhere
Member

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My love and prayers to Helen too, Chocs, and good luck to everyone with results and treatments, big hugs to us all xxx
Jam
Member

Re: Bone mets - please join in

Thanks Nicky and Chocs am just waiting to be seen by Drs now so should soon have the drip up and running. Chocs please send my love and best wishes to Helen. Hope everyone else coping ok today xJanetx
belinda
Member

Re: Bone mets - please join in

Hi Chocs, thank you for the update on Helen. She has such a fighting spirit, still, after all she has been through, thinking of you Helen, with love. X
And thank you too Chocs, you have been such a support for Helen, a friend indeed. X
nicky08
Community Champion

Re: Bone mets - please join in

Hi, thanks again chocs, for the update about Helen. It is so worrying to hear how she is so frail but I hope taxol will work for her and she can get her strength back up enough for a trial or that it works for her and she doesn't need a trial just yet. Always thinking of her, and missing her sparkly words and presence.
Janet/Jam, there was another lady on here a good few months back that had problems with rising calcium levels and needed to be in hospital to get them back down again. She was also on zometa but the one change that helped her, after lots of IV fluids etc hadn't, was to go on to Denosumab - this bone strengthening treatment works by removing calcium from the blood to give to the bones - or that's how my onc described it to me. Most if us have to be on calcium supplements whilst on it so our calcium levels don't get depleted. Worth mentioning to your team?
Hope everyone else is coping with life whilst dealing with the rubbish that this disease throws at us.
Nicky x

rosie53
Member

Re: Bone mets - please join in

Oh chocolates thank you so much for keeping us updated on our wonderful Helen, it's just not fair she has been through so much and she is such an inspiration to everyone on here. I know she will fight this bugger because she is so strong and positive. Please give her my love and best wishes and tell her that all her cyber buddies are holding her hand.

Hugs Janette xxxxxxx 

Chocolates
Member

Re: Bone mets - please join in

Jane, hope things are ok this morning at the hospital and calcium levels get back to normal so you can have your treatment. Sam, that was such a dreadful experience - glad you're home. Hope at some point you will be asking the hospital some questions about how this ended up going so wrong. Rest up now.

Helen has asked me to update you all - as you know these last few weeks have been very difficult. She's not been eating, has lost a lot of weight and has been told that the cancer has spread rapidly. last week she was told no more options, but after a meeting yesterday she has had taxol, in Helens words she has nothing to lose. She's very frail but I am willing this to work and buy her some time so she can get on a trial. The trouble is they are not sure if she is strong enough to cope with the chemo so the next few days are vital. She sends all her love to everyone and thanks you all for the support. She says she can feel your love and strength. As I know more I'll keep you updated.
If anyone else knows other threads where Helen was active could they let those people know as well - I only tend to be on this thread yet I know she was active across the site. It's a scary time but Helen is so brave to go for the chemo, please god it works.

Huge hugs everyone
Hxxx

Mermaid007
Member

Re: Bone mets - please join in

Hi Janette, following my primary I had 5 years tamoxifen and then 5 years Letrazole if anything the Lertazole was easier. You should be ok with it and when it works it often works for a long period of time.. Best wishes x
Jam
Member

Re: Bone mets - please join in

Hi we do seem to be a bit in the wars at the mo. Best wishes to everyone. My problem seem slight compared to yours but haven't been feeling 'right' for a few weeks and went for my zometa this morning and couldn't have it because my calcium is a bit high. Had 1litre of fluid and its started to come down a little. They said if a bed was available tonight they'd ring for me to go in. If not I've to go in the morning. Has anyone else had this problem and if so is there anything I should be doing. Bit worried Letrozole maybe not be working as well as was or could be I've just not been drinking enough. Any help much appreciated xJanetx
Rose_Red
Member

Re: Bone mets - please join in

Thank you Jo. I will look at the sites you have recommended. Rose
Jo_BCC
Member

Re: Bone mets - please join in

Hi Red Rose

 

Sorry to hear you're feeling rather nervous.  I am putting for you below the link to our Someone Like Me service which you might find helpful

 

https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/someone-me

 

I hope this might help too:

 

https://www.breastcancercare.org.uk/information-support/support-you/local-support/living-secondary-b...

 

Take care,

Jo, Moderator

Sarn123
Member

Re: Bone mets - please join in

Hi all thanks for all your kind words it really helps
Good luck to everyone having difficulties at mo lots of love to you all sarn xxx
rosie53
Member

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Thanks ladies for all your advice/info and good wishes.

Sam, what a terrible time you have had, bet your just glad to be home now.

Hugs Janette xxxxxxx 

Marirose
Member

Re: Bone mets - please join in

Hi Janette I was told by my previous onc that markers were inconclusive they only relied on ct for results so we don't have markers done. But brilliant news about your ct scan thats worth a drink hope your bloods will be ok Heart love xx

 

Hi Sarn sorry to hear about your ordeal it sounds horrific glad you are back in your own home and I wish you all the best with your new treatment love xx

 

Best of luck to everyone else xx

Rose_Red
Member

Re: Bone mets - please join in

Is there anyone out there who is ER+,PR+, HER2 - and has secondaries to spine and liver? I was diagnosed in 2011, have just been told I have had my last cycle of Eribulin (my fourth type of chemo) and am awaiting CT results. My previous results showed bone mets stable but liver results were inconclusive. Feeling very nervous. Rose
belinda
Member

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Oh Sarn, thank goodness you're home now, what a stressful time you've just had. 😞 There's an Eribulin thread on the treatments and medical issues forum, started, I think, by Helen. Hope it works well for you. X
Hi Janette, I had much longer on other hormonals after Tamoxifen had stopped working for me, try not to stress about your markers too much. X
Elily
Member

Re: Bone mets - please join in

Hi Janette

I've just changed to Exemestane (hormone therapy) from Capecitabine (oral chemo) as tumour markers were rising but nothing shows up on a scan. I shall see my Oncologist again next Friday to see how things are going. This is the third hormone treatment I've tried and I've found them far more debilitating than oral chemo. I was feeling pretty well (and I work full time) before the change, but my bones/joints started aching with a vengeance after Day 4 of the Exemestane.   I'll post if or when I know any more.

nicky08
Community Champion

Re: Bone mets - please join in

Hi Sam, that sounds just awful and, as you say, none the wiser about your receptor status. I know an internal bleed is the main risk with the procedure but I'd not heard about anyone having one or their doctor missing their tumour, your poor thing. I hope you are able to build up your strength before starting on your new regime and you must be so happy to be out of hospital and back home. Keep in touch with us all, those on the same treatment as you and also any of us with liver mets.
Janette, that sounds like good news to me! The scan would definitely have shown any further progress so do take that as a great positive. I know what you mean though when you want totally good news but there's something there that niggles, I've had that many times before! I don't have TMs measured myself so can't help regarding any rises and what might cause this to happen, hopefully someone will be along to help.
Enjoy the weekend everyone.
Nicky x

Marie123
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Hi Janette, sounds like good results, so enjoy. I have changed from tamoxifen to Letrozole. I didn't have any real se from Tamoxifen , but actually feel better on Letrozole. Hugs Marie xxx
rosie53
Member

Re: Bone mets - please join in

Hi ladies, well just got back from seeing my onc for results, my scan is still showing stable but TMs are still rising, she said she was not overly worried as scan is fine and all other bloods fine and it might be that she just needs to change my tamoxifen for letrazole. Got to have them re-done in 3 wks and she will decide on then depending on results. I'm not majorly stressed about it but wish they weren't rising. Any info/advice from you lovely ladies would be much appreciated.

Hugs Janette xxxxxxx 

Sarn123
Member

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Hi to everyone, sorry to read Helen is so un well again x
I've not been on for a while as had a few problems myself, went in to hospital 2 weeks ago for liver biopsy meant to be in 4 hours, two weeks later just returned home from hospital !!! The guy doing biopsys actually told me how fantastic he was at this procedure before we began completely missed the tumour he was going for and cut into my liver!!!! Panic stations internal bleed, it was awful!!! Plus then told nothing taken to test so no further forward, if he was the best man I would hate to of met the worst!!!!!
Ct scan and markers up so in a bit of a state at mo all treatment been stopped because of f*** up biopsy I got shingles back and really nasty infection. The good news is I'm home now and feeling human again I've just got my date through for the 5 August to start ebrilin and going to have cold cap as lost hair twice already and don't really want to go down that road again. Just want to get this all back under control as looking forward to getting back on hormones by Xmas, that's the plan👍. Sorry to rant on but felt I needed to talk. I am gutted that I ll now never know whether my status has changed but I gave it my best shot! Any tips on ebrilin would be good... Love to all sarn xxxxx
scoobiesue
Member

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Thanks chocs. Enjoy your summer break. Loved teaching . Just retired after 41 years. Love to all . xx

 

Marirose
Member

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Hi Chocolates thanks for the well wishes I think you all helped in getting me the result we all like to hear everything is still stable. The lump I was worried about appears to have dissapeared and didn't show up on the scan the onc said you can get thickening tissue that can be mistaken for lumps. So last night I had a drink of my favourite tipple. 

 

Please send my best wishes to Helen we miss her xxx

edwina64
Member

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Thanks everyone and best wishes for treatments and scans. My 2yr old grandson Ben fell off a slide today and broke his little arm! Makes you forget your own troubles....not a good way to do it though bless him .

belinda
Member

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Try not to worry too much edwina, hope you feel more comfortable soon. X
Hi Chocs, glad you are feeling a little less tired. Helen is much missed here at the moment, hope things get easier for her and she is being well looked after in hospital. X
Chocolates
Member

Re: Bone mets - please join in

FF - really pleased your new treatment plan is taking shape - hope se's are minimal and things go relatively smoothly. Janette, good luck tomorrow - will be thinking of you. Hi Belinda and Nicky, hope you are both doing as well as can be expected. Marierose, hope you're ok after your results today. Let us know when you can how you got on. Sue, I hope things are beginning to settle for you and you get some answers soon - sounds like they are keeping you busy at the hospital xx
Edwina, sounds like your onc is covering all the bases so don't be too alarmed. An abscess left untreated I think can cause these types of problems so fingers crossed the scan is just routine more than anything, especially given your sbc. However, I know it's still a worry so let's hope things happen quickly so you don't have to wait too long.
I'm beginning to feel less tired now as this week progresses so from next week I should be at a stage of enjoying my summer hols. Fingers crossed.
Our lovely Helen is still struggling but thanks everyone for their well wishes and support. They are very much appreciated. As soon as I have an update on what the next plan is I'll let you know. I'm just off to sit with her now for a while.

Huge hugs to everyone,
Hxxx
edwina64
Member

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Hi everyone....well spoke to my  onc on the phone about my toothache and numb lip and chin on left side. She is prescribing antibiotics but said that it could poss be a  cancer spread , apparently I will have to have a scan of the brain to determine if it doesn't get better. Very scared now and wondered if anyone has had this and what happens next?

 

o

 

 

nicky08
Community Champion

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Hi
Good luck FF with Femara, I'm on it as well but we get the generic brands over here which in themselves cause extra side effects so it is worth checking out the ones that aren't as bad. However if you get the branded version it will be the one with the least side effects. I am less achey on AIs than I was on tamoxifen all those years ago so I don't seem to suffer too badly. Hope the added drug doesn't have side effects of its own that cause any problems. Good luck.
Good luck also to Janette for your results tomorrow and Marirose for today. Hugs to everyone else having a tough or anxious time.
Nicky x

rosie53
Member

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Good luck with your results today Marirose, keeping my fingers and toes crossed for you 😉 also good luck to anyone else are getting results/scans etc today.

Janette xxxx