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Bone mets - please join in

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Re: Bone mets - please join in

hi all

i hope i am ok posting on here ,but i am trying to find my way around  the site and posted on another part ,which was fine but a lady named mo sent me a lovely reply and asked me to also post on a thread she gave me so have ended up here.

 

i found a breast lump 7 years ago and the day i found it i was burying my hubby,had just buried my mum so was under a lot of stress,and did not want to put anymore onto my famil so ignored it ,stupid as that sounds ,until eventually in december this lump broke through the skin and discharged plus bled ,i went to the doctors who sent me for tests biopsies ,scans etc and told me i had her2 positive b c with spread to lungs ,liver and 4 lymph nodes in my abdomen ,

i started on chemo in febuary,plus herceptin and perjeta,supposed to have six sessions in all but was taken off the chemo after the second session as i ended up in city hospital for 8 days each three weeks , with diarhoes i am now on just herceptin and perjeta ,have a scan every three months,the last one showed the breast had shrunk,the lung stayed the same liver had improved and some nodes were ok.

i am due a ct scan next week ,plus heart scan and bloods ,but what is worrying me now is the breast has started to discharge and bleed again ,not a lot but its there and now looks red and sore again,no pain ,but have never had pain in all this time ,i am working myself up no end so just needed to put my feelings down on paper as thought it may help

i still do have the diarrhoea,but i am on 8 immodium per day to control it ,so dont know if the chemo has caused permanent damage to my bowel or as some say its now the herceptin,but a pain in the backside for me as i am in a wheelchair ,as had my right leg amputated last year so difficult enough going to the loo without the runs as well,however i manage and dont have any help with anything apart from i can not dust the tops of cupboards ,or clean the windows ,so do have a friends granddaughter does these jobs for me.

i hope you dont think i am going on an on ,but never quite sure when enough information is enough ,just hope someone reads my post and reply's .

thanks in advance

renee.

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Re: Bone mets - please join in

hi all

i hope i am ok posting on here ,but i am trying to find my way around  the site and posted on another part ,which was fine but a lady named mo sent me a lovely reply and asked me to also post on a thread she gave me so have ended up here.

 

i found a breast lump 7 years ago and the day i found it i was burying my hubby,had just buried my mum so was under a lot of stress,and did not want to put anymore onto my famil so ignored it ,stupid as that sounds ,until eventually in december this lump broke through the skin and discharged plus bled ,i went to the doctors who sent me for tests biopsies ,scans etc and told me i had her2 positive b c with spread to lungs ,liver and 4 lymph nodes in my abdomen ,

i started on chemo in febuary,plus herceptin and perjeta,supposed to have six sessions in all but was taken off the chemo after the second session as i ended up in city hospital for 8 days each three weeks , with diarhoes i am now on just herceptin and perjeta ,have a scan every three months,the last one showed the breast had shrunk,the lung stayed the same liver had improved and some nodes were ok.

i am due a ct scan next week ,plus heart scan and bloods ,but what is worrying me now is the breast has started to discharge and bleed again ,not a lot but its there and now looks red and sore again,no pain ,but have never had pain in all this time ,i am working myself up no end so just needed to put my feelings down on paper as thought it may help

i still do have the diarrhoea,but i am on 8 immodium per day to control it ,so dont know if the chemo has caused permanent damage to my bowel or as some say its now the herceptin,but a pain in the backside for me as i am in a wheelchair ,as had my right leg amputated last year so difficult enough going to the loo without the runs as well,however i manage and dont have any help with anything apart from i can not dust the tops of cupboards ,or clean the windows ,so do have a friends granddaughter does these jobs for me.

i hope you dont think i am going on an on ,but never quite sure when enough information is enough ,just hope someone reads my post and reply's .

thanks in advance

renee.

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Nicky
Congrats on the nanny news ..I saw you in mother care with a full trolley !! The first grandchild is the special one and hopefully u will get to go to the scans too ..bet u cry!
These are the second set of twins ..and granchildren 5 and 6 ...but so excited !!
Hugs xxx
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Hi ladies, well it has been busy on here recently but, as with many of us, I didnt manage to get on here over the weekend, but have now caught up with all the news.

Babsy, hope you get the best news from your investigations but I know what you mean about the current Brain mets thread giving such inspiration and hope with the treatments.

Carolyn, WOW - BOGOF offer on babies!  We're only getting one as my daughter didnt see the offer!  Her first baby, and our first grandchild, is due in September. Congrats to you and yours.

FF - hope youve had a restful day, or will get one, as you're a bit behind us on time. Glad that bloods are behaving themselves - it's always an extra bit of worry when you have to rely on them to get your next dose.

Janette - hope you enjoyed spending time with Heidi and she didn't wear you out.

Suze - I have had two liver biopsies but not had bones biopsied. Receptor status can change, and will do in the case of 15-30% of all BC cases (depending on which study you read) so its worth having one done if they are able to get a sample. Sounds like it should be fairly straight forward from what the other ladies who've had a bone biopsy done have said.

Well, a dull and overcast day here as well. Lovely weekend though so I'm not complaining and all forecast for a sunny week ahead. Hooray, and no eribulin this week as it's the week off, so even better!

Nicky x

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Hello ladies
Well it's been quiet on this thread the weekend so it's slipped down the list a bit.
Well ....I assume everyone has been out clubbing, dancing and drinking and had a very good weekend !!
Cloudy and chilly here today so I think I'm going to blitz the spare bedroom ...such an exciting life ..not .
Hugs xxx☺☺☺☺
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Carolyn,


@Carolyn52 wrote:
Hiya babsy
Phew you are calm and strong ..think I would have hit the gin bottle by now but I know from previous posts you will cope well and with your healthy diet too ( I remember so well the plan you follow)
I was very hands on with my other granchildren but this time round will be just cuddles I think .
Take care of yourself xxxx


I have been cheating quite a bit recently ha ha especially with chocolate. What the hell,  so definitely not holier than thou. 🍫

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Congrats Carolyn!!!! Fantastic news 

Hugs Janette xxxx

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Carolyn, Congrats! Very exciting! A few people I know that had babies last year all decided to wait until birth to find out the gender. It was difficult trying to find neutral presents. All of this gender reveal has made it definitely boy or girl baby items!

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Omg Bon ..two more Xmas pressys. .hadent thought of that ..better start saving and shopping now !!
💑👫👭
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Hi everyone

Funnyface, you give us hope and inspiration all the time. How do you do it?

 

Suze, I had a pelvic biopsy, had to keep quite still for a bit, there wasn’t much discomfort in the general scheme of things, had to stay at the hospital for a few hours to make sure everything was OK

 

Babsy, Hope your news turns out to be good, will be thinking about you.

 

Carolyn, twins, what great news, a fantastic Christmas present!

Hugs to all Bon xx

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And with all her washing and ironing 😄

Wendy x
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Hi all

Just thought I would add to the conversation and say congratulations . Suze as for biopsy I had this on my hip via my back and was painless . Enjoy the weekend everyone it is glorious here in London and I am waiting for my daughter to come home from holiday today
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Hiya babsy
Phew you are calm and strong ..think I would have hit the gin bottle by now but I know from previous posts you will cope well and with your healthy diet too ( I remember so well the plan you follow)
I was very hands on with my other granchildren but this time round will be just cuddles I think .
Take care of yourself xxxx
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Hi everyone, FF you are an inspiration to us all xxx Suze I had a biopsy, no pain at all and as had been said previously just take paracetamol after.  At least they can offer a better diagnosis with the information gleaned.

Went to TIA clinic yesterday and ended spending 8 hours in Medway!!! Had to have two CTs, one without and one with contrast. Haven't had a stroke but they're not sure if the area shown in my head is just my original skull mets or whether the skull mets are putting pressure on frontal lobe or if the cancer has spread to the brain. I haven't panicked like I thought I would because have been following brain mets thread and I realised that there are treatments out there. So I must post on this thread to say a big thank you. 

Great news Carolyn. My two daughters are planning to have their second babies in 2019 so a good reason for me to hang about. I never knew any of my grandparents so gives me a sense of determination. 

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Hello FF ..think you should change your log in to"Duracell bunny" as between naps you are a whirlwind and inspiration to all of us.
Jeanette ..glad u are busy and enjoying Heidi ..you will miss her when she goes.
Suze: the biopsy might be a bit scary ( I don't know never had one) but if u read Nickys posts you will see the bc status can change and you will get the right treatment.

Well I've got some good news ..I'm going to be a nanny again just before xmas ..it's buy one get one free again ..TWINS. they are waiting to they are born to find out the sex so I won't know whether to get football boots or ballet shoes to then!!
Xxx
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Morning ladies, sorry been a bit quiet again this week, I've been dog sitting so been busy entertaining.....it's like having a toddler again! Love her to bits though, she has been a great distraction from the "big C"
Suze, loving the wellys certainly be needing those today in rainy Manchester it's a horrible day....I can feel a lazy day coming on, poor Heidi (dog) will have to keep those legs crossed!
Please don't worry about the spine biopsy, I had one 3 years ago when dx with mets to check it was the type as primary ER positive, they numb the area didn't feel a thing, it took around 30-45 minutes, felt a little uncomfortable once the numbness wore off but only needed paracetamol.
FF, you need to take it easy, don't try to do too much hun.
Hope you all enjoy the weekend.
Hugs Janette xxxx
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Suze, I have no idea where that burst of energy came from! I usually get out of bed do my exercises and shower. I have breakfast and make myself do one chore. Check messages take a nap. Have lunch, try to do a couple things. Take another  nap. Make dinner, watch some game shows or play cribbage, try to stay awake then off to bed. I work 4 hours 3 days a week and I'm exhausted when I get home. I take a huge nap. If we go some where I sleep on the way there and way back. I seriously am tired! I have to push myself! I'm trying to work 3 more years. If I work 3 years then I will reach an age where I can get extra social security! I then can quit! Lol that is if I make 3 more. There will be no extra work t his weekend! I think I over did it! Giving hope is my goal. I do know not everyone will be as lucky as I have been, but if I can give them hope they might live their time with more happiness. Hugs! Have a good weekend!

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Good news FF. You give me hope every time I read your posts. All those meds and you keep going. I'm impressed with all the work you've been doing this week. Just about managed every day things this week.
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Had blood work yesterday! White count, blood platelets, and liver enzymes back to normal! I can continue on my meds! Also had eye Dr appt. Eyes have no damage from diabetes, the lenses in my right eye doesn't have any more scar tissue, so don't need it fixed. Other eye the cataract is a little worse,but don't need it fixed yet. 

So all is calm!

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Call the fashion police I'm wearing them again at CarFest. Might change the ribbon though.
Finally got an appointment for spine biopsy. Can't say I'm looking forward to it. Going Thursday and assume I'll be off work on Friday.
Carolyn. Got leg up resting. Toms are a sneaker type shoe. They have an elastic insert to hold foot in and comfort sole. I only buy the laced up ones and only in the sales. Find them very comfortable and for every pair bought Toms provide a pair for a child in third world.
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Suze, fashion police are in the way!!

 

Wendy, Great news! Toot, toot, toot! My horn is working!

 

Babsy, Sounds like your doctors are on top of this TIA!!

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Ha ha suze
i will call out the Manchester fashion police if u wear those out again !!! Ha ha ...☺☺☺.
I must ask what are Tom's!!! Not heard of them before ...
Good morning all xxxx
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Hi Babsy

Hope all goes well with the TIA clinic today. It's likely they will put you on blood thinning injections initially as there is a risk of having another TIA if you've already had one. These are fine but a bit of a faff to do every day! After a few months on these I moved to one of the newer blood thinning drugs (which Moijan mentioned briefly, they don't have an anti dote but are now routinely given instead of Warfarin for patients that need their blood thinned). A lot of cardiologists stick to the injections or prescribe Warfarin as they know they work OK with chemo and most oncologists won't recommend anything else either as they also know what works with chemo. However the newer drugs work perfectly well should you ever need/want to change, I had them during the time I was on Capecitabine and also Docetaxel with no ill effects or contra indications.

Nicky x

ps Suze - love the wedding wellies (I was very careful how I wrote that after the typos from earlier on in this thread 😉)

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You caught me out! I always wore heels until about 8 years ago but the sensible flats are worn most of the time now. Toms are my latest comfort shoe - I've turned into my mother! I have some lovely heels and occasionally wear them out but only welly.jpgwhen not walking far. You are only jealous of my welly wedding Carolyn, 

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Well I've got an appointment at the mini strokes patients clinic tomorrow morning, they rang me earlier. For once impressed by the response time since my GP only referred me on Monday. My oncologist also contacted me and asked to see me on Monday so hopefully this will be all sorted out. I must admit it has been worrying. What we all have to put up with !!! 

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Suze
Yes posture is very important and could be causing the pain as I had my femur pinned Nov 2015 ...and walk really funny now due to the pins holding the nail in....I don't know really whether its the op, Mets or even the letrozole causing back and knees ache really to be honest !!
All you can do is what your body will allow but all that walking in killer heels around Manchester didn't help !! I saw you wearing pink sparkly heels !!! Ha ha ...
Xxxx
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Hello Wendy, great news! Cheers us all up! Keep up the good work and let us know how things keep going.

 

Suze, sorry you are in such pain - listen to "Nurse" Carolyn and rest as much as possible for the next few days.

 

Hugs to all. Barton.x

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Brilliant news Wendy. Still not received appointment and because I'm working unable to chase up. My backs aching today as well but I think that's because the legs affecting my posture. The worst thing is I've received four letters now all detailing what scans and results and all querying the breast cancer metastases because I've not had biopsy yet.
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Dear Jellytot and Hayeswen
Glad for the good news
Indeed this gives all of us hope
Love .❤
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Really pleased for you Jellytot re the trial. Keep us informed how you get on with it.
Love Helen x
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Good luck jellytot got everything crossed for you. I also had good news in that my bone and ct scans were clear which will hopefully give all the other newbies hope

Suze -there is nothing worse than being in pain at work . I know only too well. Is there any update on your treatment for this? My radiotherapy is taking a while to have effect but 3 months on I am feeling slightly better

Wendy x

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Jellytot, That's wonderful news!

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Hello everyone
Jellytot ..think u will be the first lady here on the drug so keep posting as we will be interested ..I have googled it and it works the same sort of way as ibrance.
Suze
I'm sorry you are still in pain ..it's really miserable and u might have to go for the big guns painkillers rather than put up with the pain. Sounds like you pushed yourself too much so some rest and relaxation is needed. Have u tried "sketchers" type shoes ..they are full of bounce and might give u a bit of support ...I hate to use the swear word but u can't beat "crocs" either ..I almost bought a pair at boot sale recently but smacked by own hands and walked away !!
Hello everyone ...hope your Sun tans arnt going rusty with all the rain this week.
Xxxx☺☺
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Good evening Ladies - Very tired after my second day back. Spoke to Head - I still want to work but struggling with pain and tiredness. Getting some support so we'll see how it goes. It is good to be with the children though. 

Jellytot - fabulous news. I've heard about this triall and it does sound good. I think it was something on cancer research because they send me updates every so often. I'm on Letrozole alone and apart from tiredness and a bit emotional I feel ok. 

Carolyn - What can I say? Everytime I go to the bathroom I think of you and passing a pineapple and get the giggles! Still struggling. I've tried the heat pads and pain relief gel. To be fair, I think I overdid it at the weekend and then I dragged my leg round Manchester in the rain, to look at the flowers and hearts that have been left. Very moving and I picked up a heart for my friend's daughter, who was at both of the concerts. 

I've planned for tomorrow, so PJs for me now. x

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Wonderful, JT! Good luck with that. Please let us know how you get on. May you have few/no se's!

 

Hugs. Barton.x

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Congratulations! I hope it fulfills all of your hopes, good luck. Keep us informed x 

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JT, that's brilliant news! Really pleased for you, you must keep us updated with how you get on with it.
Hugs janette xxxx
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Some good news, just found out I have been accepted onto the ribociclib plus letrozole NHS "trial". I say trial in inverted commas as it has already been trialled, this is another wave before they look at rolling it out. It's apparently one of the most exciting advances in bc research in a long time so I feel very privileged to have got on to it xx

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I made rhubarb chutney today. Have to be very discreet about throwing stuff out. Hugs B xx

 

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FF
Once I get a plastic sack in my hand ..it's like red rag to a bull ..got to fill it!
We have a power washer too but I get soaked using it so it needs to be sunny and warm.
Have pm you ..
Hugs xxxx
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Carolyn, Yes me! I've been on a roll! Over the weekend I power washed both our decks have a small porch left! Did them with just water and they look almost like new lumber. Have a couple areas I'm not pleased with so now going to use a chemical cleaner on them. Then they are getting stained. I also power washed the siding on the back of the house and most if the front. Now, the ends need done. Not me!! That requires a big ladder! Today the weather is yucky, so working on kitchen cabinets. I have to place things to throw in an area to grab when hubby isn't here! He is a saver! I can't throw when he is home. He will be at work in the morning and then I can bag it up! Trash day tomorrow and I can get rid of it! I'm going through this house room by room! I wish hubby would go away for a weekend and my son could come over. We are a good throwing team. FF

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Well ladies ..the weather is rubbish today outdoors so having a clearing out cupboard day ...two large sacks of clothes, handbags and shoes so far ..to cancer care charity shop tomorrow ...
Next kitchen cupboards ..why so many plastic boxes ? Tins and empty roses / quality street boxes ..do I ever use them ? No so they are going too....
Anyone else got this bug today ??
Hugs xxx☺☺☺☺
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Thanks Barton and Moijan. Xx

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Hi Jellytot
I have had Denosumab since diagnosis in Dec 2012. It had just been licensed for use & I can honestly say that I very rarely get any side effects from it. It's quick & I have had had it every 4 weeks and every 6 weeks depending on what chemo I'm also on (currently eribulin). xx
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Hi everyone...sorry I haven been on much over the w/e.

 

re Zometa( Nicky) yes, I now have it three monthly...I know some can have it 6 monthly, but my onc

was reuctant as He is keen for the bone mets to be controlled. .my Request for three monthly or longer was due to my teeth recently needing treatment and was fearful about poss of jaw necrosis....a long term fear a lot of us have....but which could occur whilst on either treatment.

 

i once tried denusamab as had heard that there was some evidence it might help prevent bc, but the jury is still out...and upon my first dose, which was given alongside my first Eribuln, I got a bit of pain....so opted to go back on Zometa next time. Lots of ladies now have zometa 3 monthly as opposed to 6 weekly, which was whati first I  was on....and results are as good...apparenly.

 

regarding dvt.....and any blood clot, eg, pulmonary embolus or tia.....yes Cape has blood clots as a s/e as has been said and I got a dvt after my first two cycles of cape.... As cancer sufferers we are all at risk of blood clots anyway as cancer changes the clotting mechanism...however, I had had bc Initially in about 2000

( missed till 2001) and never had a clot until put on Cape. i dont blame the cape alone...as I was also takng high doses of prochlorperazine for sickness...and both drugs have clots as possible s/e. Was miserable at the time and lounging about on my bed....

 

re oncs v gps......I have a super onc at a specialist cancer hosp and I had noticed one ankle swelling up, which my super onc hadnt thought was remarkable....nor did the radiologist I saw for an mri, .....

 

but later my lower leg swelled up...knee to ankle...and my gp sent me to a kind of medical day unit at my general hospital to have an ultrasound which picked up two clots in my calf and one in my thigh......like Barton, I am on blood thinners permanently......about 8% of cancer patients are primarily diagnosed with clots first and then find they actually have cancer too. ( just a little aside for you!) recently my onc talked about the practicalities of maybe stopping the blood thinners if I were to be suited to a different chemo.....and my venous consultant has reiterated I need blood thinners for life.

 

incidentally...there are newer anti clot drugs out now...which are tablets....but which have no antidotes in case of a bleed, so short term heparin is much safer for us cancer sufferers just at the moment.

 

Babsy, you must have had a scary time....so sorry...hope all is sorted now xxx

 

hugs everyone

 

Moijanxx

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At least your GP is doing something, Babsy! Good luck.

 

Barton.x

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Thanks all for the warm welcome back!
Carolyn, I have sent you a PM back lovely. I did watch the OneLove concert last night it was very touching and emotional to watch, made me very proud to be a mancunian. The atmosphere there must have been amazing!
Hugs J xxxxx
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Once again thanks for kind concerns and advice. Rang cancer unit first thing this morning and was told by oncologist  to go to GP as planned, and unless I was unwell again to just keep my appointment to see oncologist on 22/6. GP not very impressed with A&E, she didn't want to prescribe any further medication cos of all the stuff I'm already on. She's making an urgent referral to TIA clinic who will test to find  out if I did actually have a TIA. A&E had said they would ask for a MRI scan but that could take up to two weeks. So it appears it's just a waiting game and let's hope I don't have another episode but I know to go by ambulance to A&E if I do. 

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Thanks Nicky for explaining the bone strengthener so well ..I did see jellytots posting and did think about trying to explain it but knew I would just do what I normally do and confuse everyone.
Just for info ...our hospital have virtually gone all denosumab now and phased out zometa type iv due to staff time savings ....
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Phew jeanette
I was worried about my letrozole buddy...I sent you a pm but it didn't get to you .

Well Manchester did the UK proud last night with the concert ..I have recorded most of it but did see Arianna sing " SOMEWHERE OVER THE RAINBOW" at the end ..very emotional . Hope moral is recovering in the town a tiny bit now.
Hugs xxxx