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Bone mets - please join in

funnyface
Member

Re: Bone mets - please join in

Hi Ramade and Renee! You two are doing great with all these treatments. Sending big hugs!

You and Renee are troopers! FF

funnyface
Member

Re: Bone mets - please join in

Welcome TNMTNGAL, I'm sorry I only have 1 bone met and have never had a PET scan. I always thought when the PET scan lit up it was cancer. Ask a lot of questions. Get a second opinion. Don't stop until you are satisfied!! You could have it biopsies. Best of luck. FF

TNMTNGAL
Member

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*both pain and hot spot in right hip, not left. Sorry. I hope I'm posting in the right place?
TNMTNGAL
Member

Re: Bone mets - please join in

Hi everyone. I was dx November 2009 with stage 2 grade 3 involving lymph nodes. Had double mastectomy & took lymph nodes. The "bad" chemo 6 months, daily radiation 6 weeks, herceptin weekly for a year, tamoxifen 5 years. They wanted to put me on a different daily pill for 10 more years. I've had enough. So my right hip has been hurting for over a year. Now I'm hurting into my pubic bone. PET scan showed a hot spot in my left hip but they said it was indicative of a torn psoas muscle so sent me to ortho. They said not a torn muscle and looked like it's from my degenerated lumbar spine, scholiosis, and dx today with spina bifida occulta. My question...would just a torn muscle show in a pet scan? Because from my understanding, the glucose serum they mix with your blood draws cancer cells to that spot, thus showing hot spots on a PET scan. Do torn muscles or maybe even pain show up as hot spots? I'm really worried. I've had X-rays, CT's, MRI's, PET scan, everything except a bone biopsy, but I've heard of women having mets in hips that doesn't show up until later?
Carolyn52
Member

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Hello Ramade

Just sending you a massive hug and hope rads helps the pain .
Keep in touch xxxxx
ramade
Member

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Hi ff, carolyn, all you bone mets ladies. This week I amm having radiation to my spine all week.

the reason is that I have bone mets all down the spine and around hips and around breast bone. However for months I have been having bad pain in my shoulder that radiates down my arm and the side of my body, it was terrible. Anyway the onc sent me for radiation in one in the neck and one in the high back because these were infiltrating spinal nerves, tingling and pain moving around all the time. They said they hoped the radiation would kill this cancer because there was a danger as it was about in infiltrate the spine itself which would not have been good. 

The less invasive cancer down the rest will hopefully be tackled by a change in meds. Day 3 tomorrow, pain is expected to get worse next week after it is finshed and them get better. I will report back to let you all know what happens and hope that might help you make a decision.

love to all

ramade xx

Carolyn52
Member

Re: Bone mets - please join in

Hello pina
Welcome to the forum ...rads can help pain a lot for many of us ..I had hips / pelvis done in one blast two years ago and it did help I think.
It's a decision you need to make but be guided by your oncologist ...ask lots of questions and anything can help if it's pain relief! !
Hugs xx
pina_c
Member

Re: Bone mets - please join in

Hello everyone. Was wondering if any of you have had radiotherapy to help reduce pain ? My onc has suggested I have some on my spine and pelvis. Not sure whether to wait longer or to go for it now ? I hate making decisions!!!!

pina_c
Member

Re: Bone mets - please join in

.

funnyface
Member

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Thanks girls. It shows up when they do the CT of my chest. Due the beginning of Nov. for that. Little over a month away. FF

Carolyn52
Member

Re: Bone mets - please join in

Oh bon
You have described bone mets perfect ..I had a flutter feeling and pulse in my femur at the beginning ..felt like there was a spider in there living ...then I got a big bruise that didn't go away.
Bone mets on spine ..cause different effects though ..
Hugs
bonariensis
Member

Re: Bone mets - please join in

Hi FF

My bone mets first felt like a flutter or a soft pulse, this before I was diagnosed, so naturally I didn't think anything of it. Then I had a pain for a day but this went away and only comes back infrequently mostly when I've been doing too much gardening. So it seems that mets make themselves known in any number of ways. Hope your stinging goes away and you are feeling OK otherwise.

Bon xx

Carolyn52
Member

Re: Bone mets - please join in

Bon

You gave the spider a chance ...it let you down and bit you so deserves a big splat from your slipper or book. .whatever is nearest! !
Hugs xx
Carolyn52
Member

Re: Bone mets - please join in

Hello ff
Bone mets are clever little blighters ...they can sting, burn, ache and itch so it's difficult to know what they are doing. Most times unless they press on a nerve or limb ..we don't know they are there .
Hugs xx
bonariensis
Member

Re: Bone mets - please join in

Hi Renee

I'm glad that your treatment is coming to an end. Hope you can enjoy a bit of peace and rest now. Wish I could send you a cream tea. I live a bit further down the road from Carolyn. Sometimes Carolyn, Barton and i meet up for lunch or tea. Unfortunately last time i managed to find the place with the worst cream teas in Devon.

 

Found a garden spider dangling in my bedroom the other day. (Just noticed it's there again this morning). Wrapped my hand around it to put it out the window without hurting it and it bit me so i let go. Will try a different tactic this morning.

 

love Bon xx

 

funnyface
Member

Re: Bone mets - please join in

Bone Mets Ladies, I've had one none met in my spine for a few years at T-11. It's never given me a problem. A couple of weeks ago I had a little soreness in the area and some stinging. It went away. Today it started again. It's not really a problem, it's just there. I was just wondering if maybe it's going to start acting up. Has anyone with bone mets in the spine had stinging? FF

Carolyn52
Member

Re: Bone mets - please join in

Oh Renee
You have the best taste in clotted cream ...roddas
The best in the West.
Ilfracombe is about an hour or so away from Exeter and it's a bit tired these days but there are lots of nice bays around the north coast .
Maybe once your treatments are less ..you will be able to make the trip again and enjoy your memories.
Xxxx
jazmia
Member

Re: Bone mets - please join in

Hi Carolyn,

i can tell you i am completely shattered with it all and pleased it is coming to an end i hope ,as dont think i can take much more ,serousely i put a brave face on it all ,but drowning in all the treatments at the moment ,i know the onco is doing his best but sometimes wonder is it all going to be worth it in the end and who can answer that NO ONE just hope for the best.

 

we were coming down to ilfracombe once and and broke down on side of road ,i dont remember exactly what happened or why we ended up in exeter to have it fixed but the rac  sorted it all out at this exeter garage so we spent all afternoon looking around exeter and really enjoyed it .

also my mum had a friend from exeter ,moved up to the lake district ,she was a fantastic cook and made all her own cream scones and also pasties ,but never ever lost her accent all the years she was in the north.

 

i can not eat very much at present but can keep scones with strawberry jam and rodders clotted cream  down,also remember the times we have spent on various harbours down there munching on large cornish pasties ,those were the days carolyn.

 

love reneex

Carolyn52
Member

Re: Bone mets - please join in

Hello Renee
It's good some of your appointments are coming to an end ..you must be exhausted with it all ...you are doing so well to tolerate so many things at once ..I'm a wuss ..don't think I could.

I live in Exeter. ..born and bred here so a true Devonshire dumpling with a love of cream teas and pasties !!
Gorgeous weather here today ..sunshine but with a autumn chill ....
Hugs xxx
jazmia
Member

Re: Bone mets - please join in

HI CAROLYN,

i have noot seen a daddy long legs as yet this year ,but lots of spiders with tiny bodies and great long stringy legs ,all over and like you had one visited me in bed 

finished my first two weeks of cape and feel ok ,but is feeling ok good or bad sign ,will soon know as seeonco friday for bloods etc ,plus only have two R T left tomorrow and next week ,i do have pains in my collar bone and shoulder but putting that down to RT i hope thats it anyway.

i keep meaning to ask where abouts do you live exactly carolyn ?,just curious no other reason ,but i am nosey and always have been

love renee

slinging it down here so horrible

Carolyn52
Member

Re: Bone mets - please join in

Good morning ladies ..
Hope your all had a good weekend , well the wasp and mozzy problems are better now another ...daddy long legs ..aagh creepy things ..we had 7 in our lounge last night ..hubby did his bit with them but got into bed last night ..switched off light. .felt a tickle on my face ...yep you guessed another one so I had a swat and spray to hand ..not afraid to use it either ...glad I don't live in oz ..could be snakes and killer spiders I suppose.
Xxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi xxamandaxx and welcome to the forum. There are a lot of informed and supportive ladies on here, most of whom have bone mets so you have come to the right place for information.

It is quite likely that you oncologist will suggest a chemotherapy treatment if your scan results show that letrozole is no longer working. However this can be a tablet form, Capecitabine, which is generally kinder, less harsh and has less side effects that IV chemo. It will depend on what your oncologist orefers to be honest as there doesn't always seem a set pattern to these things. I went onto Capecitabine after anastrozole had stopped being effective and got a good 18 months from it, other ladies have been on it for much longer than that so its not a chemo that has a defined number of cycles.

Although it is difficult not to worry, as we all know, I've found over the years that I've often been thrown a curve ball and something has been suggested that I hadn't even thought about and therefore I have stressed about something that I didn't need to. So try to carry on until your appointment, after that you will know a bit more and can prepare yourself for what you know you will be having, it may also stay the same with no changes.

Nicky x

xxamandaxx
Member

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Hi i am new to this. I'll give a bit of an update. I am 34 wi stage 4 breast cancer spread to spine hips neck and shoulder. I was originally diagnosed in 2013 with stage 2 breaat cancer.i then had chemo mastectomy and radiotherapy.
Then in 2016 had secondary diagnosis.since then I have been on zoladex which stopped working so had my ovaries removed.since January this year I have been on letrozole which I think has now stopped working as my tumours markers have got higher. I am just wondering what is next after letrozole? I'm sure I will hear from my scan results soon to what is next.just looking for a little bit of a heads up before I am called in. Really hoping it's not more chemo xx
funnyface
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Thank you to any ladies who have posted since my original Thank you about my girl, Maggie. I'm doing good. I've made if through the weekend without any tears. I miss her, but know she us in a better place. FF

funnyface
Member

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Babsy, Are you strong enough to repeat treatments. You can try "revisiting" some treatments! Also, if I had no treatments left and felt strong enough I would try something non traditional.Good luck! 

 

Thank you for your kind words on my doggie! It's hard letting go! FF

Carolyn52
Member

Re: Bone mets - please join in

Hello Barbara
It's good to hear from you but sad that chemo option is running out ...I have often read here that many ladies are put back onto a hormone therapy to keep things under control ..maybe you could ask oncologist .
I hope you have settled into your new home ..I think when you last posted ..you had just moved to the coast ...
Sadly I can't join you in Birmingham although it sounds good as I'm not mobile enough to travel up from Devon.
Sending hugs xxx
Babsy
Member

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It's so sad when you lose a member of the family. We had two dogs and one of them just became ill really quickly and she was the same age as her sister and we had to put her to sleep, so sad. 

On a personal note, I've now come to the end of the treatment road so am now struggling to find my positivity. I am going to a two day conference at Birmingham on Saturday and Sunday called , I Can Do it, look it up on internet. It is all hayhouse authors, including Anita Moorjani. I'm sure I will leave there much more positive. I have got a spare ticket cos my husband refuses to see the " quacks" so I have a spare ticket if anyone is interested 

barbara x 

ramade
Member

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Hi ff, so sorry to hear about your dog, 5hey are really a member of the family and you feel the loss terribly. Thinking of you

ramade xx hugs

Barton
Member

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Hello Bon, so glad you had a lovely time in the Scilly Isles! One of my favourite places ever. I had forgotten about the brave sparrows on Tresco - they are so friendly. Never had a thrush eat of my hand, though! Hope yoy enjoyed the gardens.

 

Hugs. Barton.x

bonariensis
Member

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I know Carolyn doesn't like being plagued by wasps but we found a new pest when trying to eat outside whilst on holiday - extremely bold and persistent sparrows on Tresco.

 

tresco (32).JPG tresco (32).JPG

I also had my first experience of a thrush eating out of my hand.

bonariensis
Member

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FF I'm so sorry that you have lost Maggie, the house must seem empty without her. But she's out of pain now and she must have been frightened about what was happening to her. When the shock is over you will have happy memories of her and the other family dogs are very lucky to have you as their dogsitter.

Bon xx

Carolyn52
Member

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Well glad you are handling it well ..I remember my little dog sitting with me , cuddling when I was going through primary chemo and sickness and remember how therapeutic he was in his last few weeks.
It's just a pity that they don't all just pass naturally in their baskets ..it's that trip to the vets that causes the upset!
Like us , you have the doggy sitting to do daily so you will still have that wet nose, dog hair and cuddles from the grand dogs! !
Hugs xxx
funnyface
Member

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Thank you ladies! I'm OK. We adopted Maggie when she was about 2. My hubby thought I was depressed from my dx of Mets. I was at 2 years and he thought I needed something special. He offered me Maggie or silver pearl necklace from Tiffany 's. That was an easy choice! I always thought Maggie would out live me. Yesterday when we were at the vets I looked at him and said right at this moment I wish I had chose the pearls, then this wouldn't be happening.! 

 

We will see what happens, but right now we both feel we aren't getting another dog. Mostly we don't want the responsibility. We also can get our pet fix from babysitting grand doggies. Lol, I said we will see, bc we had made that choice before Maggie, too. 

 

By the way Maggie was allergic to beef. It gave her skin allergies. I cooked her a big old steak yesterday morning before she went to the vet. She gobbled it up! FF

sgagliardi
Member

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So sorry Funny face. It's never easy losing our fur babies. Thinking of you. Hugs
Stillhere
Member

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Funny face, I just couldn't read and run, I am SO sorry for your loss, hugs to you and your hubby. It is so hard to lose a beloved doggie, ours are 10 and 13 and I'm dreading the day it happens but we have to do the right thing as responsible owners don't we? 

I feel sure that Maggie is running free over Rainbow Bridge and you'll meet up again some day xxx

ann-m
Member

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Sending hugs, FF.  It's always so hard seeing a pet suffer then making the decision to send them over the rainbow bridge. We've always had cats & had to let our 2 year old go last year following an awful injury which was too big to heal without prolonged & invasive treatment. Ironically, we were both going to hospital daily at the time, me for radiotherapy & Lola to the vets. 

Maggie's had a lovely life & is now free from it all, in doggy heaven. 

ann xxx

Optimissy64
Member

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Oh Funnyface I am SO sorry to hear this, and having a little weep myself for you, and  remembering when I had to make that  decision for my old dog, and a number of cats over the years, and how it just doesn't get any easier no matter how many times you have to face it. It will take time to adjust to Maggie not being there any more but take comfort from the fact that she had a good life with you and a good death - you knew when the time was right. The death of a pet is every bit as distressing as the death of a human in my view- you've lost something that was loved- and need to grieve. xxx

Carolyn52
Member

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O funny face ...I know how you feel but all dogs have a sell by date and at least Maggie is at peace from pain now ...
The house will be so silent and you will feel the loss for ages but think of the good times you shared.
We had a jack Russell for 18 years ..broke my heart having to send him over the rainbow bridge ..felt like a murderer ..hence the reason I have never got another one. ...just dog sit for sons dogs now.
Sending real sympathetic hugs across the pond xxxxx
nicky08
Community Champion

Re: Bone mets - please join in

Sending lots of hugs to you FF, it is so sad when our lovely furry friends have to leave us and we feel such a huge hole in our lives. Although we have not had dogs as pets we have had cats for most of our married life and I have been heartbroken when one of them has passed on either from old age or in one case a car accident. A similar thing that happens to Maggie also happened to one of our elderly cats and it is so distressing to see them trying to move.  But she, our cat, had had a wonderful life so it was right to treat her well and do the right thing for her.  Take time to grieve, as it is grieving, and remember the good times. Plus you know Maggie is out of pain and stress now, as Renee has already said.

Nicky xx

jazmia
Member

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oh my goodness FF ,

i do feel it for you ,so sad when something like this happens to our beloved pets,please just try and think of the good times you had togetehr and also all the love given to you by the animal,its just exactly the same as using a human being ,although i know some people would disagree with me ,but all my animals have been treat like humans.

i do hope you can soon pick yourself up from this part of your life and just remember there is no pain now just peace for MAGGIE.

all my love reneexx

funnyface
Member

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Bad day today! We sent our yellow lab, Maggie over the Rainbow Bridge! Since Spring her walking was slowly getting worse. We had a couple episodes of her back legs collapsing, but we though she had stumbled. In the last week she went down hill suddenly.Her hind legs keep collapsing. They become paralyzed for a few minutes and she trembles in fear and drags her legs trying to get up. It has been awful to watch. Hubby tried to stand her up 3x in a row yesterday and she would collapse each time. He finally was able to get her up. We decided it was better to let her go sooner than later. The vet said one day soon all her limbs would collapse with her. She was 75 lbs. and I don't have the strength to pick her up. If hubby wasn't home I wouldn't be able to do it. All I could picture is her laying in snow freezing bc I coukdn't get her up. We didn't want to have to carry her into the vet unable to move. My heart is broken! FF

PMOL
Member

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Hello girls - sorry I've been 'away' - after my lasr post had my sister and niece coming to stay for a fortnight, then eldest daughter came down with pneumonia and then school started! Back to work (dont work in school may I add!) and then husband's best friend came from Canada for a few days which was great to see him but also for my lovely husband to talk to osomeone else that knows us and can understand a bit of what's going on.

anyway, today had radiotherapy appointment which was good because as the treatment seems ti have worked, they are not going to keep calling me but when it becomes too painful to let them know and I can have an aopt at short notice 😊 Plus with everything else that is going on doesnt want to add to my schedule! 😂

Tomorrow I have the gynae for the oopherectomy so we'll see what they say. Next week is the oncologist and not sure what we'll talk about but guess it might be a review although we havent done a new ct since august...

 

i'll keep you posted.

 

hope everyone is ok and ready for winter... heating has been back on and thick duvet too! Xxxx

sgagliardi
Member

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Thanks so much FF
funnyface
Member

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Welcome Sandy! You and your OH got this!! You are doing great with your positive thinking. Life nee p s moving and you have to move with it and enjoy what you have! We all have our bad days, but learn how to get through. I wish you many years. FF

Moijan
Member

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Yes Renee,
Funny face is on the button there! Most of us surprise ourselves how long we survive and I think part of that is the sharing we give and receive on here xxx
Travel hopefully and enjoy what we have
💚💚💚 Moijan
sgagliardi
Member

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Thanks so much Carolyn!

Carolyn52
Member

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Hello sandy
Welcome to the forum where there will be lots of ladies that can give kindness and support.
It's a lot to take in with the news ..and the treatments but you sound very positive and ready to start a new journey !!
Sending some hugs xxx
sgagliardi
Member

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Good Afternoon everyone

 

I am new to this forum as I was just recently diagnosed with Stage IV BC with mets to the bones specifically ribs, chest wall, femur/pelvic area.  I was originally diagnosed with State II or III as it was detected in my lymph nodes in my right arm pit area.   This was a shock to me as I have never missed a mammogram since turning 40.  Can't believe that my original diagnosis is Stage IV!!!  I am 49 yo.   My hubby and I were completely devastated at first but after multiple conversations with my oncologist and reading  other Stage IV BC survivors stories we realize that this is not necessarily an automatic death sentence.  I can potentially live with this for quite a while.   My type of cancer is ER/PR positive HER2 negative and I have just started my treatment on 9/13/17.  I will be taking Letrozole and Ibrance and receiving an Xgeva injection monthly.  I am also taking Vitamin D/Calcium as well.   It has not quite been a week yet and I haven't really had any bad side effects.  I suspect is probably too early.   The only thing I have noticed is increased Hot Flashes but I also had my ovaries and tubes removed on 8/28/17.  Today i am noticing increased pain in my outer thighs but maybe that is the actual bone mets?  Not sure.  The pain is certainly not bad at all but noticable is all.    I remain very positive as I am in no way ready to leave this earth any time soon.   We have a 20 year old daughter and a 17 year old daughter who is a senior in high school.  I plan to see them both graduate college and be successful.  We still have family vacations to take and my hubby and I will celebrate 25 years of marriage next year which we plan on celebrating.   I am blessed to have such a strong support system not only in my family but in our amazing circle of friends as well.   I come to this forum for any positive stories, advice and or tips on dealing with side effects etc etc.  and I truly hope that someday I can be one of you who can provide the positivity and hope to others who receive this diagnosis in the future. 

 

Thanks and God Bless

Sandy

funnyface
Member

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Renee, Don't ask how long! Just get yourself that chair and enjoy! Hugs!! FF

jazmia
Member

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hi funnyface 

you are so right in what you say ,but the snag is ,do i want to know how long i have ,i honestly can not answer that question,am i strong enough to keep on with the life i have at the moment ,i just dont know and that' the million dollar question ,,a bit of a coward at the bottom of me .

love reneex