Bone mets - please join in

[Hayeswen]

Hi everyone I am recently diagnosed too. I am 51 and straight in at secondary stage discovered via investigation into hip pain. Still really angry and scared but I have already had radiotherapy which I hope will work and masectomy/recon last week. Reading your posts gives me hope as I cry every day although my husband and kids keep telling me I will be around for years it is better for me to know that there are others I can talk to. Hope you don't mind another new member. Wendy

[Pippin]

Hi Everyone

Wondered if anyone had any ideas on what I should saw in the following scenario (hich is very common for me);

I limp arround using one of my crutches (I find I get on better with this than a stick) and when someone offers help eg carrying heavy shopping I accept. Gobby by nature we usually chat and invariably they ask what have you done. Also honest by nature I say my breast cancer has spread to my hip, I know this makes people feel a bit bad because they apologise, I say it is "OK" and I say "I don't know what to say when people ask me". I am getting a bit fed up of this scenario - any ideas.

Hi Suze, I too had surprise bone recurrence on a scan (three years after first primary), working when got diagnosis too. Hoping to get back to work. Got 3 kids, live in the North and am 59! Isn't our state retirement age 66 now? Not doing any special things except eating chocolate again which I had entirely given up before and also I have no qualms about having a drink on my own even mid morning if I want, something I would neer have done before. I have thought about the music festival though (never been to one before) but when I took my daughter a couple of years ago I was tempted (but didn't tell her). Are you going to Leeds?

Pippin

[Suze57]

Thank you for your welcome and to Ramade. I've been out and about today but still find the devil on my shoulder telling me every little ache and pain is something sinister. I know I have to keep busy until I'm given more info. I teach primary which is tiring and stressful. Hoping to complete one more year before retiring. I have so many plans and this wasn't one of them. You're right, I feel cheated. I've worked since I was 16, even when I had my three children and studied to teach. I'm going to do my extreme best to get that state pension! If there's a mountain in the way, I'll either walk round or climb. On a more positive note, I'm going to my first ever music festival in July, so I've booked a mobility scooter to make sure I can get round. I'm busy thinking of ways to pimp it up now. I will keep on this forum because it's given me hope and made me smile. I want to join the stable Mabels too. 

[Carolyn52]

Hello suze
Welcome to the forum ..it's always nice to have new ladies join us and you will find a lot of advice and kindness here ..especially if you are having a bad day ( which we all do)

Once you find your way around the threads you will find so much info from real people .
I'm a little older at 64 but had retired a year before the little blighters started partying in my bones so feel cheated out of all the things I planned to do after working all my life !!
I had primary 2004 ..and eleven clear happy years so mustnt complain too much.
Anyway ..feel free to let off steam here ..we all understand how you are feeling now.
Xxxxx

[ramade]

suze, you came to just the right place. welcome. ask all the questions you like here. great you've got a lovely consultant. i had letrozole for 5 years for chest mets, which oddly spread to neck. recently diagnosed with spine mets top and miiddle(pain in shoulder) now on exestamane, demosumab and to start everolimus in 3days. i find everyone has an awful few weeks when you learn of a new spread but then settle down. As for letrozole, i was fine for 6 months, then fatigue kicked in which i changed my life slightly to accommodate. when i was taken off it because it stopped working i had my energy back in 4 days. hope this helps.

ramade xx

[Suze57]

Hi. I'm replying to this thread because I can't find a way to join in. Hope that's ok. 

I found my breast lump on my fiftieth birthday. I never felt it again. The consultant said it was well hidden and I was lucky to find it. I had full mastectomy and reconstruction, chemo, radiotherapy, tamoxifen and +Zolodex. I finished my treatment three years ago. I was to be discharged in February but had a pain in my knee. My lovely consultant sent me for a bone scan because she knew I was worried and I lost my mum to B.C. three years ago.

Unlike me, mum didn't tell anyone and by the time the cancer was found it was too late. It shocked me how quickly it spread. 

Now, here I am with two bone mets on my spine and waiting for a further scan to check the bastard disease isn't anywhere else.

Again, I've been 'lucky' because the consultant wasn't expecting to find anything.

I've read your posts and I am a strong, positive lady usually so I would like to join in. She started me on Letrozole and I purposefully haven't looked at the side effects because I always get them bad. The pain along my left leg is permanent and stopping me from doing what I want to do. It's my 60th this year and I'd planned to be ten years clear and I'm currently doing 60 things I've never done before.

Trying to stay positive and I know there's an army of drugs. I also know I have the Christie on my doorstep but I feel in limbo waiting to find out what happens next and instead of looking forward to my retirement next summer, I'm wondering can I carry on working. I did go into work, the day after my diagnosis so quite proud of myself. 

[Carolyn52]

Hiya Chris
That's good news confirmed by oncologist ..unfortunate about the crumbling spine ..is that cancer related or just wear and tear?
I always find denosumab increases my back ache and bone pain for a few days ..it's normally about ten days after the jab ....I think I'm just unlucky though as most ladies here don't have any problems. I always think of it as Popeye having his spinach but ours is for the bones !!
Love to ladybird xxx

[Ladybird]

Morning ladies.
We saw the onc yesterday and he confirmed the good results we were informed of last week.
I asked him about different brands of Letrozole and he was very dismissive of any change. He said her leg and joint pain was due to her crumbling spine. He even pointed to her swollen finger joints (which she has never complained about!).
No sign of dry scalp though Janette ....luckily.
Anyway we await the Denosumab injection from the nurse on Tuesday. Perhaps she might suggest something for the leg pain.
Keep smiling!
Chris x

[Carolyn52]

Hiya Jeanette
I've always got a dry itchy scalp too ..I don't risk any hair colour so am an old grey bag lady these days !! I only wash my hair weekly too !! It's definately letrozole causing it but just glad to have hair as a lot of poor ladies don't with chemo !!
Enjoy your special weekend ..hopefully this won't cause too much hassle and spoil things for you.
Hugs xxxx

[rosie53]

Hi ladies, hope your all keeping well.
I posted a few weeks ago about my dry /itchy scalp, well it has now got infected too so on antibiotics now and been given Alphosyl shampoo and ketoconazole shampoo to use alternatively.
I'm convinced it's down to my hormone treatment because I have never had trouble before starting on it.
Hope you all enjoy the bank holiday weekend.
Hugs Janette xxx

[funnyface]

Carolyn, Yes it has been that long! I am hoping these new drugs will be easier on my knees and I hope they don't mess with my weight loss! I don't want to gain again. I'm pleased with the weight loss and now 9 months of exercising! I exercise 7 days a week. I have taken a few days off but not many. When I started I couldn't even hardly do 1 sit-up. I now do 35 a day! Never in my life could I do that many every day!

Ramade, Will be very interested in how you do on this combo. My pills are arriving today, but don't start til the 8th. We got this! We will get each other through this!! I leave tomorrow for the beach and will be home next Thursday. Not sure if I will get to check in!

Have a good week everyone! FF

[ramade]

good morning all you lovely brave ladies. Bit tired today, thought we had burglars in the night but it was the cat tearing my new cheeseplant to pieces. my fault, i shouldn't have bought it, should have left it in the 1970's.

Anyway, i was reading about diet helping, no read on, this is eating more not less... Breakfast porridge oats with sesame seeds and flaxseeds sprinkled on, these are supposed to act like pacman eating up cancer cells. lunch very slightly boiled broccoli and oily fish(sardines or somthing). Chewing on liquorice root a lot, supposed to cut estrogen. Still eat everything else as usual of course.

Everolimus being added to the rest next Thursday so will give a blow by blow account for anyone interested..ff?

hugs to all

Ramade

[Carolyn52]

FF
Gosh was it really a year ago you lost your brother ..time flies by.
Well u certainly are the matriarch with chemo treatments you have had ...so you are the wise owl here!!
I hope you have a lovely anniversary holiday this year and also a rest from ibrance/ letrozole too ...hopefully e and e will be kinder to your poor knees and who knows you might be running the new York marathon soon now !!!
Xxxx

[Moijan]

Chris....could be either drug, but please, please shop around for the Letro by sandoz...to try it before ditching it...so many ladies have come off it and found bc got resistant...its a really effective drug and could keep bc away for years for some people. Yes chat to onc.

raise your feet higher than you bum whenever you can when sitting down...

good luckxx

Moijanx

[Moijan]

Well, I did revisit letro...but bc now resistentxx

[bonariensis]

Hi FF Enjoy your rest, have a good break, happy anniversary and, when you get back, I hope your new treatment is kind to you.

B xx

[funnyface]

Carolyn, I was sure I talked about it in the beginning. Yes it was horrible! Especially the first 6 months. I still sometimes have extremely bad days, but not every day. I'm sad that another treatment has failed, but also relieved. I was supposed to finish my treatment next Sunday the 29th and have one week off and then start the new treatment. I decided yesterday that I wasn't doing the last week. That I was taking an extra week off before I start. Giving my body an extra week rest! Feel like I need it. I have now had vinorelbine, capecitabine, gemcitabine, letrozole/ibrance all fail. I also took abraxane/avastin and it was stopped bc they were harsh on me, but they said I could go back to it bc it was still working. Saving it for when I'm desperate for a treatment!! Starting to worry about running out of treatments. FF

Oops forgot to say, my hair is thinner too and breaks like crazy. Wish you could see the wild tangled bed head I wakeup with! I will have to take a picture and post it. It will give you a fright and a good laugh.

[Carolyn52]

FF
Its only the last few weeks I have heard you really admit about the pain from letrozole ..obviously as its finishing you are banging those pans in celebration !!
I just don't know with myself as I have extensive bone Mets any way ...so it could be those little blighters, the letrozole or even denosumab ....and a bit of old age wear and tear thrown in ..I do know for definate my hair has thinned ..if it continues I might have to do one of those partings that old men do when they have a bald spot ...ha ha .
Just as well we can laugh at times ladies
☺☺☺☺

[funnyface]

Ramade, That is true of chemo, but I don't know about hormonal. I don't know how long you have to wait in between, and how well the drug might work the second time. I know I would like to revisit vinorelbine. It was easy for me, I was getting it every other week, and it worked for 5 years. Just wish the USA had the oral form! 

[funnyface]

Chris, Letrozole has caused me terrible joint pain. One knee was worse th an the other. I even tried crutches for relief, but my arms ended up with huge really nasty bruises. Figured I would just hobble. My legs also really hurt below my knees in my tibias. They did calm down some after about 6 months. From a 10+ with tears fling down my face every time I had to stand up to about an eight. On work days I have to take 5mg of oxycodone and 3 advil to get thru 4 hours of work. I also take this if I'm going to be out walking a lot. I talked myself through each and every month of taking it. Letrozole also cause depression. Sorry I'm so long winded. Now, get your shoes on and go get yiur lovely wife some chocolates.

[Carolyn52]

Hello ramade
That is a very good question about revisiting hormones and I don't have the answers but if letrozole worked for 5 years ...ifs its been "rested" ...than in my stupid head surely it could rework again ????
But u r going on a good treatment as e and e has produced good results .
I did tamox and anastrozole for five years at primary stage and would hope I could revisit them once letrozole gives up on me ...
Xxxx

[Carolyn52]

Hello Chris
Poor ladybird ..disaster has struck running out of Easter eggs ..maybe Tesco have a half price sale and u could refill her supply!
Hugs to you both as usual xxx

[Ladybird]

Wow! Thanks ladies for your speedy replies.
We see the onc at Christie this week so we'll see if he can help suggest alternatives. Although if the drugs are working I guess it would be foolish to try others.
Ladybird's not a happy bunny at the moment. She has depression, problems after cataract surgery, hearing loss, pains in her legs, swollen feet and has eaten all her Easter eggs!
Keep smiling.
Chris xx

[ramade]

hi all, now here's a question! letrozole worked for me for 5 years, now it doesn't so i have to go on e\e. i'm sure

someone told me you can revisit drugs again if it's been a while, and that they might work again. has anyone else heard this?

hugs to all,

ramade

[Moijan]

I concur with the others about Letro. Two points tho 1/ if it's working then try to keep going on it if you can, it worked for about 7 years for me ... but when I stopped the bc came back and is now resistant to it .... tablets are far nicer than needing I've chemo if you can avoid that.... and you are far more free to track and do your own thing. 2/ I was on the original trial with the first form of Letro .... I had fewer side effects on it ...... the company has marketed a cheaper version which is exactly the same drug.... by Sandoz. Ask the pharmacy to get you that one .... see if the s/e are less as these days the pharmacies tend to buy the cheapest. Version of the drug* ..that month....to maintain their profits .many of which* are mixed with different preservatives etc... some of which can add to side effects. Boots used to be able to get the Sandoz version..... if you can't get it, shop around and try some if the others... see if one gives you less s/e


Moijanxx

[Carolyn52]

Hello Chris
If scan was clear then it could well be letrozole or denosumab ..I get loads of extra back ache and leg ache with denosumab ..usually about ten days after the jab and it can last a week or so ...I find ibruprufen works best for me if I need something but very rare do I give in. Old fashion hot water bottle at night for me .. or those stick on heat pads are quite good too ..I buy two for a pound in pound shop !! ( cheapskate that I am )
Hope the pain gets better for poor ladybird though as its miserable .
Xxxx

[rosie53]

Hi Chris, I'm a letrozole and denosumab girl, 18 months ago I got changed from tamoxifen to letrozole and I most definitely get get aches and pains from it, it is a well known common side effect, some days I feel 100 year old! If I've been sat or lay for a certain amount of time I get very stiff joints too.
Hope this helps.
Janette x

[Ladybird]

Hi ladies
Ladybird's having severe pain in her legs. She's had pain for years due to trapped nerves but recently it's been bad.
Could the Letrozole or Denosumab affect her? Is this one of the side effects?
Just wondering
Chris x

[funnyface]

 We will be in the corner together then!

[Carolyn52]

Ha ha Bon. .my hubby doesn't wear a hearing aid but doesn't listen either but bless his cotton socks always comes with me.

FF. ."nobody puts baby in the corner" but Carolyn belongs there with her two left feet!!
🎵🎵🎶🎶🎶

[bonariensis]

People don't know what to say. I never used to. You usually meet people in circumstances where it's not appropriate to start talking about what's really going on so you smile and say 'Fine'. There are some people I know I can say more to and a few I can let go to. I don't want to put people off chatting to .me. it's one of the things that keeps me going.

On a completely different note, you are advised to take someone with you when you go to see your onc. I take my husband. We were sitting in the waiting room when he said 'My hearing aid batteries have just run out' Luckily my onc is easy to understand.

B xx

[funnyface]

Love that movie! Hasn't helped my dancing! 

[Carolyn52]

Yes I agree FF ..sometimes when we don't feel 100% its nice that other people think we look ok . Like me I expect you do try to keep up appearances and make an effort even when we feel like sitting around in three day old Pjs and watching dirty dancing on DVD for 50th time !!
Xxxx

[funnyface]

I really do think people mean well when they tell us w e look good. I think everyone has the image of someone dying from cancer of withering away to nothing. I actually think I look good for what my poor body hasbeen through! Lol. It's been poisoned for over 11years, over weight, cancer, and its not a Spring Chicken either! If you want to tell me I look good go right ahead! Just don't say for some one who is dyjng!! FF

[Carolyn52]

She is actually a very nice lady and I think a slip of the tongue !
I hate being patronized though ..and you can see people sometimes don't know what to say. I suppose if they said gosh u look an old bag lady or something it would be worst .
We can rise above it all though !!

[Barton]

Oh good grief, Carolyn! You poor thing, being faced with a comment like that - I bet it took your breath away! I would have immediately burst into tears. She is obviously totally insensitive and thoughtless. Trouble is, being a neighbour, you are likely to keep encountering her.

Hugs and best wishes.

Barton.x

[rosie53]

Omg Carolyn! Can't believe she said that to you!....so rude, ignorant and thoughtless! 😡😡
Hugs Janette xx

[Carolyn52]

Good morning ladies
Mild irritation of the day:
Met my new elderly neighbour this morning ..she asked if I had a hip replacement bla bla bla and so I told her briefly ....she replied " wow you look too well to be dying from cancer" ...grrrr what are we supposed to look like ? Should we have a warning tattooed on our foreheads or wear a badge !!!
Xxxxx

[nicky08]

Hooray for all you stable Mabels - enjoy it esecially when you are on a treatment such as hormones which generally aren't as harsh as some of the chemos etc.

Nicky xx

[bonariensis]

Natalie
Glad to hear your TMs are stable, good luck with your scan. I was full of gloom and doom before my onc appt on Wednesday as had all sorts of pains in my pelvis that had appeared recently but it seems c was not to blame

B xx

[Carolyn52]

FF
No we don't have Klondike bars here but I googled and they look yummy ..could easily munch away on them.
Boo hoo ..haven't had my Magnum bar yet today as we have my son's dog and hes on a strict diet as vet said he was overweight ...I normally share it with him but didn't want to tease him so have gone without !! The dog was allowed an Apple for his lunch!!
Xx

[funnyface]

Carolyn, We sure know how to celebrate and spread cheer! Do you have Klondike bars there? I love them too! 

Stable Mables, I'm tickled pink there are so many of you!! With Springs arrival and all this good news everyone should be floating around in the clouds! Long may it continue!

Janette, You made me think of my mom.When she would come watch my kids she would do all kinds of chores. The ones I didn't get too very often. Like lint out of the tube to the outside dryer vent, scour the bottom of pans til they were spotless, etc. I do things for my daughter too.

Have a good day! FF

[bonariensis]

Thankyou everyone for celebrating with me, My granny's name was Mabel, never thought I'd end up using it.
I go round and do some cleaning and tidying for my daughter sometimes. She suffers a bit from depression and has chronic back pain and her husband has been abroad for 6 monhs. My son and daughterinlaw came up from Cornwall and helped her blitz the house yesterday which was pretty good! The ironic thing is that a friend now comes in and does a bit of cleaning for me. She says that another person she cleans for goes and cleans her daughter's house. I tend to avoid buying clothes that need much ironing.
My legs and feet are aching something dreadful. Had denosumab yesterday, hope they feel better soon although that's not where the c is.
I have now been on exemestane for 17 months. My next scheduled appointment is in October.

love to all B xx

[Barton]

Hello Janette, well done for being brave and ringing your BCN! I don't think much of you having to do your daughters ironing, though. Mum's, though, will do (almost) anything for their daughters, I know.

Hugs. Barton.x

[Barton]

Brilliant news, Bon! Such a weight off your mind, and after such a long wait, too! I'm so pleased for you! All hail (?) to Exemestane!

Hugs. Barton.x

[Carolyn52]

Jeanette
I hate to admit but twelve weeks without denosumab ..I did ache a lot more too. I had my fix two weeks ago and beginning to be like a little Duracell bunny again with it.
🐰🐰🐰🐰🐰

[rosie53]

Carolyn, with TMs they tend to look at the trend rather than the number, 18 months ago before she switched me to letrozole they had been slowly rising, they were at 167 then.
Will still be glad when my CT results come in though.....don't like to "count my chickens before they hatch" been worried about my increased aches and pains but hoping that's down to the denosumab change (gone from 4 weekly to 8 weekly)
Hugs Janette xx

[Carolyn52]

Hiya Jeanette
Well best of luck with the ironing ..youngsters just don't do it ....
Although I don't have tm done at my hospital that is surely a amazing low count ? I read on another site of a lady with them at 5000 and she was still working full time and running !!
You scan has come around fast again ...you certainly get good after care at your hospital.
Talking of dining tables ..I burnt mine whilst ironing on it ..so turned the bad bit towards the wall where it won't show !!
Xxxxx