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Bone mets - please join in

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Re: Bone mets - please join in

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

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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

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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
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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

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

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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

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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.

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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
☺☺☺☺
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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! 

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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.

 

 

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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
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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
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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
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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

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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

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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
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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
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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
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 We will be in the corner together then!

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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!!
🎵🎵🎶🎶🎶
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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

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Love that movie! Hasn't helped my dancing! 

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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
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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

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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 !!
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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

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

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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

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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
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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

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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

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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

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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

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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.
🐰🐰🐰🐰🐰
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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
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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
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Well after hearing Bons news I plucked up the courage to ring my bcn for my tumour marker results.......still nicely sat at 19! 😀 got my CT a week today then results the following week!
Carolyn, nice to hear you have that washer going, I'm sat waiting in at my daughters house for the delivery of a dining table, she kindly left me a pile of ironing so I wouldn't get bored though!!
Hugs Janette xxx
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Come on ladies that just read this thread ...if you are a "stable mabel" then let us know as it really boosts moral that treatments are effective against this disease!!

Happy Thursday everyone ....I'm going to jinx the weather ...load the washing machine and get my summer clothes out of hibernation..Time to pack away the furry boots and sloppy jumpers and show off the lovely winter fat !!
Xxxxx
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Bon, yeyyyyy that's great news, our Stable Mabel club is growing nicely!
Hugs Janette xxx
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Bon
Whoop whoop whoop .so pleased for you to join the stable mabel club but with FF making so much noise with her pan lids I've decided to have an extra Magnum lolly in celebration today for you !!
👍👍👍xx
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Bonariensis, Oh my I've got my pan lids out again! Bells on my ankles and tooting my horn! Excellent my friend!! FF

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Carolyn,  Glad you found something to help with your chocolate fix! Yes we have those Magnums! Very dangerous! Only brought them home one time last summer!! Best not even to go up that aisle at the store! Yes I am nervous. I've done fairly well on all my treatments with side effects. The worse was gemcitabine when I couldn't breathe. Some of them were a little tough, but could have been worse. I just feel too lucky sometimes, and get nervous that one of these treatments is going to really bad sometime. FF

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Hurray. I'm another stable Mabel!
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Thank you girls! Changing from zometa to denosumab as my veins are extremely hard to find! 😔 Bit worried about having more spasms but will have to see... seeing the onc next week and he'll tell me when I'll have my first check up scan... watch this space for anxiety/nerves etc etc etc.
Hope you all have been well enough to enjoy a bit of sunshine. Xxx
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Hello FF
Yes my teeth are better now but I do treat them with respect as they old teeth now.
I've enjoyed Easter choc but gone off it a bit and switched my daily habit to "magnum" ..not sure if u get them in US ..they are icecream on a stick with thick chocolate on the outside ...yum very nice.
You must be a little nervous at switching your treatment soon ...it's like comfy slippers u get used to the existing ones !!
Hugs xxxx
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Carolyn, Oops I'm a dummy. I forgot what thread I was on and typed you a message on the evermolimus/exemestane thread. FF