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Bone mets - please join in

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Re: Bone mets - please join in

Thanks Jeanette
Been trying to keep busy this week but now I must put on my big girls pants ( only m and s ones!) .....and face it .
Corey ..I shall be at hospital tomorrow but different end of hospital than you ..maybe we might just bump into each other ..I prefer the coffee and cake in oncology rather than oasis . Hope Jamal is doing ok ...
Hugs xx
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Hi Carolyn, sending you good luck (((((vibes)))))) for your ct results tomorrow.....not that you need them!
Hi Barton, I agree with you, I think most cancers are just down to pure bad luck too!
Hugs Janette xx
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Hi everyone its lovely and sunny again here nr bude. im getting myself into a state as im off to have my pet/ct scan tomorrow and i still hate needles.i will be thinking of the cake and coffee after as i am not allowed to eat anything 6 hours before.i am confused as before i had radiotherapy to my sacrum for the bone met i didnt have any pain now i do . has anybody else had this ? hi to srilata am i right that you live in somerset . i lived there nr yeovil until we moved to devon 11years ago. 

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Hi Chris, nice to hear from you, I also have my treatment /scans at The Christie, last time I chose the orange flavour drink and it wasn't too bad, had the blackcurrant the time before but you could still really taste the strong aniseed flavour and wasn't very nice.
Good luck with her results, please let us know how she gets on.
Hugs Janette x
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Hello Barton
I read sonewhere that breast cancer often starts in the hip and can be there having a party before a breast lump is found .
Surely it would be hip cancer that has metasized to the breast then?
But like you say its mostly bad luck really . We all got dealt the unlucky card.
Hugs xxx
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Hello Nicky and ff, I read an article a couple of weeks ago that said they have found that breast cancer cells travel around the body much earlier than first thought - even before you know you have breast cancer, or is detectable, in the first place! I have come to the conclusion that it is just bad luck.

 

Hugs. Barton.x

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☺good suggestion.
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Hello Chris
I'm so glad u are checking in on the thread as although I usually create a load of worthless banter ..there is a lot of info here too from real people !!
I'm waiting scan results too but in my hospital I don't have the drink before the scan just the iodine injection ..maybe your wife could ask for a bit of gin or vodka mixed with the drink to make it a bit more appetizing !!! Ha ha ..
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Hi ladies Ladybird checking in! Reading this thread is so very informative, we've learnt so much more on here than from other sources. My wife Ladybird goes for her ct scan this week at Christie to see if the Letrazole is still working. She's not looking forward to the flavoured drink beforehand! What's your favourite flavour? Her main problem is leg pain but she has suffered with sciatica for years so the cause is blurred. Interesting that Letrozole causes tiredness as we both suffer from this and thought it was our age (72)! Thanks again for the opportunity to chat. Chris
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Hi all, funnyface, I just want to say that I never had tamoxifen either, I was very young when I had the primary but I now know young women are put on it, I don't know why we weren't. Anyway maybe that's one that could be added to the list now. I'll ask next time I'm in.

hugs

ramade

 

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Hi ladies

Sorry to hear about your results FF but it looks like you have a plan A! I'm also changing treatments soon and just jumping through all the hoops here to get on a targeted trial at one of our main cancer hospitals. As to whether your BC would have come back if you had been given tamoxifen after your primary, who knows? I was grade 2 (nearer grade 1), no node involvement, early detection etc etc and put on Tamoxifen but it still came back. It may have been protocol in general (to go onto tamoxifen), and possibly delayed the onset of secondaries, but this is such a clever disease it finds its way around all obstacles when it wants to! I'm only saying this as we'll never know the 'what if's and it's tough enough anyway without wondering if we should have taken or been given a different route. Sorry if I'm saying something out of line but I respect your positivity about all of this cr@p but know how progression, especially if not expecting it, can knock us back. Been here, done that, several times! Hope you get on well with the new regime when it starts and it's easier on the aches and pains than letrozole has been.

Hi to all other mets ladies, hope treatments are going well and side effects kept to a minimum. Although I've not been posting so much lately (due to trying to sort out my own situation and change of treatment) I do read every day so am with you all in spirit 😊

Nicky x

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Well FF ..that explains it but protocol is changing all the time now with primary ..I think they do ten years on hormones now ..and a special test on tumour is done to assess the risk reaccurence.
In 2003 ..it was lumpectomy, rads,chemo and five years hormones ..then discharged from system ..no scans just on your bike ..your fine !!
All we need is the magic bullet now.
Xxxxx
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Glad to hear these other hormonal sound easier than letrozole. Truly having hope to get rid of some pain. Will be on it til May 8th. Then the new drugs.

 

Girls, I wasn't offered tamoxifen after my primary. I went in for one of my yearly check-ups (7 years out) and asked why I wasn't getting it. Oncologist said it wasn't protocol for my age, at the time and no node involvement and I had done chemo and a bilatelal mastectomy. He said, since it had been 7 years no sense in starting it then. He said with the knew knowledge of 7 years later if I was just going through this he would have probably given it to me, but felt it wouldn't do anything for me to start it after the fact!! I think he screwed up!!! I went to my surgeon to have my port placed and she was going over my records and said I shouldn't be in her office!! She said with no nodes involved and my type of cancer and the use of tamoxifen it shouldn't have come back! When I told her I hadn't been given tamoxiifen she slammed her fist on the table! I told her what the oncologist said and she rolled her eyes!! She said, "Well there is no use in crying over spilt milk!" This then made me know I should have had it, nd maybe I wouldn't be in these shoes! FF

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Jeanette
I'm the same but today I'm pain free and dashing around doing washing like you ..where does it all come from?
It's hard to know whether the bone pains are progression , letrozole or just old age ? Guess that's why we have scans ...
Better get the ironing board ready ..yes I'm old fashioned like things ironed ..not like my kids that don't bother that much ...
Hugs xxx
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Carolyn, I also had no problems at with tamoxifen, it was a breeze compared with letrozole, I feel 100 years old with that! but it's keeping me stable so it's a case of shut up and put up, a small price to pay me thinks!
Beautiful day here today, lots of washing going on!
Hugs Janette xxx
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Nurse just arrived ..vein first time and oodles of blood ..a bit different to last time when it was only a dribble !!
So the hot water bottle and lots of water thing does work .
Hugs xx
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Well I'm sat here waiting for my nurse to arrive to do my blood test ( yes I'm spoilt getting it done at home) I've drunk my body weight in water and warmed up my veins ready ..but no nurse ..she's late !!
Hope everyone is ok today ..
Interesting FF ..that after all your years of treatment ..you have never had tamoxifen ..think most of us have had that one at primary stage ! Not showing off but I took it and had no.problems with it.
Hugs xxxx
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hi barton, yes exemestacine is much easier than letrozole because i felt like a 90 year old woman and now feel my age is rapidly dropping back to normal.

thanks for your reply, this site is wonderful!!

ramade

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thanks neighbour, interesting about everolimus being withdrawn because that is what i've tol will be added in one month. i'll check that out when i see the prof and come back with details.

ramade

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funnyface, thankyou so much for taking the time to write this, it is so useful and you have made me see i should not take no for an answer. thanks to you i am booking an appointment with a professor of oncology for a second opinion as i have been refused palbociclib because it is expensive! my husband had read all about this drug and thought it sounds really good. thanks again, your encouragement has maybe extended my life. i shall keep you informed. hope you're feeling well.

dinosaur hunt was great but now i have to up my game with the garden easter egg hunt on easter Sunday!

ramade

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Hi Ramade, My oncologist said because I was on a combo treatment that just failed that a single agent would not work as well now. I don't know why! I've always only been on single agents of chemo. for almost 9 1/2 years. Then when it was decided to do ibrance (palbociclib) it is given with letrozole, I had my first combo. I never really had hormonals before that. In the beginning of this second�ry journey my old oncologist had given me 4 months of lupron injections to shut down my ovaries. It didn't work. My tumors grew.  He put me on chemo right away. He told me if the lupron hadn't worked that no hormonals would ever work. I went for a second opinion and that oncologist said he agreed I needed chemo. He said that he wasn't convinced that hormonals would never work. He said that he felt my oncologist didn't do anything wrong, but thought he went to light with treatment. He said that lupron would shut down the ovaries, but he would have also given me something to shut down my adrenal glands because they produce hormones. He said that if I ever wanted to try hormonals and my oncologist refused to come see him He would try them on me. When I saw that palbociclib was approved and I had just had  a toxic reaction to gemcitibine I felt my body needed a break from chemo. In the almost 9 1/2 years I was given one little break from chemo. All my chemo was back to back! I told my oncologist I wanted to try palbociclib/letrozole. He said no at first, but I sat there dug my heels in and argued. He finally agreed. Well it worked!! I got the average time out of it! He retired after I was on it for 4 months! I so wish I could tell him he was wrong, that it worked! I had wanted to try tamoxifen this time because I've never had it. That is when my new oncologist said no, that a single agent wouldn't work as well. She said maybe down the road if we get this new growth stopped. Sorry this was so long but thought having the whole picture kind of helps explain what her thinking might be. 

 

I was excited to see that you aren't as tired on the exemastane. I have been very tired and in extreme joint pain in the knees from the letrozole. The pain started within 2 weeks of taking it. I started it 2 weeks before the palbociclib, so we know it's the culprit for the pain. Then the palbociclib has made my legs weak. I have a friend who was on this combo and it recently failed for her too. Her leg strength has been comining back! I have hopes of being in less pain, legs stronger, and more energetic! Time will tell!

 

What are you doing for your dinosair egg hunt? You have my curiosity! It sounds like it will be a good time! FF

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Hello, ramade, and welcome, although sorry you have had to join us. I can't help with the combo thing, as, apart from my original IV chemo (FEC-T), I haven't had a combination of anything. I have, however, been on Exemestane for a little while and I found it really easy - far easier than my previous hormone therapy which was Anastrozole. Good luck, anyway.

 

Also, another Devonian checking in! By the way, I'm jealous of your dinosaur easter egg hunt - that sounds amazing!

 

Hugs. Barton.x

 

Edited to add: I should have said that I am no longer on Exemestane, as it was found that I was very weakly hormonal, so was taken off it. It was used as a break between cycles of Capecitabine anyway, which I have now returned to. Am currently on Cycle 27 of Cape, but have had a couple of short breaks and one long one between some of the cycles.

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Hi Ramade, I have been on just exemestane for 18 months. There was a possibility of combining it with everolimus but then that was withdrawn, I haven't heard of any other combos with exemestane but I'm not the best informed person here. I shall find out soon whether it's still working. I have had very sore feet but then I'm quite old so was probably due to get them anyway. I'm glad you feel better on it and hope it does its job for you. I'm another Devon person  Lots of hugs B xx

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hello all, thanks for everyone's replies, i don't feel so alone now.

funnyface i am interested that you are being put on a combo i am just being given exemestane, do we give combos in the uk? i've no idea.

carolyn, glad to be your neighbour.

dinosaur easter egg hunt today with children

ramade x

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Welcome Ramade, Sorry you are feeling frightened! Every one of us gets scared all over again when our cancer acts up and spreads again! It is diffcult to face the changes in treatment. You read the list of side effects for the medications and it worries you to even take it. I know this cancer can spread anywhere but I don't know anyone with it in their throat. I live in the USA and my treatment just failed. My cancer us in my lungs, lymph nodes in chest and spine (T-11). Beginning May 8th I'm scheduleded to start exemestane/evermolinus combo if I can get funding. Not sure what the plan will be if I can't! Hugs! Let us know how you're feeling! FF

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Jeanette
Envious of posh tea out tomorrow ...in my world its sandwiches without crusts !!!

I haven't had denosumab bone injection for twelve weeks because of teeth problems and my bones are really more achy without it.

Ramade ..we are nearly neighbours ..I live in Devon ...think we are lucky to have cream teas on sale everywhere ..yum.
Xxxx
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Hi everyone i am happy that my TM has gone down to 170 . But i am not sure if this really means that met has become slow and stopped spreading. But my calcium level is so low that i cannot have zolendronate injection. This is affecting my spine and my pain has worsened. There seems to be no relief.

Ramade you will find a lot of support from everyone in the group and share your worries. Since i joined i feel much better and less frightened. Hugs to you

FF i did not have any idea about how the combo functioned. I guess everolimus is the main medicine. Hope you will get your financial approval all the best
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Ramade, I have been on letrozole for 18 months now and the fatigue/exhaustion has been the worst side effect, some days I literally feel 100 years old! But it's keeping the little blitters at bay so for now it's my best friend!
Good luck with your new treatment.
Carolyn, the sun is shining here now, was a bit damp this morning but nothing too bad, it's meant to be a lovely day tomorrow, me and hubby are off for a posh afternoon tea.....my determination to cut out the cakes is just not happening!!!
Hugs Janette xxx
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no, it's lovely and sunny here in somerset and tomorrow is supposed to be even better!

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Ramade
I think all the hormone pills carry side effects but hopefully exmestance will be a little kinder to you ......but at least its still one stop still before chemo !!
Hope the rain is not too heavy where u are ..we had a huge downpour mid morning here but it didn't last too long ...but my poor son was out with his dog ..no shelter and got soaked but as I said to him "skins waterproof" !!
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thanks carolyn, i can tell you that after 5 years on letrozole during which i felt exhaustion all the time, this feeling is starting to lift already so i hope the exemestane will work just as well.

ramade xx

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thanks Janette,

ramade xx

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Hello remade
Welcome to the forum and I hope u will find lots of info and help here ...
I have been on letrozole for 18 months for my bone Mets and hope that it continues to do what it says on the tin!!
I'm not very good with medical stuff and I think you are the first lady here with Mets to the throat which is unusual so you are unique !!
As you will see on this thread we do a bit of everyday banter too away from the " c" word .
But if you use the search option you might find older threads from ladies with similar.
Please feel free to rant shout and scream as we understand you ..all been there and got the teeshirt and we are real people here !
Xxx
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Hi Remade, sorry you have had to join us but you are very welcome, we are a friendly bunch.....and sometimes a little crazy 😃
Please feel free to ask any questions, there is usually someone who can answer.
Hugs Janette xx
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hi everyone, i'm new to this site. my breast cancer has been in the throat for 5years and i have been on letrozole which held it back but now it has spread to bones(c3 and c4)  top of spine and a bit in the lung.

you all seem so brave and i feel so frightened, i have been put on exemestane now so hope it works. i'm going to be a regular on here now hoping that all you brave ladies can give me some positive vibes.

thanks for reading

ramade

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FF
Enjoy your special breakfast ...bet its a diet one ..not ..ha ha !!
Yes we are always a bit envious at the new treatments u get in the US ..but not of the battle with medical insurances to actually pay for everything that u have to do!!
Xx
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Grrrrrr for you girls too. This life line should be available to all!! 

 

Have a good day, headed out to breakfast it's my daughter's birthday. FF

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Hello Maggie
Welcome to the forum ..please stay and join in.
Evorlimus was removed by NICE ..a few months ago ..not sure if its available by special request . There will still be ladies here that are able to continue with it if they are already under existing treatment.
Another option removed due to cost.
Xxx
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Wishing you all the best with your treatment, funnyface. 

Carolyn and bonariensis, please can I ask a question? I thought Everolimus was NICE accredited in the UK. Have I got this wrong?

Best wishes,

Maggie

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Funnyface
It's not good having to worry about funding as well as everything else you're having to cope with. I shall try hard not to moan about our NHS and be thankful for it. A leaflet about everolimus was waved at me at one stage as a possiblity but by the next onc appt it had been withdrawn.
There seems to be a general consensus about which option you should take.
Stay strong Hugs B xx

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Carolyn, I trust her! I just never heard of that before about combos. I'm sure there is differing opinions on the subject! FF

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Hello FF
I'm sure the plan b anniversary trip will be better as it was going to be a long road trip for you.
I don't know anything about combo drugs ..I'm still on letrozole and hoping its still working ..not sure what the next option will be when it stops ..try not to think about it.
At least with E and E ..you keep your hair and I think I read sonewhere its kinder to the joints as well so maybe your knees will recover.
Anyway ..you have to trust your oncologist to do the best for you ..but after all these years ..bet you know more than she does !!!
Hugs across the pond xxxx
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Srilata, Thanks!  I'm sure we will be chattitg about this combo if I can get approved financally to get it. ! Happy it is working well for you! 

 

Barton, Thanks! I will be happy to go anywhere! Just need to get out of here!!

 

 

 

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Janette, I agree on the financial issues. No one should have to fight for medica�ions they need! If I were a politician they would see that I got it. People here in the US think your national health care is the best! I try to tell them it is full of problems too! I tell them about how drugs were wiped off the list for you ladies. That you all seem to wait way longer for results and action for changes in meds. Maybe they should ask the people what we need!! How about the government cutting back on their spending!Let us put them on a budget! FF

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Ff, that holiday sounds perfect for your milestone anniversary! And yes, you really should celebrate seeing as you missed out for your 30th.

 

Sorry, however, to read of your latest CT results. And sorry you have been faced with such a hard decision. For what it's worth, I agree with you and everyone else, that Option E sounds the best for you. It also leaves things open further down the line if they are needed then.

 

Good luck and best wishes. Barton.x

 

 

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Carolyn, Yes Kisqali (ribociclib) has been licens�d.We discussed it yesterday. My oncologist says it works exactly the same as the ibrance. She feels it won't work for me. She feels I wouldn't get approved for it right after having ibrance. She said she isn't saying no to it entirely, that maybe in the future we could try it. She would like to "follow" it for a bit and see what happens if others do it after ibrance and the results. I don't know if you have ever heard of "revisiting" a drug. Some times when you have had a drug fail you can try it again years later and it will work again. We both felt this is what it might be like to use Kisqali. We both felt even though it's a different drug bc it works the same way as ibrance that maybe with the time in between it would give it a better chance to work.

 

I have a question and wonderinf if any if you have heard this? She told me that once you do combo drugs that it usually d o sent work to go down to a single drug. That you really need a combo? I've never heard this? I really haven't paid attention to mother's drugs to see if they have done a comb then tried a single drug next time. FF

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Helen44, We were supposed to go to Florida but our refrigerator broke, and both cars! The cars were very expensive repairs so no money for Florida. We have a friend with a shore house in New Jersey. It is right on the bay! You walk out her door onto a deck and the outer edge of the deck  is over the water. It had been destroyed by hurricrne Sandy and hubby and I helped them get it back together. They said we have ear n ed life time free stays! We can take our dog too, so don't have to bother anyone to watch her. She loves it there. Margie and Brian like our dog and always tell us, to bring her! It will be perfect! FF

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FF
I read that Kisquali has been licensed in the US ..it's similar to ibrance so maybe another option for you but it does have a high heart problem side effect for the over 60s .Hugs xx