Srilata, so sorry you are having such a bad time. I can't really give you any information but I hope that your next treatment works well. Did you manage to go on your holiday?
Love and hugs to all
Hi ladies and to all in the Grandma/Grandmom-to-be group.
Our little grandson is 3 months old now and doing very well, smiling and laughing away -which doesnt half help the parents when they are so exhausted! He is a very contented chappy and I do keep telling my daughter that she's very lucky that he is - she certainly wasn't so 'good' - but then again she was 7 weeks prem so that added to the hard work. Glad your grand-babies are home now and you get to have lots of cuddles Carolyn, it must be doubly exhausting though for their parents. Not long now FF and I do hope you get your surgery over and done with very soon so you are not in so much pain - all the better to cuddle your new Grandaughter.
Thanks for asking about the exestamane Carolyn (I still can't spell it so this could be right or wrong as I'm on the pc whereas my ipad makes the right suggestion for spelling all the drug names/treatments!). I must admit it is so nice not to be on any form of chemo or IV treatment at the moment. The last time I was only popping a pill for my mets was back in 2013, since then it's been far more blood tests and hospital visits than I can to count. Not really suffering with the usual SE's of hormonal treatment (and I would recognise them having already had several different types of tablets/hormonals) but definitely notice the higher energy levels I have which is such a bonus. Big girl pants time happens after Christmas so we will see then how the little pill is working, fingers crossed that it will for a while at least.
Take care all
Thank you Nicky. Five weeks to go! Baby is in position. I need to get through this surgery, so I'm ready. I hope you are enjoying being a grandmom. FF
Great news jellytot! Get out there and enjoy Christmas. I hope the current treatment you are on is treating you more kindly than what you started on - we do all need to lead our lives as well as kicking BC in the butt! Hopefully you will also be fine with denosumab - it's the bone strengthener that I have had the least side effcts with - not to mention not needing to play hunt-the-vein.
Hi to all other mets ladies, hoping you are able to enjoy this time of the year without too many problems either healthwise or just in general, it's not always easy for everyone.
Also, Carolyn, I keep meaning to ask, how are your twin grandchildren doing? I'm so foggy brained these days I can't remember if they are boys or girls but I know they were in special care. Are they home yet, I do hope so for Christmas. Having had a prem baby myself some 29 years ago it is really difficult seeing them in the SCBU but pretty hard when they come home as they are so tiny - and that was only one baby not two at a time.
And not long now for you, FF, for your first grandchild. Something to really get excited about in the New Year. (edited to say - 'as you can see I didn't quite read down to your post FF! You mentioned your granddaughter then so I should have caught up with everyones news before I added this post!')
This must rate as one of the best Christmas presents ever. So pleased for you. Have a good one.
Hi Jellytot, amazing news and what a fantastic early Christmas pressie! So thrilled for you and hope you have a very merry Christmas...sure you will! Kxx
Jellytot, That is the best news ever!! What a major relief. Now, you can move on and enjoy your holidays! Clanging and banging my pots and pan lids!! Will have a glass of wine later to celebrate you! FF
I'm unbelievably relieved to tell you that the lesions in my brain are not mets! I had to have numerous scans and referrals to specialist neurologists and they have finally said they are not concerned and think they could have just always been there and never would have been found had i not had the scans! They just want to scan me again in 3 months time to see what's what.
I can't remember if I said previously or not, but I am off the trial drug. It was making me too mentally unwell, so for now i am contuing with letrozole and my bone strengthener (which has been switched from zoladronic acid to denosumab becaue of my rubbish veins).
I hope everyone is doing as well as possible, I have missed you all!
Hello, dogsdinner. This is just to say 'welcome', if that's the right word. You know what I mean. You have come to the right place here.......so many wonderful ladies, with so much experience, and so willing to share. Say what you like and ask what you like. Nobody here is surprised by anything! I have bone mets too....primary in 2001 and secondary almost 3 years ago. At the moment I am in the middle of changes because a small liver met appeared. I find such a lot of support and advice here, as well as people carrying on their lives and laughing too! So do visit regularly, and feel very welcome! Everyone is interested in each person here......so do keep us informed and up-to-date!
Welcome Dogsdinner, I was on letrozole and palbociclib for 21 months. Everybody is different but the letrozole within 2 weeks made my knees scream. The ladies on here say different brands are sometimes better than others. I tried another brand and it didn't help the knee pain. Palbociclib has caused weakness in the legs in some people. I would suggest doing some leg strengthening exercises. The strength does seem to slowly come back when you're off of it. All of this being said it is an excellent treatment. I have lung mets and one bone met. I was told I had about 2 years to live. I've been here 12 years. I still work PT and do very well. I've had a few set backs. One in 2012 and a year after it my oncologist said he was amazed that I was still here bc he thought the set back was the end for me. Well, 5 years have passed. Twice I've had to go on O2 and then managed to get off of it.I'm having a another set back and hoping to recover from this one too. I can't say I'm not scared, but keep focusing on the arrival of my first grandchild in January. Baby is a girl.
It takes time to get over the shock, but you will find a way to keep moving. I wish you the best in this! We are here for you.We will listen to you cry, scream, or laugh. Whatever your need may be. Hugs! FF
Ramade, Nicky, Jo - I don't have to tell you how much your posts mean to me, I'm crying so much I can hardly see the keyboard so forgive any typos! But they are not the desperate tears I've been shedding lately, more relief at having some positive feedback, I am so sick of the doom and gloom I've been getting. I was going to write Xmas off this year but dammit I'm going to try to enjoy it. My love and thanks to you al xx
Hello dogsdinner, I so pleased you have received lovely reassuring texts. I would like to add, don't worry, I see a different oncologist each time and there is one I hate seeing because she is always doom and gloom and last time gave me codeine and sleeping pills. I have not touched either. I have bone mets in half my skeleton and have had radiotherapy on my spine which I am still recovering from. I think Nicky said don't google and she's absolutely right. People with bone mets do seem to be living for a long time, that's a really excellent treatment you've been put on so take it, try to relax and enjoy Christmas.
I forgot to add to my earlier post that welcome, if that's the right word, to all new SBC ladies. Something we never wanted or expected to happen but unfortunately for all of us on this part of the forum, it has. We do have a huge amount of experiences between us all of treatments, side effects and options that are available so do ask away, there's usually someone who can help.
riversidedawn, I have seen your recent posts on here and know your log in name from the primary part of the forum so, as with all of us you, must be gutted to be told you now have bone mets. In most cases with bone mets there is more than one site, it's very unusual to only have one bone met so I'm not sure what other treatment your oncologist was expecting to give you when the first nine met was found, unless it was surgery? Whatever the treatment plan is it does treat the whole body so all bone mets would be treated (unless it is surgery or radiotherapy). It will almost always be a bone strengthener plus some other systemic trearment depending on the type of BC you have. Once that has been established feel free to ask any questions as between us secondary ladies we've covered most of the options and can help give advice based on our experiences. I will say don't worry, but we all know that it's almost impossible, especially when you don't know the full story and treatment plan. The only thing that having secondaries has taught me is live each day and enjoy each day and don't sweat the small stuff!
Great reasuring post Nicky! So many ladies here with bone mets and still living life to the full years and years on from diagnosis , awful of your oncologist to be so negative , yes it changes things but still very treatable for the majority and positivity from the team looking after you is vital!
You will pick yourself up and the stories across the forum will really help, this isn't a place of constant gloom , so many strong determined ladies to talk to! Xx Jo
How awful that the expressions from the oncology team were so bad that they made you feel bad. However I know what that feels like as I had the same thing in 2008 when I found out I had a local recurrence. I was due to have a mastectomy and had a CT and bone scan as part of that process. They showed up bone Mets and the look of doom on the nurses face told my husband that it wasn't good news before the oncologist had even spoken. However I still here nearly 10 years on living a pretty normal life, up and downs of course but generally carrying on, luckily with no pain which I know bone mets can cause. It will take some time to adjust to this diagnosis and one thing we all advice is do not Google anything! The facts and figures are way out of date and only ever quote 'averages' and we are not 'average' we are individual. There are lots of treatments available and the ones you will now be on are the newest combination of hormone treatment with a tried and tested bone strengthener. You have come to the right place for advice and support as we do all know what you're going through whereas a lot of your friends and family won't have come across secondary BC so won't understand what it means. Take your time to adjust and know that you are not alone in all of this. There are also quite a few ladies on here that have had the double whammy of primary and secondary diagnosis at the same time so it's not as unusual as you may think.
I turned up to find out date for lumpectomy to be told it had spread to bones. Am now scared and depressed. Treatment is letrazole, palbociclib and biphosphonate infusions. The oncologist and the nurse were very gloomy and I got the impression that the prognosis was not good. I want to be optimistic (I am by nature) but finding it not possible with this hanging over me. Some positive feedback would be most welcome.
Thanks Funnyface and Carolyn. Scan booked for next Wednesday and oncologist promised to get someone to call me with results before Christmas.
No Bentsen, if you want you can read the post a bit further down
after I had been on it for a few years, I found the pharmacy would get the cheapest, did some research and spotted Sandoz was made by the same company - then Boots were getting the Sandoz one for me on request...they won't now. Sorry
Riversidedawn, I'm sorry I haven't welcomed you yet. I'm Funnyface and from the USA. I live in Pennsylvania and live about an hour west of Philadelphia. I had my primary cancer Fall of 1995! Then 10 years later found out it set up camp in my lungs. I've now had secondary cancer for 12 years. I've just had a set back and need surgery for 2 fractured vertebrae. I've been trying to find out why I've been in so much pain for soon to be 3 months. Finally the MRI showed the fractures. Surgery is next week if I can get pulmonary clearance for sedation.
I'm sorry you had to join us. There is a great deal of information and understanding by all these lovely ladies. It Is so nice to be able to come here for support . It is a great place to vent and give our families a break. It is very difficult to hear things one by one as they find them. I think it would be much easier to have all the scans they think we need. Call us in lay it all out on the table and give us our an of action. Do not get discouraged if their first plan doesn't work. It happens. Also hormonal treatment can take a bit to show if it's working. The response isn't as fast as chemo. There are a lot of options in the doctor a bag.
I wish you the best. DR
Hi Maggie, yes, but Fulvestrant hasn't been approved for general use it too, is a kind of endocrine therapy...for mets Ladies. Moijan😀😀😀
Yes.! Carolyn, I spotted that when I was taking it, Sandoz address is exactly the same as Novartis and it did cost about £10 pm..whereas all the copies range from£2-4 per month.
another interesting fact..nothing to do with letrozole, but Sandoz make several antibiotics, I was on pen v and Sandoz pen v had much less side effects. I also occ have to take clindamycin and Sandoz version is kind to the bowel, whereas others gave me tummy aches.
I now try and get Sandoz versions when I can - they are more expensive tho...Boots tell me they don't stock clindamycin by Sandoz for that reason..and they were stocking Sandoz letrozole,...but don't now! Just for a few pounds profit!
the drug companies have a lot to answer for!
Carolyn you're a star. Perfect timing. Phoned chemist today and still no joy with Accord. Told me the names of a couple of brands he had in stock. Got home from work and read your post. Chemist is open until 7pm. Straight in the car and home with Sandoz. Popped the little orange pill, sat on the sofa for 10minutes waiting for a side effect, got fed up with the One Show and took the dog for a walk. Decided to start Sandoz straight away because I would just worry about it and convince myself I would be miserable over Christmas.
This is what I love about the forum. Always somebody there for you.xx
I've just heard the good news that Palbociclib has just been approved for use in Scotland - and if I've read the press release properly it's for use with an endocrine therapy or, following that, for use with Fulvestrant.
Hope that NICE recommends it too for use with Fulvestrant as more of us would then have a chance to use it.
Unfortunately there is choices to be made. Each of us are unique in our responses. When we make choices about treatment the professionals and us are trying to make the best educational choice we can. There is no guarantees. We can not beat ourselves up. We can just keep trying and hopefully enjoying whatever time we have. Hugs, ladies! FF