FtF, I take the blame for it all! I was too trusting and naive! I was raised that you say Yes Dr., thank you Dr. Never that naive again! FF
Nicky and FtF, When I first started with mets I had lupron injections to shut down my ovaries. At 4 months tumors were still growing. Oncologist decided I wasn't hormone positive enough and that no hormonal would work for me. I went for a 2nd opinion and that oncologist felt lupron wasn't enough bc it only shuts down your ovaries and not your adrenal glands. He said if I ever wanted to try hormonal and my Inc wouldn't do them to come see him. Take a big leap over 10 years of chemo and palbociclib came on the market. I wanted to try it. My onc said, NO! He said he would only give it to me if I had my lung tumors biopsies again. He said we needed more evidence it might work. We got in a big argument. I said I wasn't risking having my lungs biopsied again. They were in great jeopardy of collapsing 10 years before, so I wasn't risking it. I said when you give me chemo it's a game. You don't know if it will work so I want to take a chance and see if this works. He finally agreed I could try it, but with a big attitude! Also proclaiming it would never work. Well in Oct I had a scan and was stable so we continued. In Dec he quit. In April was when the scan told me how great it was doing. He never got to know! Now I'm on E & E, another hormonal and its working too. Pablociclib was my 6th line of treatment. I look back now since I'm doing so good on hormonal and wish I had tamoxifen after my primary. At the 7 year Mark I asked him why I didn't have it and he said bc you weren't ER positive. Then he looked it up and said OH, yes you were. Then he said it was bc he decided it wasn't protocal for my age and no lymph nodes. My surgeon was furious when I told her all this when I had my port placed. She said I should have had tamoxifen and I probably wouldn't have mets. She said but no sense crying over spilt milk! So please fight for whatever you think you need. I thought he was doing whatever I needed. Obviously he wasn't!!
I agree with what FF has said. I am also HER2 negative and have been living with mets for over 10 years now. After one of my liver biopsies it was decided I was HER2+ but in hindsight we all realised that it was so marginal I wasn't benefitting from any treatment that was specific for HER+. I have however always benefitted from hormone treatments (as well as chemo when I've had to have it) There's alot to take in when you are first diagnosed with secondaries, far more than with primaries as other treatments are more appropriate and of course it is long term rather than a set amount of cycles. I only understood what HER2 meant when I was investigating it for myself. From what I understand we all have HER2 receptors on our BC cells. However it is only when these are over-expressed (ie there's too many of them) that you are treated with a Herceptin related drug. In the same way if you do not have a high level of ER or PR receptors you are unlikely to benefit from hormone blocking treatments. In my case my test results came back as possibly HER2+ so they conducted another set of tests at gene level and this still came back as marginally over the cut off point between what is HER2- and what is HER2+. I hope this explains it a bit and may make you realise that you don't need to be HER2+ to get excellent treatment. Being HER2+ means you have another set of receptors that need blocking. In fact the press always seem to pick up on Herceptin/HER2+ as alot of research has been done to level the playing field between HER2- and HER2+ however there has been more recent drugs that are now being used to boost the effectiveness of hormone treatment. I, along with other long term secondary BC survivors, can't actually have these newer drugs (in the UK/on the NHS) as they are only for the first line of treatment (ie the first hormone treatment you have after your mets are diagnosed) so we haven't benefitted from the enhanced performance they give.
As to how you are feeling emotionally as I said earlier there's alot to take in and suddenly being plunged into the menopause doesnt help! I had zoladex injections for 2 years after my primary diagnosis and I do know its not much fun! For ovaries to be shut down almost immediately is difficult especially with all the other emotions going through your head.
Feel the Fear, I was on letrozole/palbociclib for 21 months. My first scan at 3 months was stable. The second scan at the 6 month mark showed lots of improvement. Letrozole killed my knees with pain. Palbociclib made my leg muscles weak. I had some friends this happened to, too. I would suggest doing some leg strengthening exercises. My legs have gained some strength back, but not all. This combo worked 21 months for me. FF
Feel the Fear, I was told ER+, PR+ and HER 2- is the least aggressive. Then ER+, PR -, HER2-.
I was told I was ER+, PR- and HER2-. Then my new oncologist wrote on a letter I needed that I was PR+. I questioned her about it and she said that there was no difference in treatment and that being PR+ would actually be better. Lol still never gave me an answer on it.
I have had mets for almost 13 years and I am HER 2 negative!!!
fingers crossed for the ibrance, seems to be getting really good resultsxx Sorry I have no real knowledge of herceptin, but Ibrance hopefully will work well for you.
Hi Feelthefear, how awful for you. I really sympathise with your situation. My secondaries are in both lungs, and I am on Letrozole and Palbociclib, and have been for over a year. The good news is that I have responded well to this regime and my tumours have shrunk. So..yay me, and hopefully....yay you! I have a friend who had a 7 cms liver met, and on this same regime it is now reduced and she is on the surgery list. I hope that these two examples give you a bit of a lift.
My wonderful Onco does not place undue importance on receptors , but looks at other indicators as well. His reasoning is that it gives rise to anxiety, and so long as other blood markers are good ( neuts, white blood, bone marrow) and I feel 'well in myself' we just mosey on. At the moment I am very happy with this and my motto is to never ask a question I don't want the answer to! But blinkered, perhaps, but it is a coping strategy that has worked well for me so far.
Wishing you every bit of good luck. 🍀🍀🍀. X
I'm a newbie to the forum but 3+ years in with bone mets.
My oncologist has said he'll only give me a CTscan torso once a year & I'm emotionally troubled by this; especially knowing that many of us are asymptomatic when new mets are found....sorry to go on.....bee in bonnet!! x
Hi ladies, I haven't been on for a while. I switched off notifications as can't keep up with all the messages taking over my life!!!
A little good news story for you, especially those struggling. I was diagnosed with bone mets Christmas 2017 and have been on Palbociclib / Letrazole plus Zometa and Zoladex since January.
Had my first 3 month MRI scan end of March which showed reduction in all three tumours (vertebra, sacrum and pubic bone) and the larger vetebra one has started to re-build itself.
Well, just had the results from my 6 month MRI which shows stable although there is some activity, but no growth and no new tumours.
It is really reassuring to have these regular scans as it makes the stress of living with the diagnosis and hardship of the side effects so worthwhile. x
Sorry you have to find yourself in the place no one wants to be but you have come to the right place for advice and support. We have all experienced that absolute shock you get when you are told you have secondary BC (or mets as we tend to call it) so we all understand how you are feeling right now. The main advice would be don’t Google anything! Statistics will be out of date and there’s a lot of info out there that is also out of date. I have had bone mets for over 10 years now and I don’t think any statistic has been changed in that time despite new treatments being used.
Bone mets are usually treated with a bone strengthener which can be an injection (Denosumab) or intravenous (IV) such as zometa and occasionallytablet form. You will then also have another treatment based on what type of BC your primary was and this will generally be systemic ie it will treat any areas of BC in your body which is why the operation to remove your lymph nodes is not taking place right now. This could be hormone treatment or chemo or Herceptin depending on what your primary was.
Good luck with your appointment tomorrow and feel free to ask any questions you might have on here, there will always be someone who can help. Also, once you do get a treatment plan in place you will hopefully feel more able to cope as it does make you feel something is being done whereas when you are left in limbo not knowing it preys on your mind.
Silver, Your forever home sounds fantastic. I love my hubby but some days I wish we could have three homes. Mine nice and tidy. His could be a typical messy man cave which I will stay out of! Then a house we share. I've often wished on our property that we could have our main house and then a little place for each of us. I better play the lottery. We needed rain too, but 10 days in a row is a lot. The trees and plants look happy again, after the rain. FF
Zana..was sorry to hear your news..what a shock!
my primary was diag in 2001 and I had 12/13 lymph nodes involved, which they removed. I then got an infection around my breast implant and ended up with lymphoedema.....I’m thinking that maybe in your case they think it’s less traumatic to treat wholeistically..I have noticed practice has changed during the years since my intitial treatment...
when you see see them again you could ask them to explain whyxx
my bc mets were found in 2013 to liver and bones...I have it in my spine, pelvis and ribs...but have Zometa, which they tell me is keeping the bones stable.
love and best wishes
I'm literally turning green with envy!!! I'm losing plants and tis' breaking my heart. My garden is my pride and joy!
'They' keep dangling the proverbial carrot in saying its going to rain 'today' and not one drop of the wet stuff!!! I really miss the rain....for emotional reasons, too.....can't believe this heat wave!!! Bizarre!!!
wishing u a relaxing Sunday..xx
hello dear funny face,
My 'forever' garden is in my 'forever' home.....its my turn of phrase......after my divorce, I went a-searching for a tiny bit of England to call my forever home.........its mine till the end of my time.....just a turn of phrase....
Did i hear the word 'rain'......nae one drop here...its upsetting me!!...boo hoo ...hugs...oo
Ok I have to ask. What is a forever garden? I'm guessing a perennial garden. Lol if it is mine is basically dead. It did well for many years and last year wasn't doing well. This year up popped a ton of gristle in it.I had to pull them out with leather gloves. Two were is later they were back. Same process and now they are back again. Decided to just chop it all off. This is right against the front of my house. I figure next year I will have to rip it all out. Might turn into two bushes and some potted plants.
Raining here for the next 10 days. I was supposed to go to the beach this week. Quite bummed my only time this year at the beach and its going to rain for it. 2018 hasn't been cooperative for having fun!
Sorry to hear your recent news. 3 years plus ago, at Dx, they found mets in my lymph nodes so axilliary clearance and a week later mets on both hips.......hang on in there....hugs..
Thx for answering. I'd never heard of this particular type of mets. before. I guess 'it' showed up on a CT......thinking of you till you wait for the 8th. Waiting is just 'horrid'!!!
Hugs to you, too,
Hoping you have family & friends around you.....x
Hi Silv, well soft tissue cancer is when it's not in an organ but just loads floating around. mine is in my neck and chest. Don't know what they're going to try next but will find out on the 8th August.
hugs to you
Forgot to say I Had the original lump removed less than 3 months ago and was due to go back in and get a full lymph node removal, but they have now said I don’t need it after finding the bone met? Don’t know what treatment I’m going onto as yet, will find that out on Tuesday when I meant the specialist team.
Hi I don’t know if I’m posting this in the right place, but I have just been told yesterday that I have bone mets in my spine and that I can’t be cured that they can only treat me and buy me as much time as possible. I’m assuming there are people on here that have been living with bone mets for years, would be good to know how long you guys have had this to give me some sort of hope moving forward,
thank you x
Sarah, How are you feeling? How's treatment going? I'm happy you found some comfort in our stories. We never know how this will play out, but we all need some hope! Believe me I searched and searched for positive stories when I was diagnosed. Hugs, FF
Ditto....I empathise completely in that my 'forever' garden is a very young one, too. Rain was promised today and we have had about 2 minutes worth so far in! I'm genuinely missing the rain...never ever thought I'd say this; in this country!!! Its all rather 'odd'......
All good wishes,
Ramade, I'm sorry you didn't get better results! We all want it to get smaller! Most of my treatments would shrink mine a tiny bit. Mine was stable which = no changes for 5 years on vinorelbine. Are you staying on the treatment? FF
dear ff i am so pleased for you i can't tell you. fantastic news,well done,
i haven't posted for ages,trying to get through 6 months of hellish chemo,result no change. it seems they aren't too worried about bones these days which might be interesing to some. i have chemo in the soft tissue which they do seem worried about but can't find any info on it, anyone??
anyway once again so pleased for you.
;ove and hugs
Hello dear Nicky.
Many thx for your highly informative post...very much appreciated. Sometimes, I feel like I'm 'flying' in the dark! What is Fulvestrant? I'm on letrozole & Denosumab injections.
When I asked my oncologist to explain the pathological breakdown of my biopsies, he said that I did not need to worry about all that!!
I'm a divorcee & I live on my ownsome...thank goodness for my Mcmillan befriender. I did not find him till the initial blast of chemo. & radio. were over; more's the pity.
My body does not like the heat so I'm finding this heat wave very hard but I've gr8 fans!!
I love my forever garden to pieces and I'm now losing plants...Boo hoo!! (grumpy ol' woman...te, he, he.....)
With all good wishes ,
Thanks girls! Please know that I'm not naive about this. I don't think I could ever go back to thinking it is gone forever. As much as I would love to think that I could never have that trust. I just plan on enjoying it for the moment. Hugs, FF
Hi silver - glad to be of help and I'm happy to share as much as I do, I keep a few things back especially any real identifiers to who I am and my family - hence no photo - ever!
I'm currently on Fulvestrant and Denosumab, both injections (not IV) every 4 weeks. I'm strongly ER and PR positive, and, for now at least HER2-
I can't explain what happens to bone mets - you might need to read up on it as I'd get it wrong. But basically bone is a living part of us, it grows and it dies. Its this mechanism and status quo that cancer disrupts. The bone strengthening treatments are there to do just that - strengthen the bones, but they also stop the cancer from attacking the bones even more. So the damage is still there and therefore there can be weak points, which often cause pain, and therefore the areas affected will show up on CT scans, MRI scans and of course bone scans. My hosptial only uses bone scans for diagnosis so I have only had one back in 2008 when I had one hot spot and one spot on my upper spine. Because the bone mets went on the rampage in 2013 (when I wasnt getting regular scans) I now know they are all over or 'extensive' as my reports say. However they have all been stable since 2013. I know roughly where they are as places such as the ribs are tender to press, so I know they are there!
My CT scan is just the normal one, no extra passes, I believe all soft tissue and bone mets (and node enlargement) will be picked up over a certain size (MRI scans are more accurate and pick up smaller lesions as well) but I dont think they can pick up skin mets but as I dont have them I dont actually know. Our CT scanners at the hosptial I have treatment at are pretty new and hi tech whereas maybe some of the older ones in other hospitals are not so accurate hence the need for other scans?
As to the heat I'm enjoying it when I can but definitely prefer it to be cooler and breezier! A spot of rain (or a downpour) would be nice so I don';t have to keep watering my plants.
ps Even better news from you FF and thanks for sharing. I think my liver 'witch' has also left the room - for a while at least, no sign of her on the recent CT scan despite setting up home there 5 years ago. Obviously the surgical knife got her ha ha. As you have said it all seems a bit unreal when you have had certain mets for years and suddenly they are gone or lying dormant. However I'm well aware 'she' will be back from her holidays at some point! xx
Having a quick dip into the forum but had to post a fantastic WOW to FF!! I think you are an inspiration to many, I'm so happy for your good news, it lifts everyone when this happens! If you can do 13 years and be NED then there is hope for all of us!!
Silver, FFs idea of reporting symptoms so you get a scan....yup, I'd be doing that. As Nicky said, we only have one shot at life and owe it to ourselves to be proactive and well informed. I was too frightened in the early days to do this but it is empowering. I think we have a culture in UK of being so grateful for free treatment that we don't dare question anything! When I started reading the U.S. Inspire website I realised that their patients had much greater knowledge and control over their treatment.......rant over, enjoy the sunshine xx