Can I ask you how many doses of Denosumab you’ve had?
I ended up at the Maxillo Facial department after my dental work, if they hadn’t been so fantastic I dread to think! I had my work done at the dental hospital and all went well, healed quickly and both my dentist and the dental surgeon were happy, then I got an infection and things deteriorated from there. That said I mainly blame my dental practice for the resulting problems because my dentist was on holiday and the other one was useless, and that’s putting it mildly! The Max Fax surgeon said Oncologists and dentists generally don’t give a long enough recovery time before re starting Denosumab, he advised leaving it six months afterwards, if the gum is involved, both my dentist and dental surgeon said three, also read that on line and my Onc agreed, Mr Max Fax was adamant that wasn’t long enough and on reflection I agree with him. I ended up leaving it four anyway but still had problems. Obviously I didn’t see the Max Fax team until the problems had arisen but if I’d known then what I know now I would have asked for a referral, or at least what time frames they advise. I may sound ott about this but if you develop osteonecrosis of the jaw then you cannot have Denosumab full stop.
I would also advise taking probiotics and/or something like kefir, as I’m sure you’ll be given antibiotics to take especially if you’re having an extraction. Supermarket bought kefir may help but generally isn’t potent enough on it’s own!
Firstly you are just amazing!
My only life's link with the U.S. is that my favourite Uncle lived in Sacramento. Strangely enough he was a physician. I really miss our chats.....
P.S. the problem here is that there is simply no rain and its far too hot for me. Spring & autumn are my favourites....my rain dances aren't working...te,he,he
Hi Kate 21,
Uncanny.....I found out yesterday that I need a molar extracted so I've been finding out what I need to do wrt Denosumab.
So very many thx as I'm on the road to the dental hospital in August as my dentist does not want to do it himself.
I simply hate dentistry!!!
xx....how very timely....
I could not agree more...knowledge is empowering in this journey.
3+ years ago.....I was one of the10/15% found to be stage 4, on discovery. It was such a jolt...I'd no idea. So I had 6 months FEC and a month of daily radio. after a lumpectomy & axilliary clearance 2 weeks later. I just did as i was told.I'm now on Denosumab injections & Letrozole. I've mets on both hips......
I only recently found this forum & I'm learning a gr8 deal......will someone be coming with u on Thursday?
It was after my initial treatment that I was assigned a Macmillan befriender & he helps so very much.
Silver, I've been on my Mets journey for almost 13 years! It was in my lungs and some lymph nodes in my chest. My mets started 10 years after my primary.
I live in Pennsylvania about a hour west of Philadelphia. It is stinking hot plus we had 5to 8 inches of rain in a couple hours. We have had about another 4 since yesterday. Supposed to rain for days!!
just to say I had quite a detailed chat with my Onc about Denosumab last year when I had to stop it for 7-8 months due to some dental work (initially thought it would be 6 but ended up longer) and she was very confident it wouldn’t make any difference, and it didn’t. She explained it stays in the system for a very long time, hence why you have to stop before and after dental work (not basic fillings). I asked her why then did we have it monthly and she said if I wanted it less frequently she had no issue with that. I think sometimes it’s just to keep a plan or routine in place, which seems crazy I know but it appears that way at times. She also said Denosumab hadn’t been used in cancer treatment for that long, although it has been used longer for osteoporosis, so maybe new information is still coming to light about it’s half life etc. Kate x
Just a wee update, I seen the specialist doctor today and because I have only one bone met on my spine I have to have a pet scan to check it’s nowhere else, if this is the case he says I am a good candidate for clinical trials, I did mention in particular the immunotherapy trials, he said they haven’t tried it on bc yet but he will definitely talk to his colleagues about me. I came away today feeling a wee bit more positive today 😁
Many thx for sharing your journey. It must have been a shock to find the new 'lump'.
As with us all, the phrase scan-xiety is just the pits. Trying distraction techniques is what i do, but it does not always work! Thinking of u.....not long now...
dear funny face,
That must cause so much pressure at a time when you least need it......
How long have you been on your 'secondaries' journey?
I'd no idea that you were from across the pond......is it very hot there, too?
Moijan, Not all USA ladies get these drugs ! Yes some insurance companies pay. Others have a huge copay. I'm on Medicare which covers 80% of infusion drugs. You pay for Medicare and then you need a secondary insurance to cover the 20%. Prescriptions fall under your prescription plan which you pay for too. All of this coverage cost me $450 a month for me and $450 for hubby. For prescriptions there is a copay. To get palbociclibthe copay for my first month was $3500. Then $800 a month after that. I was able to obtain a grant to pay my copay. When my grant ran out I had to apply again. There was no money left for any grants for metastatic breast cancer. All the funds were used up. I had to apply to the manufacturer "Pfizer" for assistance.Luckily Pfizer agreed to sponsor me for one year. Sadly then the drugs quit working , I only used 5 months of my assistance. Then it was onto the combo I'm on now. This sent me back to finding a grant again. Luckily there was some funding open for metastatic breast cancer again. I was given a $8000 dollar grant for my compacts. I only have enough money until August or Sept. Then I have to reapply for another grant, if no funds available we will try the manufacturer. If they won't give it to me then I will have to switch drugs. I can't afford $700 dollar copay plus the copays on my other medications plus hubby 's copays and the insurance premiums. Very few people here get these drugs completely covered by insurance. FF
I already know that some of you have a very negative opinion on stats. but these are relevant to the current chat:-
I can't share the Guardian article but it states that the UK cancer survival rates trail 10 years behind European countries...x
I like to form a 'picture' in my mind. am I right in thinking that 'these' are your first secondaries after 9 years? Hoping you have love and support around u....xx
i have battled with Nice about these drugs....they told me that the trials showed no evidence that they worked with people who had had chemo before.that was because chemo treated ladies were excluded from the trials!)
actually there IS evidence now that they do (in. The USA).
Publicising the drugs initially, said that they were sooo pleased to be able to spare future bc sufferers from going through chemo...and giving extra years to these people, So they can see their kids, grandkids grownup.
I wrote and said that there are thousands of us ladies, who now felt disadvantaged...who’s drugs eventually. Run out and prospects were poorer. That’s when they wrote and said there is no evidence they work for Us!
You can read all about their decision making on the Nice website.
i am afraid it’s all down to money. The USA ladies get them as their insurance pays!
much love to you
Weird....I've just been reliably informed that my oncology's department protocol will be changing...Denosumab will be administered 1 x every 3 months! Not sure i rest easy with this cut back......Any thoughts...x???
Snap!....being very new to the forum. There is a wealth of knowledge here...best of luck with your bone scan...do let us know.....x
FtF, I really hope you don’t have to battle to get the right treatments although what you have had to deal with for your sone might help you. A good friend of mine, who has had bone mets for over 15 years, also has a disabled sone and has the bit between her teeth for her own treatment as well. All I’d say is make sure you educate yourself about what treatment is right for your type of BC and be prepared to challenge any decisions you don’t think are the right ones. Also be prepared to ask for a second opinion if you don’t agree with the decisions by your own oncologist, a major research hospital will have a wealth of experience that some more local hospitals don’t. All I have done is make sure I know what the next step will be and that has helped me take some form of control, which is what we all lose when we’re plunged into this nightmare. I was like FF with my primary, as most ladies are, you don’t seem to have the time to consider what might be right or wrong and you accept every word your oncologist tells you as you just want to get the cancer out of your body and move on. With secondaries it isn’t going to be gone, it’s with you and you will have more than one treatment over the years so I learnt to know what was coming next. In fact with my original secondaries diagnosis I probably got it wrong and shouldn’t have had chemo but stuck to hormonal treatments but the thought of the hormonal taking longer to work than chemo was enough to convince me I should go the chemo route. Great news it stabilised the bone mets and got rid of the local recurrence but absolutely bad news it gave me heart failure! This then compromised my treatment options 5 years later when liver mets were also diagnosed. Luckily I was able to get excellent help with the heart failure and get it back to full working order but at the time I thought I was a goner, stress and anxiety doesn’t even cover how I felt. As to why us long term survivors can’t have the new drugs through the NHS it is unfortunately down to cost. Obviously if you have private health cover, like is needed in the US, you can get them but their cost effectiveness isn’t proven yet so NICE won’t put them on the accepted list for all patients. However the new drugs are always given in addition to a hormonal drug (correct me anyone if I’m wrong) so it is difficult to prove how much they enhance the effect of the hormonal in patients who have had more treatments as the drug trials have so far only taken place on 1st line patients, but hopefully in future they will be introduced as a standard for all long term survivors. Even without the newer drugs I have had 5 years out of arimidex originally and about 18 months out of letrozole (which was by then my 4th line of treatment). With your pathology report it sounds like to are hormone positive but I’m not sure about the percentages that are quoted. Usually ER and PR are marked out of 8 so 7/8 is highly positive, maybe the percentages are working out something else as 7/8 in my mind would be between 75% and 88%? Tamoxifen does work in a different way to the AIs (aromatase innibitors). I don’t think tamoxifen worked for me after my primary, but I could be wrong, after all my recurrence wasn’t for 5 years but by then I had my periods back which I’m sure didn’t help.
Hope all this helps with information gathering 😊this is what I’ve done over the years, find out from here as it’s far more up to date with opinions from oncologists all around the country (as we are all around the country ) so instead of getting a second opinion I’ve often had 10 opinions when I’ve asked a question which is great. Long make we continue to share and help others.
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