Dear Carolyn, what a shock to read your latest post, my heart goes out to you. I had thought you had been a bit quiet on the forum over the past few weeks but put it down to being busy elsewhere, in the real world. As the other ladies have said you have been such a wonderful friend on here to so many of us, we will miss your ‘as useful as a chocolate teapot’ expression. You have always brought a cheery start to the day (we log on and read at a similar time) which we will all miss. If you feel it is right please do come back on here, even if it’s only to read the messages of support. You will know that we, your friends, are holding you close. Now make sure you get on and spend that time with your family as they are the most important people for you.
I put my thinking cap on.....I've inflammatory arthritis so I'm also under a Consultant rheumatologist. There are 2 ways to attack pain of this sort....anti-inflammatories like Etiricoxib/ neuropathic drugs like Gabapentin...We should not have to suffer pain. I'm in flare at the mo' so u have my heartfelt sympathy....please seek professional advice...& take care..x
I'm sorry you are in so much pain. Having had severe back pain quite unconnected with cancer, I know how awful it can be. The fact that you recently had a bone scan and a ct scan should be reassuring, I have never had a lot of pain from the mets in my pelvis but I did have acute pain a while back because of too much strenuous gardening. I got some painkillers from my GP - that might be a good thing to do - and had arranged to see the onc but it began to improve before I got there so I never went. There's no harm in getting some painkillers and speaking to your bcn. She should be able to advise you what's best to do. It's lucky you have an onc appointment soon so will be able to talk to him/her.
Hope the pain eases.
I have been lucky enough to meet Carolyn once or twice and she's just the same face to face as she is in her posts. I am sad that i won't be reading them any more.
We will all miss you and your support and will carry on holding you in our hearts and remembering how you brightened up our days.
Oh Carolyn, my heart goes out to you. Wishing you all the best - it doesn't matter how long we get - we always need more time.
I hope the dreaded C is gentle with you.
All my love to you and your family
Carolyn.........we’ll miss you. But we are all still holding hands so maybe you will be dropping by to keep an eye on everyone!
Always thinking of you, Carolyn. You’ve given me a lot of laughs! But now it’s time to concentrate on Carolyn for a while.
Carolyn, We are here if you need us! Thanks for always finding a way to make us laugh! You always put a smile on my face! Your advice and humor will be missed. FF
I am very sorry to read your post Carolyn. I know you have been supportive to, and appreciated by, many ladies on here and believe from reading your posts that you will have that support from your family and friends. I wish you, and your loved ones, well. Kate x
I can give you his answer to that one now...his opinion will definitely be no, but to check with your Oncologist. I think because the Onc is sort of in overall charge of us they kind of have to say that! That said my Onc says what did Max Fax say!!
..just to add, I will ask again even though in the past has said longer x
Actually I do have one question. Is 8 weeks off Denosumab either side of extraction sufficient? Many thx for your kindness....
Hi Silver, my dentist wouldn’t do the work on mine so I was referred to the dental surgeons, I was referring to when I had the first signs of infection when I said my dentist was useless, the dental surgeon was excellent. I have my Max Fax check up next week, and if it’s still the same surgeon he is lovely so if there’s anything you’d like me to ask him let me know and I will run it past him...he can only say no! Kate x
When I was Dxed I had mets in L&R pelvis but I was asymptomatic.....guess that's not really helpful.....x
I just could not read & leave. Although I do not know you, I am sad to read your news, Take good care....xx
Hi mermaid, and welcome.
Sounds like you have done incredibly well on the hormone treatments and so far avoiding chemo. In my experience (10+ years with bone mets) I have found 5 years seems to be about the maximum you might get out of one type of hormone treatment and quite often they all become less effective when they are 2nd, 3rd or further line treatments. You don’t mention anastrozole, I’m assuming you’ve not had it and although it is similar to letrozole I have managed to get a good few years out of both of these treatments, initially anastrozole for nearly 5 years and then a few years later about 18 months from letrozole. A lot of us hormone positive ladies seem to have a couple of hormone treatments then have to go onto chemo to knock everything back a bit if progression is shown on scans, although this isn’t the case with everyone especially if you ‘only’ have bone mets. It may be worth asking about anastrozole? Btw because you have already had exemestane on its own you wouldn’t be eligible to get evermolimus on the NHS, The NICE guidelines include it only if you have not had exemestane. Also if exemestane has stopped being effective I don’t hink your oncologist would expect it to work for any longer if you were able to add evermolimus into the mix ie if you funded it yourself. It is worth getting your oncologist to ask about getting funding for faslodex, I’m currently on it and luckily my hospital trust had already agreed to fund it themselves before I had to ask about it. Possibly you could ask if you can fund it yourself and find out the costs, obviously this would depend on whether you could afford it or not but as it’s a long established treatment the costs aren’t as high as some of the newer drugs. As to having chemo there are options that aren’t as harsh as you might think. Capecitabine is tablet form and is very effective, and Eribulin seems to be very effective for hormone positive BC although I seem to remember that you may not be able to have either if you haven’t had any form of chemo before, but the ‘rules’ may have changed.
Sorry I’m not much help but just wanted to mention anastrozole in particular.
Mermaid, How about a combo of exemestane and evermolimus. You might need to move up to double agent rather than a single. I'm from the States and don't know much about your medical system, so can't help you there. I would suggest looking for the thread about palbociclib and ask those ladies how and where they got it? Also, you might want to ask your oncologist if you need chemo to knock it back! Every oncologist seems to have their own plan of action. Good luck! FF
Oh no!!! not hot flushes..u poor thing....I left 'all' that behind me a ways back.
TBQH, I loathe the heat & my inflammatory arthritis is in flare so losing my innate sense of bonhomie.....literally praying for rain...for me & my forever garden....
cool huggs for u,
That really was a piece of very bad luck....
My dentist refuses to do the extraction...I'm being referred to a dental hospital....but to be very honest, I'm very EEEK about the whole shebang....thx for being there...xx
Ladies I need your advice...
brief history.... breast cancer 1999 chemo radio tamoxifen 5 years letrozole 5 years.
Dec 2014 extensive bone mets had Radiotherapy and been on exemestane sine then with monthly Denosumab. I scored 8 on estrogen level. Recent MRI has show new lesions the only thing my oncologist can offer is chemo!!! I asked about Faslodex she said it’s not funded by the hospital ( Dudley) or ( Wolverhampton) she will ask for funding but isn’t hopeful. Ibrance also not funded which I think is the case for many. She will look for any trials that might be suitable.
I asked if I should revisit Letrozole but she said if Exemestane has stopped working, and it’s the same category as Letrozole but stronger, then Letrozole unlikely to work.
She is at the mercy of funding I know but can the ladies on here give me anything from experience.... is there anything else? Would you think Faslodex should be my next ammunition? Would you have expected Exemestane to have worked for longer? I really wanted chemo to be the last resort.
Thanks for listening and you are all awesome, sorry I have rambled on a bit.
Ooopsie.....I do actually realise that there is a time & place for stats. Those European figs. enlightened me....& we are all very special individuals on our own individual journeys.....Positivity abounds....xx...take good care..
Not sure what happened there!
Just to add, the other thing which was unusual in my case was I’d only had 5 Denosumab injections when I stopped them prior to having the work done, my dentist etc all said as I’d been on treatment for such a short time what happened to me was even more strange, and this fit with my research, maybe I was just unlucky!! Kxx
You’re welcome, anytime, please let me know how you get on xx
I cannot thank you enough. I'm going to look closely into this......many thx for your time and kind consideration.....
I cannot thank you enough. I'm going to look closely into this......many thx for your time and kind consideration.....
I can only speak from my personal experience Silver and I’m sure the oncology nurses have seen more people having dental work done, but I personally would not have any done on that time frame. I missed three monthly injections prior and four afterwards. As I said initially mine appeared to have fully healed but the Max Fax team said it’s where you can’t see that problems tend to arise, and again he was right in my case. He said it can take six months for things to fully settle down, yet in all my research, and I did a lot, I never once read that length of time. That said, my dentist, the dental surgeon and my Oncologist all said my case baffled them as to why I’d had problems after it had healed so well as usually it was only when the jaw didn’t heal afterwards, only Mr Max Fax said differently. If I need more dental work I will go and see a biological dentist before I get anything done, I would’ve done this last time but because I had a holiday to California booked I wanted to get the dental work completed and all healed before my flight, and at that point it was, it was much later that problems arose. In fact on that holiday I fell over a raised paving flag, went face down so automatically put my hands out to break my fall, I dislocated a finger (my bag handle got caught around it as my knee fell onto the bag itself and that pulled my finger out) but didn’t break anything or injure my mouth. I was taken to Cedar Sinai who commented in the report that from the state of me after falling, and with my medical history, they were surprised I hadn’t broken anything and I hadn’t had a Denosumab injection for five months at that stage. That hospital belongs, I believe, to a non profit making group yet it was around £11,000 for the manipulation, a few X-rays and a pain killer...the prescription was extra!! Thank goodness I had health insurance and because it wasn’t due to cancer in any way the company have said they will insure me again, phew!
If it was me I’d do lots of research and definitely get another opinion and at least speak to a biological dentist. Kxx
I've been on monthly Denosumab injections for 2 years & 7 months.
The onco. nurse today said 8 weeks prior and after dental work...no Denosumab.
Is this not careful enough?
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...