He posted about 7 times and I have also reported them all. It is pain that they do this at the weekend it is almost as if they know there will be a delay in getting them removed. Grrrr
i have reported this persons message, plus his other two to the moderator, they are pretty good at removing posts like this promptly.
You can always report inappropriate content by clicking on the pink writing (to the left at the bottom of any post underneath the login name) that you think is wrong.
Please stop posting on this site - this is not the place for advertising nor for pushing bogus "cures" - have you no compassion for people who are struggling and do not need this rubbish?
Thank you everyone who has taken the time to reply. Mum and I have read through all your individual experiences over and over and have taken on board all the positive feedback. It has really helped ease her mind and make our decision.
She had her first IV of Bisphosphonates yesterday and starts her first CAPE cycle today. We know it's not going to be an easy journey and we are going to be closely following all the advice tips on the CAPE thread.
Just wanted to say we really appreciate all your feedback and wish all of you the best and strength to continue our fights.. Sending lots of positive energy xox
Forgot to say, I have had no side effects at all from bisphosphonates and have been having IV every month since Feb 2015....
Forgot to say, I have had no side effects at all from bisphosphonates and have been having IV every month since Feb 2015....
I feel for your Mum and the dilemma she is in.
I was diagnosed with bone mets in 2015 in my spine and rib. The pain was so breathtaking, I collapsed on the floor from the "weight" of carrying a mug of tea and was hospitalised. Subsequent radiotherapy, bisphosphonates and hormone therapy (and large amounts of steroids over the following days) helped to alleviate the pain until I was able to go back to work.
The nature of the beast is that it does creep back which it did last October and again this March - into my liver and further into my spine and pelvis. I am now on paclitaxel and 3 months in feel relatively pain-free and still going.....my most recent scan shows shrinkage of the lesions in the liver and the bone mets have stabilised (currently not spreading) so chemo has been worth it for me.
However, as others in the forum have rightly said, it is a personal choice whether to go ahead with treatment but my maxim in life has always been "give it a go" - even if it helps to alleviate some pain, it might help. The side effects for me have been minimal (hair loss and some tiredness) but being relatively pain-free has been great.
I wish you and your mum all the very best hope the pian reduces with whatever treatment she decides to follow.
Jo, sorry about mum.xx
The decision has to be hers, because she will have to manage the outcome of it.
We cannot influence her, it wouldn't be fair
If you go on the cape and bone mets threads you will find lots of ladies, some of whom may have been through the same situation that might help. Has she access to counselling services? I think they are very skilled at just this sort of choice.
Love and best wishes. I hope mum can find a way she wishes to proceed
Sorry to hear that your mum has had the diagnosis of secondary bc. I was diagnosed with secondary bc May 2016, with lesions in the liver, lung & bones (hips, spine & ribs). I started with radiotherapy to help with the pain in the hips, which seemed to work well. Was started on Capecitabine Sept 2016 on an 80% dose which worked well, reducing the tumour markers from over 4000 down to 150 over 6 months. Unfortunately they have started to creep up again (at 838 at last blood test). Was put on 100% dose for the last cycle which increased any side effects, for me it was indigestion, nausea & the big D! Other than that Cape has worked well for me, no hair loss, mouth ulcers etc. I don't regret going ahead with treatment, on the advice of the Onc. Some people in the other threads have been on cape for many years with very few side effects. It might be worth giving it a try & if you find it doesn't work then they will offer you other alternatives. I'm not going to give up on any treatment until I've tried everything! Hope you can get treatment that works for your mum & she has many more years. xx
Apologies for the delay in response to everyone. I really appreciate your feedback and all your responses to my question.
Since my previous post, mum's health and mobility has rapidly detoriated. She now struggles to walk, even with the aid of a walking frame and cannot stand on her feet for a very long time due to pain in her back. She feels incredibly stiff and stuggles to stand once sitting etc.
It's soul destroying for her being confined to a chair 24/7 after she was such an active, independant person.
Yesterday we had an appointment with her oncologist who has informed us from her latest CT Scans her spine is slowly collapsing from the cancer and there are new lesions appeared down her spine, in her pelvic bone and iliac wings. She has has informed us the only option now is chemo in form of Cape tablets and biphosphonates through IV. If mum does not want this she will sign her off and no longer see her. She gave her the prognosis of a few months if she does not go ahead with the chemo, so currently feel like our hands our tied and we have to go ahead with the CAPE tablets even though mum has never believed in chemo and resisted it for so long.
We're still unsure whether she is making the right choice and she is terrified chemo will zap any tiny bit of strength she has left. It's such an awful predicament to be in.
I was just wondering has anyone been in/know of someone in a similar situation to my mum in terms of loss of mobility but regained that through the use of CAPE?
I'm sorry for the long rambling post. Head is a mess at the moment..
ive been on monthly biphosphonates by iv drip ( Zometa) for about 30 months now with no side effects.
Another thing to add JoX, I haven't yet started on bone strengtheners but my GP put me on a long acting, slow release pain killer (called Longtec - an oxycodone). I take it every 12 hours and it's worked wonders on the pain which had been so bad it would make my teeth chatter through the night. The thing to do is not to let the pain get a hold. On occasions I take other painkillers, such as Paracetamol, for breakthrough pain but not very often now. I have friends who have the bone strengtheners and it has really helped them, so I'm pushing to try to get them myself but I started a clinical trial and they can't make up their minds if I can have it with the trial treatment or not.
Hello Jox, I typed out a long reply yesterday, then lost it! So sorry.
Sorry to hear about your Mum. It is an awful shock getting a secondary diagnosis, and it must be even worse having it piled onto the original shock with such a short delay inbetween. I had nearly 3 years between my primary and secondary diagnosis, and had thought I was "clear".
I had IV chemo in 2011, then, when I was diagnosed with SBC in July 2014, I was put on Cape straight away. Of the two types of Chemo, Cape is easier (although still not easy, as it is still chemo). You have done the right thing to ask advice, read all the posts, etc, in order to try to get a balanced view.
I see from your second post that your Mum is leaning towards Cape. The Cape thread has lots of good advice, and helps with the more common se's. There are a few more on the list that comes with the pills, but most of them are extremely rare. Please bear in mind that her Onc should listen to her requests, and it is perfectly normal to have small dose reductions if the se's are too much for her. Short breaks are also quite common. I have had both - a small dose reduction from 4000mg per day to 3600 mg per day after the first 7 or so cycles, due to very sore fingers. I have also had several short breaks, and one long one (during which I was on the hormone therapy, Exemestane, which unfortunately didn't work for me as I had some progression.). I am back on the Cape again now (after a nice break over Christmas), and my se's have lessened quite a lot.
Please keep posting and letting us know what your Mum finally decides on, and how she is getting on. We are a very friendly bunch, and will always try to answer any questions. If we are not sure, we will always advise getting proper medical advice from the professionals.
Hugs and best wishes. Barton.x
Hi Jo and I'm glad we have been able to help a bit with your decisions.
When you have the first dose of bone strengtheners I think everyone seems to get flu like symptoms but this is normally only with the first dose - goodness knows why as it hapoens with the IV, tablet or injection forms - all very diiferent ways to get bone strentheners. I would ask your Mum's oncologist why she is not having the newer injection, Denosumab? It is the latest in a long line of bone strengtheners and is the easiest to administer - about 1 minute. If your Mum has IV bisphosphonates she will need to be in hospital with a cannula fitted which in itself is a bit of a hassle if she is not going there for IV chemo at the same time. One less visit to hospital is always a plus in my mind! If she does however have IV chemo they can give the bisphosphonates during the same session although it does still increase the time in hospital.
BTW I have had all forms of bone strengtheners which is what I've based my answer on. As far as I'm concerned Denosumab has given me the least side effects as well, in fact I dont notice any although some ladies do get some aches afterwards.
Sorry to hear about your Mum. I was diagnosed in .Jan 2015 with SBC with mets to liver, left lung, and most joints and ling bones and various in spine. I am on biophisphates called Zoledronic acid by IV every 3 weeks and it really helped to stop the bone pain. I still do get pain but not as bad. It wold pay to have a dental check before starting with the biophisphates, because it can impede dental treatment.
best wishes x
Thank you all so much for replying. My mum and I really appreciate your responses and hearing how you are all managing and having positive experiences is definately a huge help in making the decision.
It was such a shock for us when we heard the tumours on the spine had grown so quickly in the short space of a month and the amount of pain she has been experiencing from the bone mets, I believe this is what has made mum now consider chemo, even though she always said she would never go through chemotherapy treatment as she had lived through it with her own dad and a seen a few friends go through it over the years and never with a positive outcome, so she always said she would never do it.
But the cape tablets sound a lot kinder from what we've been researching (the cape thread is really helpful on here) so I think she is leaning towards giving them a go.
It's such a hard decsion to make but especially hearing your experience Nicky, being diagnosed 9 years ago it's a great positive inspiration for mum to focus on.
Mum has also been recommended to start a monthly dose of bisphosphonates to be taken by IV. She has asked me to ask, How has this affected any of you? Any negative side effects?
Thank you for taking the time to read this. I know we are all going through such a worrying time but having the responses from others expericing similar is very comforting.
Hi Jo - sorry you and your mum have had such a shock with the diagnosis and palliative treatment. As others have said, it's possible to have a good quality of life on chemo. I've had various types over the last 2 1/2 years, one of which kept me stable for 7 months with no side effects. I even got back to fell walking with that one. I definitely think it's worth your mum trying something. It's hard to read about all the potential side effects but it's just a case of wait and see which might affect her. I couldn't tolerate Capcitabine because my body lacked the necessary enzyme to metabolise it, but I know other people who have been taking it for a number of years and living a good life. People like Nicky and Dawn are inspirational when it comes to the bone mets. I've just been diagnosed with them recently, unfortunately other places too, but I know a number of people with bone mets who are getting along nicely with the bone strengtheners.
I hope that hearing about other people's positive experiences will help you to feel less anxious and look forward to an improved quality of life for your mum.
Hi Jo, I agree with all that Nicky has said. I think until,you try a chemo you don't know which of the side effects will affect you and to what extent so some are worse for some and not for others. You mum can try a chemo and come off it again if she finds it intolerable. Quality of Life is vital and chemo can be unpleasant but many of us with secondaries have it constantly with some breaks - the best thing would be to discuss these concerns with her oncologist as they are generally trying to help us balance a decent quality of life with stabilising the disease.
Big cyber squeezes to you and your mum
Hi Jo and sorry you have to ask these questions as your Mum has now been diagnosed with SBC.
I was diagnosed over 9 years ago with spread to my spine and I thought the world was going to end right there. As you can see I'm still going. I am not in any pain from my bone mets and have never been over those 9 years, I lead a full and active life although do understand that this disease is very life limiting in terms of years lived. It hasn't stopped me travelling either into Europe, UK or further afield.
Obviously it will depend on how your Mum feels in herself and whether she is in pain however radiotherapy should help that, as can closely prescribed pain killers. Adding in bone strengthening treatments almost always gives relief as well. Chemo can certainly help with her bone mets and in my experience Capecitabine is a very doable treatment, no hair loss and none of the 'normal' side effects you expect from chemo. Pacitaxel is also quite doable although I haven't had it myself and it is given to some primary BC ladies so it is no different to them having it as opposed to a secondary BC lady having it. Palliative is the term used for any treatment that cannot cure your cancer, particularly SBC, however there is no known cure for primary BC either, it's just a case of getting rid of the cancer in your body at that time and hoping it doesn't come back. It is a shock when palliative is used to describe your treatment but in many cases it is identical to those used for primary BC, we don't suffer any more or any less despite having secondaries and it can almost turn back the clock to some extent when your mets shrink or in the case of bone mets they harden and strengthen. In my case when I have had chemo I feel I have gained extra years as my mets have been knocked back considerably to a better state than when picked up on a scan.
As I have said it will be up to your Mum to make a decision that is right for her but there is no reason to assume she will not live many years with bone mets once they are under control.
Hopefully other ladies will also be along to help answer your question but it is often quiet over the weekend on the forum so you may have to wait a day or so.
I'm writing this on behalf of my mum - she was diagnosed with breast cancer in March 2015. She had surgeries removing the lump and the lymph nodes and went through a course of radiotherapy.
She has since been diagnosed with secondary breast cancer in the spine and sternum, after experiencing a lot of pain and an MRI scan has confirmed our worse fears, the cancer is back and now it's terminal. She has already undertaken three doses of radiotherapy on different points of her spine where the tumours are touching the spinal cord and they are worried about spinal cord compression.
She has been offered two types of Chemotherapy - Paclitaxel or Capecitabine.
This is a difficullt decision now as we do not know if the benefits of the chemotherapy outweigh all the neagtive side effects you experience from taking it. If it doesn't improve your quality of life is it better just to get on with fighting the pain from cancer and not having to deal with side effects from chemotherapy as well - nausea, sore feet/hands, mouth ulcers, infections, hair loss.. the list goes on.. ??
This is probably an impossible question to ask but has anyone been in a similar position and regretted the decision they made either way?
Thanks for your time.