Hi
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.
Jo x
Hello jo
welcome to the forum …a very friendly place for help and advice from real people.
I can’t answer your question but hopefully there will be ladies that can help.
It’s the weekend and sometimes things are a bit quiet here but in the meantime I will send hugs to your mum and hope she is comfortable.
Carolyn xx
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.
X
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
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.
X
Hi Jo,
ive been on monthly biphosphonates by iv drip ( Zometa) for about 30 months now with no side effects.
Moijan???
Hi Ladies
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…
x
Hi Jo.
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
Angela
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
Moijanxx
No post is a ramble so dont ever feel need to apoagise. Its such a horrible place to be in but ive rwcieved so much positive feeback about the Biphosphonates. Wee journey ahead and lots of decisions to make. Thinking of you x
Hi Jo
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.
Phaedra
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…
Phaedra
Phaedra…what a lovely name xx
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