I’ve been lurking on this brilliant site since last September when I was diagnosed
with lobular Bc, had mastectomy,28 out 28 nodes positive.
I have had 6 F.E.C,15 Rads and take Femara.
When i was receiving rads I developed a niggling lower backache,and was told by a doctor that I had probably pulled a muscle and to take Nurofen .
Anyway to cut a long story short I went for 3 monthly checkup with my onc
and he asked how my back was I said it still hurt.
He asked me to return the next day for a blood test chest x-ray and lower back x-ray.
Two days later I had bone and m.r.i scan (the hospital phoned and told me they could fit me in)
To say i was a tad worried is a bit of an understatement.
I now know that I have mets to my spine and despite taking pain killers Solpadol
I am still in pain.
Sorry for moaning any cyber hugs going spare?
Love to all
Pogsxxx.
So sorry to hear how you are feeling and i hope the pain eases for you.
Gallons of cyber hugs coming your way - and I’m sure many others on the site.
You’ve been lurking long enough so you know how much support you will get from everyone.
Hi Pogle, are you having bisphosphonates for your spine mets? I found after a few months of bisphosphonates my pains went away. So sorry to hear about your pain. When are you next seeing your onc? I’m no expert but I don’t think Solpadol will be very effective.
Welcome, I’m so sorry you have to be here but it’s a very supportive forum. xx
Like you I had lobular and the last mastectomy all the lymph nodes were positive. As Belinda says, the solpadol is not the best painkiller to be taking - you need prescription stuff to get that pain under control. I wondered if you have only just had bone mets confirmed - because if not then you really need to be asking your onc what he/she is doing about it. I found again like Belinda that after a few treatments of bisphosphonates i was more or less pain free and have stayed that way getting on for 5 years now. Stick around for lots of support Pogle - sending you plenty of those cyber hugs xxxxxxx
Nice to meet you. I am a lobular lady but my spine mets were found one week after diagnosis so I I have not had surgery yet. I had every counter top pain remedy prescribed for me over the last year until a CT scan showed up the tumours. You probably could do with the relief of Butrans patches which release morphine slowly into your body. It was only when I started them that I focussed away from my upper tumours and realised I had pains in my lower spine and hips. Yes you guessed…hot spots there too!!
The doctors rely on you being able to tell them where it hurts so you need to be able to focus on what your body is telling you. The local Macmillan nurse was instrumental in getting me on morphine patches and they do work.
I have been on bisphonates (Bondronat) for a few weeks now but as I am still recovering from recent irradiation I too am looking forward to the relief it might bring.
I have spine mets and find a drug called feminax used for period pains is very helpful it has codein in it and a muscle relaxant, I also take tramodal for days where it just wont go away. I also try and swim and sit on an exercise balls as much as possible when watching tv that will strengthen the muscle aorund the spine.
I also have patches but they are fentanyl? great stuff but also have oramorph and regular pain killers for breakthrough pain, the patches are great cos you don’t have to remember too much and if you get it right there is no breakthrough pain… once you get breakthrough you have to start all over again so I keep it well topped up!!
Hi, Pogle. A warm cyberhug and sending you sunshine!
I also have spine mets which have been treated by radiotherapy (ended May this year and was concurrent with treatment to 2 lymphnodes in chest and after RT of left hip). No pain before, thankfully and none needing painkillers since as this all showed up on a PET scan which I had, part of monitoring a recurrence first detected in my tumour markers last June. I’ve been living with cancer for 11 years now but this is the 1st time it has spread out of the regional box.
Very often these mets don’t show up on scans for upwards of a year. It takes a long time for cancer to develop to detectable size. My onc. reckons that I had the seeds of these mets in my bones 4 or 5 years ago before I was treated for regional recurrence and that they didn’t respond to the FEC that I had back then.
Hoping that your pain management team get their act together for you and that if you can take bisphosphonates your bones can go from strength to strength.
Maybe if your doc./physio says it’s safe to and if you enjoy it, you could try some gentle swimming on your back or ask to join a hydro-therapy class to strengthen the muscles which support your back. It’s really important to keep as supple and fit as you are able to. Enjoyable exercise releases our natural painkilling drugs and relaxes the nervous system and reduces stress.
I second the suggestion that you might need bisphosphonates, for instance I’m on pamidronate. If you’re not already having it Herceptin might help. I recently had a single zap of radiation on my rib lesion which has reduced the pain to almost nothing.
Hello everyone, sorry I haven’t replied before now, all your hugs were just what I needed, and a few tears were shed - how soppy am I?
I saw my oncologist today who told me that Femara was no longer working and that my markers had risen and so I have to have another course of chemotherapy and radiotherapy. It seems a lot like Groundhog day!
He also gave me a prescription for Ibandronic Acid (whatever THAT is). Has anyone else been in this situation? I’m a bit fed up but optimistic.
Hi Pogle,
I don’t have bone mets, but do have arthritis in both hips, feet and hands and have broken bones in both feet recently, just by standing up. My say it is because I was on steroids for Crohn’s for some 30 yrs, which thin the bones. My GP has prescribed Alendronic Acid and Calcichew/Vit.D and the pain has virtually gone. It is a bisposphotase drug and helps to strengthen bones. It is a pain to take though - you have to take it on rising in the morning, with a glass of water, and not lay down or eat/drink anything for a half hour. I do miss my first cup of tea in the morning.Ibandronic acid may be another bisphosphotase. He said you can get side effects, but I don’t seem to have any.
Good luck with the chemo and rx.
Liz.
Breast Cancer Care have written a factsheet about bisphosphonates which includes some information about Ibandronic acid, you may find it useful to read and you can do so via the following link:
So sorry to hear that Femara hasn’t worked for you, and that your onc is proposing radiotherapy and more chemo now - it’s very daunting to be told our treatments aren’t working, but it’s good that our oncs usually have a few alternatives up their sleeves. I hope my experience with Ibandronic Acid bisphosphonate (bone-strengthening) tablets might help you through this challenge.
Like many others who have responded, I take bisphosphonates to counteract and prevent further bone mets; I’ve been on ibandronic acid tablets (brand name Bondronat) for four years - had much bone pain and hypercalcemia (too much calcium in blood - tiredness & vile constipation!) at mets diagnosis before starting them, but these reduced almost completely after a couple of weeks taking this “miraculous” drug. As far as I can tell, I haven’t had any side effects from Bondronat, and it has helped heal some of my mets.
You need to remember a few rules when taking Bondronat, to ensure this drug is most effective for you:
1 Take them wth 200 ml of water (no other drink) after a six-hour fast; I have mine first thing in the morning before breakfast.
2 Sit or stand up for an hour after taking them, as they might cause some “acid reflux”-type side effects in your throat if you lie down.
3 No food or drink (except water) after taking your tablet for at least a half-hour, to give it the best chance of dissolving in your stomach and dispersing around your body without any competition from food. I usually leave it for an hour, to make sure it’s gone before my muesli arrives.
Yes, it’s a bit of a faff, but probably much easier (and cheaper for the NHS) than going to hospital for intra-venous bisphosphonates; a number of studies have concluded that this oral bisphosphonate is at least as effective as its IV version, but I know that many women with bone mets worry that an IV one might be better. We’re all different, and respond differently to our treatments - I hope Bondronat (and radio & chemo) works for you, and that you get relief from your bone pain very quickly.
Hi Pogle…ditto everything Marilyn said in her post and I too give the tablet an hour before I have any food or drink. It seems a little bit of a hassle at first but you very quickly get into a routine…I’ve been on these bisphosphonates a while…had infusions when first diagnosed. I prefer the tablets and I’ve had no side effects. Good Luck with your chemo…xx
I was diagnosed with spine mets 3 years ago (plus liver mets) and my spine actually fractured before they found out what it was - I’d been going back to my GP since the January complaining of back pain and it wasn’t until the September that they decided to do an MRI and it showed up then. I could hardly walk at that time but had a short series of radiotherapy and that really sorted the pain out plus being on painkillers.
I’ve been on tablet form and I.V. form of bisphosphonates. Because I had to go back on chemo for my liver and my veins are shot (!) from having chemo 12 years ago I’ve got a portacath fitted so it’s as easy to have I.V. treatment as my portacath needs flushing every month but I must admit that I haven’t noticed any difference in the I.V. to tablet form side effect wise. The only faff I found with the tablets was not being able to eat anything for an hour afterwards but it’s a small price to pay if it’s doing the job.
I still get tired and my back aches if I’ve done too much or stood for too long but it’s manageable now. The main thing is we’re all still here!!! The biggest problem I have is going somewhere I haven’t been before and the chairs are hardbacked so I tend to take a cushion with me now in a bag so it’s not that obvious!
Hi to everyone once again, and a big ‘thank you’ for all your good wishes and invaluable advice. I am now enjoying my morning pint of water together with my Bondronat tablet. I went for radiotherapy (just the one session) ten days ago but as I was in so much pain, my back went into spasms and they were unable to proceed(!).
My Oncologist said he couldn’t treat me while I was in so much pain, and gave me liquid morphine there and then. He told me to phone my GP to be fast-tracked for a Macmillan nurse, which (eventually) I did. They even arranged transport home for me, even though I live about eighteen miles away - a day I never want to experience again.
I went to the Chemo unit today and found out that I’m going to have Taxotere and as far as the nurse knew was for six sessions. This will be my second chemo treatment in less than twelve months and I’m so not looking forward to it. I start Thursday (two days time!). Once more unto the breach! Wish me luck, I’m going in!! Loads of love and hugs to you all (gentle ones of course).
Pogle
xxxxx
P.S: District nurse visiting tomorrow, and Macmillan Nurse on Wednesday. Life in the fast lane, eh?