I’ve just joined this forum. Well, actually I joined awhile back but have only viewed messages so far. I’m very impressed with the knowledge you’ve all acquired, and I realise how little I know about my own condition.
I was diagnosed with breast cancer just over two years ago, and was told at the time that it had spread (started to type metasta-thingy but couldn’t spell it!) to my bones, mainly the spine and ribs. From the outset I hope I’ve been positive and upbeat. I realised I was now in the hands of the experts and there was nothing I could do except do what they told me. Treatment started immediately with chemo (Epirubecin I think), then mastectomy, then radiotherapy (8 lots), one zapping on left hip, further chemo this year (Taxotare - should have been 6 but it was abandoned after 5 because of side-effects), rod inserted in left humerus to strengthen it, followed by one zapping of radiotherapy the length of the bone, front and back. I’m taking Exemestane (Aromasin) as Arimadex stopped working for me, and Bondranat.
That’s where I’m up to now. I attend the Christie Hospital in Withington and am delighted with my treatment there, and the staff are wonderful. I look forward to getting to know you, and now that I’ve taken the first step on this site, I’ll start replying on other threads. Sorry if I’ve posted this in the wrong place but I couldn’t seem to find a suitable category at which to introduce myself.
Hello…I’m sorry you have to join us but this is a very supportive place.
Good Luck with your treatment, I’ve recently changed to Aromasin and I too take Bondronat.
I was diagnosed in 2003, bc and bone mets together when my hip spontaneously fractured. Had a hip replacement and I’m doing ok, feel much better than I did in 2003. Take Care…xx
Like you I attend Christies and bone mets were diagnosed soon after my breast cancer diagnosis.
I had radiotherapy immediately because there was a chance of spinal compression and this made me so ill that I did not receive chemotherapy or surgery. I am on Arimidex and Bondonat and responding well though.
I was at Christies yesterday for a checkup and I took the opportunity to complain of pain in my groin. This started just before Christmas as I was simply walking up the stairs. My Onc prescribed an x ray and it showed a hairline fracture in my pelvis!! I am going to have radiotherapy there in case it is hiding a tumour.
All that from just walking upstairs! Guess I will have to give up the bungee jumping!!!
Hi Granny Scouse & Ruftikins – I’ve been to Christie’s today for my regular nine-week blood tests, chat with the onc team and chemo-tablet collection. My care comes from Dr. Welch’s team – who do you see at Christie’s?
Yes, I’m under Dr Welch as well. They’re a great team. I’m due to see him at the end of this month but I think I’ll have to phone for an earlier appointment. He wanted to see me after 3 months but things have gone a bit pear-shaped the last week or so. I’m very pale, very weak and very weepy, not like me at all. Hubby thinks my white blood cells are low. As I don’t know anything about bloods, I wouldn’t know, but I don’t feel very well at all at present. Dr Welch said I may be put on oral chemo next time.
Hi Granny,
Just wanted to say hi and welcome to the secondaries sistas! I was diagnosed with primary and secondary bc (liver) in March last year. Finished mammoth course of chemo in Nov and now on herceptin and tamoxifen.
Anyway, look forward to your posts. Sounds like you’re in good company up there at Christies.
Jacquie x
Like Jacquie - just want to say hi to you and welcome to this site. I was diagnosed with secondaries to the spine and liver in 2004 and have been on tablet chemo since last September.
I’m a Liverpudlian but exiled in Cambridgeshire!
It must be hard having a primary and secondary diagnosed at the same time - bad enough when it comes back after 10 years but to have that double whammy…
Hope things go okay for you and look forward to seeing more of your posts.
So sorry to hear you’re not feeling so good right now, and I would definitely recommend that you get an earlier appointment with Dr Welch’s team at Christie’s. I find Judy Heron, the team’s “top nurse”, very supportive – you might like to ring her at the hospital for a chat, to see if she would pull your appointment forward – and Susan (Dr Welch’s secretary) is also a good contact. Or how about getting in touch with your local hospice? The palliative care doctors & nurses in mine in Bolton are great for info, practical and emotional support, co-ordinating and providing care, offering complementary therapies to reduce anxieties, etc – my GP is fab, but most of the time, he doesn’t have that specialist secondary breast cancer knowledge that we need.
The oral chemo is likely to be capecitabine – brand name Xeloda – which I’ve been taking for over four years. It’s a lot easier for most of us – no problems with hair loss, no needles – but our oncologists like to start us on industrial-strength doses, so get in a good supply of hand & foot creams, as this chemo affects our fingers/palms & toes/soles.
I see Dr Magee at Christies and I am very pleased with the treatment I receive. His clinics are on a Wednesday although I had my simulation and radiotherapy last Monday. I feel very lucky as I only live 3 miles away from Christies .I know many patients have to travel an awful lot further than that.
After my radiotherapy I am feeling quite nauseous and very tired and the zap zone is very itchy but I suppose thats a small price to pay. I am using Simple products at the moment to deal with the itching but the Metclopramide I take for the nausea isn’t working. Any hints anyone?
Its nice to know that both GrannyScouse and Marif and myself are Christie patrons. If we can find any more we could start a private members club going like some of our Southern cousins!
Hi grannyScouse et al… I go to Christies 2 yrs now---- going tomorrow for my trial drug omnitarg & herceptin on the Thomas Crowther suite [my consultant is Dr Wardley]I will be there 10- 2pm approx every three weeks bit like a support group as mostly the same women in those 6 leather chairs all with BC secondaries! Nurses are fantastic and its so much more relaxing than the hustle & bustle of the chemo Unit Jan x
Hi
Just wanted to say that I was diagnosed with secondaries at original diagnosis and was told that I had only 3 months if my chemo didn’t work. That was march 2007 and I am still here. I had FEC last summer and I am now on Arimidex and Zoladex injections. I don’t seem to hear of many in the same situation. Also does anyone else have there treatment at the Berkshire Cancer Centre in Reading?
Hi Caroline, I too was diagnosed with secondaries and breast cancer together, in 2003. Instead of Zoladex I’m on Prostap but it works in the same way. I had a great response from Arimidex which worked for nearly 3 years. I’m now on Aromasin and feeling well.
Belinda.
I was diagnosed with bone mets three weeks after diagnosis in September 2005. Had chemo and radiotherapy but no surgery. I also take arimidex, have zometa monthly and zolodex every three months. Most of the time feel very good but occasionally have bad days when I feel a bit down. Onc very pleased with me. Got check up next Friday so keeping fingers crossed everything still inactive.
Many thanks for your input. I wish you all the very best of luck and may the force be with you (can’t believe I just said that!!!)
I phoned Christies and spoke with Julie in Appointments and she’s got me in for Tuesday, AND I IMMEDIATELY FELT BETTER!!! I’ve had loads of energy, cooked a meal for me, hubby and friend last night, drove hubby for gastrostopy today - but he prepared evening meal for us as I wasn’t up to it. He thinks a lot of it’s in the mind - and I’m beginning to think he’s right.