Breast Cancer Now Forum

Hi Claire, I've had two separate sessions of radiotherapy in the last year, both to the spine. The first one took a few weeks to show improvement but the last one about 8 weeks ago gave me relief almost straight away. Depending on where the radiotherapy is going to be given, anti sickness tablets and a few days of steroids are given. These worked well for me. Best wishes Paula x ... View more

It must be difficult Val to have your help taken away. I hope your husband has a speedy recovery. I have been thinking about all the avoidance stuff that I do and it would probably be different for some people depending where the bone mets are. I never travel by bus anymore, they jerk and jolt you all over the place, had too many days of pain following a short bus journey. I also have suffered from sitting on all types of chairs apart from my desk chair, hospital appointments are a bit of a nightmare as you sometimes end up sitting on those hard plastic chairs for a couple of hours. I figured out that in my desk chair I lean forward to use my computer, taking the weight off the base of my spine. So now when I sit anywhere I lean forward slightly - the difference its made is pretty impressive. There are plenty aids, for gardening and suchlike on the mobility sites to avoid bending. Not that I do gardening but I know a lot of people do enjoy it. I am sure there are loads more avoidance techniques I do but the taking the weight of the base of my spine has helped me the most. Best wishes to all x ... View more

Interesting Val about watching what you do. I am pretty good with pain at the moment after a blast of radiotherapy. I have constant dull ache in L1 as the body of the vertebrae has disintegrated but I have found that I can keep that at an acceptable level by avoidance techniques. I do not bend to pick stuff up, I have one of those litter picker things (very helpful). I plan my driving trips so that I have a day to recover as that will set off pain. I used to forget a lot but have learned that bending to pick something up can lead to weeks of bone pain and trigger off nerve pain. I can't take Oramorph, the only time I did I had to have a DR come in to give me an injection to stop me vomiting. I tolerate Oxynorm though but only take that now when I need it. Paula x ... View more

Aww Dawn, it must be difficult juggling pain medications. Hope you settle soon. I do have a district nurse and a MacMillan nurse, they are helpful but usually it is just in for a chat every month or so. I am about to email my children's dad as he told me he was willing to come back when needed. How that is going to work out after nearly ten years apart I have no idea. My sister sister was my first choice but sadly is undergoing tests herself now. My Onc has told me to see the social workers at the Hospice where I see the Palliative care consultant but I don't want too. Thanks Mary x I know how hard it is to change Oncologists, I should have done but haven't. Only because the team have been good up until we had a lot errors. I think if I didn't get on with them or found them obstructive then I would make the move. It's fairly easy, my sister has just transferred from a breast surgeon to another one. It took a phone call to her GP and she was referred to the new surgeon. Good news Mary, that your tumour markers are going in the right direction. Hope you all have a restful nights sleep. Paula x ... View more

Nice to see you Val x Dawn I know you wasn't asking me but my tumour markers went up to 287, don't know what they were before as I had to errors to sort out and am not sure if they were measured. That is when they decided to put me on Capecitibane, Herceptin and Pamidronate. Unfortunately as I posted up ^ there the other day. I had a reaction was quite poorly. I'm off all medication for the moment. Had a review yesterday and had a fright as my Onc said that the next 6 months to a year are going to be very difficult and you need to make sure plans are in place for your children (single parent). I was visibly taken aback and asked her what had changed since two weeks ago, She then went on to say she thinks the cancer is either much more active then they thought or my immune system is very tired, she hadn't meant that I was on the way out but predicted it would be difficult with hospital visits and treatment taking it out of me. Reeling I was. Just about got my head around it today. I am going to have Herceptin next week again and start Megace hormone on Monday, as my third retest on hormone status has come back as ER positive 8/8 and HER +++. They tested the tissue from the highest node this time. Thankfully the radiotherapy has knocked out the pain in my spine for the most part. I am just feeling very fragile and tired. Review to see if I am strong enough for other treatments in a month. although they may stay away from the biso's. Paula x ... View more

I too have trouble wearing my boob and most of the time don't bother anymore. It's so heavy and presses on my chest wall. It is noticeable as I have one remaining large boob, get looked at sometimes but I have decided I am not that bothered. I do try to wear it but most of the time I find a quiet spot and pull it out and go without. I've have mislaid it several times. 😄 I have had a set back, just out of hospital. Had neutropenic sepis from my first cycle of Capecitabine - which surprised me as I thought that it was a kinder chemo. Then I was told that I was very close to heart failure as my first Pamidronate infusion knocked out my electrolytes, calcium and potassium. My BCN nurse said she had never heard of that happening before. I have had 7 days of IV antibiotics and potassium, calcium infusions. The couldn't find the infection that was causing me problems. I am home now, weak as a kitten but hopefully will get stronger soon. Still talking calcuim twice daily. My chemo has been put off for two weeks as my white count is still low and we are going to discuss maybe a lower dose or different schedule. I was fine when I was taking the chemo too, had all the side effects but in a mild way. I am hoping this was a one off reaction, from the sounds of things its not common. Best wishes Paula x ... View more

Finty, I am Pamidronate and was told to get all dental treatment done before starting it, so I guess it isn't just Zometa. I made a mistake in my post up there ^ about HER testing, should have said if initial diagnosis was before 2005 then ask for the tissue to be retested for HER status. I supposing that tissue slide/samples are kept as mine were. I do wonder if the confusion from the different results has come about as I had two tumours, maybe they tested different samples. That is why they decided to test the lymph node tissue as its more accurate - so my BCN said. I presume most things as I seem to be surrounded by confusion at times from the people looking after me. So far the only explantion for this is that a '0' was missing from my hosptial number! ... View more

Lots of good information on this thread, it was a good idea Finty. I meant to add to my post about path reports, if your original diagnosis was after 2005/2006 it is worth asking for your tissue samples to be tested to see if you are HER positive. Tissue wasn't routinely tested until after those dates. I did and I am HER+++. There has been some confusion as I originally was (2004) ER positive 6/8 when it was retested recently it came back as ER neg 0/0. I had been on Tamxofin, Arimdex and Extremsene. Taken off hormone treatment a few months ago. I queried this and asked for a retest which has come back as HER+++ and ER positive 8/8 - they tested the highest node which was effected. I need to talk to my oncologist about this as I am not on any hormone treatment at the moment. I do have a question, I had my first Pamidronate infusion last Friday and have felt very down and weepy since, has anyone else had this reaction? Can't be bothered to do anything. Could just be the situation I suppose but it seems to have been since I had that infusion. Paula x ... View more

Hi Finty, I have bone mets. Diagnosed in June 2009 with a spinal met to L1.Due to a clerical error where new mets were not added to my file, from a scan in Nov 2009 - so was considered stable and no treatment apart from hormone given. Which obviously was an error. I now have widespread spinal mets and a few rib, difficult to differentiate as I have developed osteoporosis. I am sure errors are not common but I would say to anyone, ask for copies of reports to be copied to yourself, keep an diary of appointments and outcomes from those appointments. I have just started Capecitabine, had one cycle. Herceptin and Pamidronate. Had a port fitted last Friday. I was in a fair amount of pain but a month ago had a second radiotherapy session to a large area of my spine and only have discomfort from L1 now. I was considered for surgery as the body of L1 has crumbled but bone shards are too near the spinal cord and its considered too risky. I have found this forum so helpful. It was reading other ladies experiences with bone mets and treatments that started me questioning my treatment and hence the error being spotted. Wish you well Paula x ... View more