Some of you may know I’ve recently been undergoing radiotherapy for this. Unfortunately treatment is not always successful & I think it may not have been in my case. Which means that this is likely what will end my life, rather than the liver mets I was so worried about only a few weeks ago.
So that something good can come out of this, I’d like to urge anyone with spinal mets to make themselves as aware as possible of the symptoms, to seek help urgently if they experience any of them & to not accept false reassurance from doctors but to insist on a spine MRI. My team never told me about the risks, and dismissed my concerns when I said I thought I had symptoms. I was never offered a spine MRI in 6.5 years of spine mets. 2 days later I was admitted to a different hospital & started radiotherapy. They hoped they had caught it just in time but I’m not sure now.
Sorry for the bleak post, & most of you will not be unlucky enough to experience this problem, but I wanted to let people know.
Tournesol x
Hi Tournesol, I don’t have bone mets but I didn’t want to read and run. It’s brave of you to post a warning, I really hope that it’s early days and you find that the radiotherapy has done its job. How are your bloods now? Can you go back on Ibrance? Thinking of you xx
Sorry to hear it may not have worked Tournesol, but they may well have caught it just in time so don’t give up all hope yet. I’ve had extensive bone mets for years but mine are mainly in my left hip & pelvis with only a few in my spine.
Do you have some tests coming up to determine whether it’s worked?
Sending love
Smartie x
Thank you for the info Tournesol…i do hope they have caught it in time…i’m sure there is something they can do…keep pressing. I have only trecently been told i have mets in spine and pelvis and until you mentioned about where your tumours are sitated i hadnt really realised how serious it was, so thank you for that. Do you mind me asking how you knew something was wrong, what your symptoms were. I think it may be a case for insisting on regular spine mri’s but dont suppose they’d do that. I hope you get started on treatment soon. much love.x
Thanks Stresshead. It is a relatively rare complication but it’s such a serious one… My initial symptom was slight leg weakness, which I thought for a while was post viral, as I had just had a weird & quite bad virus. I then found that cocodamol constipated me, which it hadn’t done when I took it the previous year. Co dydramol had but not cocodamol. I then started to feel that my left leg was a bit worse than my right, but I was still walking around, just a bit slowly. I started getting bad restless legs at night. I’d had those before too. Then once the constipation stopped I started getting bowel control issues but thought that was overdoing it on the prunes. Sounds silly now but I am sensitive to them. Then the next day the pain finally got worse & the 3rd doctor I highlighted the symptoms to actually spotted that there was a serious problem & the compression was diagnosed. If the first 2 hadn’t been so reassuring and if I was a more assertive and less trusting person who knows what would have happened… But I am where I am now.
Oh Tournesol, I too, often think I should have been more pressing, but also I know just how hard it can be to challenge things and of course, we expect the medics to know, dont we? I have often had similar symptoms to yours which have then gone away and thought, oh well maybe ive left the loo visit a little too late, or maybe getting older is the reason. I inject with Dalteparin, for a dvt I got from the chemo two years ago and that can interfere with bladder or bowel control…so my imagination sometimes runs wild. I try to think, well, if it goes away, then it cant be bad news!
Recently i had two bouts of right sided chest pain which went to the jaw! I was convinced it was due to the reflux the chemo is lovingly sending me…but thought ’ I better get it checked out’ The gp asked me loads of questions after doing an ecg, and I asked her what she was thinking, she said ‘I was trying to exclude a pulmonary embolus, but I think its just muscle pain! ’ much later when it was far too late, I thought ’ oh I wish id asked for a d dimer blood test!’ As she’d mentiones pulmonary embolus, I then started worrying! Anyway, ive been taking my omeprazole regularly since and have had no chest pain and no reflux…thank goodness.
i hope the treatment is working for you, and that you can be pain free as far as possible, yes, hopefully the treatment will work and things improve.
Moijan??
Thank you Tournesol. I am now very much more aware. I have just been in bed for almost a weak with violent sickness and stomach pains, with a touch of the ‘runs’. The doctor came out and i told her i was woried about scc. She said exactly as you did, that the main thing was leg weakness and proceeded to give me a good check over and said i was ok.
As Moijan says, we really need to be assertive and make sure thewe things are checked out.
I also had a pulmonary embolism which was very quickly picked up by a GP and when i stopped the clexane i used to ask for a d dimer to be done at my chemo blood test (as i did with tumor markers). Her quick thinking probably saved my life…pity the same couldnt be said when i found a secondary lump and was told it was nothing for 6 months!!
Hope you are both well.xx
Hi Stresshead and Tournesolxxx
Stresshead, was sorry to hear about your week in bed with the runs…that sounds a bit of a difficult week…what did the gp think it was? By the way, I found chocolate did that to me all the time I was on Vinorelbinr, so i had to deprive myself! So glad it wasnt spinal compression…tho…such a relief for you xxxx
and re the PE, recently, I was regretting I hadnt asked for a d dimer myself…should have, like you did, such a good idea.
Tournesol…so sorry to hear about the brain mets…had you had an inkling beforehand? Lets hope they will shrink down. Do keep in touch about how things are going for you…we are all here for you…all on the same gravy train…love and hugs
Moijanxx
Try, try, hard not to over think…(.one of my pitfalls) I know its very hard, but the brain always runs away with negative thoughts for all of us…if a symptom scares you…just see if you can get it checked out, then try and put it aside…if you cant then make an appointment with yourself to worry about it, at a definite time of day. See if you can distract yourself till then.
the very thought of brain mets would be a toughie to deal with, for all of us…so good to share ideas on here about how we might tackle these thoughts.
keep posting
hugs
Moijanxx
Dear tournesol
So sorry to hear about your brain mets I think it is something we all dread. I read your comments about Spinal cord compression. My onc once saw how i was walking and knowing I have a tumour on the sacrum and cancer cells all up my spine she wanted me to have an emergency MRI on the spine. They exammined my results and my last CT scan slice by slice and found I had a prolapsed disc so I had physio to help.
I have been away in France for the past 2 1/2 weeks and have been suffering with real bad pains in my back. My leg has also given way on me and I have been constipated it is hard for me because I also have MS and this happens with that but I have never had pain like that in the back before. I am getting back ache now I am home but not the pain I had in France. I mentioned it to my onc on Wednesday and she warned me to not let it continue without letting them know luckly it hasn’t recurred.
I do hope you will be ok and the treatment sorts it out.
Love and (((hugs))) xxx
Hi Tournesol, so sorry to hear about your brain mets diagnosis. I’ve only got one which is on the surface of the brain rather than in it & connected to the tumour in my orbital socket, I had some problems with vision & a droopy eyelid but touch wood, I’ve had no other symptoms. As I’ve stopped all treatment now not sure what’s going to develop but trying not to worry too much. My onc thinks my liver Mets will cause me more problems first - don’t know whether I should be glad about that or not!!
Hope you are not getting too many symptoms-try to stay strong.
Smartie x
Hi Tournesol, how are you doing? Not seen you post for a while so just checking in on you :-))
Helen xxxx
Nice to hear from you Tournesol. Fingers crossed for a good resultxx
much love, Moijan
???
Hi Tournesol and Helen, hope you feel better soon Tournesol, glad you have family and friends visiting.
Helen, your idea sound xcellent.myhandwritin is dreadful, but am hoping to start!
Moijanx