Hi, I’m back after 5years NED. I feel and look great, just cant walk.
Unfortunatly I have three toumors in my spine. i dont know if I’m lucky or not - there is no pain cause of spinal compression.
It’s all a bit unreal 7 weeks ago I was singed off work with an incredible sore back - the ex ray came back clear.
4 weeks later I’m in E&A, dragged there by hubby, and can hardly stand.
Got home to day as I can mobilise using a zimmer , though I have to lift and move my legs by will power as there is no feed back.
I had rads to the T4 that seems to have helped.
I’ll get full facts next week when I meet the uncologist.
does anyone else have spinal compression - some handy tips on copping would be great.
Hello Glo, I got diagnosed with bone mets 13 years ao and am doing well. I have a drug called Zolidronate ( also called Zometa) to strengthen my bones. There are lots of pills out there too which have helped me a lot and allow me to do most things including driving my car. I am on chemo at the moment and doing well. I see my Onclogist soon. When I was diagnosed with bone mets I thought that was the end of the road but here are lots of things out there that can make things more bearable. Keep in touch when you know more. There are lots of us on here with bone mets. You can see the title of the thread on here. It is called. "Bone Mets, please join us. There are lots of lovely ladies on there with lots of differnt things to share about BC. Please look out for the thread and pop in to say hello. Hopefully others will be along here to give you some help. Best wishes, Val
Hi Glo, I also have multiple spinal mets having been diagnosed with collapse of ~T4 about 16 months ago. Although the collapse was displacing the lining of the cord I didn’t have cord compression. I had radiotherapy and a change in hormone treatment as well as zometa like Val.Currently i am on an oral chemotherapy called capecitabine. Since then i have had some further progression in other areas but the collapsed vertebra has remained stable…
You may want to look at NICE guidelines (the patient version) re management of cord compression to pick up ideas re questions to ask and likely further management. sometimes surgery is offered…but usually before radiotherapy…
Lets hope you get lots of recovery in function.
Best wishes. Pamx
Thank you both for answering me.
I’m worried and a bit scared but my biiggy at the moment is how dependant I am on every one.
I’ve worked as a carer for over 20 years so more used to doing than being done for.
I worry my family will have to much to do for me. Yes I can manage my personal care but cant cook. shop,clean or even walk the dog.
Must admitt I’m happy to be pain free - I dont do pain very well.
Thank you both for your good wish’s keep well and have fun
Gi Glo, Just a brief note to guide you to the comments under financial issues and also under discussion in bone mets thread. Just to check you’ve applied for DLA and mobiliility allowance. You should be entitled to higher rates of both I would have thought and it may give you financial flexiblity to get help for the things you are finding difficult at the moment. Pamx
First of all, I’m really sorry to read about your recurrence.
The second thing this is, if you have spinal cord compression you might like to talk to your doctor about Cyberknife stereotactic radiotherapy (if you pm me I can give you some links to info that you could look at). I had CK for skull mets in October 2010, and since then have been involved setting up a Charity which will raise awareness of Cyberknife, help cancer patients who are considering it, and assist hospitals who wish to acquire it with fund raising etc. I suspect the treatment you are likely to be offered (if you are being treated at a hospital other than the Marsden, Barts or Mount Vernon in London), is chemotherapy and conventional radiotherapy to help shrink the tumours. The problem with conventional radiotherapy when used on the spine is that it can only be given at a low palliative dose (due to the proximity of the spinal cord), and as a result the cancer can grow back. Cyberknife is so precise that it can be given at a very high dose, and treat tumours in very tricky areas (such as the spine of visceral organs).
If it’s something you want to pursue, but feel your doctors are unlikely to offer, my suggestion is to ask for a second opinion at one of the Hospitals I have mentioned above. Ultimately it may not be suitable, but in order to find out, you will have to speak to a doctor who specialises in it.
Good luck with whatver you decide, and hope this helps.
hello glo
my name is Jacky and i have secondary breast cancer which has spread to my spine and cannot walk now.
i have cord compression at T4 and compression to thecal sac at T5 to T7.
I wondered how you are getting on after your post in June and what treatments helped.
have been told it maybe to late for me to get my mobility back but will try anything to help walk again
jacky
Hi lemongrove
i am sorry about my message i did not mean to intrude i am just trying to find my way or were i need to be on this site but one thing i will be asking my onc about is it changing i did have a biopsy in 2010 which said at that time er+ and her2- but he never mentioned the fact that it could change there again Dec 17th
will try and find this section again to keep updated with you all
kay
Hi Jacky. I’ve had rads to T -7 and again to T2 also a very big injection of steroids straight into a vein.
With Physo , I can mobilise for a short distance, though I need a crutch for support.
I can stand alone long enough to clean my teath.
I have some feeling in my feet and legs - though its patchy - I can feel the ground under my feet - the legs just dont move as they used to.
Still have some problems with the bowels and bladder but I can manage them.
Down side there is pain, a lot of pain. However between a slow release morphine tablets and oramarph I manage to stay comfortable.
Some days I’m to comfortable, I fell the other day trying to run, I was trying to save my mobile phone from being knocked down by the cat - and forgot I cant move fast. Top of my body hurled forward, while my legs stayed where they were. LOL
Nothing hurt - just felt foolish.
If the compression to the spinal cord eases - you should getsome mobility back. You may be lucky and get most of it back. I hope so
GLO
thank you for your post it has encouraged me to think that there maybe hope of being able to move again.
every day i practice standing to put the weight on my feet and i am still waiting for the physio at local hospital.
will let you know of my progress.
thank you once again.
jacky xxx