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Spinal cord compression awareness

22 REPLIES 22
Moijan
Member

Re: Spinal cord compression awareness

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

Tournesol
Member

Re: Spinal cord compression awareness

Thanks Helen and Moijan. Glad you have been able to start new treatment

Helen. 

I'm on my week off from Xeloda and struggling with bowel stuff. But it's not regular diarrhoea, so maybe more to do with my cord compression or the leptomeningeal mets. Difficult to manage anyway. Good things are contact with friends and family.

 

Tournesol xx

HelenAquarius
Member

Re: Spinal cord compression awareness

I'm ok thanks Tournesol - had crap result from recent scan so chemo not worked and swapped to another but picked myself up again so ok now.

 

Sounds like it is tough to cope with at the moment. The thought of more treatment when you are not feeling great. 

 

What are you doing to keep going mentally?

Hope you have some pleasures in life that you can keep up with. Ive recently been writing short letters to friends and acquaintances telling them how good they made me feel at a partic point or how great they have been supporting me. I'm enjoying getting in contact in a good old fashioned card/letter, telling them about my illness if they didn't know and what they have meant to me.  It's been lovely and I've had loads of lovely letters back. Anyway, I'm waffling and it's silly o clock so just thinking of you and wishing you well. 

 

Helen xx 

Moijan
Member

Re: Spinal cord compression awareness

Nice to hear from you Tournesol. Fingers crossed for a good resultxx

 

much love, Moijan

💙💚💛💜🌷

Tournesol
Member

Re: Spinal cord compression awareness

Hi Helen,

 

Thanks for thinking of me. Still here. Decided to go for the chemo option which both rads and med consultants recommended. I think although they didn't say so that with my dire situation it was the best combination of quality and quantity of life. As it's not possible to treat everything simultaneously. Well not on the nhs anyway. 

 

Sorry haven't really kept up with news, hope you are doing ok.

 

Tournesol xx

HelenAquarius
Member

Re: Spinal cord compression awareness

Hi Tournesol, how are you doing? Not seen you post for a while so just checking in on you :-))

Helen xxxx

Tournesol
Member

Re: Spinal cord compression awareness

Thanks Smartie. Good to see that you're doing OK since you stopped treatment. My main symptoms so far are leg stiffness and slightly blurry vision. And the stress of knowing that I made the wrong treatment decisions and not knowing whether I'm brave enough to do whole brain radiotherapy when it will make me feel worse for weeks before possibly making me feel better. I don't seem to be eligible for stereotactic radiotherapy due to size & no of lesions. Don't have the strength or support to seek second opinions or alternative therapies. Only highlights of the day are chats with the odd visitor & being wheeled to the hospice garden. So hard not to think too much.

 

 

Tournesol x

Smartie
Member

Re: Spinal cord compression awareness

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

Tournesol
Member

Re: Spinal cord compression awareness

Thanks Marirose. Seems like most people have more on the ball doctors than me. I flagged up several things which were not taken seriously and am planning to complain in case it can help others. Am now at a different hospital but not particularly happy with them either.

 

best wishes

 

Tournesol x

Marirose
Member

Re: Spinal cord compression awareness

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

Moijan
Member

Re: Spinal cord compression awareness

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

Tournesol
Member

Re: Spinal cord compression awareness

Thanks for the messages. Think it's sinking in a bit today which is scary. I will try and keep posting.

 

Only inkling was some minor vision changes. But I thought that was just middle age, eye strain etc. Also I think some of what I thought was the radiotherapy not working may actually be the brain Mets, as the effects can be similar.

 

Tournesol x

Moijan
Member

Re: Spinal cord compression awareness

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

HelenAquarius
Member

Re: Spinal cord compression awareness

Oh crikey Tournesol, I'm so sorry to hear about the brain mets dx.

Are you coping ok? I'm guessing it will take some time to digest.

 

Thinking of you at this scary time, hoping these treatments will get the mets under control.

 

helen X 

Tournesol
Member

Re: Spinal cord compression awareness

Glad to have been of assistance Stresshead. Good that you've been checked out.

Unfortunately I've been diagnosed with brain Mets today too so another bump in the road to deal with! Will be starting capecitabine next week and possibly WBR as the Mets are diffuse. But there's time to consider that one first.

 

All the best,

 

Tournesol x

stresshead
Member

Re: Spinal cord compression awareness

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

 

 

Moijan
Member

Re: Spinal cord compression awareness

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👩🏽

 

 

 

Tournesol
Member

Re: Spinal cord compression awareness

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.
stresshead
Member

Re: Spinal cord compression awareness

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

Tournesol
Member

Re: Spinal cord compression awareness

Thanks for your replies Stillhere and Smartie!

 

My bloods are still low but hoping I will be able to start Ibrance again on Friday.

 

I don't think they are doing any tests to see if the radiotherapy has worked, because they are not offering me any other treatment if it hasn't, other the systemic treatment for the cancer. I thought that some form of surgery might be an option but apparently not. I don't know whether that's because my prognosis is poor or whether it's to do with the position of the tumours etc. It's all pretty depressing which is why I wanted to alert others as I had no idea what to look out for other than a step change in pain & that was the last thing that happened. I had had worse pain on previous progression without there being a cord problem then. I think from what I know know it's the combination of pain, neurological symptoms & bladder/bowel problems. But it's easy to be wise after the event.

 

All the best and thanks again.

 

Tournesol x

Smartie
Member

Re: Spinal cord compression awareness

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

Stillhere
Member

Re: Spinal cord compression awareness

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

Tournesol
Member

Spinal cord compression awareness

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