[SharonGParticipant]

Hi all

Well we all seem to be having radiotherapy at the moment!
As some of you may know I had radiotherapy last month on a plasmacytoma on my lower spine. Things seemed to be going ok apart from the numbness in my leg. Until 2 weeks ago when I started having pain in the chest region of my back.
My consultant suggested a PET scan to try to see if it would identify if things were new or old as my blood work was fine. However when trying to book the appointment I was told that there needed to be a 3 month gap between the scan and my last radiotherapy (and I had some last month of course!). So I was not impressed when I went to my clinic appointment on Wednesday, and quoted NICE guidelines of having risk of spinal cord compression and I should have an MRI scan in 7 days. Its a good job I did as I had my scan on Friday and had a phone call on the way home to get back asap! I am now on bed rest and unable to even get up to go to the loo! I have started more dex- great! And more radiotherapy which they have started today- Saturday and we all know they don't normally do radiotherapy at the weekend! My MRI scan shows the tumour pushing on my spinal cord and I am lucky I have not had more symptoms.
I am just grateful I knew the risks of spinal cord compression, I wonder how many of you would too and would have pushed the Dr for a scan.
Gaye I am glad you have a date for your radiotherapy and hope all goes well.
Sharon x

[brochoParticipant]

Dear Sharon thank god you knew to insist but what a heck of a shock!! I was in the same position when they eventually diagnosed me and its so frustrating not being able to move independently , I feel for you. I remember them coming round and checking the reflexes in my legs every few hours as they couldnt understand how I had been walking around with 3 vertebrae gone completely As time has gone on I have learnt to listen to my instincts more and am more aware when there is something not right , you are obviously the same ! How long is your course of radiotherapy for? Hope they get it resolved quickly for you so you can get home very soon love Bridget x ps it wouldnt let me post at first because I forgot its not allowed to mention the very hot place bad people go to !!Haha!!

[SharonGParticipant]

Hi Bridget
well I'm sure I'm going to that hot place that bad people go to!!!!!lol! I wouldn't wish what I'm going through at the moment on anybody else!
I have to have another 5 sessions of radiotherapy and i have no idea how long they are planning on keeping me on bed rest for, i am hoping only until i have finished the radiotherapy!
Hope you are beginning to feel some benefits from your radiotherapy
Love Sharon x

[brochoParticipant]

Hi Sharon well if you do go there you will be in good company !! 5 sessions sounds promising , I hope they let you home soon afterwards . I have been impressed with the results of my rt , the pain isnt constant now and can disappear for a couple of days at a time , I can cope with that! There was an excellent piece on radio4 the other day( see I am old!!) discussing modern radiotherapy and how it is equally as important as chemo or surgery Apparently rt is now often used to obliterate tumours and the success rate is really good , in that they dont recur It is all to to with the doses being so minutely and accurately given in radiating doses, which minimises risk to healthy cells The most reassuring news for people like us with spinal tumours is the very high success rate using rt to eradicate spinal tumours as surgery would be too risky . I must admit until recently I thought of rt as being mainly for pain relief and didnt rate it in the overall scheme of treatment So chances are when they have finished zapping your pesky critter it wont come back !!I hope you have plenty of visitors to keep you from being too bored over the weekend , and to bring you nice things to eat too!! love Bridget x

[susan123Participant]

Hi Sharon,

Sorry to hear you are in the hospital again , I have had bad back pain this weekend around the place where they do the bone marrow biopsy. I know about spinal chord compression as you know before xmas I had to go in for the day myself to have a scan, and that is what they were concerned about then. But in all honesty, I still do not understand it enough to push for everything as you do and I am glad you did.
What hospital are you in New x or Qe this time and what ward ? I will try to come to see you if you are in New X. I hope it all goes ok for you, I can't believe how much you have gone through, but you are a very strong person and I know you will come through this ok. I am thinking of you and sending big hugs !!!!!!!!!!!!!!

'Keep the faith' (difficult I know )

Love Sue xx

[mhnevillParticipant]

Dear Sharon

So sorry you are having such a bad time. Having RT isn't easy when you have such a bad back, even when it is to help things long term.

Before i had an op to remove a plasmatoma from my spine (T12) I was also bed bound, being hoisted onto a badpan is great fun!!! The strange thing, I found, was that after I started taking steroids, which I think is the dreaded "dex" all my pain went. Of course, because I was on Hospital, not yet diagnosed with MM, I just took what they put my way, eight little tablets. It was like a miracle. I do wish it could do the same for you.

I was awed by the skill of the Consultant that removed my tumour, but am glad that you aren't having to go through that.

All love.

Mavis

[GavinParticipant]

Hi Sharon
Just picked up on your situation. Sorry to hear about it and hope the radiation & Dex(?) works as well for you as it did for me when I had the same happen in Oct.2010. I still have issues arising from a near fully-fledged Cauda Equina from spinal compresssion which has left me with slowly improving PN in various places below T5 and continuing walking/stability issues.Thank goodness you knew the signs and the protocols. A lesson for all of us.Good luck and best wishes.
Gavin

[zasrsParticipant]

Hi Sharon

Sorry to hear your news, hope all goes well with your treatment. I am so shock that you had to quote NICE guidelines to get an MRI scan, it is a scandle, not many people including me know about this. Good to know that NICE has some positives it usually seem a total negative organisation!!!

(wish this site had spell check!)

All the best

Sarah

[SharonGParticipant]

Thank you all for your positive thoughts and wishes
I have to admit that the only reason I knew to quote the NICE guidelines was that i had been to see another Dr the day before about my pain and she told me too! I wouldn't have known to otherwise, but i did quite easily find it on the nice guidelines website!
I am back on the dreaded dex! So i am having the munches again- i was only just getting over them from being on them last month, I'll be the size of a house at this rate!
Sue unfortunately i am in the QE again! Its a pain as it makes it so difficult for my family, but i have requested that if i am going to require velcade that i have it at new x. I will text you later
love to you all
Sharon x

[BADGERParticipant]

Hello Sharon

I am sorry to hear about your spine I hope things get better soon could you please let me know what the nice guide lines are forwarn is for armed

Thank you Jo

[tinkerbellParticipant]

Hi Sharon,
Hope the radiotherapy works quickly for you as mine did for spinal cord compression last June. I knew something was wrong needing painkillers on a regular basis and a numb feeling in my left leg caused me to go and see my consultant unfortunately she was very flipant and told me to go off and get a scan privately. This uncovered my spinal cord compression and I like you was immediately admitted and on bed rest for a week – felt like a bit of a fraud being pushed up and down corridors. Thankfully the problem did seem to resolve quickly and helped loads although I always knew that my remission was over as my light chains were climbing at that stage but the RT allowed me to delay chemo until the kids went back to school. Fingers and toes crossed that you are up and about soon and that the leg numbness gets better. Thinking about you xx

[SharonGParticipant]

Yeah they have finally let me up again! The physio came round yesterday and after checking with the drs i was given the all clear to get up! Hopefully will be able to go home tomorrow when they have given me my last dose of radiotherapy.
Pam, you amaze me as you so have been through the mill with this disease and yet you still manage to look on the positive side of things.
Jo, as soon as i get home and am not reliant on this hopeless hospital computer i will put up the information i found on the NICE guidelines about spinal cord compression
Love Sharon x

[brochoParticipant]

Morning Sharon great news !!Bet you cant wait to get home Take it easy love Bridget x

[tinkerbellParticipant]

At last some positive news Sharon I have to admit to refusing to not walk the six steps to the toilet on my own which with hindsight could have lead to all sorts of problems but as I was out treking around Rathlin Island the Sunday before my admission I was being a bit pig headed. Getting home to your own enviroment is lovely and away from the daily routine of hospital no matter how lovely the staff are is a blessing and the kids will be so glad to have you back. Fingers and toes crossed that your on the mend and get back on your feet soon – you certainly have been through the mill.
Pamela xx

[susan123Participant]

Hi Sharon,
At last some good news, I am really pleased you may be allowed to go home. I am sure you will feel much better then and your family will be really pleased. I think you are a soldier mate, and an inspiration to all of us, onwards and upwards sharon, will ring you when you get home.

Take Care,

love sue xx

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