[chrissyParticipant]

Hello Everyone,

I am new to site. I am 64. I live in Bromsgrove.
I was diagnosed with Smouldering MM in April last year.
After regular bloods tests, Mri's I was told on Thurs that it has started in my spine. I had only had a Mri scan 2 months earlier and there was nothing then.
I am to go for Radiotheapy first and then go on a trial in about 4 months for SCT.
Can anyone tell me about the Radiotheapy? I dont know what to expect as my appointment has not come through yet. Will it involve a hospital stay?
(Walsgrave, Coventry)
I was to shocked to ask my consultant any questions- I suppose I thought I could go on for years just smouldering.
The other thing I am worried about is I have never had a full body MRI
and I'm frightened it may be in other parts of my body. I have aches & pains everywhere! I have only had MRIs on spine & xrays on arms & legs.

I think perhaps I am one of the luckier ones after reading some of the posts.

I first went to my doctors because I was very stressed.
I asked for blood tests to be done. He replyed there was no need and I told him I wanted a full set done in case it was hormones etc.

So thats how I got to where I am.

I am terrified – my marrow bone biopsy was not pleasent – I had a very bad reaction and was told after I could have had a seditive but I was not offered one – what were your experiences?

I think all this has not sunk in yet – I cannot believe this is happening to me – I keep telling myself its not true and Im OK.

How did you cope?

[tomParticipant]

Hi chrissy

Well first a warm welcome to you and sorry you had to join us, But here you are so lets make you comfortable 😀

Its going to be a road of twists and turns for you but it is a doable, I was diagnosed in 2009 went on and had CTD as a first lot of treatment followed by my SCT all that in 2009, I sit here in remission and drug free 😎

I have not had RT but my young bride (Elaine) had 25 sessions of it after being diagnosed with breast cancer (yep we have been through the wars) and it made Elaine tired towards the end of it and slightly burnt but they sorted that out with cream, and am pleased to say it wasn't a stay in it was all done traveling to the hospital every day, and each session was over and done in less than 10 mins.

I cant recall if they done all of my body when I had the scan ?? but have had one of those twice also full body Xray of all my long bones and scull, I have had three BMB's and though they aren't great they keep the Dr informed on how things are going, I for one cant wait till they find a softer option.

Good Luck in your road to remission.

Tom Onwards and upwards x

[mhnevillParticipant]

Hi Chrissy

Welcome from me too, sorry to meet you here.

Re radiotherapy, You will go to hospital to be marked up so they know where to direct the machine to. The worst bits I found, were transport, as I couldn't get there under my own steam, and laying flat on the narrow metal couch. A large doughnut shaped machine moves right round you body and shoots invisible rays from various points. Not at all painful, but you have to use plain soap and use cream to stop any burning.

Glad you got diagnosed so early.

All best wishes.

Mavis

[VickiParticipant]

Hi Chrissy,

My partner Colin had radiotherapy on a bone in his back. When he was diagnosed we were petrified and even more so of the treatment. The radiotherapy, as Tom says was over very quickly, he had one massive dose that latest minutes. It left him with a mark on his back, like a square, and he had to have cream on it to make the skin smooth again. The radiographers explained everything. Sometimes people are sick but they give you tablets for that, and it did make him a bit breathless at times for a while but overall he got through that ok.

With regard to the X-rays/MRI, Colin had a whole body scan and they look for mm in the long bones, like your spine, legs, etc. Colin had mm in back and a little bit on leg, but they didn't give any treatment for that. He went on m11 trial and had sct in November 2012, in fact it's a year now :-). It was challenging, and very upsetting a times but you can do it. With the help of the forum, friends and if you have family it is the ideal combination, along with the medical teams who are great.

Good luck with your treatment

Vicki and colinxx

[Author]

Posts