[susieParticipant]

Hi. I had my CT and skeletal survey and apart from a few very minor lesions he said nothing to worry about. So its only the Plasmacytoma to worry about. My consultant showed me the scan, the tumour is really big, no wonder I’ve had pain. I start treatment next week on the Myeloma 11 trial, they have also offered the TEAM trial that runs along side it, but I haven’t decided on that yet. Antibiotics for 12 weeks against a placebo, don’t know I’m keen on that, I’ll give it thought.

Best wishes to all

Susie

[susieParticipant]

Thanks so much for your replies. It really helps to know there are people out there who know how a person feels in these circumstances.
My consultant has just phoned me. Apparently they are more concerned about the tumour on my sacral spine. He said it is rather large, the size of a tangerine, and it was missed by the physio team that took the MRI. Good eh. I’ve got to see him on Tuesday and he want me to have a CT and more Xrays. I must say I do feel he’s on the ball.
Mavis,
You said you had a Plasmacytoma on your spine. May I ask where abouts it was on the spine ? There has been no mention of surgery or radiotherapy to me.
Best wishes to all
Susie

[susieParticipant]

I’ve had the BMB and it wasn’t too bad this time. With the gas and air that is. I go back next week for the final diagnosis.
What I want to ask is, has anyone been treated at Wycombe Hospital or at the cancer centre at Stoke Mandeville Hospital ?

[susieParticipant]

Hi Karen
I saw the consultant yesterday. He wanted to see me early because he had been notified of my back pain and the mri. I had further bloods done (gp’s hadn’t informed him of the 39 pp–charming). Consultant wants to see the mri himself, so he’ll ring me in about 2 weeks and take things from there.
The only thing that’s really bothering me at the moment is this awful sciatic pain. I don’t know whether to put heat or cold on it.
I hope you are doing ok. Take care.
Best wishes to all
susie

[susieParticipant]

Hi Karen
Just thought I’d let you know I’ve been called to hospital early, that is tomorrow. I presume its because my para proteins rose again when GP did bloods for my back. I did ask the secretary but she said she didn’t know ! I presume the consultant will want to do a BMB which I don’t look forward to.
At the moment I’ve got awful sciatica. It started after the MRI, I must have been lying on a nerve. Been to physio but it didn’t help that much.
Anyway wish me luck for tomorrow. Hope your keeping ok
Best wishes to all
susie

[susieParticipant]

Hi All
Just a thought. Anyone on here living in High Wycombe/receiving treatment at Wycombe Hospital ?
It’s interesting to know what local care is.
Best Wishes to all
Susie

[susieParticipant]

Hi All,
I had the result of my MRI and its good news. It just showed bad arthritis and several compressed discs as well as the compression fracture. I had convinced myself the MGUS had advanced in view of the increasing paraprotein levels.
So my next monitoring isn’t till next month and I’m going to forget it all till then and hope that the pp’s have gone down.
My best wishes to you all.
Susie

[susieParticipant]

Hi All.
Well I’ve had my MRI and it wasn’t half as bad as I thought it was going to be. I did put eye pads on before I went in, feet first, and I could have fallen asleep. They said it would take 10 mins but it was about 30 mins, they kept putting me further in so I hope that doesn’t mean they saw something. The results will take 2-3 days when they will phone me’
Good wishes to you all.
Susie

[susieParticipant]

Hi All
Thank you for your replies. Sure does help having this forum to speak to people in a similar position.
Mike-I Like your idea to think of falling asleep, I could well do with the rest. haha
I believe you said in a post sometime ago that PP’s above 30 required treatment. Does that still depend on bone marrow count, ie; if its below the 10% mark.
Best wishes
susie

[susieParticipant]

Hi All.
I’m having my MRI on Friday. Hope I don’t freak out coz I’m not keen on small spaces. Has anyone had one for lumber area, just wondered if they put you in feet first or head first.?
I had the blood results which showed no osteoparosis, didn’t think it would coz I don’t fit the profile in any way. However, the bloods showed the PP’s are up again at 39. I’m not sure what to do coz there are three separate departments involved ie physio, radiology, and GP’s. I was refered to physio for low back pain and I don’t think it occured to my GP there may be a link with the MGUS. I’m not sure they’re talking to each other. I think I’ll have to wait for the result of the MRI then see if I should be chasing them up. I do wish GP’s were more tuned into Myeloma and its related conditions.
Well thats my rant for today. I hope you all keep well.
Best wishes
susie

[susieParticipant]

Hi Jill

It was the physio that ordered the xray at my request really. I think it was the radiologist who reported on the xray that ordered the MRI. I’ve heard from my GP and its a blood test for the osteoporosis. I thought it was a scan but they only do that if blood test dictates its needed.

I will mention the MGUS when I go for MRI but if the physios response is anything to go by, the radiologist wont know much about it either.

Thanks for your reply it does help. I live on my own so it does help to rant which I’ve been doing sorry.

All the best

Susie

[susieParticipant]

Hi Karen

Thank you for your very kind comments. I was so uptight yesterday I didn’t come on here. Felt I needed a break from it all.

I haven’t heard regarding an MRI appointment or from my GP yet. I went originally coz I thought it was my arthritis, I did explain my MGUS to the physio but I don’t know whether anyone has thought they should let my consultant know what has happened. I don’t know how to contact him.

I have a question I don’t know if anyone can answer. The radiologist( Who I presume doesn’t know about my MGUS) has queried osteoporosis cos of, I presume, low bone density, so does not Myeloma create the same low density in leaching ?

Keep well Karen

Best Wishes

Susie

[susieParticipant]

Hi Karen

Don’t want to hog your topic but thought I’d just let you know my latest.

I had a phone call from the physio dept regarding the xray I had last Fri. Apparently they now want me to have an MRI coz the xray showed a Lumber 1 disc fracture, and possible osteoporosis. So now I’m back to worrying seeing my pp’s went up to 36 on my last bloods. I saw that Mike said any reading above 30 requires treatment. I’m also to have various other tests to be arranged by my GP, but by this time my brain had switched off. It all came as such a shock. I am now wondering if its all to do with the MGUS or if Paraproteins occur with other diseases.

Susie

[susieParticipant]

Thanks all for your replies.

I’ve been to physio today. She feels this back pain is caused by arthritis but has taken xrays to confirm, so I am feeling a bit more confident that the cause while show itself. I’ve got to go back in 4 weeks for results and to see if the exercises she’s given me are working.

Keep well all of you

Susie

[susieParticipant]

Hi Karen.

Thanks so much for your reply. My pain is only present when I move, which I assume is mechanical pain from my arthritis. When sitting or lying I don’t have any pain apart from my hip, which wakes me sometimes. Once I move position it goes. So I assume my pains are down to arthritis. I just wondered if the pain they talk about is aching,stabbing, etc in description and if its on movement or all the time.
Keep well
Susie

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