[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

[kpParticipant]

Oh Susie I am sorry to hear your news.
You are not hogging my topic. I like to think of it as a shared thread which hopefully we will all benefit from. So sending you a virtual hug and a big thank you for sharing your journey with me.

But on a more positive note I think Mike also said that MRI’s are being considered as very helpful in the identification of the progress of the MM so it will be good to have a more in depth answer to some of the questions you must have.

As a newbie who has read quite a lot around the topic but is definitely not an expert, I think they would treat if there is evidence of any damage to bones or organs but if paraprotiens are above 30 then you are definitely into the asymptomatic category.  I hope you will find it helpful to know for sure what has caused the fracture.

Keep me posted as to how you get on,

Best wishes Karen

 

[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

[beverleyParticipant]

Hi Susie
Who asked for original lumbar spine X-ray? They
should have given all your clinical details to the radiology department including any pre exsistng conditions and what their clinical diagnosis was. As far as I am aware myeloma shows as lytic lesions on X-ray where as osteoporosis is a general loss of density. You could ring the MRI department to find out if they have received the request and ask how long the waiting list is. When you have your scan tell the radiographer you have MGUS and they can put it with your other details. Radiologists need all relevant information to make a diagnosis

Hope this helps
Jill

[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

[beverleyParticipant]

Hi
The radiologist will know all about MGUS and smouldering and it will dictate what he looks for if he has all the information.
I am a radiographer specialising in diagnosing breast cancer and there is nothing worse than a GP or surgeon only giving you half a story. If you have all the information it can change your diagnosis.
Anyway feel free to have a rant, the problem with smouldering is you look and feel fine physically but sometimes your “head is a shed” as they say

Jill x

[kpParticipant]

Hi Susie

I have just got home and read your posts and Jill’s responses. All I can add is that I contact my Consultant through his secretary, this is what he told me to do if I need to advise of any changes /concerns.  So first point of call might be to ring the hospital and ask to speak to the medical secretary for your Consultant, leave a message about recent findings, your concerns and ask for a call back.  Worth a try at least I think.

Jill’s advice to ring the MRI department direct is very sound. When I was referred for an urgent skeletal survey but heard nothing for a week I rang Xray to check they had the referral.  A very nice young lady said ” yes, we have the urgent referral here, it just hasn’t been acted upon yet”  but then proceeded to book me in  for the next day, so could work for you too.

In relation to rant’s, I used to know a young man who set up a webpage and filled it with all the things that exasperated, confused, irritated him etc.  He called it T*** rants. The good thing about it was it often reflected the confusion and frustration we all feel as we try to navigate through, and make sense of this journey through life. I suppose my point is that it is good to share, and so often there are common experiences which by sharing we can help to make sense of for ourselves.

I love the “head is a shed” quote, I am getting so many gems from my Forum Friends to use to describe how I feel about this  smouldering myeloma.

Karen x

(Let us know how you get on)

[SalParticipant]

I just wanted to reiterate what Karen says above: if appointments take a while to come through we always phone to check. Quite often the appointment is made there and then. This seems to be particularly the case with scans for some reason. No harm in checking and it’s better than being anxious about how long you are going to have to wait.

[karrieanneParticipant]

Hi Karen, thank you for your reply of 10th. I have had a lot of time to read the Myeloma UK site, it really is full of information.

There are an awful lot of people in a worse state than I am.

Two monthly monitoring to see how the Myeloma is progressing sounds good, now why didn’t I think of that? You have a wealth of advice for which I’m thankful. I’ve been a bit down, a bit scared and having no-one to talk to (my partner doesn’t  want to hear it) hasn’t helped, but now I seem to be getting out of this rut, I’ll take one day at a time and try not to think about it! It’s a bit scary reading about others and their treatments and I really hope everybody gets well and doesn’t have an awful time with their treatment.

I will keep reading these posts, let me know how you’re getting on, I hope you stay well. If my status changes I’ll let you know.

Thanks again for your advice, Karrieanne

[teds31Participant]

I have just been reading through all your comments as I haven’t been on here for a while, I am 82 and have had smoldering MM for over 7 years and I understand your remark ” head is a shed” I mostly forget about it now but I get 3 monthly check ups at the cancer unit at the hospital, and its usually a five minute interview all the results are OK see you in 3 months. Every time it gets round to appointment time I begin to feel worried I think it got to happen some time maybe this is it , then I go and its “you are OK see you in 3 months”.
I know I’m lucky but its just the wait and worry bit.
Its also interesting when I read this forum how every one is treated different, in all the 7 years I have never discussed my MM with any of my GPs, yet most people on here see there GP about MM, the only part my GP plays is that I make an appointment two weeks before I go to the hospital and have my bloods taken.
Well good luck and may you smolder for as long as me or even longer. Ted.

[hikernickParticipant]

To put the other side of the coin, I think I had exactly 2 months in a smouldering status, then my PP level went over 30, which, combined with some lytic lesions in my skull, led to treatment starting. 8 1/2 months and 2 different chemo regimes later I’m almost back down low enough to consider stem cell harvest. As someone said higher up, every patient is different. I’m looking forward to the day – probably more than a year away, when I will be on checkups less frequent than monthly, and blood tests less than once a week! 🙂

Nick

[teds31Participant]

Yes just as we have always said Nick, every one is totally different and I regard myself as VERY lucky.
All the best to you and others not as lucky as me. Just waiting now for the brown envelope to drop through the letter box.

[karrieanneParticipant]

It is great Ted that you’ve been smouldering for 7 years and very unfortunate Nick that you only had 2 months before treatment. I’m newly diagnosed, I was okay at the end of May and I have my next appointment in July. It is scary, I also have Coeliac disease and osteoporosis, when I had mt Dexa scan to measure density I had a lot of bone thinning. I’m just scared now that the Myeloma could cause lyric lesions where the bones are thinnest. It’s worrying but I’m trying now to put it to the back of my mind, the radiotherapy treatment that I had for my shoulder pain has done the trick, I’m now able to go for a walk and do the jobs I couldn’t do for the last two and a half years, I can start driving again (if I’m careful with the painkillers) so I’ve got some independence back!

As you said Ted, everyone’s different, with a lot of luck I might smoulder for as long as you! Good luck with the treatment Nick, I don’t know how I’d cope if it were me.

I too love “the head is a shed” quote, that just about describes my head at the moment and probably a good few others!

All the best, Karrieanne

[kpParticipant]

Well, another two hour wait, but another two months now before next monitoring appointment so all good.

Hope you all keep as well as possible

Kind regards

Karen

[karrieanneParticipant]

Hi Karen,  that’s great – another two months eh?  I hope you’re feeling well, making the most of this good weather that we’re having. Did you say that you might be going away after this appointment? If so I hope you have a lovely time.

I hope you don’t mind my asking – did you have your blood tests done before you saw the Consultant? I haven’t been told to do that, so I presume I’ll get my bloods done at the time and then have to wait a couple of weeks for the results ! Stay well,

Karrieanne

[Author]

Posts