[zm31Participant]

Hi all,

I’m Zoe, 31.

I’m hoping someone can possibly shed some light. I thought I had a viral infection as was getting sweats, extremely fatigued and lower back pain. My blood tests came back from my GP last week and she said it indicates myeloma and that I need to be seen within the next 2 weeks by a haematologist.
The whole appointment was a bit of a blue but she mentioned it indicated myeloma because my level was 56. Does anyone know what this means and if a GP can say you have myeloma?

I’m seeing the haematologist tomorrow, will this just be a consultation or am I likely to have further tests on the same day?

Any advice would be appreciated.

[matthew2019Participant]

Hi Zoe

Im assuming your GP has referred you to the Haematologist to discuss if you need any further tests. They may do another blood teston the day just in case it was a rouge result and then decide if any further tests needs doing. Hope this helps

Regards

Matthew

[suew1960Participant]

Hello Zoe My goodness your head must be spinning! Do you have someone to go along with you to the haematologist? There is often a lot to take in and it helps if someone else hears it too! Glod that your appointment has come round quite quickly so you can hopefully get some answers soon. Wishing you the very best. Suex

[zm31Participant]

Thank you for your reply Matthew. I really appreciate it. I guess I’m just sat here really worrying about as I can imagine you all have been at some stage and if not still through your individual journeys.

[zm31Participant]

Thank you for replying sue.

Everything is just a bit of a blur at the moment. My mum is coming with me to my appointment tomorrow to be extra ears for me.

My liver enzymes were abnormal too on my blood tests but I’m sure the haematologist will be able to advise me why this is I hope.

Thanks for getting back to me x

[rosaryParticipant]

Hi Zoe

Your GP has done their job by suspecting something and referring you to a haematologist , They are likely to request more blood tests and no single reading (56? ) should be taken in isolation as being particularly significant.

A tip I was given was to record the meeting with the haematologist as they can use a fair bit of jargon that you can miss first time.

I am about 3 months ahead of you now and have found the more you understand how Myeloma is diagnosed ( blood and bone marrow plasma is the key) the better you will feel about how to deal with this and the good news is that even if you do have an issue there are some great treatments available

A lot of what I initially read on the internet is out of date which is why this web site is useful as you can get the latest and really positive developments.

Let us know how your meeting goes and any questions you have… good luck

[zm31Participant]

Hi all, back from my appointment. I had more bloods done and a full body X-ray. He also said I need a CT scan which will follow in the post.
He said my protein levels were high but this could be due to inflammation possibly. I didn’t really ask many questions as I was unsure of what to ask. But I’m back there again in the 27th for my results.

Thanks for the advise I really appreciate it.

[rosaryParticipant]

Hi Zoe

The xrays and scans are both an important part of the investigation work – did he mention an MRI ? The pain you mentioned in your lower back will be looked at by these scans looking for any cause of that.

It is probably paraprotein levels the next set of blood tests is looking at and these can take about 10 days to come back from the lab – suggest ask for a printed copy of all your blood test results to take away. I have to become much better at understanding blood tests so something to keep you occupied until the 27th …

I found the two key blood test results are Paraprotein and free light chains – I also had a bone marrow sample taken and you might want to ask about whether they plan this for you – it’s a relatively simple

If you do need treatment and Plan of using the NHS maybe quietly research your local hospital and waiting times and expertise in Myeloma.

[zm31Participant]

Hi Rosary.

Thanks for the reply it’s been really helpful & apologies for the delayed response.

He didn’t mention what type of scan I would be having and that I’d just be having a scan. So far I’m still waiting for this to arrive in the post. I’m back there on the 27th so I’ve now wrote down some things to ask so I’m not walking in with my head above the clouds this time.

I’ve seen my GP again today as I’m still not feeling to good as I’m sweating a lot and she did confirm from the blood results they did that my light chains in my blood were raised along with Beta 2 microglobulin were raised too.

She however did not tell me by how much these were raised or why they were abnormal so I guess it’s now just a waiting game till I see the haematologist again.

I’m hoping these are raised for some other reason but from what I’ve searched on google and myeloma pages it seems to be a high indicator of myeloma.

[mulberryParticipant]

Hi Zoe, your situation sounds very similar to mine last year. I’d been to donate blood but was told I should see my GP as I was very anaemic. I had blood tests which revealed a number of issues so the GP ordered an electrophoresis test. This came back showing a monoclonal spike and low beta 2 microglobulin. The GP was pretty convinced I had myeloma but I still had various tests in the haematology dept before I was formally diagnosed.
A year later I feel really well. I had 4 months of induction therapy followed 6 weeks later by a stem cell transplant which led to a complete response, ie paraproteins are not currently detectable. 3 months afterwards I went to Greece on holiday, and I am now feeling better than I could have dreamt of last year. The diagnosis is shocking to the core, but with current research and new treatments there had never been a better time to have myeloma. I have myeloma, but myeloma does not have me.
Don’t despair, nor panic that treatment has to start immediately. For some of us myeloma progresses relatively slowly and unless it’s causing bone or infection problems it isn’t necessarily risky to monitor it for a while.
After diagnosis I asked for a second opinion with a myeloma specialist and subsequently transferred to his hospital. This was available on NHS.
I hope you have answers soon.

[zm31Participant]

Hi Mulberry,

Thank your for you’re reply and I’m so pleased to read you’re feeling well.

Did you have any symptoms prior to diagnosis? Did it take long for your diagnosis once the GP had carried out the further blood test? Also how long after diagnosis Did you start treatment?

Apologies for all the questions, I’m trying to be prepared. I’m going to my result appointment alone so hoping to be as prepared as I can be.

Thank you 🙂

[zm31Participant]

Hi all,

Wanted to drop by & thank you all for all you’re advice, support& guidance on what has been a difficult few weeks.

My haematologist has now discharged me back to my GP. He said my igA was slightly over the normal (it was 50) and my mri shows signs of wear & tear but at this stage does not indicate myeloma. He said my liver enzymes are sky high and will need to discuss this with my GP & arrange a liver scan.

However he wants my proteins levels monitored by my GP every 4-6 months which has left me slightly confused.(

[Author]

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