Awaiting potential myeloma diagnosis - advice appreciated

Hi all,

I’m Zoe 31 from County Durham.

For a while I have been getting the sweats. At first they weren’t troublesome but then I’d be waking up in the night drenched. These have now stopped but I’m still getting the occasional sweat throughout the day with headaches.

I had routine bloods done and they came back abnormal for beta 2 microglobulin and light chains. I never thought to question these. My Gp said a normal range is 23 and mine was 56. She said it’s indicating I have myeloma.

They arranged a 2 week referral to a haematologist where I’ve had more bloods and a full body x Ray. I have an MRI this week and go back for results on 27th.

I guess I’ve come to this forum for advice and although I don’t know what my levels are. Is there a possibility this isn’t myeloma or is it indicating there is something there?
I have fibromyalgia and have a lot of bone pain anyway. But my GP thinks this could of been masking a lot of my symptoms.

I have no one to come with me to my results so feeling abit alone about it all. Any advice would be appreciated

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Hello Zoe, I am not medically qualified but I understand that you want as much information as possible as soon as possible and that the wait is frustrating. I had to have lots of tests, blood tests , scans etc before they worked out what was going on with me. I think it takes time for the medical professionals to put all of the pieces together and then they have to work out a treatment plan. Good luck for the 27th when you should get some answers. This forum is very good and there will be people on here who can provide advice and support.

Hi Zoe, welcome to our community forum I hope you find it helpful, supportive and interesting. I am no good on medical questions, perhaps these are for your medical team. I have found this site has empowered me to ask all the questions and follow up questions that are medical, my fears, thoughts and feelings. I am one of those people who freezes as soon as I go in for my appointment and my mind goes blank. I have found, as opposed to having someone with me, I take my trusted notepad and pen with me. It means I can write down everything I want to ask before I go and write down all the responses and further questions I need to ask. It sounds as if you feel very alone, well we are all here to support you and the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. Take lots of care and please let us know how you get on.

Hi Zoe
Myeloma is difficult to diagnose and is often missed but it sounds like your GP was on the ball and you have been referred to the experts. Generally you don’t fit the profile for a Myeloma sufferer as usually they are male and well over 60 but as it is such an individual disease the profile is not such a good guide these days. I know of someone who was 19 when diagnosed and even within my limited sphere of contacts I know at least 3 ladies who have been affected.
Waiting for the diagnosis to be confirmed is very stressful but even if the worst happens you need to remember that it is a very treatable disease and responds well to treatment particularly if detected early which seems to be your case. The disease can be forced into remission and although Myeloma is a quite rare cancer there have been major advances in its treatment and this continues.
I was diagnosed with the disease 4 years ago and after the first lot of chemo I went on to have a Stemcell transplant. The disease was then in remission until last year but after a further tranche of chemo I am back into complete remission.
At this stage I would offer you two pieces of advice:- firstly do not be tempted to try and look up Myeloma on Google - it is far too confusing. You are already using Bloodwise and they have an excellent booklet on Myeloma. In addition there is Myeloma UK who can answer pretty well all your questions and like Bloodwise have a telephone helpline.
Secondly try not to panic. Easier to say than do perhaps but even if your worst fears are realized there is plenty to be positive about and you will be able to carry on with your life. I know 2 ladies who have both been able to enjoy 12 years of remission and have lived life to the full.
Good luck

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Hi Zoe

I know it is all very overwhelming and scary especially with all the tests and scans etc. These are all necessary for the Haematologist to get all the information to get to a diagnosis. I would agree with Erica and say to use this forum for support. I think until you get a definitive diagnosis your head will be all over the place. I know how difficult it will be for you for the next couple of weeks. I really feel for you. Please let us know how you go on.
Take care
Yvonne x

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Thank you for the reply :slight_smile: I’ll be sure to update once I’ve had my results

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Hi Nirroc

Thank you for your reply, I’ve found this very helpful.

It’s good to hear you’re now in remission. I can only imagine what you have been through from your initial diagnosis to relapse to remission again.

Yes google is my worst enemy. I have been keeping off it as I did search a lot at first thinking surely they have this wrong. I’m only 31. I guess I’ll find out when I’m back at the end of month and if it’s the news I’ve been dreading your words have really encouraged me in regards to the two women who have had 12 years of remission :slight_smile:

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Thank you Yvonne, I appreciate you replying to me. Everything just seems a blur at the moment.

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I would agree with Nirroc and not use Google. It is very confusing and does not help you at this difficult time. I agree that this forum and Myeloma UK are the most reliable. I have Smouldering Myeloma which is early stage of Myeloma and so I haven’t started any treatment yet . I am well looked after by the hospital and am regularly monitored with blood tests and scans and I know as soon as anything happens then I will start treatment. If you do have Myeloma there are lots of new treatments coming through which is encouraging to hear. I do know how you feel.
Take care
Yvonne x

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Thanks Yvonne, I’m tending to spend my time between this and myeloma UK and over reading things just so I feel more prepared when I see the haematologist next.

If you don’t mind me asking, how was the smouldering myeloma picked up? Did you have any symptoms or none at all? It’s good that they keep a closer eye on you. Do you have bloods etc done regularly to monitor it?

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I saw my GP back in 2014 with pains in my arms and thighs - like growing pains. He did a range of blood tests which included Immunoglobulins. He phoned me the next day to say that the Immunoglobulins had come back abnormal saying I had Paraproteins. I was referred on a 2 week referral for suspected Myeloma. The Haematologist did a range of tests including a bone marrow biopsy which showed I had a precursor to Myeloma called MGUS. I had regular blood tests every 3-6 months and following problems with aching arms and legs again I had another bone marrow biopsy which showed that my bone marrow now has 10-20% of Myeloma which meant I now have Smouldering Myeloma as I have none of the symptoms such as anaemia, kidney problems or bone lesions. I am having blood tests every 2-3 months but if I have any concerns I can ring Myeloma Nurses at hospital. I have come to terms with it but I do still have wobbly days when I feel overwhelmed but I can’t do anything about it. Please feel free to ask me anything and if I can help I will. Everyone on this forum is there to support and help.

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Sounds like your GP was very much on the ball with your blood results and getting you referred and monitored.

You’ve all already been so very helpful, it really means a lot and I do feel a bit bad posting when I haven’t had a diagnosis as you are all going through your own personal journeys with myeloma.

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@Zo31 Zoe please don’t feel bad posting on here! We’re really glad you’ve reached out to others for support so please feel free to continue to do so, this forum is such a friendly and supportive space. Feel free to get in touch with us on the support line (phone or email) if there’s any information or support we can offer you.

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Hi, don’t you worry about posting before diagnosis, we and the free Bloodwise support line are still here to support you as Alice says, please do keep posting how you are and your thoughts and feelings.

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Thank you, you’re all so welcoming :slight_smile:

I’m not so bad. I thought I was quite a strong person but this keeps playing on my mind and the what ifs and I hope they’ve got it wrong.

I woke up with awful sweats in the middle of the night last night & I couldn’t get back to sleep. I feel like something is happening inside my body but can’t explain it.

I have my mri tomorrow then back for full results the 27th. I just have a feeling next week is going to drag.

I have also decided that if I get the all clear I’d like to become a donor if that’s the right word for it to help other people.

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Hi, I think your thoughts and emotions seem so natural and I think the waiting game is the worst possible time. I am sure being a strong person is a plus but the bonus of this site is you can share your fears, thoughts and feelings that are whizzing around inside you, I know it so well.
Don’t forget that the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. Please keep posting.

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Hi Zoe, I just wanted to see how you are doing during this difficult wait, I can only imagine how difficult it may be for you. We’re here if you need to talk or share.

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Hi dawn

I really appreciate you checking in on me :slight_smile:

It’s been hard, a week today and I’m back for my results. My GP has tested my blood to
Rule other things such as lupus etc out and they’ve all come back fine. So now just need to see the outcome of these
Abnormal light chains and beta 2 microglobulin and the further x rays and mri the haematologist arranged.

Hope you’re well this sunny day.

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Hi Zoe, thanks for the update, the test go on, That waiting game must be horrible for you. Please keep updating us how you are thinking and feeling, we are here to support you.

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Nice to hear from you Zoe :slight_smile: I hope you don’t have too long a wait for the rest of your results. How are you feeling?

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