I’ve just been diagnosed with Mgus…
I am 50…I had been having tests for headaches, numbness in hands and feet, tired, and back & hip pain.
I had a diagnosis through the post a few days ago, with a small info page.
But haven’t been able to speak to my doctor yet…until 10th June!! I’m worried and frustrated and I don’t know what to expect.
My brother (61) has leukaemia!
I can’t talk to my GP for another 10days, they have booked me in for a phone consultation. I don’t want to worry my family right now, as my Mum has recently passed away with bowel cancer….we only had her funeral 3 weeks ago, we are all heartbroken. So I certainly don’t want to cause any more grief.
Any advice would be greatly appreciated. Many Thanks
Hi @Beki and welcome to the forum you have come to the right place,you have so much going on right now. I am sorry to hear that your Mum has recently died and that your brother has leukaemia and now you have an MGUS diagnosis in the middle of all your loss and grief.Can I advise you to call the surgery again and explain all your symptoms as an emergency consult rather than wait 10 days ,I dont know how your system works but where did the letter come from your GP or have you already seen a Haematologist?
@LauranBloodCancerUK would be able to help you talk your worries through or give the BCUK helpline a call,its better to talk than hold it all in especially as you dont feel you can talk with your family just now.
Was the MGUS leaflet from BCUK ?
It all depends on the level of the paraprotein in your blood what the next step will be .If you know this talking on the helpline could alieviate your worries or help you decide for an earlier appointment.Usually with MGUS you have regular blood tests to monitor you ,its called Watch and Wait.I have MGUS IgG kappa and am on watch and wait .However if you have other symptoms as you have described its best to get a face to face with your GP.There are others on here with MGUS a mixture of different levels ,please keep posting and look after yourself ,all your feelings are perfectly understandable.
Morning @Beki and welcome to the forum.
Gosh - that’s so much to deal with and I completely understand the anxiety around
waiting to speak to a doctor. Waiting is often the worst part of lots of the members journeys.
Have you been referred to a consultant or is it your GP who is currently involved?
@Bannanacake gives brilliant advice. I would really advise not bottling things up. It’s entirely your decision on when you share this information with others, but in the meantime use the support line to talk things through. They will be especially helpful in helping you prepare for your GP appointment and any questions you may need to ask.
Also, we are here for you. It’s a scary time and made harder by everything else going on as well. We’ve all been there at diagnosis and really do understand why you are going through so please use this forum for support.
Sending lots of special wishes X
Oh @Beki I am so, so glad that you have found us so quickly and I just cannot imagine how you are feeling and thinking right now.
You have received life shattering news and have nobody for support apart from us. You are now part of this forum family and the advantage of us is that it does not matter what our diagnosis is we often really understand what you are thinking, feeling and the practicalities you have.
I am so sorry to hear that your mum has so recently passed away of bowel and cancer and that your brother has leukaemia.
You must feel so sad and scared.
I was diagnosed with another blood cancer 18 yrs ago and over the years I have learnt to be ‘pleasantly assertive’ when speaking to medical people.
I also do not think that sometimes medical people realise the effect of their words and actions have on their patients.
I find the best time to ring or go into my surgery is literally as they open. Perhaps you might stress how afraid and anxious you are and that you have been referred to your GP in the letter you have received.
If you have to wait to the 10th June it will just give you a bit of time to get your head round your so natural shock.
It will also give you some time to write down your thoughts, fears questions and practicalities that you want to talk through with your GP, your appointment is a two way process.
What we do find is that waiting is the worst feeling and seems never-ending.
@Bannanacake and @Nichola75 have given you good advice.
It is so difficult for you as you do not feel you want to share it with your family at this point so please keep sharing on our forum.
The advice I would give you is to really look after yourself and be kind to yourself, all your thoughts and feelings are so natural.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
Thankyou so very much for your replies…it’s lovely to have some support from you all
The letter came from the consultant haematologist….telling me they had found a “serum lgG lambda para protein measuring 1g/l” and the “likelihood is that I have Mgus and simply need monitoring, with primary care clinical review”
They included a 7 page patient info pack on Mgus…I received this Thursday in the post and been worrying ever since…rang GP surgery, explained I wanted to talk about the news I’d received, but they have half their staff off with sickness at the mo
I think tomorrow I will ring the actual haematology department at the hospital rather than trying my GP again.
It’s just so shocking to receive this kind of news through the post, when originally I had gone to GP with headaches, bad back/hips and tingly hands & feet. I thought I just had a trapped sciatic nerve or something!!
Is 1/gl a lot?
What is Lambda?
So many questions xx
Hi @Beki I will copy this to @LauranBloodCancerUK as I cannot help with your medical queries.
Thanks for your extra info.
Yes, I think that is a good idea to ring your haematology department and I hope that you might have a Clinical Nurse Specialist who might be a useful contact for you.
I expect that your letter might be to your GP and also to you, but using all that medical jargon and info is enough to scare anyone.
Take lots of care of yourself and please let us know how you get on.
Hi Beki , so sorry to hear about your mum and brother and your mgus diagnosis. Its so hard not to worry especially with everything. If it’s any help i was diagnosed with mgus 4 years ago aged 49. Not the same type as you but igm kappa with a paraprotein level of 3.8 g/l.I found out after being diagnosed with peripheral neuropathy. I’m on watch and wait. I’d try not to Google, which is hard not too, i know, as i have. Mgus is not cancer but you will be monitored for life . The lovely people here have very good helpful advice. I wish you well and if it helps my levels have not changed in 4 years and im told theres only 1% chance of each year of progression. Take care x
Hi @Dottydogwalker. Great to hear from you. It’s so helpful when you can share your experiences with others. I think that’s the value of the forum isn’t it. How have you been keeping?
Dear @Beki, thank you for reaching out to the Forum and we hope that we can be of some help to you. It sounds like you have had an incredibly tough time so I can imagine that you are processing so much just now.
We are more than happy to support you here and as our brilliant community members have said we do have a phoneline you can call to talk things through if that would help? How to contact Blood Cancer UK | Blood Cancer UK. I also have our resources at Blood Cancer UK on MGUS here Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK and also a MGUS diary that our colleagues at Myeloma UK produce which can really understand the monitoring process: https://www.myeloma.org.uk/wp-content/uploads/2022/01/Myeloma-UK-MGUS-Diary.pdf. it is important to remember that MGUS is not a malignancy and that monitoring will allow you to feel reasssured that any signs or symptoms will be considered. Often MGUS patients are monitored by their GP only but your GP will have access to Haematology advice if needed.
We can talk to you after your appointment if that helps and hopefully these resources will make you feel prepared for the 10th.
Please do keep in touch with us and take care,
Hi @Dottydogwalker great to hear from you again, I look forward to hearing from you again.
Look after yourself
I was diagnosed with MGUS in 2014 when I was 54. Similar to you I had bone aches but in my arms & legs, was very tired and had numbness in hands & feet. I was put on watch & wait and seen by Haematologist every 3 months. It was overwhelming at first and I was stable until 2017 when I saw my GP as I just didn’t feel right. He contacted the Haematologist who booked me in for another CT/pet scan & bone marrow biopsy. This came back saying I had progressed to Asymptomatic Myeloma. I am still on watch & wait. The have said to me all along "you don’t have any symptoms with mgus or Smouldering Myeloma " but if I hadn’t had symptoms I wouldn’t have seen the GP and I would be none the wiser. My original paraprotein result was 10 and my Lambda light chains were high… My PPs were stable until a year ago and have slowly risen to 22 . I am still on watch & wait .When I was told I had progressed to Asymptomatic Myeloma I was given a couple of leaflets & told to ring if had any questions. I too was in shock. You have had such a lot to deal with. I hope you get to speak to someone who can help with your concerns Beki… It is reassuring if you are being monitored regularly as should anything change it will be picked up. I’m not going to say don’t worry but don’t let it take over. Easier said than done I know. Take care of yourself Beki…xx
Great to hear from you @Yvonne, how are you feeling and doing now?
Look after yourself
Lovely to hear from you. I am not as well as I was but still getting on with things … as we do. I feel things are changing re the Myeloma. I have bone pain and am more tired . I have a kidney infection at the moment too so on antibiotics. My blood tests are now every 8 weeks in case anything changes so treatment can start. I have managed to avoid COVID thankfully but I am still being careful and avoid busy areas and of course still wear masks when in shops… I do have days where I feel down - as we all do. I keep a lot of how I feel to myself which I suppose isn’t always good. My poor hubby is my sounding board but he’s fine with that…lol. Our grandson Fox is 2 years old now and we have him on a Monday which is a joy…but exhausting. It’s worth it though. We have a great relationship as we have been in the “childcare bubble” with him since he was born.
Thank you for your message Erica. I hope you are okay…
Take care xxxx
@Yvonne a kidney infection is rotten and I know really drags me down.
Yes, we all have down days and as someone once said that if we did not have down days we would not appreciate the better days.
It really resonated with me when you say that we just get on with things as we do and I also keep my feelings to myself, but because of my upbringing and as my hubby cannot take feelings.
I bet Fox is a joy and handful at the same time.
Take care and be kind to yourself x
Hi I think you should have a look at the Myeloma UK website they have lots of information on your condition, good luck.
Hi @Trev and welcome to the forum.Im glad you have posted because its great to have support from others on here and we arecall at different levels with our diagnoses.
Yes ,Myeloma UK have a very informative site and Ive found their info and helpline along with BCUK really supportive and useful helping me to understand MGUS.
I hope that you are keeping well yourself .
Hi @Trev great that you have posted and yes, the Myeloma UK website is good, we are lucky to have it and the Blood Cancer UK services as well.
I would be interested to hear more about you and how you are doing.
Look after yourself