Hi
Two days before Christmas I get a letter after a 6 month delay in letter being sent from consultant following bloods say i have IgA 0.2 and also IgG lambda monoclonal band and light chain but no levels given i went to Gp to get a understanding about this but was told i also have high level blood in stool sample so now on the two week referral for that . I was told by Gp that i needed to do a Urine protein electrophoresis test and dependant on result as to whether i get referred to hematology or have yearly blood tests for the IgG.
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Hi @Eve64 a great big welcome and you must be so confused, scared, anxious, worried etc. etc.
The waiting for clarification, tests, test results, appointments, answers, the way forward, treatments etc is never ending. and horrible.
Please let us know how you get on.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
Take lots of care of yourself and be kind to yourself
Hi @Eve64 and a really big welcome. Waiting is often the hardest part of our journeys. Please keep us updated on how things are 
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Hello@Eve64 ,welcome to the forum and as @Erica and @Nichola75 have said,the waiting is horrible and the hardest part.That is good that you are being fast tracked on the result of your FIT test .
I have MGUS IgG kappa ,Kappa light chain,and im on 12 week blood tests.
The urine protein test will be useful to know your level and if you will be reffered.
My GP liases with the Haematologist if there are any changes .It is a matter of “watch and wait” but in the meantime its important to mention any new changes.
BCUK has info on MGUS and the helpline is always useful to talk over your concerns with the Nurses.
Have booklets on MGUS and an MGUS diary,also a support line.
I ask for my results so I know where I am and It would help you to get an understanding and feel a bit more in control but its a personal thing if you want to do it.
All the best and as @Nichola says please let us know how you get on.
Bannanacake
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Thank you for your replys your right the wait is the worst. Bannanacake i am very much someone that needs the facts i have asked for the levels but have hit a dead wall both from Gp and hospital where the blood was done , i at the moment feel in limbo . I also want control over things but just so i have a better understanding. Thank you again and sending you best wishes.
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Erica, " you must be scared and anxious and confused" you said, they didn’t suggest they are, probably are now!!
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Very true @Andrew3, good point.
No I am not scared but anxious and confused are both true , i tend not to worry about things until confirmed i like the known not the unknown but i guess this is true for most people.
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Hi@Eve64.The GP admin staff e mail me my blood results through,you have a right to ask and having them would give you a better understanding.Hope they do for you.
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Hi @Eve64 sorry to have put words in your mouth, they were how I felt, apologies.
Take care
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Morning
Erica please do not worry you didn’t put words in my mouth you read my post and understood how I feel . Thank you for volunteering as a support worker and giving your time to be there for others .
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Hello @Erica and @Eve64, I echo those words. Thank you Erica for all the support you give to us. Just to feel heard and understood means so much, as well as being able to share our own stories and experiences is invaluable. We keep going into a new year. Together we are stronger. Warm wishes. Willow X
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I just popped into my surgery and asked for a copy of my blood results, you have every right to them. As long as they were ordered by your GP they will have them on your records. You can also sign up for online access. I am under the Haemotologist for the same thing, all ok at the moment. So pleased I joined the forum, such wonderful support and a font of knowledge, I’m sure you will gain a lot from this group.
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Hi@Hussyhemlock,I am glad that you are all OK at the moment.The MGUS diary is very useful .My next tests end January.
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Thank you for your reply and glad you’re doing ok at the moment. I have asked for IgG level but had no joy it was a test carried out by a hospital consultant, my letter went missing for 6 months so I feel in limbo and frustrated . I also had a Bence jones test and awaiting results as well as a FIT test at Gp surgery and have been told I have high level blood in my stools so going in for investigation.
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Oh I do hope everything is ok, my next one is February then visit the haematologist in March. It’s the waiting between tests, but I feel pretty chilled now, the haematologist was quite positive and seems to think if I get through 5, years then the chances of it going to Myeloma is less, so fingers crossed. I love this group it’s so supportive. I’m crossing my fingers for you x
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Oh goodness you are going through it. I have to say I have great trust in my haematologist, I think you can ask the path lab to give you copies of your blood results but obviously ask first. I think it’s a case of one step at a time, honestly I thought it was the end when I got told I had MGUS, how stupid was I? I feel lucky that I’m watched and tested, if anything were to happen I would have treatment without going through all of the tests and referral system. I know you will have lots of support on this group and there are such knowledgeable people. Hope things get better for you.
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Hi
Well after a lot of chasing I have finally been told I have Mgus feeling abit separated but I guess this is normal. Tomorrow I have my bowel cancer screening test colonoscopy so I’m nervous as to that result . Thank you all for your reply’s and support. Keep well x
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Hi @Eve64 I am impressed that you chased (not that you had to chase) and have got your diagnosis.
I think it is natural to feel separated, I felt I was the only person in the world when I got my diagnosis, I felt in a bubble with the world going on around me.
You are part of the forum family and so please do use us. I find it very supportive.
I hope your bowel cancer screening goes as smoothly as possible tomorrow., please do report back.
Be ever so kind to yourself, I find all medical appointments anxiety making, stressful and exhausting
Hi Erica
Thank you for you kind words, I’m glad I have somewhere to vent my feelings with others that understand cos it was a Surreal drive home . Thank you again for welcoming me
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