Introducing myself - MGUS

Hi Im Lynn ,
I have recently been diagnosed with MGUS .
I just wanted to say Hi.

10 Likes

Hi @Lynn1 and welcome to the forum.
I’m really glad you found the forum. I know there are many people on here sharing the same diagnosis as yourself (I have a different blood cancer) who will be able to share their experiences.
What I do know is that all of us remember the whirlwind of thoughts and emotions at the time of diagnosis.
I don’t want to bombard you with lots of questions, just want to say hi and see how you are doing? :blush:

4 Likes

Hi @Lynn1 a great big welcome and great that you have found us.
I remember my diagnosis so well and the whirlwind of shock, anxiety and emotions.
A new medical language.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888 and we are all here for you on our forum.
I look forward to hearing more from you and really look after yourself

2 Likes

Hi @Lynn1 ,
Sorry to hear your diagnosis. I was also told I had MGUS last year and now on watch and wait with tests every three months.
How are you doing? I know my experience was a whirlwind of emotions , but of course everyone’s experience is unique. I found this forum a great source of support and info…and a good place for understanding from others.
I hope you are ok?
Sending a hug x

3 Likes

Hi Ally , thank you .
I am also on the three month blood testbwatch.
I have mixed emotions about it.
Hugs to you too

3 Likes

Hi Lynn…a tough time for you.

Rest assured though in time things will be a little easier to get your head around things…some great advice on this Forum

I wish you all the best going forward.

Lee

3 Likes

Hello Lynn1,welcome to the forum ,
I am saying hello as I have a diagnosis of MGUS IgG Kappa .

I can remember what it is like in those first few months and feeling supported from the forum .
Its still great to have that support.

I found it really useful speaking to the Nurses on the BCUK helpline and also getting information from

They sent me an MGUS diary which I find useful to record my 4 month blood tests if that is what you want to do.
There is lots of other info about MGUS .
So I am wishing you well with everything
:blush:

4 Likes

Hi @Lynn1
Today, I had my latest blood results and thought I would share with you. I had a face to face appointment with a haemotologist as after my diagnosis over the phone in November 2022, I had many questions. I was inspired by the lovely @Erica and @Bannanacake to be ‘pleasantly forceful’ and asked for a face to face to ask all my questions.
My bloods have stayed the same over the last three months (thank goodness) but the haemotologist seemed genuinely surprised about why I was so anxious and even laughed at some of my questions. However, the part I wanted to share with you is that I also saw a lovely specialist nurse at the research centre at my local hospital, as I have signed up for the OxPLoreD research project. To cut a long story short she told me that many , many people have MGUS, many don’t even know, that very few people with MGUS progress and that the treatments nowadays are so much better than even a few years ago. She answered all my questions with genuine care and I have to say that I felt very reassured. I have found the last few months very challenging but talking through with her today has helped to reduce some of the fear I felt when diagnosed. I hope that sharing this may help you too.
Look after yourself.

6 Likes

Hi @AllyBally I am so glad that your specialist nurse was so helpful, she sounds absolutely lovely and caring.
Yes, look after yourself too.

1 Like

Hi Lynn
As I’ve related to in other chats MGUS was maybe not so much an emotional issue to me having had another Blood Cancer (BC) back in 1984.MGUS diagnosed over 10 years ago with watch and wait.

For some it’s a little demon on the shoulder for others a big load. We all are different in our diagnosis, minds and bodies and we must respect that.
My MGUS defined as Waldenstroms Macroglobulinemia about a year ago, bio-targeted treatment and now in maintenance.

Wishing you a long ‘watch and wait’ and be minded treatments for so many BC’s are progressing everyday. There are some medics out there who think we are all instant Haemotologist’s and go to sleep reading medical journals. IF IN DOUBT ASK.

3 Likes

Thanks @Erica ,
You are always there with warm words for everyone. Thank you again. Xx

…and hi @Iain , yes I can relate to all you say. I find the nurses have more time and more compassion to those of us needing to understand more about our conditions. I’m a control freak so need to know all the details :joy:
Take care all x

2 Likes

Hi Ally…good to hear.

I have come across a few…not many though folk who dont really get how anxious unwell people will feel.

Indd i have actually explained this to a few of them

Some of them only look at it from a Professional ‘work’ kind of view…its there job and there either not interested in the compassion side of things or really dont understand.

That said on the flip side like the lady who explained and talked to you today there are many whondo try and understanding and make it a bit easier for us with Blood Cancer.

I always think its similar to our schooldays…we dont remember to much about the good teachers but remember quite clearly the ones we didnt like.

Glad to here your update Ally

All the best…Lee

1 Like

Thank you everyone xx
For making me feel welcome and sharing your experiences xxx

1 Like

Hi Lee @Leefer ,
Thanks for your reply. I totally understand all you say.
School days were a long time ago now for me :joy::rofl:
I’m a counsellor and spend my working days supporting others through really challenging things. I know the importance of being heard and understood, so maybe I expect too much sometimes? This is why I’m so glad I’m a member on this forum,…cus we all ‘get it’ don’t we?
Hope you’re going ok, take care.

2 Likes

Thanks Ally.

Very true

Doing ok thankyou very much

1 Like

Hi Lynn

Welcome to the forum. I have been a member since July last year following my diagnosis with Chronic lymphocytic leukaemia (CLL). Being newly diagnosed is a surreal and worrying time but you have found the right place to ask questions and share your concerns x

1 Like

Hello @Lynn1
Welcome from me and all the Support Services team, please do either message us on the forum or you can contact us by phone or email Blood cancer information and support by phone and email | Blood Cancer UK.
We have a group of haematology nurses @BloodCancerUK_Nurses that work within the support services team too who can give some clinical input and guidance if needed.
I am sure you will gain excellent peer support here from our amazing community and do let us all know if you need any information around your diagnosis.
Take care
Gemma

3 Likes

Hi @Lynn1 sorry to hear about your diagnosis. I hope that your regular blood tests will never show that it has turned into a cancerous condition.

Take care

Doug

Hi all I’m David
I was given the new I had bone marrow cancer 4 months ago… And I went into it with a positive mindset and attitude.
Your own body reads your moods and energy
So being told I needed to take a drug possible rest of my life I asked myself I have to be strong in mind and body…
I had my 3rd review other day & was given the news my platelets count gone down from 1100 to 480 so yes always think with a positive mindset

3 Likes

Hi @Justme_67uk you certainly have a positive attitude, hopefully you will get some support and information on our forum.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888 and there is also a lot of information on the Blood Cancer UK website.
I look forward to hearing more about you.
Take care of yourself