[yvonneseParticipant]

Hi Lacey,

 

Yes indeed MGUS is the better outcome.Thats exactly what the Haematologist said when my diagnosis came back in 2014. However now I know that although I have asymptomatic myeloma I need to stay at this stage as long as possible. It just messes with my head sometimes but it is not at the forefront of my mind now as it was a few months ago.  I don’t read stuff about it anymore as I feel I know all I need to at this moment in time. Everyone deals with things differently.

I have good support from my husband Steve and also my 2 sons & daughters-in-law.

Onward and upwards

Yvonne x

[yvonneseParticipant]

Hi Lacey,

Many thanks for your kind comments.

I remember well how scary it was to be having all the different tests and then waiting for the results. It’s very difficult to think about anything else and carry on doing normal everyday things so I really do sympathize with you and your husband. In a way you will feel better once you know and then you know what you are dealing with. I thought I would have MGUS forever and was not at all prepared for being told it had progressed to Smouldering Myeloma. Then my Haematologist said that it will progress and become active at some point but they don’t know when…..could be months or years!! I just have to go with it now and I am being monitored more often and I have 2 Myeloma nurses who are available to speak to if I have any concerns between appointments. They have told me there are new treatments coming through with some good results – although it is not as yet curable.

It is a worrying time for both of you. Please let me know how he goes on.

Take care

Yvonne xx

[yvonneseParticipant]

Hi Barry,

My first consultation with Myeloma nurse since my diagnosis went well. My bloods have remained stable and my paraproteins unchanged so that was a relief. Have to go back in 3 months. I am grateful that I am being monitored so vigilantly.

Take care

Regards

Yvonne

[yvonneseParticipant]

Hi Barry,

Many thanks for your positive comments. It’s now 3 months since I was diagnosed and I am definitely having days where it’s not at the forefront of my mind. I think I am dealing with it a little better now. As it happens I had my latest blood tests last week and am due back at the hospital this afternoon for the results so I am a little nervous but hopefully everything is still stable.

0nce again thanks

Regards

Yvonne

[yvonneseParticipant]

Hi Mike

Thank you for your message and words of advice. I am still trying to come to terms with the diagnosis of smouldering myeloma. I had perhaps got a little blasé when I was Mgus as I had read that people can live all their lives with Mgus without progression and I assumed that would be me. So I have to re-adjust my mindset I suppose and that will take time.

In the last couple of days I’ve felt like I’m not handling it well . It’s the mental side of it at the moment as I am generally well and my blood tests were stable really. I will get there.

Regards

Yvonne

[yvonneseParticipant]

Hi Rachel,

My bone marrow biopsies have showed that I have now progressed from MGUS to smouldering myeloma. I really did not expect that.I thought I would be MGUS forever. My consultant says that because I am a younger patient ( I’m 56 ) it will be very likely that I will need treatment at some point.

I don’t quite know how I feel at the moment. Feel a bit numb if I’m honest. The consultant says that I will be going back to 3 monthly blood tests and hospital visits from now on.

It’s a strange thing being told you have cancer but not starting treatment as not anaemic, bones & kidneys stable which is good. She did say that I need to have pneumonia jab as well as my flu jab.

Sorry….I am gabbling on.

Regards

Yvonne x

[yvonneseParticipant]

Hi Rachel

I usually have a flu jab although I always had one anyway as I worked for NHS so was advised to have one.

I am a little apprehensive about my hospital appointment this afternoon I must admit but at least my consultant is being very thorough by getting me to have all the tests again. I am trying to stay positive that the bone pain is arthritis.

Yvonne x

• This reply was modified 7 years, 2 months ago by  yvonnese.

[yvonneseParticipant]

I was diagnosed with MGUS over 3 years ago. My paraprotein level fluctuates between 11 and 13 . In last couple of months I have been experiencing awful bone pain in my back/pelvis and arms and legs and dreadful night sweats so my consultant has got me to have all the tests again…. bloods, PET scan & bone marrow biopsies. I am due to see her on the 26th September. I just put the pains down to arthritis as that did show up in various places when had skeletal survey done in past. Fingers crossed that all is still ok. I think if they had found anything they would have called me sooner – no news is good news!

[yvonneseParticipant]

Hi Rachel,

Many thanks for your welcome.

I haven’t logged in for some time since diagnosed with MGUS 3 years ago. I have sort of just got on with things as it were and had my blood tests every 3 to 4 months. I am still followed up by the Myeloma nurses who let me know my results by phone but can contact them if I have any worries.

I do have alot of pain in my back/pelvis – even where I had the bone marrow biopsy is still tender. Also have pains in my thigh bones and arms especially at night. I told the nurses but they say most likely arthritis as my calcium levels all okay. It’s hard not to worry when you get pain as don’t want to appear paranoid. I’ve not had any x-rays or MRI for couple of years though but suppose they know best.

Regards

Yvonne

 

[yvonneseParticipant]

I was diagnosed with MGUS just over 3 years ago after seeing my GP for what felt like “growing pains” in my arms and legs. I was referred on 2week wait and after many tests including bone marrow biopsy to have IgA Lambda. My level when referred was 11 and this increased to 13 by time I saw Haematology. Consultant. I have had regular monitoring by hospital and gp. My level fluctuates between 11 & 13 to date. My most recent IgG levels were 6 and IgM 0.4. These are quite low. Is this significant in any way and have any bearing on if there is progression? Any advice would be appreciated. Many thanks.

[yvonneseParticipant]

Hi Sue,

What a lovely picture. It must be so difficult for you and my heart goes out to you. You must miss him so much. It sounds like he really put up a fight against MM. I hope you have had good support from family & friends. The Myeloma nurse told me this was the best UK site to go to for info and support. I just joined the Forum earlier this year. Sometimes I just didn’t know where to turn. So many questions and queries. MM is not something that people generally can discuss with me ….for instance my colleagues at work obviously know my situation but know absolutely nothing about this type of cancer in comparison to other cancers such as breast, bowel for which there is more publicity. I try to just get on with things but sometimes my mind gets caught up with “what ifs”.

A day at a time Sue….that’s all either of us can do.

Love

Yvonne xx

[yvonneseParticipant]

Dear Sue,

I really feel for you. It is so sad to lose your soul mate like that. I am really grateful to the NHS for the care and monitoring it is giving me. I had never heard of Myeloma and I have worked in a gp surgery for almost 17 years. My gp had to tell me what it was when he rang me re my abnormal blood results. The doctors I work for said having Mgus was a good outcome purely because I will be monitored for life regardless. Its just the mental and emotional stress that goes with it. It can be quite isolating in some ways. I appreciate your comments and support and wish I could help you. Please please stay in touch if ever you need to talk . Your grief is still raw. Bless you for helping me.

Sending love

Yvonne xx

[yvonneseParticipant]

Hi Sue

So sorry for you on loss of your husband. From the symptoms you’ve described he may well have had Mgus. I think all Myelomastarts with an Mgus but everyone with Mgus doesn’t always get Myeloma. That’s how my Haematologist described it to me. Its a 2-edged sword knowing I have Mgus. Its too in that I am being monitored regularly with blood tests every 3 months and if anything changes treatment can be started but on the other hand there is that dread every 3 months when I go to hospital for my results. Its never going to go away. I can see where you’re coming from re your husband not knowing until he had diagnosis of Myeloma. My Mgus was just discovered by my gp when I went to see him because of aching arms& legs and pins and needles in hands & feet. I am grateful that I am being monitored and all I can hope is that it doesn’t progress to MM.

Sending love and hugs

Take care

Yvonne xx

[yvonneseParticipant]

Blood tests all stable. Paraprotein stayed same as last time. All good news. I thought that I would be discharged as that is what normally happens after a year of stable blood tests but Haematologist says she wants to keep an eye on me still so back at beginning of August. Could have been worse but at least can go on my holiday on Monday and really relax…….thanks to all of you that have kept fingers and everything crossed for me Xx

[yvonneseParticipant]

Hi C

Many thanks for your reply. Its just that time again when blood tests results are imminent. It will be a year since I was first diagnosed as mgus / borderline Myeloma. If I’m stable still then I think I am passed to the Myeloma Nurse who will monitor me. I have had some bone pain but my MRI was all clear. I have noticed in the past 8months that I have had various infections and illnesses that I seem to have problems shaking off. I had a series of bad uti’s and shingles. I had a bad cold/cough from end Nov through to mid January. I have chest infection/bronchitis at moment and on antibiotics. Its like my immune system is not working as well as it normally does. Still it’ll all come out in the wash as they say.

Whatever will be will be.

Fingers and toes crossed.

Love

Yvonne xx

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