[stevecooperParticipant]

Evening Forum

So, I’m still coming to terms with my recent diagnosis of MGUS at 35yrs of age and this is my first post/reach out. It comes on the back of the worst xmas/new years ever!

I’m an ex military man and never been ill in my life bar the odd cold. Always thought I was untouchable… Obviously not the case. Just before xmas I was struck down with appendicitis and whilst in hospital doing the routine blood tests etc I had all the doctors puzzled as my blood results we’re all over the place and they said it wasn’t the infection. In stepped the haematologist who took lots of blood over the course of a couple of months and in March I was recovering from my op to remove my appendix (Delayed as it couldn’t be removed at the time due to infection) dropped the bombshell on me that I had MGUS. Initial thoughts are that my results fall within a mid range bracket however the haematologist didn’t exactly paint the greatest future for me which has left me with a million questions and some genuine concerns however I think I’ve taken it all very well which hasn’t been the case for my family or girlfriend. Asked if there was “A chance” I could have a normal life the doctor said “Very unlikely due to my age and current blood work”. This was fabulous to hear and triggered my mum, who was present, to fall to bits.

I’m about to have my next blood test in June and then meet the haematologist a week later to discuss the results.

I’m learning more and more weekly from youtube and this site but I’d really appreciate help with what questions I should ask from people in “The Know”.

Also I’d be more than happy to chat with anyone with MGUS but especially any younger people diagnosed, as I think it would help to be in touch with others who are on the what I hope will be a very long trip!

Many Thanks

Steve

[avantrompParticipant]

Hello Steve
You might like to read this thread that I came across on Myeloma Beacon.
http://www.myelomabeacon.com/forum/risk-of-progression-with-mgus-new-czech-study-t8714.html
All the best to you. Try not to let the diagnosis get you down. Even if,one day, it does become MM, research is advancing at a prodigious rate.
Annette

[beetlejuice54321Participant]

Hello Steve

sorry to hear you about your diagnosis. I was encouraged to share my experiences with you to try and alleviate some stress from your life.

i was diagnosed with myeloma aged 33 four years ago. Like you I had a mgus amount of myeloma in my bone marrow but a very high para protein measure, because the myeloma had formed an extramedullary plasmacytoma (ie the myeloma had come out of the bone marrow, something it should not do, and if it does the doctors call it more aggressive disease, largely because if they can’t make it go away you do not  t live as long). An extramedullary plasmacytoma is a lump of bad cells, similar to other non blood cancers, and in my case was in my lymph nodes.

After two two cycles of dt-pace treatment and a stem cell transplant and now over 20 cycles of maintenance velcade, and radiotherapy on the lymph nodes I’m in complete remission and have been for 2.5 years. I still take chemo every two weeks to keep me safe.

Since I was diagnosed, I’ve gotten married and am now having my first baby. I feel very optimistic for my future and live my life as normally as I can. Because of the chemo, and thankfully for having an understanding employer, I work just short of a full time contract (not 100%) because of fatigue caused by chemo and hospital visits. I genuinely feel optimistic for my future and do jot let the myeloma affect how I plan my future.

You should also console yourself with the fact that not all mgus patients develop full myeloma and you can go on for years treatment free. The low quantity of myeloma in my bone marrow at diagnosis is one of the main reasons I feel optimistic, as the plasmacytoma is curable, even if the myeloma in the bone marrow probably isn’t, and the fact that there isn’t much in there makes me feel I can go on for a long time hopefully. Plus new treatments are being developed all the time.

i wish you the best of the luck for the future and I hope everything goes well for you.

[stevecooperParticipant]

Thank you very much for both of your posts.

beetlejuice54321 – I wish you all the best buddie and congrats with all you’ve achieved!

Annette, I’ll be asking what my scores are based on your post in a couple of weeks time so thanks again. Great help

[graham-cParticipant]

At age 64 I have been diagnosed with MGUS for over 5 years. A diagnosis of MGUS isn’t a death sentence or a reason for undue pessimism. As much as I’d prefer to be without it, I do get regular blood tests taken which would highlight any unusual results. For me it is every four months as I accept that I am at low risk. Perhaps next time it will flare into active myeloma but no one can live their lives governed by what may happen.

Prior to becoming MGUS I lost a kidney to kidney cancer (unrelated to MGUS) and you need to avoid thinking all symptoms you have must be down to MGUS or myeloma. Strictly we shouldn’t have any symptoms at this stage, though I do have a reporting form from the hospital in case I do. After five years of steady results I have lost any obsessions I may have had initially. I have my blood test and they phone me the figures and I note them down. I have every figure since I began. I don’t actually visit the hospital which is good for both of us. The results I get act as my ‘comfort blanket’.

In younger days I was very active in high impact sports and my back is a wreck, so I couldn’t possibly put any discomfort or symptoms in my back down to myeloma. No one can foresee what lies in the future of any MGUS person and I wouldn’t want treatment until it is necessary.

I am in the ideal situation and I trust that you will be equally fortunate. I actually look forward to having the blood tests nowadays. At one stage I thought they were going to discharge me and then I had a ‘blip’ late last year, which turned out to be nothing.

[didtobuyParticipant]

I was 37 18 yrs ago and diagnosed with MGUS one day after my younger daughters first birthday party. I thought the worst and was devastated.  Here I am so many years later, and still working hard and happy to see so many advances lately for MM.

I  would recommend that you remain very positive and include fitness in your daily routine.

 

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