[noeyedeerParticipant]

I completely agree with Mark, my husband is 21 months post sct and is shielding. I work p/time and decided to shield with him, I used annual leave for the first 2 weeks of lockdown and have been thankfully furloughed since. Not sure what I’ll do when furlough ends, if it’s still recommended to shield – which I can’t see happening in the foreseeable future. Stay safe all.

[noeyedeerParticipant]

Hello Patricia,
My husband was diagnosed with MGUS 6 years ago, his paraprotein crept up so he finally started VTD in March 2018, with plateau after 4 cycles, had stem cell transplant in August, now back to the gym. He had no symptoms when MGUS, eventually scan found a couple of small lesions so that’s when decision to treat was taken. He is 68 years old. He decided that if he didn’t take the option of SCT, he would always think what if I had, would I have a long remission period?
The treatment is “doable”, he was only in hospital for 10 days and has had no infection issues. He won’t know how well the sct went until day 100 post sct, which is early December.
Any questions welcome,he has preferred me to do the research on MM, just crossing each bridge as it comes.
All the best
Julie

[noeyedeerParticipant]

Hi Linda,

My husband had MGUS, an earlier stage to smouldering, for 6 years, then became classed as smouldering for 2 years before now needing to begin treatment 2 months ago. He had/has no symptoms other than finding paraprotein in blood. The watch and wait of this condition can be hard to live with, try to live as normally as possible, as your consultant has said. It is a very individual disease and it may be a longtime before you need treatment. Hope you can get peace of mind and enjoy life.

Julie

[noeyedeerParticipant]

Hello Rachel,

Sorry to hear you have had this news. Try not to panic, what you are feeling and the range of emotions are completely understandable and until you have more information your mind will run wild.

My husband has diagnosis of MGUS for 5 years now with paraprotein levels slowly rising from 16 to now 28. He is being monitored closely with bloods every 3months, he has no symptoms and doesn’t require treatment at this stage.

Take a few deep breaths and when you feel able, read about MGUS, so you can have some understanding of what your test results mean, knowledge is power. Then you will feel able to write down questions for when you see health professionals.

It will seem like a long weekend until you can get to see your GP, keep busy and look after yourself.

Julie

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