Hi Paula,
Can I ask what your levels are?
I had Monoclonal gammopathy of unknown significance (MGUS) for 3.5 years with slow rises in M proteins. I started at 9.6 after blood tests for an operation flagged it. I had annual checks and last July they were 12.6 but in January I got a tooth infection that lasted 3 weeks and then in May I thought I had pulled a muscle between my shoulder blades and it then fractured and my MM diagnosis was given. My levels had jumped to 28 in 8 months. This is not to scare you but to make sure you keep an eye out for long lasting infections or unexplained back pain that gets worse. I personally feel they shouldn’t wait for levels to reach 15 as if I had chemo earlier I wouldn’t have had two spinal fractures. My levels are now 5.2 with 3 chemos left before stem cell transplant. I’m doing well but it’s a constant shadow.
I wish you the best but keep an eye out for back pain that gets worse and speak to your consultant if you’re worried.
Best wishes
Dawn
Hello Dawn,
Thank you so much for sharing.
I have been searching so long for someone share story on Monoclonal gammopathy of unknown significance (MGUS) to MM. I have been diagnosed with Monoclonal gammopathy of unknown significance (MGUS) last year.
I have a lot of health issues but apparently I have been told I only have Monoclonal gammopathy of unknown significance (MGUS) which will not have any symptoms in theory so i gave to keep looking for other diagnosis.
Would you like to share if you had any health issues when you were declared Monoclonal gammopathy of unknown significance (MGUS)?
Like fatigue, chronic pain in neck, arms back or anywhere
Any stiffness in morning or numbness in fingers or hands or feet?
Do you know any clinical trial?
I wish you best of luck for your transplant and fastest recovery.
Tx
Swara
Hi @Swara even if others do or do not have similar symptoms to you perhaps you might consider seeing your GP as the symptoms you are describing could be related to all sorts of reasons.
As for clinical trials the Blood Cancer UK support line might be able to assist
What do your medical team suggest as the way forward as they know your whole medical history?
Really look after yourself and please do keep posting
Sorry for the delay.
It’s been quite a time for me with so much treatment.
I had no real symptoms other than the ones I put down to menopause. Sweating after doing very little, suddenly needing afternoon naps.
I didn’t feel unwell.
Hope that helps
Dawn x
Hi Paula! I’ve got the option to go on the RADAR trial too, on the same meds as you, what made you go for the trial instead of the standard? I just don’t know which way to jump, how are you getting on now?
@Olivia how are you and hubby doing? X
@Paula1 hi Paula, just thought I’d check in on how you are doing? I’m at the Christie next week for the cyclophosamide and then the growth hormones, how are you doing on the trial? Are you still being monitored? X
Hello, I’m doing fine thank you, I just go for maintenance every month.
Gosh your at Christie’s now it was 2 years today I had my pic line put in my neck/chest.
Are you an outpatient for the first week, they put me in the stay city hotel for a week before being admitted to Christie’s for 11 days.
Hope all goes well for you. I thought that it wasn’t as bad as what I thought it was going to be.
Let me know how you get on please
Love Paula xx
@Paula1 hi lovely! So glad you’re feeling better are still staying well! The trial has been great for you and you are giving me inspiration! X not in the Christie yet, I go next week for the cyclophosamide and to get the growth hormones xx
Hi @Byrnebaby , hope you are doing ok. What is your next stage?
I am fine thankyou, still standing by hubby and helping him whenever I can. He is doing well, but decided to stick to fortnightly treatment instead of monthly.He was told that once he changes he can’t go back. Maybe because he’s on the radar trial. He still gets tired occasionally but is still building up his stamina. He now has isatuximab fortnightly and has just started monthly infusions of Ivig treatment. ( immunoglobulins) This is to boost his immune system as he has had a few infections.
@Paula1 hope you are well too. Assume work is ok and your granddaughter is doing well? I see you decided to do monthly treatment. Have you noticed any difference to fortnightly? Hubby still undecided if to change to monthly… Take care, keep in touch guys…x
@Olivia hi there! How are you doing lovely? Managing ok? Is hubby a bit more back to normal now? I know the meds etc aren’t normal, but is he getting out and about now ?
I’m on the RADAR trial too, I go to the Christie next week for the cyclophosamide infusion and pick up the growth hormones for 7 days of jabs 
then harvesting 
on 6/7 May, x
Hi , I remember that time very well. We will keep everything crossed for you, but you will be fine. It is an amazing process but not painful, just takes time but well worth all the effort!!
You will look back and wonder what all the fuss was about. Is Christie a special hospital, I’ve heard great things bout that place! You will definitely be in good hands. I think a few people on here have been so you can pick their brains. Do you have a date for a transplant or will they let you know after harvest? My one big bit of advice at this stage, is trust the process, it’s amazing. Secondly if you like your food, try to feed well and build up. It will give you energy. My hubby was average weight but lost a fair bit and took a while to put it back on after his transplant . He is doing so well now. Anything you want to know, give us a shout. This forum is a font of knowledge and some of the best people I know. Sounds corny but they got us through uncertain waters. I think some knowledge is good… Keep in touch, take care.x