Hi everyone i am new here.
Just been diagnosed with this condition. I don’t have any symptoms and everything was ok from bone marrow biopsy,bloods and urine, all normal levels…Just over 10% myeloma. I don’t need any treatment just watch and wait. Am i right in thinking I have something called, Smoldering myeloma?
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Hi@Emma62and welcome to the forum.Www.bloodcancer.org.uk
Www.myeloma.org.uk
Have lots of useful info on being newly diagnosed .
I have learnt a lot from their websites and others experiences.
From my knowledge it sounds as though you are thinking what I understand too about smouldering myeloma and its good that you are on watch and wait.
Its such a complex thing and everyone is different.
I have IgG Kappa
The Nurses at Myeloma Uk and BCUK really helped me navigate myself through my diagnosis of MGUS .
I am on watch and wait .
I am glad that you have posted as its good to have the support of others on the forum.
@emily62 thanks for posting and I am wishing you well on your journey😊
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Hi @emily62 a great big welcome to our forum and I am so glade you have found us.
@Bannanacake has far more experience than me and I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses.
Please do have a read of the Blood Cancer UK website.
If you would like to talk to someone the Blood Cancer UK support line is there on 0808 2080 888.
I have another blood cancer and I was diagnosed whilst being treated by a gynaecologist and I am also on ‘watch and wait’ or ‘active monitoring’.
I remember my complete shock and disbelief of my diagnosis and getting my head round watch and wait.
Since my diagnosis I have been on an emotional rollercoaster and waiting for appointments, tests, results and appointments.
Give yourself time to take it all in, be kind to yourself and really look after yourself.
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It’s definitely smouldering myeloma when you don’t have any symptoms. My Mom was diagnosed December 2015 - she’d had some fatigue and weight loss which had been caused by Vitamin D deficiency (totally unconnected to the myeloma!) It was blood results that led doctors to do a bone marrow biopsy which gave them the diagnosis.
She was monitored for about 3½ years before her paraprotein showed enough growth for treatment to be required - her first round of chemo was spring 2019 and reduced her paraprotein by 85% and the haematologist decided then and there that instead of doing 6 rounds of chemo, they’d only need to do 4, which at our local NHS Trust was the minimum that had to be given. She had had regular checks of her paraprotein levels regularly from diagnosis - sometimes they’d see her more frequently, other times, they’d see her less frequently, and eventually after her really good response to chemo, they decided to do a stem cell transplant in autumn 2019 (she was 73 when she had it, and despite some rocky moments with the nausea and tiredness, she did really well!)
Bizarrely, at around the time Mom was diagnosed, her brother’s sister in law was diagnosed with active myeloma, affecting her bones, so she had all the chemo and stem cell transplant before Mom, and they were a great source of support for each other!
Sadly Mom’s remission only lasted 22 months and her age prohibited another stem cell transplant. The signs I now look back and recognise were indicators for her relapse were mistaken for the effects of the heat wave we had in summer 2021, and clearing her cousin’s council house before it had to be handed back to the council, and dealing with a lot of things due to her cousin’s death which tired her out. I had been helping her with it all, and I myself was exhausted, so I didn’t really think anything of it (despite the fact I’m a qualified nurse!), although there were some very hot days that I refused to let her come with me to do things I could handle by myself, and she was approaching 75 so it was hard to tell what was normal tiredness for her age (none of my grandparents had lived past 75, and were all far more old and fragile than Mom seemed).
My uncle’s sister in law is still in remission and doing really really well, but we sadly lost Mom 6½ months after she relapsed, but she was being actively treated until less than 3 weeks before we lost her, and she was well enough to be at home until just 7 days before she passed, and the last 72 hrs of that time, she had a large room in a local hospice where we could be with her 24 hrs a day.
Everybody’s experience is different - 2 family members with the same disease having 2 different outcomes, even being under the same doctors is evidence of that.
I would urge you to never be afraid to contact your haematology team if you’re ever concerned, but also, keep going as normal - take advice from your team at the hospital, have contact information for macmillan to hand - they are fabulous! As are Myeloma UK - they sent me all the publications I asked for when Mom was first diagnosed - it cost them £25 postage, but they asked for nothing at all from me to cover costs. They also have a book that can be read with any young children to explain Myeloma - they didn’t have it when Mom was first diagnosed, and my niece was only 18 months old at the time so really not necessary. Throughout Mom’s chemo and stem cell transplant, my niece was 5, so my sister decided she was going to be totally open and honest about what was happening, and when Mom relapsed, we got a copy of the book for explaining it to children and it really helped. We lost Mom 11 days before my niece turned 8, and yesterday, she turned 9 - coinciding the the Walk of Light, which she immediately jumped at the chance of doing for her 9th birthday - even deciding for us all that we would walk the full 5k and not finish at the 2.5k mark!
With every bit of fundraising, more lives can be saved or at the very least, people can be kept well for longer.
Listen to your body, but don’t get too paranoid about little things. We had the worst of Covid to deal with just 4 months after Mom had her stem cell transplant, but we kept her well - yes, she shielded as much as she needed to, but she lived with my dad, my brother & myself and none of us caught Covid, she got better and stronger and her remission was spent well - we couldn’t be more proud of the way she handled her treatments, and she even got better at firing the humour at my dad which was very unlike her, so we know she had a good quality of life in remission - for us, that was most important.
One thing the consultant told her when she was diagnosed in 2015, most people with myeloma don’t know they have it, and it’s normally picked up post-mortem, but rarely the cause of their death, just something that had been smouldering in the background, unknown and not affecting the person!
Live life as fully as you can - enjoy the little things as well as the big things, and don’t let Myeloma stop you from having a long and happy life. Listen to your body - you’re the one who knows it best, but don’t let listening to it drown out all the other sounds of life!
One practical tip I would give you, though, is to have a bag packed and put in your wardrobe or under your bed - Mom had a couple of unexpected hospital stays and we’d always have to scrabble round to get some stuff together for her, which was relatively easy for me, knowing from a professional point of view what the hospital would supply and what Mom would need, but if you’re prepared, you know you’ll have what you want ready if needed! And always keep a notebook and pen for hospital appointments and one in your pre-packed bag too! Find out your local hospital’s Haematology nurse specialist’s information and phone number - they are often the easiest to contact and best person to speak to if you’re unsure of anything - they truly are worth their weight in gold!!!
Wishing you health & happiness!!
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Dear @emily62
Thank you for posting and welcome to the forum, I am sure you will gain great support and experience here and I can see already this has happened.
The definition of smouldering Myeloma is the name given to myeloma where there are no symptoms or signs of damage to your organs.Smouldering myeloma and watch and wait | Blood Cancer UK. This does sound like that this is the case for you but I would ask your Haematology team for confirmation. They will also send you and your GP a letter documenting you diagnosis too. Do you have a Clinical Nurse Specialist that you can call?
There is also some information here from our colleagues at Myeloma UK that may be of some help to you: Smouldering myeloma - Myeloma UK
If you would like any support or would like to talk this through, please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Hi @Nicki welcome to posting on our forum, I only wish we could have been there for you over the last 8 yrs.
Your post, along with what happened with your mum’s medical history, and your nurses training, really had some handy hints.
She cannot have been in better hands.
Yes, I have found Nurse Specialists are wonderful.
I always have my ‘Grab Bag’ packed in case of a trip to the hospital, good tip.
Thanks so much for for participating in the Walk of Live at a sad time of year for you, mixed with the excitement of your niece’s birthday.
Thanks so much for taking the time to write your post and I hope you look after yourself as well as you look after others.
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