Aaah
Thanks for that clarification and recommendations.
I look forward to reading some more!
C x
Hi Paula
I’m sorry you are having such a frustrating time with your Gp. The sad fact is Gps don’t see many people with MGUS or smouldering myeloma and that is why Myeloma UK has just issued some guidelines to try and help rectify this. I think most Gps will see about one patient in their careers – this is what we are up against!!!
Most of us who are already diagnosed have had a long journey like you – it is tough,lonely and hard to get your head around. You are not alone!!!
My Gp is great but he admits he knows very little about my condition so I’m not surprised yours keeps saying “I don’t know”… If you have questions or need someone to talk to then I would strongly recommend calling the Infoline – the Nurses are AMAZING. The whole process is very stressful and it does help to talk…
Normally there are bloods tests…more blood tests and then via a hematologist x rays or scans and a bone marrow biopsy. After all that assuming you need all of them – you will get test results that start to make sense and a management or treatment plan. Everyone is different!
I hope this helps
Good luck
C x
Hi
Sorry for the slow reply – I have been away from the forum for a while.
My pp goes up and down – although not as dramatically as yours -it is enough to keep me happy under the 30 mark.I have been smouldering for four and a half years.
I take lots of supplements, exercise and work hard at staying as well as I can , mentally and physically.
I’m not sure what you mean by “off label” drugs??
My consultant told me pps can vary so they generally look at trends and supporting info.
I hope this helps!
C x
Hi Amme
I’m sorry to hear you have a difficult relationship with your consultant but pleased your GP supports your plan for a second opinion.
I had problems with my initial consultant and my GP offered to refer me to another. You have a right to ask for such a second opinion and even the hard-stretched NHS realises that we don’t all hit it off with each other…..
Fortunately for me the difficult consultant has retired and I now see someone who is a much better communicator. However he is not a myeloma expert and I fully intend to seek a second opinion from an expert on the Myeloma UK list if and when I need to.
I’m sorry to hear about the problems you have been juggling alongside your treatment and I hope life gets easier for you.
Love and hugs,
C xx
Hi Jaime,
I’m so sorry to hear you are juggling all of this – try to make sure you make time for yourself too in the midst of all this running around for everyone else…
Age UK may be able to help – have you looked to see what is available in your mum’s area? They offer some social support – also maybe your mum’s renal specialist nurse or surgery might be able to help.
I wish you well – when my parents were alive they lived 400 miles away too. Trying to support them was excruciatingly hard work but I have to say, worth it in the long run, as no-one can take your happy memories away.
Sending lots of love and hugs,
C xx
Hi – I’m in Kent , and I understand there is a trial at the Kent and Canterbury.
It was mentioned to me by the Nurse Specialist – maybe because I asked alot of questions!!! I am a 56 year old female who was diagnosed three years ago. My pp at diagnosis was 25 but on monitoring subsequently has ranged from 21 to now 26 (sigh). My bmb was 10% so I scraped into the smoldering category.
To be honest to hear a trial mentioned was a bit of a shock – I try to keep this in it’s box and I always thought I would just carry on as I have been until I needed to consider treatment. I was previously told by the haematologist that bearing in mind my age and numbers I would need a SCT at some point but he is very old school and not a myeloma specialist. Personally -assuming no other symptoms or issues – I judged I wouldn’t need to consider treatment options until if or when my pp hit 30.
I am self employed and have alot going on in my life so committing to a trial at this stage( even if I was eligible) seems a big step and I think I will stay as I am on active monitoring unless there are changes which make me reconsider. I just wondered where you were with it…..?
Best wishes,
C
Hi Peter
What did you decide to do regarding the daratumumab trial please?
It was mentioned to me today at clinic so I am curious to know what you decided to do….
Many thanks,
Cygnet
Hi Lacey – apologies for my slow reply.
Yes I am still smoldering – and I hope to continue to do so for many years!
I am not on any treatment just what the optimists call “active monitoring…” and the pessimists call “watch and wait…” ! I think your attitude to this is crucial – you can chose to be a victim – or not. In practice this means regular blood tests to check paraprotein levels and urine for light chains etc.Initially I went to the hospital every 3-4 months- now I am on six monthly checks. In addition I take some supplements I believe help me and focus on keeping fit and well. If you want to understand your husband’s results its probably best to ring and speak to the Myeloma nurses on the Info line – they are amazing!!
I think it takes a while to get your head around this diagnosis….and it’s your choice how to manage it. There is alot of good advice on here and it has helped me considerably. I have not told anyone other than my husband so my adult sons, wider family and friends know nothing about it. Somewhere I read that you can chose how and when you share this diagnosis ( these may have been some of Rebecca’s wise words) and I have decided to keep it quiet until I need treatment. This is a personal choice and I revisit it regularly – the downside is, it can be a lonely place to be….
There is a very good article on “sexy” smoldering myeloma (!) by Karen Crowley on the American Myeloma Beacon website. That reinforces our shared view that “knowledge is power” and reminds me about the value of living in the moment. My diagnosis came as my mum was dying of cancer so I found mindfulness really helpful.
Good luck and do keep asking whatever you need to. My own hospital clinic – which I have learnt to regard as a monitoring station -has given me very little information and support so this website is invaluable.
Love and hugs,
C x
Hi Lacey
I’m sorry to hear you and your husband have joined our club!!
I was interested on your comment about the haematologist’s reluctance to use the term “smoldering.” I came across the same thing initially here in Kent when I was diagnosed three years ago and found it frustrating. My pp and bone marrow numbers said I was smoldering according to the guidelines but I was still branded mgus at the hospital clinic.???
Eventually though a helpful haematologist explained to me that they only use the two terms – not smoldering- because it makes it easier for those of us not on treatment in terms of travel insurance etc. Having navigated travel insurance since diagnosis and the subsequent pneumonia my impaired immune system blessed me with ( hmmm..) I can imagine it definitely would make life more difficult. They seem to cope happily with mgus ……
That said , I thoroughly agree “knowledge is power” and you do have to be your own advocate with this. I am lucky as I have an exceptionally good gp so if I have concerns I speak to him. I am not particularly happy with the haematology clinic where I am monitored but all the time I am stable I will just trundle along there and grit my teeth.. However if I am concerned at any time I think I will just bite the bullet and scrape the money together for a private consultation with one of the London based myeloma specialists. My gp has already offered to refer me elsewhere but I am biding my time until I feel it is absolutely necessary.
I hope this helps. I also recommend talking to the Myeloma Helpline nurses for any clarification you need – they are superb.
Good luck
Cx
Hi Susie
I’m sorry you are suffering so much and send lots of love and hugs . I hope some other people who have experienced this regime will post with suggestions to help you feel better.
I have not had treatment yet but everything I read seems to say it is very individual. Maybe it is worth you chatting to the Myeloma UK nurses on the helpline to see if they can help you formulate your argument for a break if you feel you need it? You should feel your voice is being listened to by your medical team.
Are you near a Maggies Centre? They offer good support – online too if you want to access it.
C xx
Hi Susie
I am sorry to hear about your experience – you don’t need the stress when you are undergoing treatment.
Have you thought about talking to one of the Myeloma UK nurses on the Helpline? I spoke to them when I had problems with my hospital clinic and they were very helpful. So was my gp who immediately offered to refer me elsewhere – so maybe you could talk to yours?
If you remember the locums name you can ask to see someone else – I can’t believe he runs the clinic by himself. I always ask to see the same doctor (an Associate Specialist ) when I go now as we have built up a rapport and I have confidence in her.
There should also be a patient support contact at the hospital who is there to help.
Good luck!
Hugs,
Cx
Hi Miss Woosie
Sorry to hear you are having such a stressful time.
I think what has happened here is no-one explained to you that your possible positive result would mean your Haematology department would monitor you three-monthly for a year.
I hope you get some answers and start to feel better soon.
Love and hugs,
Cx
Hi – I am sorry to hear your news.
Have you tried speaking to the Info Line Nurses – they are very knowledgeable and may be able to explain what your dad can expect to experience on this new drug regime ?
Sending love and hugs,
C xx
Hi and welcome – although I’m sorry you’ve had to join us ( if you see what I mean!)
The difference between MGUS and Smouldering Myeloma relates to certain criteria (you can find elsewhere on this website) but I would recommend you contact your GP and ask if you should to go back to Haematology.
You say you are awaiting repeat test results so maybe you have an appointment already?
Many people with MGUS do seem to get symptoms of tiredness, reduced immunity etc and if your levels of paraprotein (pp)are low and nothing else seems amiss, it seems some clinics refer the patient back for monitoring via their GP ( my health authority does this.)
My hospital clinic also only uses MGUS and active Myeloma (ie needing treatment) as categories so Smoldering status doesn’t exist here in Kent ( even when we meet the accepted criteria!!)
Please do ring the nurses on the website if you have questions or concerns – they are really helpful and let us know how you get on 🙂
C xx
Hi Dean
So glad you got your SCT over and are home for Christmas 🙂
Take care
Cx
