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…[Read more]
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….
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…[Read more]
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…[Read more]
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 h…[Read more]
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…[Read more]
cygnet replied to the topic "Possible" MGUS 3 months ago,awaiting results of repeat blood/urine in the forum Smouldering myeloma / MGUS 5 years ago
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,
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,
cygnet replied to the topic "Possible" MGUS 3 months ago,awaiting results of repeat blood/urine in the forum Smouldering myeloma / MGUS 5 years, 2 months ago
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 s…[Read more]
Hi – just lost first reply ( grrr)
I don’t know the criteria for bone marrow biopsy but my pp level was 27 at referral.
Initially at the end 2012, I was diagnosed with iron deficient anaemia. No one had an explanation for the pains I had then in my legs – I do alot of exercise but it wasn’t muscle pain. My physio/osteopath was baffled too.…[Read more]
Hi again 🙂
Do you know what your paraprotein (pp) level was in these tests? If it is low as you said your Gp may have decided to retest and then refer you onto haematology or he may have spoken to them already.
Either way if you’re unhappy/bewildered/ still feeling unwell I would suggest you go back and clarify what is going on at your…[Read more]
I’m sorry to hear about your diagnosis and also your on going symptoms.
Although the medical definition of MGUS says it’s symptomless, lots of people who suffer from it do experience symptoms so please don’t think you are alone. In fact I recognise some of the ones you describe myself!
The leaflet Ian mentions is very informative…[Read more]
Sorry to hear you and Peter are having such a tough time of it. I think it is sometimes harder for “the other half” than the patient…..
You sound exhausted. I think you need to make yourself the priority while Peter is in safe hands in hospital & try & get some sleep. Once you have done that you will find everything else feels less…[Read more]
Sorry to hear you & your husband are having this additional stress on top of treatment. Is your husband a member of a union – because if he is his welfare rep might be able to help him?
I take 1 x 10,000mg tablet of Nature’s Best Turmeric ( Kent based company) per day. I initially started on a half dose ( I simply cut the tablets in half ) as I read too much if you’re not used to it could upset your stomach.
I have bought various supplements from Nature’s Best for years so after researching the internet to see what some…[Read more]
One of the best stress management books I have read is The Chimp Paradox. You can dip in & out of it but I have really enjoyed it as well as finding it useful. Mindfulness techniques have helped me too .
I’m a smoulderer who takes curcumin ( plus some other supplements.) As Rebecca astutely says, I like the idea I’m being proactive. My…[Read more]