I have recently had abnormal protein levels in my blood tests.
Thankfully to a marvellous doctor he refered me onto the 2 week wait referal to see a haemotologist.
Ive had a ct scan and saw my consultant yesterday.My ct scan is normal and all other blood tests are ok however he still wants me to have a bone marrow biopsy as he thinks its a high possibility of smouldering myeloma.
I have had a couple of anxious weeks as you can imagine but feel extremely lucky that it was picked up on a routine blood test.
I have fibromyalgia too so reckonising symptoms is hard too as a lot of myeloma symptoms are the same as fibromyalgia.
Greatful for any advice on coping with a diagnosis when it is confimed and fibro/myeloma symptoms.Love to you all.x
Hi minnymoo, Vespa here, AKA Kevin, nice to see the GP moving fast, and the CT Scan showing nothing bad on your bones, the bone marrow biopsy, i had to help confirm the diagnosis , it did, the Anaesthetic worked great and the team explained everything that would happen and when to expect a jolt of pain ( down one leg ) lets hope it is only smouldering, i have now had my Stem cell transplant 16 months ago, and doing well, i have to say the hardest thing was tell my ( our) kids, all Adults, but two in Australia, and explaining it all, and reassuring them, all would be well, but for you also dealing with fibromyalgia is an added difficulty, having read how painful it can be, MM i have found the treatment to be not at all painful, even the Stem cell harvest and Transplant, the recovery in hospital is the tough part, hope this does not scare you, but i think you will be in good hands with the team to treat you. mental health is also important. kevin
Hi Minnymoo,
I hope that I can provide some reassurance on smouldering myeloma.
- For many, many people, it never develops into actual myeloma.
- There has been medical research on preventing/delaying smouldering myeloma developing. An existing treatment - daratumumab - may be approved soon for this new use in the UK for the high risk cases.
- Even if smouldering myeloma does develop, many of us have learnt to live with myeloma, and the ever increasing number of treatments means that there is the prospect of being around for a long, long time!
Hi Minnymoo, I too like Vespsaka kevin have MM and been in remission since stem cell transplant for 18 months and yes, the worst part was the stay in hospital after the sct. Extremely poorly for about 3 weeks but nothing they don't prepare you for. My care was second to none, NHS are just fantastic. I hope for you it doesn't turn into MM but there is always help, advice and reassurance on this forum from people like us who are going thru and have gone thru the treatment. Fingers crossed for you and take care. Bunky
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