[bearParticipant]

My Sheila had flow cytometry test twice on the NHS when being treated at the Royal Derby hospital…they send samples to HMDS up in Leeds for the test. both came back mrd-.

[bearParticipant]

Totally straightforward, we transferred from royal derby to Christie Manchester without interruption when moving to North Wales. We contacted Christie to expedite the transfer.

[bearParticipant]

My Sheila gets a face to face every month with Dr. Jim at the Christie…this last round is the first with a two-month cycle. Wonderful bunch at MCH so we take them home baked cake every visit to make specialist nurses Emma and Decima laugh out loud.

[bearParticipant]

Someone has just registered to post some advertising.

[bearParticipant]

Point your doctor to this. Its the NICE guidance for diagnosis https://www.nice.org.uk/guidance/ng35/chapter/Recommendations#laboratory-investigations

[bearParticipant]

Suzie, I know what you are going through, my diagnosis was seven and a half years ago. I had VTD and no stem cell transplant, and now on daratumumab maintenance. Had one short radiotherapy treatment in my neck and a couple of fractures now healed. I go for a run every morning now. Its a long term chronic condition now with many very good treatments. Talk to your consultant and if you are diagnosed with myeloma, talk to your clinical nurse specialists – they can be angels. Sending you a hug… Sheila.

[bearParticipant]

My Sheila declined SCT and had VTD without any ill effects. After a relapse she had DVD and dara maintenance – still doing well 7 years down the line.

[bearParticipant]

Shaun is spot on! My Sheila has gone 7 years and currently on Daratumumab having had VTD only – no stem cell stuff – and then DVD, and she runs five miles a day to show other 62 year olds it is possible. Read up on things, and yes, learn about the disease and its treatments. Some consultants do not like being challenged (they refer to us as “Doctor Google”) but others welcome you becoming engaged and discussing treatment. And look at the hospitals that engage on trials (UCLH, Royal Marsden, Royal Hallam, Kings, Manchester Christie, Manchester Royal, Leeds) have very good consultants. We got a second opinion from Dr Kwee Yong at UCLH that was very helpful whilst at our local hospital and then moved to Christie under Dr Jim Cavet.

[bearParticipant]

I think you will find there is no credible evidence that CBD works in the patient – in the test tube it might have effect https://pubmed.ncbi.nlm.nih.gov/27769052/ but that proves nothing. The clinical trial in the patient https://clinicaltrials.gov/ct2/show/NCT03607643 sponsored by Leaf Vertical has never recruited anyone. Leaf Vertical are all too happy to sell stuff to you https://adisinsight.springer.com/drugs/800052670 though.

[bearParticipant]

Much like the Curcurmin fraud by Aggarwal at MD Anderson – money corrupts. Here was a well credentialed biochemist who did a post-doc at a major institution and did research on TNF cytokines at Genentech before leading research at MD Anderson. But then, setting up Curry Pharma, and faking results for his papers, he jumped onto the quackery bandwagon. And got away with it for over a decade.

[bearParticipant]

My Sheila (year 7 now on DVD – just 4 weekly SC) came down with mild Covid last Easter, and might actually have caught it again when we went to London over Xmas. We have both had chronic fatigue and Sheila being on dara, the fatigue has been serious. She does a 5 mile run one day and the post exertional malaise lasts a week.
Being in Wales it’s been impossible to book an appointment online to get her the vaccine. 0300 number – and be prepared to listen to music for 10 minutes. Try three times a day for three weeks running…

[bearParticipant]

I’d recommend trying to establish a good dialogue with your consultant and specialist nurse. Read up on things – look at the NICE pathway for Myeloma and know what treatments are available and when. Some doctors are brilliant and you can talk to them, ask questions and understand things and ultimately get encouragement. Others do not like it and refer to you in the staff mess as “Dr. Google” – don’t despair, just look elsewhere.

The specialist nurse is your go-to. A good nurse can be an absolute angel when things are difficult. We had brilliant nurses at the Royal Derby Hospital (yes, you, Chris, Sue and Lizzie!). Others unfortunately are like carry on matron – you feel like you are bothering them and you can almost hear the echo as they slam the phone down.

Myeloma is hugely varied, so do not get hung up on things like prognosis – they are historical figures and things have moved on so much. We had a specialist nurse (at another hospital) once say “5 to 8 years” which had Sheila panicking saying “I only have three years left”….. do not start counting the days.

[bearParticipant]

My Sheila was diagnosed in 2014 and had 11 fractured ribs and a collapsed vertebrae. She started with VTD and after two months had a kyphoplasty in the morning feeling so well walked home at lunchtime! She declined a stem cell and just stayed on thalidomide two years. Relapsed a year and a half ago and had DVD, now just on daratumumab. She runs five miles a day. It will get better.

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