[lisahwParticipant]

Hi,

My dad is 65 and otherwise was fit and healthy before he fractured his arm following a fall on ice over Christmas. The x rays picked up bone lesions and following blood, urine tests, a bone marrow biopsy and MRI he was diagnosed with MM last week. We met at the hospital yesterday to discuss treatment/prognosis etc and he was admitted last night to start treatment this morning with Dexamethasone. We have also opted for a clinical trial – Cardamon. There is a complication at the minute which is the team’s concern about the risk of acute fracture to his femur due to the level of bone disease/infiltration? Sorry if that’s not quite the correct term. There has been a lot to digest over the last 24 hours. They are considering a prosthesis but I am worried about whether this will hamper is recovery/chances of remission/whether he will be able to access the clinical trial etc. I think we have our heads around the MM just about but the potential complications with surgery worry me. I have mentioned this to the consultant we saw but he wasn’t an orthopaedic consultant so I didn’t feel particularly reassured. Does anyone have this experience? Many thanks, Lisa

[paulapurpleParticipant]

I can’t help you on this one I am afraid but you will reach more people who have loads of information and experience to share if you join the UK Myeloma Support Group Facebook page; it’s where I turn if I need information and support. It’s open to both people with Myeloma and their carers.

Good luck

Paula

[taffdParticipant]

Hi Lisa,

I had a prophylactic nail put in my left femur, as it was about to break. At this time, the weight of my leg was enough to fracture my pelvis, such was the state of it due to a large plasmacytoma.

The morning after my op, I was asked to get out of bed and to see if I could weight bear. I was absolutely stunned to find that not only could I weight bear, but could also walk a few steps with the aid of my wheelie walker thingy. I went home the same day.

For me, it didn’t hamper me in any way, though I have to say that my chemo was all oral tablet form (CTD). Hope this helps.

 

Best Regards

Taff

[lisahwParticipant]

Hi Taff,

Thank you – that’s reassuring to hear. I think we will know more once the MDT have had their meeting on Monday.

I am beginning to realise how much of a minefield it is because everyone’s experience is so unique and Myeloma is multi-faceted in terms of its effects. It’s great to hear how fast progress is being made in the treatments. Wishing you all the best Taff, Lisa

[lisahwParticipant]

Hi Paula,

 

Thank you very much for this. I have applied to join the group this morning and hopefully I’ll be able to access it soon.

 

All the best,

 

Lisa

[smilneParticipant]

Hi Lisa

I feel your pain, my dad was also diagnosed just before xmas and its very worrying  time. My dad has 2 broken vertebra in his back but that’s the least of my dads worries, I won’t bore you with the untold complications he is having with chemo at the mo! I hope your dad gets sorted soon but you need to ask as many questions to the consultants as possible and chemo nurses. If your dad is anything like mine, he is IT illiterate – wouldn’t know how to use this site that for sure (bless him) but this site is fab and the forum is good for talking to other people. I’ve been able to print off all sorts from this site and give to mum and dad to read. Sending you big hugs x

 

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