[finchkarParticipant]

my husband had smouldering myeloma for two years, his paraproteins increased and developed a limp which he put down to the dog pulling him awkwardly whilst on a walk, he had a further PET scan and Bone Biopsy which revealed a large tumor to his left hip which eventually lead to him having IM nailing to fix it as he sustained a pathalogical fracture. Treatment then couldn’t commence until he fully recovered from the surgery. When we see the consultant to discuss treatments she said he had 40% cancer cells in his bone marrow and said he was at stage 2 of the disease. He has commenced on 25mg Lenalidomide and 40mg Dexamethasone. From being smouldering to this stage and been a shock to say the least. He has just completed his first months course. Any advise would be greatly appreciated

• This topic was modified 3 years ago by  finchkar.
• This topic was modified 3 years ago by  finchkar.

[paulapurpleParticipant]

Hiya, welcome to this world of Myeloma.
I’m sorry that I don’t really have any advice as i’m lucky that my Myeloma has not caused bone damage; I have some joint pain but that’s down to arthritis.
Forums are getting a little bit old hat, which is why you probably haven’t had any replies. I suggest you join the UK Myeloma Support Facebook page. This is a very supportive group and you will reach a lot more people who are very responsive, often instantly. I am sure there will be someone on there who will have been through similar.
Good luck.
Paula

[DebsParticipant]

Hi there. I’d try not to listen too heavily to the formal terminology – it can make things sound scarier than they are sometimes. I went from smouldering to MM and had 50% in my bones by the time I had my treatment. But it goes with treatment often and varies as to the impact that it has. Biopsies aren’t always done (I have moved to the Midlands and haven’t had a single biopsy in the past 6 years!) as they can be hit and miss anyway….i.e you hit one area and it’s 40% and another area and it might only be 10%.
RE the stages, that is something that I’ve NEVER been told where I am as myeloma tends to come / go/ confuse!
Revlimid is a great drug to be on though and hopefully that will help to not only bring his levels down, but also allow him to get back to a life more like what he had before all of this kicked off.
Try not to get too down (easy to say, not always easy to do!) and don’t forget about the infoline that Myeloma UK run – they can help answer lots of questions about what is normal, and they also have lots of info booklets that might ease your concerns.
Good luck
Deb x

[finchkarParticipant]

thank you for your replies, I have requested to be on the FB pages. Look forward to gaining info and support on there, thanks again

[claireatxParticipant]

Hello. You might consider joining another online group, Smart Patients. Many diseases are listed so be sure to select Multiple Myeloma. There are patients from UK, Canada, USA, and other locations, asking and answering questions. Usually the conversations have active participation because daily emails to participants are sent to list recent questions that patients have asked.

[nogoodatfootballParticipant]

HI, I’m guessing that he’s an older patient because he’s having Lenalidomide from the outset? Of course I may well be wrong but I had a stem cell transplant at Christmas and am one of the first patients to receive the drug afterwards. I do have a friend who’s 72 and he’s doing ok, and has had it prescribed from the outset. I’ve been suffering with my feet as the result of large does of chemo (bald head but am soldiering on! Not heard of percentages as such, however I have lambda light chain paraproteins with a P53 mutation. This MAY make it harder to treat but so far my levels have come down from 3,000 at diagnosis to 58! (as I understand it this is how active the cancer is). Suffice to say that if there is one thing that’s certain with Myeloma, it’s that nothing’s certain! Six months on and I still get an aching shoulder blade and sore ribs, when I first fell ill my shoulders hurt after decorating and there was no skeletal damage there! P.S. I’m not a fan of Facebook, so won’t be going there……Hope all this helps, good luck.

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