[raycalParticipant]

Hi it’s my husband who has Myeloma but I think we carers suffer equally as much if not more as we haven’t got the freedom to seek help when we feel it is needed.
He was diagnosed over 2years ago and has been through a successful SCT. This lasted for 14 months when he had his first relapse, where he is now. The relapse was identified after he started to feel very tired and had pain in his back. The pain was successfully dealt with by way of radiotherapy. This was followed by more radiotherapy when he developed a plasmacytoma on his chest. Again a good outcome with radiotherapy.
During all this he has gradually become weaker and weaker. Velcade was tried but he was moved onto Revlamid when it was thought Velcade did not agree with him. Although his paraproteins have come down from 28 to just 8 he continues to suffer with terrible fatigue and weakness, particularly in his legs. He is now at the stage where he has difficulty getting from a sitting position to a standing position. When he gets there he is very unsteady when walking. He has no pain in his legs but they do tend to be swollen because of the steroids. Although he is seen regularly at hospital visits no one seems particularly concerned about his limited mobility and he is reluctant to press the point. We have had a stair lift installed at home because he can’t manage the stairs any more.
Has anyone had this experience and what did they do about it? Does it get better?
It has come to a head tonight because I had to call for help when he ended up on his knees and just couldn’t get up
I’d appreciate any feedback.

Calray

[donParticipant]

Hi Calray,

My history in brief is diagnosed with MM twelve months ago, swiftly followed by pulmonary embolism the cancer on bowel was discovered six months ago. My first two cycles of treatment were CVD plus daily injections of Fragmin to thin my blood and monthly drip of zemeta. Next two cycles have been Revlamid and Dex. Plus, of course, pills for other minor possible problems.

My cycles end today and I have the usual side effects – poor sleep, extreme fatigue, breathlessness. However recently I have developed strong pain in my right hip and knee.

I’ll see what the consultant says today and report back

Don

[peggyParticipant]

Hi Calray,

I too had problems with ‘useless’legs but I’d like to give a bit of history first.

My diagnosis of myeloma occurred in a very roundabout way. I’d suffered increasingly severe migraines and noticed that I had difficulty raising my right leg so that I’d have to pull it up with my arms in order to cross a stile. It was discovered that my blood pressure was extemely high and that I had impaired kidney function. Eventually myeloma was diagnosed.

I was prescibed courses of Rev , dex and cyclophosphamide, during which my walking stability became far weaker and occasionally resorted to using a wheelchair or more frequently walking sticks. I had my SCT in Dec 2012. Recovery took far longer than I had anticipated and until Aug 2014 I would only have said that I felt so-so.(Not bad note but not yet as I well as I had hoped for).

I kept on referring to my leg problems but no one paid much attention and didn’t think it was related to the myeloma.I was sent to have neurological tests but these came back negative despite annual appointments with the nerologist.

Suddenly in August this year I felt as if the fog had lifted and last week I discovered that I could also raise my leg normally. Just like that.

So whatever anyone says, and whether it is related to myeloma or not, just hang in there: it may yet get better and the doctors ,though they know a lot , do not know eveything about this disease.

All the best in your (husbands) journey
Peggy

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