[joycematherParticipant]

Hello,  I have had 3 weeks treatment on Velcade and Dex and find that two days after the injection I have a burning prickly head and chest and feel so bad I can’t cope with carrying out basic things.  This lasts for 3 days and then leaves me with less severe symptoms.  I also have more swollen legs and ankles and have put on half a stone in weight.  I spoke to my consultant about this and was told that the head and chest problem was not caused by AL amyloidosis.

I had a prickly slightly dizzy head before I started the vel/dex but I am quite concerned about carrying on this treatment as it makes me feel so ill.  Anyone else with the same or similar symptoms please?

I do get the prickling in my hands and feet/legs but I don’t feel tired as yet.

[joycematherParticipant]

Hello Denise.  I had the results of my mri scan of my spine this morning and was told that they couldn’t see anything wrong.  I can’t think what is causing this burning and tingling in my shoulders, arms and head so I have asked to see a neurologist.

Does anyone else out there have these symptoms – they are so hard to live with.?  My husband passed away in March (kidney cancer) and I am finding it hard to cope.

Any comments would be welcome.

Joyce

[joycematherParticipant]

Hello Denise.   Yes, I have smouldering myeloma and have burning and aching in my shoulders, around my ribs, and into my head……very unpleasant symptoms to live with.  I have not had any treatment yet but am seeing the consultant tomorrow for the results of an MRI scan of my spine.  I’m very worried about it all.

I also have AL amyloidosis with a deposit on my kidneys.  My blood results are pretty good, but I have a low albumin level and a loss of good protein in my urine.  The consultant is urging me to have CVD treatment to protect my kidneys.  Hope this helps.

Joyce.

[joycematherParticipant]

Hi Pat.  Thank you for this.  I’m sorry to hear that your protein loss is still high – it must be disappointing.

My protein loss is high and my albumin level is 15 and this is the main reason for recommending CVD treatment as the amyloid deposit is on my kidneys.  They are concerned about further damage to my kidneys.  My FLC are now only 54.

I am told that the tingling heavy legs and swollen ankles are caused by this and that the treatment will improve these symptoms.

I have now found that there are people on velcade and dex only but they have not had a good response.  I’m not sure what to do.

best wishes, Joyce

 

[joycematherParticipant]

Thanks Maureen.  I’m sorry to hear that your consultant rejected the cyclophosphadmide – I can’t understand why. I hope you have some success with the Western General.

My FLC are 54 (lower than they have ever been) but my consultant is recommending the treatment because of my low albumin level 15 and my protein loss.  This is apparently caused by amyloid deposit on my kidneys.

Also my symptoms have got worse so this concerns me a lot.

Joyce

 

 

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