[joycematherParticipant]

Hello.  I was diagnosed with first stage myeloma and al amyloidosis with kidney deposit in December of last year.  I was caring for my husband with advanced stage cancer at that time, and he sadly passed away in March of this year.  In December I used alternative supplements to hopefully stop the disease from progressing.  I attended a German clinic in  April/May that used alternative treatments and my blood results impoved, and they have continued to improve.  Unfortunately I still have an albumin level of 15 (should be 35 plus) and a protein loss that varies from 4g to 8g.  Also in the last two weeks my symptoms have got worse – burning, aching in my shoulders and arms, head, and ribs.  I also have tingling, swollen legs and swollen ankles.   Did any of you have these symptoms when you were diagnosed?

My haematologist is advising the cyclophosphamide, velcade, dexamethasone treatment.  Have any of you tried the velcade and dex treatment without the cyclophosphamide?

I am really scared, particularly now that my symptoms have increased.

I would appreciate any help you can give.  Thank you, Joyce

[PatGParticipant]

Hi Joyce, so sorry to hear about the loss of your husband. It must be hard for you especially as you are fighting such a tough disease. I have AL Amy but no Myeloma and was treated with 8 cycles of VCD finishing last June. Unfortunately my protein output is now very high and my eGFR is falling. I will be seeing the transplant team on 23 September with a view to going forward to SCT.
The tingling, swollen legs and ankles could be due to kidney involvement. My ankles were swollen at diagnosis but I still have tingly feet ankles and fingers due to peripheral neuropathy.
I am sure there will be someone on here who has the treatment without cyclophosphamide. Personally I found that part if the treatment ok. It was the other two components that gave me side effects.
Hope all goes well for you with whichever treatment you decide on. Keep positive
Regards
Pat

[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

 

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