[cnbrandsParticipant]

Duncan,
My mother has primary amyloidosis in the trachea (very, very rare) just like you and she just got home from a rigid bronchoscopy. Please email me directly so we can share notes. cbb924@gmail.com. Thanks.

[cinziaParticipant]

Hi Duncan, I also have amyloidosis – its in my throat, stomach, liver, heart and scalp strangely enough. I am 48 years old and was diagnosed in Oct last year. Whilst it felt as though the symptoms came on very suddenly, on reflection there were signs earlier. There is much information about amyloidosis on the internet but be careful what you choose to read – the information can be quite old and there has been much progression in recent years. In terms of treatment I was started on CDT (cyclophosphamide, dex and thalidomide). Main side effect for me was 2 days of extreme nausea (yuk)each week and the fact that I no longer enjoy food as it doesn't taste right anymore – this will pass I am told. It worked really well for the first 3 months and then plateaued for the next 3. My lambda light chains reduced from 550 to 60 during this time. My specialist doesn't want me to risk a stem cell transplant as my heart is impacted by the amyloid. My only option was Velcade treatment (which I have to pay for privately as it is only available on relapse in Australia). Aside from the very painful $1800 per week, I have not had any side effects but it is only week 2. We are hoping to get the light chains down over a 10 week period. It is an interesting journey where priorities are examined and relationships deepened. Happy to chat whenever you feel you need it….good luck with your treatment. Take care
Cinzia

[debonthewebParticipant]

Hello

I am 49 yrs old and I have smouldering myeloma. I feel like admitting that is like going to alcohol anonymous! I am under Prof Yong at UCL so I'm in good hands. At the last count my plasma levels reached 39. I have just had an MRI scan and go back to see Dr Yong again on the 30th. I am symptom free but my mental wellbeing is suffering. Unusually for me I have had to call in sick today. I feel so worried and exhausted by it all.

I was diagnosed with MGUS in 2008 but didn't really take it seriously as I only needed yearly blood tests. now I am back to the hospital every couple of months and my usual positive self has taken a battering.

This is one club I didn't want to join but there again I suppose we are all in the same boat. I just hope I will smoulder for a long time but my numbers are increasing at a fast rate 🙁

Please forgive me for sharing

Deborah

[Author]

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