[millie12Participant]

Hi all, I was diagnosed in October 2015 with amyloidosis after a lump was removed from my lymthnode.  After further tests including a bone marrow biopsy it was found by November 2015 I also had Myeloma.  Being told the news, I felt my world was falling apart.  I have had ongoing problems before the diagnosis and had been back and forward to different doctors and getting tests done for about the past five years, all results coming back clear.  I have since been down to the Royal Free Hospital in London on the 22 December and have began Chemo therapy treatment this week.  I will be on this regime for 6 months then if all goes well  I will be getting a SCT around July.  Looks like I have a long journey ahead of me, so just have to get on with whatever it takes to get back to some form of normality, if there is any!  I am finding everything overwhelming just now, especially the thought of being off work for the best part of this year.  Is there light at the end of the tunnel?  I know there is no cure and that the best hope is disease control and longevity of life, so not too bright a future ahead it seems.  I am going to try and stay positive and take each day as it comes.  I am still young 49, and in good health apart from the above, so hopefully this will stand in my favour in the dark days ahead.   I will keep that as something positive to focus on.  I have a loving family that I am determined not to leave for a long time yet, so I will keep fighting and hopefully get through this.  Good luck to everyone else in their battle with this horrible disease.

[annlynnParticipant]

ah. millie. a story like so many of us take heart that lots of us have done the chemo and the sct. and lots of us are copping ok. obviously some better than others your positive attitude will get you a long long way take care and some comfort that treatments work very well for a lot of patient s. hope your one of them. good luck with it all. . ann

[julierennieParticipant]

Hi Millie

Trust me, you will get through this! I was diagnosed with MM aged 43, I’ve been through chemo and last January had a SCT.  No denying it was tough at times but you will get back to normality.  I was back to work in April last year, didn’t expect that and now I’m living my life the way I used to, before this all started.  At times you feel like you will never get your old self back but you do.  At this point, it’s still very raw, not knowing what to expect and trying to cope with the diagnosis.  Please take heart that it will get better, you’ll get through treatment and be a stronger person for it. Good luck – Julie.

[millie12Participant]

Thanks, for getting in touch that helps just knowing that the treatment works and there is some normality at the end of this.  Although it is going to be hard living life with this dark cloud hovering above.  Hopefully there will be a cure from this horrible disease soon.

[greetjeParticipant]

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Dear Millie, sorry to hear about your recent diagnosis. I wish you that your treatment brings you quickly in a disease stable situation. After treatment, many patients stay stable for years with a good quality of life. I was curious about your initial disease symptoms. Apparently, it started with the lymph nodes? Did you have swollen lymph nodes? And did a biopsy reveal the presence of AL amyloidosis which led to further testing for MM? I have had smoldering MM for 14 years (no symptoms). Last month, I started to have a lot of swollen lymph nodes and a biopsy showed the presence of myeloma cells and amyloidosis in the lymph nodes. According to my MM specialist, this is a very rare presentation of the disease. Very few cases are known where myeloma cells and amyloidosis show up in the lymph nodes. What did you MM doctor say about this presentation? I would be interested to learn more about your situation! Because of this presentation in the lymph nodes, I will probably also start treatment soon (chemo and ASCT). So, we will be in this together! I wish you all the best! Greetje

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[bernardParticipant]

Hi Millie

things do get better. I had the collapsed vertebrae that led to the diagnosis of MM and it was a shock. I had never heard of it and when I understood what I had I thought my life had ended. That was 24 July 2014 and I am still here. The treatment can be hard at times and I had the SCT this time last year which was hard as well but it’s all worth it. I am back playing golf for the last 8 months. I ticked off the first item on my bucket list last October (to take my daughter to NY) and life goes on and back to normal. It’s always in the back of your mind but as others have said, stay positive and live your life to the fullest. There is plenty of light to come.

Good luck. Bernard.

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