Newly diagnosed Myeloma

Hi Benjiboy,   Kevin here   also known as Vespa,    male,   69,   Myeloma patient in Remmision and doing good!

Sad to see you coming on here,  but a lot of good folks will respond to you,   it is a lot to take in at first,     not sure of your age or treatment plan,..  but  a new diagnosed  patient can be offered,   DVTD  which means 

Hi and welcome. 
I believe you will find us a very supportive community. 
I began treatment in January and just wanted to say that I haven’t forgotten how apprehensive and scared I was. I remember posting a message in the early hours when I couldn’t sleep and felt particularly frightened. 

I found lots of support here which helped me through it all. 

I’m 76 and if I survived it all I feel that you can too. 

Just remember to hang in there and accept all the help you are offered. 

I wish you well. 

Warm regards

Jo.  

Thank you Vespa for your reply. I think the drugs you mentioned are in fact what I am having. I am 75 so stem cell therapy is not an option. The weird thing is for me, apart from being very tired, is that I feel ok. It is scary to think that I am going to have treatment which is likely to make me unwell! I am very bad at asking for help as very independent but I realise that I may have to now. My family and friends have told me that in no uncertain terms!
thank you for your support

Di (Benjiboy)

Hi Jo. Thank you for your reply.  I think the nights are the worse as your mind tends to run riot. I am 75. Are you still having the treatment? It is very difficult to know how long it is going to go on for but the main thing is that it works. As I said to Kevin, I will ask for help when needed.

best wishes

Di

Hi Benjiboy.

Jo and Kevin have already replied and Kevin has outlined the treatment.

I just wanted to say that there is an entire community of us who have been through what lies ahead for you. I was diagnosed in 2022, had the treatment and am still in remission.

It is one hell of a shock to be diagnosed with myeloma, but people lead long and enjoyable lives with it these days!

Please let us know if you want any info or advice.

Hi Kevin. I did not say in my message that I am so glad you are in remission and doing well

Di

Thank you for your reply. You are right it was a real shock following a routine blood test in January. I am determined to think positive thoughts if I can. I am glad that you are now in remission.

best wishes

Di

I am concerned that you had a blood test in January and only now in September are you getting treatment. Was it NHS delays?

It was diagnosed as smoldering  myeloma and it was “watch and wait” until my blood test in August showed increases which now require treatment. The NHS has actually been brilliant so far with appointments and blood tests done regularly. 

Di

I was diagnosed with smouldering myeloma following a routine blood test, in October 2024 and like you, was put on watch and wait.  Almost one year to the day, I was diagnosed with Myeloma. To say it was a shock is an understatement. I felt well, was fit and a young at heart 75 year old without any symptoms whatsoever.   I really can identify with what you say. 

I decided to go with a new treatment that had just been approved in the UK.  Isa-VRD.  I postponed commencement of treatment until January so that I could enjoy Christmas. 

I was unlucky in that I experienced most of the side effects though know of someone on the same treatment who has hardly experienced any.  It really is different for each individual. 

the first few months were brutal but, I have an amazing consultant and oncology team.  I don’t regret any of it because it was worth it!  My treatment was weekly (different hospitals have different protocols) and treatment days are painless and I’m plied with coffee, biscuits and lunch. 

After 4 months my paraproteins had plummeted and were/still are, too small to quantify.  My serum light chains have also dropped significantly.  The Velcade was also stopped and I was put onto fortnightly treatment soon after.  After 6 months from commencement  I was able to stop Lenalidomide.  All of this has resulted in my having very few side effects and feeling well again. Fatigue is the main side effect and I took the advice of others and don’t fight it; I just rest when I’m tired and no longer feel guilty for doing so. 

I am telling you all of this in the belief it might offer you hope.  There is light at the end of the tunnel, this cancer may be incurable but, it is treatable and you are likely to have many more heathy years ahead. 

Be kind to yourself (extremely important) accept support ( I found that hard too) enjoy the good days and care for yourself on any not-so-good ones. 

We will all be rooting for you. 
Jo