This topic contains 21 replies, has 10 voices, and was last updated by 
Vicki 10 years, 11 months ago.
I am new to this forum and I am still trying to get my head around my recent diagnosis of asymptomatic myeloma. I feel utter disbelief because I've never felt fitter or healthier. Surely this devastating chance discovery can't be true? I only had a routine blood test because the practice nurse said that it was good to do at the age of 4o. After this, I entered this nightmare rollercoaster. I was sent for a further blood test, then a skeletal x-ray then a bone marrow biopsy and now I've arrived at destination cancer. I received my diagnosis on Monday the 7th of October at 12pm. This is the day my life changed forever. I now carry this massive burden around with me every day. I'm a 40 year old working mum with two young children. I thought that this disease was linked to old age. Are there any other mothers of young children out there who have it because when I was at the clinic, one of the most depressing things was that everybody else was over 70. I felt like a fraud, as if I was there under false pretences. I'm not feeling that 'why me?' feeling because 'Why anybody?' I just feel so sorry for my beautiful children. I don't want to leave them because nobody on earth could love them as much as I do. I know that I'm indulging in self-pity. I just want someone to wake me up from the nightmare. It's all surreal.
Hi Chrissie
We all felt exactly the same as you,devastating ,no matter what age you are or how fit you are it is devastating!!!:-( and I am the carer;-)
Takes a little time to realise it's not the end of your world,it just becomes a different world,I would try to look at the positives,Myeloma found early!!!!,young and fit!!!! Children to keep you going!!!!,
Learn all you can,this will give you confidence ,and I am sure lots of people will come on and tell you,you will get through this,and be there for many years to come,ask any questions,lastly welcome to the roller coaster.Eve
Thank you for your positive words Eve. I guess I've never been a 'glass half full' person but I'll try to develop a more positive outlook.
As Eve said, we all felt the same at first and a number of us have young children as well so you're not alone. It will take a while for it to sink in and you will learn to adapt. Hospital visits will become routine, fitting them in with the family will become the norm.
I am sure you will find your own way of dealing with it but it is not the end of the world and you have your children to motivate you into being positive about MM. This site is great for help and support so make the most of it.
I was 49 when I was told I had myeloma and I couldn't believe it either. Apart from the mm, being otherwise healthy, young and fit is a good starting point to be in to cope with the treatment that lies ahead of you now.
If like mine, yours was caught early, hopefully not too much damage has been done to your bones or kidneys.
That will help your body work with the drugs you'll be given to knock the mm back.
I can assure you, an mm diagnosis isn't the end of life as you've known it. Although not yet curable, it's very treatable with plenty of drugs in stock to keep you going for many years.
I had 6 months of drugs followed by a stem cell transplant back in February 2012.
I now have a totally normal, happy life and do more than I ever did before mm.
You must be positive because you can be!
Where are you being treated?
This forum is a great place to ask for help or advice. It has a mix of those caring for people with mm and people who actually have mm, so plenty of knowledge and experience to share.
Michele 🙂
I was also diagnosed with asymptomatic or smouldering myeloma last August by chance. It was a huge shock but I am still asymptomatic and have now come to terms with it by finding out as much as I could on this site and from other people here. No two patients are the same and this is dependent on many different factors but being younger at diagnosis does feel strange and also the fact that not many people have heard of it. I am monitored very closely and the only problem I have had is fatigue and anaemia which was iron deficiency and treated. I am thankful for being diagnosed early and just attend my clinic appointments and try to make the most of the time now before treatment starts. My youngest daughter is 14 and I work part time so very busy too! Hopefully you will stay asymptomatic for a long time. All the best Andrea xx
Thank you for your kind reply- it's so reassuring to know that there are others out there who 'know' how I feel. I wish you well.
Hi Chrissie Iam a lot older than you but I do have asymptomatic myeloma, so I thought I would just give a reply, it is also called smouldering myeloma, and I have had it now for 7 years, with no treatment and no bad effects. I know that this doesn't necessarily apply to you but it is a very personal disease, and we are all different. I just hope that you like me have a long spell of smouldering and like me you will only think about it when it comes to the next appointment time, and mine is in 2 weeks :-/ .Keep posting on here and you will get lots of support and you will not feel as alone. Ted
PS there is a good leaflet on this site about smouldering MM and you can download it and it helps to explain things to family and friends.
Thank you for your thoughtful words. I wish you years of good health.x
Thank you – I wish you well.
Thank you Ange- I wish you and family well. I feel the desperate need to 'nest' into my home. I plan to cut down to part-time work. Fingers crossed that we'll both keep 'smouldering.'
Hi Christine
Just to add my twopenneth, my partner Colin was diagnosed age 56, like you very fit and healthy and absolute shocker. We felt like we'd been hit by a bus!. But we got there, Colin had 7months of initial treatment and then an sct. He has been in complete remission since sct in November 2012.
Yes it's a nightmare but the medical teams are knowledgeable, skilled and work to make the condition under control. Eve's right, life's not over, just different. It is hard I know because I worry when it will come back but try to live life to the full. There will be down days but whatever you do don't give up! Enjoy your children, life is not over until its over 🙂
Best of luck with your treatment x
Vicki and Colin x
I was diagnosed as having smouldering myeloma in 1999. It was diagnosed as an incidental finding and I was asymtomatic. I had no treatment for 9 years and then had a course of CDT followed by autologous stem cell transplant. I had 3 years symptom and treatment free before having a further course of chemo on the myeloma 10 trial. Unfortunately I was sensitive to the Velcade and developed a severe peripheral neuropathy which has not fully recovered after nearly 2 years. My next course will probably be CRD (includes Revlamid) followed by a second stem cell transplant. I am now 71 and continue to live a pretty active life including foreign travel. I have found Staysure very good for travel insurance, and also Marks and Spencers.
Another newbie here ! I was diagnosed in April after two years of numb feet and other neurological issues my gp put down to stress. Young at 51 and a previously fit Commando I went for the SCT option after a brief attempt with Cyclophosphamide and Dexamethasone as I didn't relish the risk having a worsening of the neuropathy.
Just to echo the utter desolation and grief I felt initially and it still jumps on my back from time to time. A mix of surreal disbelief, anger, desolation, unfairness, sadness at times but bizarrely no fear. I am four months post SCT and now walking without sticks. I have managed a movember despite the melphalan assault and ride a Boris bike to my appointments for follow up! It's early days but I'm in remission now and another SCT in the freezer which I view as a get out of jail card to use later on.
My message is to view it as an adjustment to life not the end. Do what you can when you can and seize each and every opportunity that comes your way.Set yourself a bucket list and start ticking them off one by one.
Laugh a lot!
Love a lot!
Live a lot!
Best wishes
Steve
Hi Steve
Just to say welcome to the roller coaster,sounds if you are getting on with the job,but surprised the options you chose early,but I am sure you new why and also new the risk,at 51 is there a chance of a donor transplant !!!!!
Well spill the beans,??? To my husband there is only one commando RM Commando,the rest are just copying lol:-P .
24 years and brain washed I call it!!!! My husband has only 2 things on his bucket list,Dive the Barrier Reef in Australia and Go to Galapagos ,but not to be!!!
We both have the attitude Why worry about tomorrow and spoil today.Good Luck.Eve
The topic ‘Newly diagnosed and shocked’ is closed to new replies.
