[EJBonesParticipant]

Hello,

I was am 28 and I was diagnosed with MM ISS stage II on 20 August this year at UCH after suffering from severe back pain for 3 months. My initial symptoms were assessed by my GP as a torn or pulled rotator cuff, however as the pain increased I was sent for tests and I was admitted to UCH on 14 August with a calcium level of 3.5. Whilst in hospital, my doctors discovered that in addition to the lesions, I had also fractured my L4 vertebra and on 23 August I was transferred to the National Hospital of Neurology and Neurosurgery where I had a kyphoplasty the following day. I started my treatment on 28 August, returning to UCH, where I am now an outpatient receiving treatment at the Macmillan Centre. I am on a clinical trial and I am now in the middle of my second cycle.

The last 6 weeks have been a steep learning curve for me as I have come to understand my diagnosis, as well as manage my treatment and it's side effects. I am fortunate enough to have a wonderful medical team, and the support I receive from them and from the team at Macmillan has been wonderful and I have confidence that it will continue that way as I progress through my treatment.

I have been blogging about my experience since the 22 August. I am finding the blog to be a cathartic outlet for me and also a great tool to explain the highs and lows to my friends and family. I am fortunate in that I have an amazing support network behind me, who are with me every step of the way. As the blog developed, I have started to receive comments from other cancer sufferers, saying that my words help them through their day. The address is ejbones.wordpress.com and I would encourage anybody and everybody to read it. I have found since my diagnosis that support and awareness for people in my age group does not match the support for others and it is encouraging and humbling to me that my blog helps others in the same situation.

I have also found the guidance on this website most useful in understanding MM and I thank the charity for that.

Thank you for reading,
Emma

[BellaRSParticipant]

Hi Emma!

28 is very young to get this. I was 37 when diagnosed, but I'm luckily still smouldering only. I joined the under 50s group so that I could get additional advice and support from others who have young kids. If you want to join us, please email Scotty s.hawkes@added-value.com We have a few other bloggers there.

Bella

[VickiParticipant]

Emma

Just wanted to say hi and that you are a real star in dealing with this from such a very young age. Wishing you all the luck in the world with your treatment. Will have a look at your blog. My partner Colin was diagnosed age 55 is on myeloma 11 trial and waiting for an SCT.

Keep your chin up 🙂

Vicki and Colin x

[docmikeParticipant]

Emma,
welcome
I am sorry however that at the age of 28 you joined under such circumstances .You have clearly tackled the adversity head on with your blog and are under the care of a very good clinical team .But despite this support, this forum should provide you with the extra help from people who know exactly what you are thinking and experiencing ;the people and their carers who themselves are on the myeloma journey ;the people who really understand . Very few of your contemporaries at the age of 28 can really understand the implications of the diagnosis of myeloma .Though sadly it is my impression that the incidence of myeloma is increasing especially in youger people having been previously considered to be a disease of a more aged population (<60yrs ). I perhaps should explain that I am a doctor of 64 wih smoldering myeloma of 4 years duration.
I hope the kyphoplasty was succesful in reducing the pain . I would be intersted to know what your experience of that procedure was like (as i suspect many others would on this forum.)Again I get the impression that this procedure is not widely available and indentifying a centre with experience /centre of excellence would be helpful for others.
Good luck with your treatment (?rollercoaster effect of steroids ?)
best wishes Mike

[AlexBParticipant]

Hi Emma.

I'm 39 and I feel cheated – it's a tough think to face up to, and yes, a lot to take on (I was diagnosed in July). Definitely get yourself into the under50s by emailing Scotty. There are a few of us youngies around, which is reassuring.

[HelenRParticipant]

Hi Emma,
Great blog – I just had a look! I recognise a lot of what you're saying. I'm 33, also on the PADIMAC trial (as is Alex who also just said hi), also a civil servant, even have a May birthday 🙂
Hope your treatment goes well. I started in June and have finished the chemo bit, having the stem cell harvest quite soon. Happy to answer any questions if useful. I'm not on the forum too frequently as I prefer to think about other things whenever possible, but I did spend hours trawling it at earlier stages – and like you say there's not enough for younger myeloma patients so I would have found your blog really useful!
Anyway, the main conclusion I came to pretty rapidly, which still holds true, is to think positive – nice to think that by next year we'lll all have put PADIMAC well and truly behind us. We'll probably bump into each other in some pub on Whitehall…
Helen

[meganjaneParticipant]

Hi Emma,

It is my husband Phil who has been diagnosed with MM but I have read him bits of your blog as so many of your experiences have been similar. I am 38 and Phil is 44, he is also on the PADIMAC trial, a bit ahead of you and Alex but a bit behind Helen. If you have any questions feel free to ask, Phil has already had five sessions of radiotherapy on his legs. I hope your bad news Wednesdays soon become good news Wednesdays as you continue to respond to the treatment and the paraprotein levels continue to drop.

Megan

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