[jenjamParticipant]

Hi all

I never thought I’d find myself here. I have had a brief look and your posts have already helped me to be more positive.

After suffering leg pain for about six months which developed into lack of movement, my GP referred me for some tests. Fast forward to Thursday 18.2.21 and my life changed forever.

The consultant told me they had found myeloma and were referring me to oncology. The world stopped.

I am 42, relatively fit with three children aged 8, 10 and 12 and the thought of not being here for them is just unbearable. I also read the five year statistic but have decided to try and put that out of my mind now as so many of you have proved it wrong.

I have a PET scan booked for tomorrow morning and my first oncology appointment booked for next week where I hope I will get more of an idea of treatment plans etc.

The consultant did say it had been caught early and was very treatable which is what I am trying to focus on.

Thank you for this place. I feel that I will be here quite a bit in order to be around people who understand what I am going through.

I would appreciate any help and advice that you may have. Thank you.

[robert0439Participant]

Hi there. The good new indeed is that you have been caught early and you will realise with time that this is the best thing – under the circumstances that is.

I too was caught early and was “smouldering” for 3 years before I actually started any treatment as my Paraprotein levels had started to increase to a level where they through it prudent to start.

I won’t sugar coat it as the treatment and then the stem cell transplant, followed by recovery is debilitating. The good news is that you are young, fit and have 3 children to spur you on. It does take 12 – 18 months out of your life but for me, it has worked great, as 3 years after the SCT I am in full remission and enjoying life to the full – well under Covid as much as anyone can, but feeling positive and looking forward to summer.

Dig in deep, pull out all the stops, have your family around you so you can share the down times, but also share the good times – and there will indeed be good times.

You will be in the wonderful hands of the NHS, so you could not be in a better place. They will all have your interests at heart, so take my very best wishes and run with them and I know you will have the success that I have had in kicking Myeloma into touch.

Kind regards,
Robert

[rosaryParticipant]

Echo Roberts comments, the advances in treatments for Myeloma have been amazing

You asked for Help and advice

1. Diet and exercise – stay in top shape
2. Record all you calls with doctors and consultants – amazing what you miss live
3. Look at Healthtree.org – healthree University has some very helpful videos to take you through this step by step

The recent announcement that Revlimid has been approved for use in the NHS ( in England ) is fantastic news for newly diagnosed patients – keep an eye on this when the time comes for them to tell you what your treatment regime will be

Everyone will tell you Myeloma is different for us all but I have found I have been able to live a near normal life ( I was diagnosed 2019 ) and I recall being very spooked when I was first told so sending you my very best wishes as you navigate this…..

[jenjamParticipant]

Thank you both so much for taking the time to reply. I really appreciate it.

Once I have had some appointments I will hopefully know what is ahead of me and what I am facing.

I already feel stronger than I did two days ago so that is good.

Thank you for giving me a boost and for your positivity.

I’m sure I will be posting again soon with more questions.

Thanks again.

[alexandraParticipant]

Hi Jenjam
My heart went out to you when I read your post, It’s so frightening especially when you have children.
I was diagnosed 2 years ago at the age of 43 and I can remember clearly how it felt that my world had come crashing down around me.
It’s good to hear that they’ve found it early and it will give them time to work out the best course of treatment for you.
I know it doesn’t feel like it now but things will feel normal again. It takes a long time to get your head into a place of acceptance.
I’m really positive about the future now and don’t allow it to dominate my life. My daughter doesn’t even think about it anymore.
There are so many success stories out there and when you do get to meet others with Myeloma it will really help.
Stay strong and know that your not alone.

[mulberryParticipant]

This diagnosis is soul shaking for all of us, all the more so if you have young dependent children. There is a Facebook group for under 50s with myeloma, sadly you are by no means alone.
In terms of prognosis, bear in mind that the peak number of myeloma diagnoses occur in the age group 85-89, in which case a survival time of 5 years would be perhaps pleasantly surprising. The average age at diagnosis is getting on for 70. Actually the prognosis for under 50s who are diagnosed is better than for any older age group. Myeloma is more like (& may be) a collection of very rare diseases of the plasma cell, and although NHS/NICE have standard treatment pathways (at the moment) our symptoms at diagnosis and responses to treatments vary widely. The positive thing about being diagnosed now, as opposed to any time in the past, is that there are more new treatments and targets for treatment being trialled and approved, than for any other cancer. There have always been a few patients who have lived for more than 20 years with myeloma, but there will be an increasing number who do now we have access to many types of treatment. Already 14% of myeloma patients in USA have lived with the disease for more than 20 years. The survival statistics that we read online includes the very elderly patient with lots of other health issues 14% of whom die within 2 months of diagnosis, tilting the statistics & terrifying the rest of us, who really do not have
such a dire outlook. Survival statistics are by their nature out of date when novel treatments are available, and we do need to wait to see how we respond to treatment before anyone is in any position to offer a meaningful prognosis. ( I was scared witless by my GP who said I could be dead in 3 months, then alarmed by my diagnosing haematologist who said she’d still be seeing me in 3 or 4 years. I was diagnosed 3 years ago and am in Complete Response (“remission”) after a stem cell transplant 2 years ago and in excellent, pain free health. I don’t know how long this period will last, but I expect to be able to have many more treatments in the future) You are in the world of myeloma for the long haul though and it’s worth having a specialist myeloma consultant if that is feasible, they are found at the bigger regional hospitals. As myeloma is pretty rare, and has numerous subtypes, it is worth asking how many myeloma patients your doctor is treating, as you will benefit from seeing someone who is seeing plenty of other myeloma patients. If in ANY doubt about your diagnosing Dr, you can ask for a second opinion from another doctor of your choice.(You can get information online about haemo oncologists with an interest in myeloma in your area). I am so glad that I did this even though it felt “disloyal” to the diagnosing doctor at the time.

[jenjamParticipant]

Thank you all so much for all of your advice.

I had a phonecall with the oncology nurses who told me that my scans were being discussed today and that on Wednesday I will be given a clearer picture of what happens next.

I already feel so much more positive then I did this time last week and I credit my family and friends for that.

I really hope that the outlook is good and that I will be around for my children for a long time.

Thank you again.

[shaun3Participant]

Hi JenJam,

like so many of the other wonderful people tht have posted here, I was diagnosed with MM too. Mine was almost 3 years ago now aged 53. So i’m a bit older than you. I think we all know tht awful feeling especially in the early days as you start to adjust. I cried like a baby but then life went back to normal quite quickly. I continued to work and here I am 3 years later in remission (MRD-). Human nature is amazingly resilient and you will find positives in all this.

The advice above is spot on. I chose to go down the allogeneic stem cell route. I was only able to do tht because I was (otherwise) fit and healthy. Exercise and good eating/living are things I’ve always been fortunate to do. I can’t run anymore, due to two compressed vertebra, but I exercise everyday (yoga and road bike now).

The next thing tht has been really beneficial was actually a bit of a lottery. I was fortunate to live near to a hospital with a Myeloma specialist. It’s so important to get advice from a consultant tht specialises in Myeloma. Even within the myeloma community there are conflicting views about how best to treat it. So get second opinions and use the MyelomaUK team and website to form your own views.

Finally, I would advise you to challenge your medical team. Read up on things, find academic articles about Myeloma and work with your medical team to find the right treatment options for you. In the US they have a number of key Myeloma experts tht are very good at tweeting their views and the latest new initiative for managing Myeloma. We also have some World renown experts in this country too. Find out who they are and then seek their opinions too. I love Mulberry’s statistic above tht 14% of sufferers in the US have already lived 20 years or more. You might find that’s because they’re much more likely to have an allo in the US than elsewhere. But I recognise I might be biased!

There are so many treatment options out there now tht many experts are now saying tht Myeloma is a chronic disease. There might be no official cure but there are many more options available now than there were just 5-10 years ago.

Sending all positive vibes your way

Shaun

[bearParticipant]

Shaun is spot on! My Sheila has gone 7 years and currently on Daratumumab having had VTD only – no stem cell stuff – and then DVD, and she runs five miles a day to show other 62 year olds it is possible. Read up on things, and yes, learn about the disease and its treatments. Some consultants do not like being challenged (they refer to us as “Doctor Google”) but others welcome you becoming engaged and discussing treatment. And look at the hospitals that engage on trials (UCLH, Royal Marsden, Royal Hallam, Kings, Manchester Christie, Manchester Royal, Leeds) have very good consultants. We got a second opinion from Dr Kwee Yong at UCLH that was very helpful whilst at our local hospital and then moved to Christie under Dr Jim Cavet.

[jenjamParticipant]

Hello all

Thank you so much for your help and support, you really did help me to calm down.

I went to my oncology appointment yesterday and unbelievably, they told me that I do not in fact have myeloma. There is no trace in my blood or urine and every other scan has come back clear.

So I am now being referred for a biopsy so that they can be sure what is going on – it is most likely cancer and they think maybe primary bone cancer as it is not showing up anywhere else but hopefully the biopsy will confirm this. So I am quite bewildered still and still waiting.

I want to thank you so much for your support and wish you all well. I will be making a donation to Myeloma UK today as a small gesture of thanks.

Best wishes to you all.

[mulberryParticipant]

Thank you for letting us know Jenjan, I hope the consultants find out what is wrong and give you a diagnosis soon and that treatment is successful.
With best wishes, and thanking you for your donation,
Jane

[DebsParticipant]

HI there. I hope all went well with your biopsy etc. Just to give you a little more hope (I totally agree with everyone above!), I was diagnosed in 2009 at age 34. We had a 2 year old and a 4 year old and I was convinced I wouldn’t see them go to secondary school. Now they are 14 and 16, answer me back constantly 😂, and drive me round the bend.
I smouldered and have had two stem cell transplants (second one in Sept 20). I’m currently on darathumumab. The NHS is a wonderful place if you’re at the right hospital….if you aren’t, my one piece of advice is to move to one that you have faith and trust in.
Keep fit, and my only piece of advice is to find something that you can keep control of. For me, I got into fundraising for Myeloma UK and it has been my absolute lifeline.
Good luck and if you need to chat further, feel free to get in touch
Take care
Deb

[DebsParticipant]

HI there. I hope all went well with your biopsy etc. Just to give you a little more hope (I totally agree with everyone above!), I was diagnosed in 2009 at age 34. We had a 2 year old and a 4 year old and I was convinced I wouldn’t see them go to secondary school. Now they are 14 and 16, answer me back constantly 😂, and drive me round the bend.
I smouldered and have had two stem cell transplants (second one in Sept 20). I’m currently on darathumumab. The NHS is a wonderful place if you’re at the right hospital….if you aren’t, my one piece of advice is to move to one that you have faith and trust in.
Keep fit, and my only piece of advice is to find something that you can keep control of. For me, I got into fundraising for Myeloma UK and it has been my absolute lifeline.
Good luck and if you need to chat further, feel free to get in touch
Take care
Deb

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