[davemcg38Participant]

Hi. I’m 47 and diagnosed on 12th April with Myeloma. Doctors aren’t really sharing what stage I’m at. But I know it’s 85% in infected, but my bloods are showing ok signs. I’m half way through cycle 2, with likely 4 cycles before a stem cell transplant. I’m married with two kids aged 14 and 10. My wife has been awesome and I don’t feel like I can burden her more with all my worries. Finding it hard to find a place to talk. And share how I really feel. I feel I’m in a process with no info on how I’m doing really. Just told not to think too much about it and when they have more info they will share. Is this normal? I can’t help but fear the worst. It’s completely dominating my every thought and I try not to let everyone see that. So I’m not sure what I’m hoping for here except a little bit of an outlet. Any advice would be great

[kevinParticipant]

Hello Dave
Sorry to hear your news. I was diagnosed when I was 49 and that was over 14 years ago. The mind does keep spinning initially and there is a lot to digest but I found was that when I began to process everything it began to settle down. There have been new treatments even since I was diagnosed with more on the way. Although still not curable it is becoming more treatable. I am currently in full remission and optimistic about the future.
Hope this helps a little and if there are any other questions you have for me I am more than happy to answer (if I can)
Best wishes
Kevin

[davemcg38Participant]

Thanks Kevin. Great to hear your news. It definitely helps to here positive stories and really pleased about your current situation. Just great to hear what is possible.

[shaun3Participant]

Hi Dave,

sorry to hear of your diagnosis. The early days aren’t easy. I was diagnosed aged 52 in 2018 – so a little bit older than you. Since then I’ve had two stem cell transplants (auto and allo) and I’ve been in complete remission for almost 2 years now. Sorry to also be positive but the outlook is so much better than it used to be. I fully intend to live for a very long time yet. I had about 6 months off work in total but have managed to juggle work, family and life throughout. Like you, I have an amazing wife which has been fundamental to my positive outlook. If its advice you’re after, well; find yourself a constant that’s a Myeloma specialist is my top tip, don’t read the rubbish that’s on the internet (stick to MyelomaUK, Cancer Research etc) and stay as fit as you can throughout (yoga, cycle, long walks etc).

Good luck buddy

Shaun

[shaun3Participant]

Hi Dave,

sorry to hear of your diagnosis. The early days aren’t easy. I was diagnosed aged 52 in 2018 – so a little bit older than you. Since then I’ve had two stem cell transplants (auto and allo) and I’ve been in complete remission for almost 2 years now. Sorry to also be positive but the outlook is so much better than it used to be. I fully intend to live for a very long time yet. I had about 6 months off work in total but have managed to juggle work, family and life throughout. Like you, I have an amazing wife which has been fundamental to my positive outlook. If its advice you’re after, well; find yourself a consultant that’s a Myeloma specialist is my top tip, don’t read the rubbish that’s on the internet (stick to MyelomaUK, Cancer Research etc) and stay as fit as you can throughout (yoga, cycle, long walks etc).

Good luck buddy

Shaun

[davemcg38Participant]

Shaun. Brilliant to hear another positive story. ESP after 2 stem cell transplants. That does give me confidence that whilst it might be a tough road the road could be longer than I thought. Great tip on finding right consultant. I think I have the right one. And my nurse has been great. I’m also meeting maggies soon. So hope that gives me a good outlet too.

Hope you continue to stay in remission for long time yet. Thanks for taking time to reply. It helps.

[paulapurpleParticipant]

They don’t tend to ‘stage’ Myeloma. It’s a very individual cancer and affects us all differently. For example, some people have bone damage and others don’t, some have kidney damage and others don’t. Try not to dwell on things. We are all different and it affects us all in different ways. I found it useful to get my head around it all so that I could have a more informed discussion with my consultant; the booklet from Myeloma Uk for newly diagnosed patients is very helpful and will give you a better understanding.
I had two years of treatment to get me to stem cell transplant (nothing worked) but I am unusual; most people have 6 months of initial treatment and then have a stem cell transplant using your own cells. I have been in remission since I had mine 2 years ago. Many people have been in remission for a very long time; it’s not the same as 20 years ago when there were only on or two treatments available. If you need someone to talk to, many hospitals have counselors on site for cancer patients; ask your specialist nurse.
There is a very supportive Facebook page you might like to join where you will get lots more replies than on here. Its called the UK Myeloma Support Group.

Good luck

Paula

[susantrParticipant]

Hello Dave
Everyone feels lost and alone when they are diagnosed, everything changes overnight and you normal as you knew it will change for a new normal. It’s a tough road, but is manageable. I was diagnosed stage 3, with a beta 2 microgloblin of 9.7, stage 2 kidney failure, collapse of L2/3/4 and 90% blast cells in my bone marrow. I have Lambda light chain disease. No paraprotein. I had an autologous SCT 5 years ago, achieved MRD negative and touch wood am still ok. I was off work for a full year. My quality of life is excellent. I travelled a lot before Covid. The hardest battle is in your head. Remain positive. I remember someone telling me this was a blip and things would get better. I was 51 when I was diagnosed. Good luck.

[davemcg38Participant]

Thanks Paula. Great to hear you continue to do well. It’s weird some focus on staging others don’t. I guess I just need to trust the consultant and keep going with treatment. I get update on 1st July. Hopefully that will let me know how things are going.

Thanks for taking time to reply

[davemcg38Participant]

Thanks Susan. Sounds like you had a tough time. But great to hear you managing well. I’ll be better once I get more info and see how the treatment has gone. Having more info is def better for me.

Thanks for getting in touch.

[alexandraParticipant]

Hi Dave
I just wanted to say that you’re not alone in this and trying to process it all is extremely difficult in the beginning. I know that for me I couldn’t imagine a day when it wasn’t the first thought that entered my mind.

I was diagnosed as stage 2 at age 43, this was 2 years 5 months ago. I didn’t choose to go down the route of a stem cell transplant so I’ve never got into remission but i am stable and have an excellent quality of life.

I understand how difficult it is to talk to loved ones as you feel as if your burdening them, even with friends I find the subject of cancer can be taboo and people can feel uncomfortable about discussing it.

There are so many positive and inspirational stories about people that are going through the same thing, my advice is to focus on these and not the negative ones as this works for me.

My life is wonderful now and I never guessed I would be able to get it back again. I appreciate every day and love spending time with my family and friends. Good luck on your journey and to getting back to being you again.

[mulberryParticipant]

Hi Dave
I think we all feel shocked to the core when we get this diagnosis, and spend the first part of our treatment preoccupied by the disease, the first thing we think of in the morning, and the last thing at night. One day though you’ll realise that you got so absorbed in something else, that you didn’t think about it for a while, and gradually it’ll become part of life,rather than taking it over. The thing I wished I’d realised at the beginning was that I would feel absolutely fine in the future, I’m now 3 years since diagnosis and no one would know anything is wrong with me, in some ways nothing is.
I hope you respond well to your induction treatment, & welcome to this community no one wants to belong to.

[deano7050Participant]

I’ve had stem cell transplant over 7weeks now. Am hoping all goes well. It’s a massive mental fight more than anything. I find it hard when you read people dying after only a year then next you read of people going strong after over ten years . Am praying it’s a long term thing . Don’t really know which statistic to believe

[myelomaukeventsteamParticipant]

Dear Dave

Please do not feel that you are alone in all of this!

We are the Myeloma UK Events team and we are hosting our first virtual networking Digital Infoday Session especially for younger patients and carers. I have put a link to our post below, but you will also find it in the “Under 50’s” section of the forum:

Living with myeloma: support for younger patients and carers

Or you can register on our website here:
https://www.myeloma.org.uk/help-and-support/patient-and-family-digital-events/living-with-myeloma-support-for-younger-patients-and-carers/

[marty2019Participant]

Myeloma was on my mind all the time when I was first diagnosed especially as my mother also had it. However, I found that as time goes by I am less focused on it. Two years since my diagnosis, I often go days without it crossing my mind. It’s important to recognise that the treatment of myeloma has progressed in leaps and bounds over the last two decades with many promising advances currently taking place. My diagnosis has forced me to change my priorities, some for the better.

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