Looking for a support network for younger people with Myeloma

This topic contains 6 replies, has 6 voices, and was last updated by  myelomaukeventsteam 1 week, 5 days ago.

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #139676

    jackj
    Participant

    Hi all,

    I have been reading through this forum for a while now and see some excellent discussions and a lot of support and recommendations for people which is great to see.

    I was diagnosed with Myeloma about 2 years ago now at the age of 30. I am lucky enough to have been diagnosed early and am still at the watch and wait stage. I have spent the majority of the last two years just trying to live healthily with a good diet, very active and be generally positive.

    That said I have kind of hidden away from some of the bigger decisions that my diagnosis is effecting. things like what to do with my business, do I get a mortgage, should i still have children, how do I approach relationships(my diagnosis has already in one way or another caused the breakdown of my relationship with my partner of 8 years.

    I was hoping to speak to some people in a similar situation to mine either facing these kinds of decisions now, or in the past. Maybe I can learn from someone elses mistakes before I make any more of my own.

    If anyone could point me in the right direction it would be appreciated.

    Jack

    #139678

    Anonymous

    Hi jack
    Welcome to the forum
    I am sorry you have been diagnosed at such an early age, but relieved it was spotted before it could do any damage, how did you come to be diagnosed ?
    I am 55 and have ppcl myeloma and was diagnosed in June of last year I have finished treatment and am in plateau.
    I think you raise a number of interesting points in your post which are very specific to younger mm patients.
    As I’m sure you are aware no one can tell you with any certainty whether or when your disease will become active and require treatment but what I can say is that now is the most hopeful time for any mm patient regardless of age in that there has been a large increase in new drugs to treat it, so you are already ahead of the game.
    The most important lesson getting myeloma has taught me is to live in the moment and not to fast forward myself to when this or that might or might not happen in the future.
    Decisions about having children can only be made in the context of a particular relationship, many couples have children where one partner may have an uncertain future so I would not rule out the possibility in your own mind of this happening.
    I think what I am trying to say is wether or not you have myeloma there is no such thing as certainty in life, you just have to follow your dreams and reach for your goals until an obstacle comes along you can’t get round. I don’t see you being at this point yet so you should continue with your life with a positive outlook and don’t allow your self to become consumed by things which you cannot control.
    Despite my personal situation I am leading a happy life and I know many myeloma patients at all stages of the disease who are doing the same. However it must be acknowledged that a large part to having myeloma is the emotional pressure it brings with it, so I would not rule out asking for professional counselling at any point you think you are not coping with the situation, think of it like having an M.O.T you need a check up now and again to see everything is road worthy. I have found it always puts me back on the right track if I reach out for help when I am struggling.
    Sorry if I have droned on to much but I just wanted to cover as much ground as I could in one go, please feel free to ask any questions.
    Best wishes
    Cassidy.

    #139679

    greg777
    Participant

    Hi Jack,
    I don’t often post in this forum but stumbled across your post and felt compelled to reply. I was 36 when diagnosed, coming up for 4 years ago now. So much of what you have written was relevant to me too although I was a little older and had already started a family. The hardest part for me was and still is the confirmation of the uncertainty regarding the future. In your 30s, you are supposed to be in your prime, making big plans for the future and making your mark on the world. I know the feeling of having those notions somewhat jolted. It’s good that you are on watch and wait, that is better than being on treatment, and even if it feels like a false positive, you should definitely take some comfort from that.
    The biggest advice I can give you is to delve deep down into your soul and work out what is most important to you in your life. Imagine it is all over and you are looking back, what would you most want to have achieved? Everyone should do that anyway, regardless of illness, but a cancer diagnosis focuses the mind. And whatever it is that is most important, that is where you should focus your energy and live your life doing. If making a success of your business is most important, put your energy into that. If it is relationships/family, put your energy into making that happen. If it is doing things you’ve always wanted to do, put your energy into doing them. The time now is for deep self-reflection, working out what your life is going to be about and doing those things which give you what is most important to you.
    For me, it was spending time my family and trying to make a success of that. So I pulled back
    from my career (I still work because I need to pay the bills, but I don’t let it be as all-consuming as it once was). I wrote a book because I’ve always wanted to do that. I do some volunteering as I wanted to feel like I was helping others. I must admit, I sometimes question whether I am doing the right things – for so long I was career-driven and it is hard to see peers going on to achieve what I wanted to achieve but I had to make some difficult decisions about what really was most important to me.
    I hope you find what is right for you Jack and I also hope that you stay on watch and wait for a very long time.
    All the best
    Greg

    #140319

    willjames2
    Participant

    Hi Jack,

    Sorry to hear you’ve been diagnosed so young. I too was relatively young at 41 when diagnosed with light chain myeloma 5.5 years ago.

    I’ve had CTD (4 cycles of chemo), then Autologous Stem Cell Transplant, then RIC Allogenic Stem Cell Transplant. Then treatment free and then 4.5 years later had a slight biomechanical relapse (slight increase in light chain) so 3 more DLI’s (Stem Cell top up) having my 4th one tomorrow 12th March and Ive also recently started a new regime of Carfilzomib which I have 3 weeks in every 4 for two half days.

    So all in all, I’ve been through the mill a little, however got to stay strong and positive…that’s the key. I still work full time and work around the treatment.

    This new treatment is now my new normal.

    If you need any advice, I’d be happy to help. If you want to discuss on the phone, that’s no problem, let me know and I’ll pass you my number.

    Good Luck and Onwards and upwards

    Kind Regards

    Scott

    • This reply was modified 2 years, 6 months ago by  willjames2.
    #140773

    Debs
    Participant

    Hi there stumbled on this tonight and just wanted to say that I was 34 at diagnosis back in 2009. Smouldered till 2010 and then treatment started and transplant.
    I’ve only recently relapsed and am pleased we took the decision to change the way we approached life but didn’t give up on it. We’d have had no money left if we’d gone travelling for 2 years like my husband said!!
    We were lucky that our kids were 2 and 4 at diagnosis. Well sort of lucky. We were lucky to not have to think about it too much as I thought 2 was enough. Maybe if you can freeze sperm it keeps that option open for you just in case. My husband wanted a 3rd but I told him it wasn’t fair in case I wasn’t alive to bring them up….now treatments are so much more advanced. If we had known maybe we’d have had 3 kids instead of a mental cockapoo!
    I think you just have to do what makes you happy with your decisions. Don’t let others tell you as everyone is different.
    I spend my time fundraising for Myeloma UK outside of my business which I set up a couple of years ago. I play netball and did play racketball till recently.

    Good luck with it all and here on a message if you need any support (don’t often come on here although will try nownive reminded myself it’s here!)

    #142264

    myelomaukeventsteam
    Participant

    Hi Jack,

    I know this discussion was posted a while ago, but just in case you see this reply, we have a Digital Infoday Session coming up, just for younger patients and carers. Please see the information below:

    Living with myeloma: support for younger patients and carers

    Come and join us on Wednesday 30 June, 6pm-7pm (2021) for our first networking Digital Infoday Session, aimed at those under 50 who are affected by myeloma or related conditions.

    Hosted by Myeloma UK and Shine Cancer Support, this is a great opportunity for younger myeloma patients and carers to have discussions with others who are facing a cancer diagnosis and are looking for support.

    Register to join through Zoom here: https://www.myeloma.org.uk/help-and-support/patient-and-family-digital-events/living-with-myeloma-support-for-younger-patients-and-carers/

    Best Wishes,

    Kirsty Abercrombie
    Patient Events Coordinator at Myeloma UK

    #142464

    myelomaukeventsteam
    Participant

    Under 50’s Support Group

    Myeloma UK is launching a new online Support Group specifically for those in their 50s and below. This Group will be a space for patients and carers to share experiences and discuss any questions, concerns and queries.

    Get in touch by emailing supportgroups@myeloma.org.uk to find out more and register your interest.

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