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Hi Ashes,
wow it's been really hard to get back to you, my login was incorrect so I tried calling cancer connections and they were going to help me put we got cut off, then they changed the website and when I tried to find your message I couldn't, all sorts of stuff got in the way.
Anyway finally I can respond to your message.
My husband was 59 when diagnosed, also very healthy and it was picked up in a blood test he had for going on a cruise. Lucky we are told, unlucky that he has it though.
he has been in one trial with Daratumabab (don't think that is spelt right) and that reduced his levels and they have stayed down since.
it is a waiting game as you would know, thankfully he has a great specialist and she does lots of blood tests (trial requires it but she said she will continue) and she rings with results so he is not waiting until his next appointment.
what you said really hit home though so, we have booked a holiday to Bali in feb for our 40th wedding anniversary and also later in the year another trip. Wanting to do things while we can.
we moved to the beach a few months ago as well as it was our long term goal which we decided to bring forward. Also our daughter, husband and 5 kids moved from Qld back to adelaide to be close so, a blessing that we now have all 7 grandkids and both our children close by.
some days I forget that he has this cancer and other times I feel devastated that I may have to live with out my best friend. I know I need to think about now but, it's hard not to think about the future and what it will bring.
I am sorry to hear of your situation, it's crap and totally unfair. I would like to believe that it's great that you have lived longer than they expected but, I wish you didn't have this cancer at all and that your life was great.
Thank you so much for writing to me and please write again.
Caryn
Hi Caryn, my partner (41) has been battling multiple myeloma since 2013. He went into remission for a couple of months but the last 2 years has been a constant battle to get a chemo treatment that will keep it at bay. He is about to start on the last chemo treatment they have available at the moment having exhausted the other options for now.
We've experienced all the ups and downs of the various treatments. Like you say some days you wouldn't know he was sick and other days he's barely out of bed. You never know which person you'll have with you on that day. As the person caring it is tough not being able to make any firm plans based on the day. If a treatment is working and having effect though this does improve so these are the times to make the most of if possible.
I'm also in Adelaide so if you ever need to or want to talk please let me know.
Hi , My husband has also recently been diagnosed with Myeloma. He is a relatively fit and healthy 63 year old. He was having routine blood tests where something odd showed up so the dr ordered more tests. He then referred us to a Haematologist. Scary stuff i was sure his results would be fine and he would have pre myeloma. But i was wrong. His results put him on the bad side, just. He currently has no symptoms so they have basically told us it is now a waiting game. He has to get tested every 3 months to check his levels. The next haematologist app. is scheduled for the second week of June Where we find out whether his levels have stayed the same or increased. My emotions are all over the place. , I’m terrified and grateful he has no symptoms, but this waiting game is taking its toll already. I’m wishing for years of the waiting game with no symptoms. But at the same time checking test results every three months with baited breath sounds terrible. We didn’t tamely our Children, 25 and 27 until we had the confimed diagnosis from the haematologist. We haven’t told anyone else as my husband although very social is also very private. That was hard for me initially as i really wanted to talk about the situation. But i decided that i wouldn’t tell my best friend as she might struggle to keep the secret. So i started talking to a Psychologist. Being able to talk about it with someone neutral who doesn’t know him has helped a lot.
Hi Karyn, I just realised your post is from 2016. How is your husband going. For your and my sake i’m hoping to hear he has had improvements and is still around would be interested to hear more of your journey as we are just starting that Joirney in 2025
Hi Karyn, I just realised your post is from 2016. How is your husband going. For your and my sake i’m hoping to hear he has had improvements and is still around. I would be interested to hear more of your journey as we are just starting that Journey in 2025
Hi my name is Kerrie 👋
I have multiple myeloma, first diagnosed with MGUS in 2008 I was 48 & devastated! My Doc said to me “it will probably grumble along for years like smouldering but not quite “ I ended up with Non- Hodgkin Lymphoma, had treatment for that until 2013, now I’m free of that 🎉and the myeloma just grumbled along, ear infections omg they were the worst, & your teeth hurt, had to get ten of them out 5 at time, that was fun, sickness, fatigue, I would get weird stuff, like foot n mouth 🤷🏼♀️ my platelets survive at around 20-50 my neutrophils are constantly harassed my white cell counts are crappy you guys now the stuff I’m talking about ! I’m 17 years in, I’ve had a stem cell transplant, my immune system is the same age as my grandson 😁 which is pretty cool but also a hazard because he’s at school he gets everything ! This is the first time I have been in remission. my doctors words ‘ Nil Cancer detected’, for 17 months now this has been the case ! There is always a bonus, I wake up everyday!
My story is to hopefully give someone some hope ! I had none! Now I live my life it’s getting harder I won’t lie but I turn 60 next year & to be here to celebrate that was my goal from very early on! Even tho I’m in remission I still have to have chemo every week to stay there but there’s hope ! It makes me sick 3 sometimes 4 days a week but there’s hope & the smile on the faces of my grandkids when they see me is priceless ! Honestly I don’t usually share, could be the steroids ( treatment day) In 17 years I have never met another person with multiple myeloma it would be nice😁
You can achieve what you want out of life, you just have to do it differently what works for you & you can live with it.
Please feel free to get in contact 😁