topic Re: Multiple myeloma in Diagnosis and treatment

Multiple myeloma

CarynLungwitz — Sat, 05 Mar 2016 01:40:43 GMT

So my husband had a routine blood test for a cruise we are going on and they found a reason to do more tests which revealed he may have myeloma. After seeing a hematologist who ordered more blood tests, bone marrow test, skeletal X-rays and Mri he has been diagnosed with smouldering myeloma. He has also been invited to go into a trial which starts in May. I am torn between him having a trial cancer treatment which has had good results so far and him maybe not needing any treatment for years. It has been a roller coaster ride already that only started a couple weeks ago. I am desperately trying to connect with others who I can talk to. He is well at the moment with no symptoms. Our long term goals in life are now becoming our short term goals and our daughter is moving from Queensland to live closer to us. Our son is in business with us so this impacts him greatly. I change between thinking there will be many good years to what if there are only a couple good years without symptoms. He is so healthy and has no other medical issues.

Re: Multiple myeloma

FNatalie — Wed, 16 Mar 2016 10:24:59 GMT

Hi, I don't have any info to add but I will be watching your post for any other responses as my mother looks to have received a myeloma diagnosis this week.

Re: Multiple myeloma

ashes — Thu, 03 Nov 2016 13:11:06 GMT

Hi. How old is your husband? It seems that MM in older people is in the Smouldering Form and is very much different to other varieties of MM. I was diagnosed at the age of 49 and given 3 months to live. I have had constant treatment with Chemo, Radio, Bone Marrow Transplant, various trials of different drugs. And constant pain medication. All of this has kept me alive for 8 years but I have to say that my quality of life has been quite poor during that time. I as previously very strong, fit and healthy. I am now at the stage where there are no more treatments available for me. The Myeloma is so active that it is destroying the production of blood faster than they can pump it into me. I am now on bi weekly blood transfusions as my platelet count is 2 ( should be 450) and my Hb is 58 (should be 180). My Free Light Chain level is around 1500 ( should be 19). Without the transfusions I would have a matter of days to live. The transfusions are becoming less and less helpful and at the stage where at a young age of 57, am about to go into Palliative Care. My best prognosis is a few weeks. My advice to you and your husband is to keep trying everything available. Especially since he has no or very few symptoms which is normal with Smouldering MM. As I said, I have had a very poor quality of life but most people with Smouldering MM have a decent quality. Without knowing anything about your husbands health , age etc, if I were him, I would travel and do anything and everything I could. Eat well. Gets lots of rest. Don't smoke or drink. Spend lots of time with friends and family. He could have another 10 years but its always best to live life to the fullest each day. It sounds like he is in a good position and there are many drugs that can help to maintain the MM levels and keep him living a decent life. As for you, try not to worry or despair. A positive attitude for all concerned goes a long way. Even at the end of life for me, I am NOT giving up and hope the cure or next helpful drug is just around the corner. Also, try Medicinal Cannabis Oil for pain when it gets to that stage. I have tried it at times and it is better than anything else with no nasty side effects. It's just quite expensive at the moment but that WILL change very soon now that it is being legalised for cancer and other patients. Good luck with it all. Ash

Re: Multiple myeloma

CarynLungwitz — Sun, 13 Nov 2016 13:37:49 GMT

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

Re: Multiple myeloma

Flazum — Thu, 17 Nov 2016 00:56:31 GMT

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.

Re: Multiple myeloma

pink64 — Mon, 19 May 2025 11:23:06 GMT

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.

Re: Multiple myeloma

pink64 — Mon, 19 May 2025 11:32:53 GMT

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

Re: Multiple myeloma

pink64 — Mon, 19 May 2025 11:34:40 GMT

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

Multiple myeloma

Kerrie66 — Tue, 20 May 2025 12:25:21 GMT

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 😁

Re: Multiple myeloma

Kerrie66 — Tue, 20 May 2025 12:29:57 GMT

Yep just realised old post, how is things going ?

Kerrie

Re: Multiple myeloma

Sumeet — Mon, 28 Jul 2025 12:22:03 GMT

Thank you for letting us be a part of your powerful and personal story. It’s completely understandable to feel torn between the uncertainty of "watch and wait" and the hope that early treatment in a clinical trial may offer. Myeloma can be stable for years, but each case is unique, and it's reassuring that your husband is currently healthy and symptom-free. Connecting with others going through similar experiences can truly help ease the mental load. You're not alone in this, and your love, awareness, and support already mean the world to your husband. Wishing your family continued strength and clarity in the days ahead.