[yvonne1Participant]

Hi everyone. My partner, 47 year old male, got diagnosed on Fri😢, consultation appt. tomorrow.
The initial issue was back pain, which has slowly got worse over the last 2 months and the mri on Fri has shown a few (deposits?-is that the right word) of myeloma in the Spine!
However his pain is getting worse in his lower back, than it was a week ago and he’s on more medication than then. Is this what he should be expecting? As he’s so scared he’s not going to walk again and it’s just going to get worse still! Thanks

[mulberryParticipant]

Hi Yvonne I hope the consultant is able to reassure your husband and yourself somewhat today.
Back pain seems to be the most common way that Myeloma is diagnosed, often there are fractures and a great deal of pain. The good thing is that over time and with proper use of painkillers most patients regain full function. Someone in my local support group spent 6 months in a wheelchair after diagnosis- but that was 18 years ago and since then she’s regained a very active life, including leading a hiking group. She’s had a very active life, in recent years taking holidays abroad every 2 months or so, even during COVID.
It’s always profoundly shocking to get this diagnosis for oneself or ones spouse, especially to hear that it’s not a curable cancer. However it is very treatable, and most younger patients like your husband do very well, and have long periods of stability when myeloma is not the main thing in life.

[lilibParticipant]

Hi Yvonne. I hope that you have now had the appointment with the Consultant and a few more things about the treatment have been explained.

My husband was much, much older than your partner when diagnosed (68), and I really thought he would never be able to drive again, let alone walk more than a couple of yards. I think it’s true to say that things did get worse before they got better, but we go out for walks of a mile or two now when the weather allows, and he only felt unable to get in the driving seat for a couple of months (because of the awkwardness and pain of sitting in one position).

So I hope that you can arrange things around this temporary issue, because I am sure that the back pain will diminish once he starts the induction treatment.

Best wishes to you both,

Lili

[kevinParticipant]

Hello Yvonne

Similar to your husband my MM started with severe back pain when I was 48. That was 16 years ago. My exact memory of that time is a bit sketchy. I was offered some surgical intervention which I declined. Looking back should I have? I believe after starting my treatment (CTD) the severe pain started to ease. I still have back pain issues but certainly not as bad as when diagnosed. I still do much today as I did pre diagnosis and think some of my issues are the natural aging process and still think I have the body and not just the mind of a 20-year-old. Just to say although over that period I have had 3 lines of treatment I am currently in full remission (ie no detectable paraproteins).
It may not be curable, but it is certainly treatable.
Best wishes
Kevin

[kh0305Moderator]

Hi Yvonne,
Sorry to hear of the diagnosis and I fully appreciate how scary it must be watching your partner in such pain and distress 🙁
Dad was diagnosed in 2013 after suffering with rib pain for a long time and suddenly going very rapidly downhill. It was a horrible experience seeing him go from a fit healthy 62 year old to a withered skeleton seemingly overnight! But I’m pleased to say that he’s still with us, still able to go on caravanning holidays and walk the dog and was in full remission for 7 years following his first line treatment so don’t lose hope. MM is a very treatable cancer with treatments moving forward all the time. Sending best wishes to you both and hope your partner is feeling less uncomfortable soon xx

[yvonne1Participant]

Thankyou so much for your responses, it is great reading such uplifting stories and well done to everyone who is fighting this!!
The consultation went as expected, with a treatment plan starting next week.
I’ve since read some more info, on this great page, re the pain side of things and feel we have a better understanding and whilst the pain is horrible for anyone to experience, we’ve come to realise it is to be expected, so it seems pain management is top of the list, for the foreseeable!
Keep fighting!👊🏼

[eshParticipant]

Dear Yvonne
My husband was diagnosed with MM 4 months ago and is in his initial treatment. yes it is scary learning more about the disease and it will get worse before it gets better. My husband was very much in pain during the first treatment cycle, but it got slowly better after a month and much better after 2 months. He is not 100% out of pain yet, but is able to manage a normal lifestyle.
Please remember this will take a toll on you too. You will also need adequate care and support. You need to be strong for your husband, help him with the medication. It is overwhelming to begin with to remember what medicines to take on which day, but it becomes easier.
Please reach out for support when you need it. We are all in this together.

[tony642Moderator]

Hi Yvonne,

I was diagnosed with MM 3 years ago when I collapsed due to having 2 wedge fractures in my vertebrae at T6 and T8. To cut a long story short, I am now very active again, able to attend the gym regularly and ride my mountain bike quite often.

Although the disease is not curable, being diagnosed with MM in the back is quite often treatable, and hopefully, he will regain his mobility given time. It is important that he tells his medical team all of the symptoms and how bad they are. I tried the ‘man up and get on with it’ routine, but that didn’t work, and I had to learn the hard way to tell them how it was and accept whatever help they could offer.

The main thing is to remember that some people live with this disease for a lot of years and go on to live full and fulfilling lives. Tell him to keep his chin up and stay positive. Please let us know how he is getting on.

Thanks, Tony

[yvonne1Participant]

Thank you Tony, Richard was most pleased to hear you’re back on the mountain bike..as that’s exactly where he intends to be!

And thanks again for the other responses!

Pleased to say Richard is now in control of the pain, treatment has started and we are feeling positive about the rollercoaster ride ahead!😊

[kh0305Moderator]

So pleased to hear that Richard is feeling bit better and you are feeling more positive. It will get easier and we are all here rooting for you xx

[tony642Moderator]

Hi Yvonne,

Please tell Richard that while things might look dark at the minute, hopefully with treatment and time, things will get better, and tellhim that he will start having more good days than bad ones. I know it is difficult to see the light at the end of the tunnel just at the minute, but tell him to keep a positive state of mind, and have achievable goals to reach for, such as getting back on his mountain bike, even if it is only to ride to the end of the street and back.

Please let us know how he is getting on, and don’t forget to let us know how you are coping, and whether we can offer any support that you might require. In my experience, MM does not just affect the person that gets it, it affects the whole family, so make sure you look after yourself as well as him!

regards, Tony

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