[jackie2026Participant]

Hello All
I had been suffering from a bit of sternum pain on and off when doing certain things.
I put it down to an old injury when I had carried something very heavy over my chest in 2019.
Last year I was doing my parents weekly food shopping which aggregated it all again.
After a while it was hurting when I coughed or sneezed, but I assumed that it would go away.
I eventually when to the GP in November, January and February before they took me seriously.
A second Xray showed that I fractured a left rib, which is still causing me problems (plus a lot more pain in my chest area not right at all). Original incorrect diagnosis was chest cartilage inflammation.
My Serum Kappa Light Chain was 806 giving a ratio of Kappa/Lambda of 115.
My liver function test was deranged with particularly high ALP 265 and bone profile ALP 262.
From my googling it seems I would have multiple myeloma with possible extramedullary.
Quite a shock and the ratio seems severe and extramedullary more complicated.
Has anyone had similar results and what treatment did you have?
Many thanks in advance
Jackie

[rabbitParticipant]

Hi Jackie and welcome to the forum.

A quick introduction: I was diagnosed with myeloma in 2022, had treatment and have been in remission since 2023. I am NOT a medical professional.

As your Googling indicated, I think that you have myeloma.

Your kappa light chains are sky high (suggesting specifically kappa light chain myeloma – the same as me) and your liver function test results are consistent with bone lesions. Your rib fracture is also consistent with that.

I had even higher kappa light chains (a few thousand!). I don’t remember anything about liver function, but I did have hypercalcaemia (the myeloma leaches calcium from bones into the blood).

The next step would, I anticipate, be likely to be a biopsy. A sample, typically from the hip bone, would be taken for analysis. Also there could be a scan.

You asked about treatment. If myeloma is confirmed, typical treatment is often:
– Daratumumab
– Velcade (also known as Bortezomib)
– Thalidomide
– Dexamethasone.
However, many new types of chemotherapy have been developed and approved in the last few years, so you may get a variation of this.

However, the more important message is this: even though this is a huge shock, and right now it probably doesn’t help that you are in limbo until the diagnosis is probably confirmed, you can get through this!

People live long, long lives with myeloma these days. The treatments can be highly effective (and if one doesn’t work so well then another is likely to work much better).

Since going into remission, I have been working, going on holidays, exercising and generally enjoying life.

You are not alone!

Please feel free to post messages here if you have anything that you want to know.

Regards
Rabbit

[blobgobParticipant]

Hi Jackie,

I too went through the sneeze and break another bone phase for a short while before my Multiple Myeloma was diagnosed in 2021. I was in particular pain when I sneezed as I had a lesion in my sternum which cracked when I did a particularly large sneeze one day! Doctors used to think I was having a heart attack, and I got used to quickly explaining it was just the severe pain caused when I sneezed. I used to dread the next sneeze coming along………

I had the treatment described above by Rabbit, 5 cycles, after which I was in remission and feeling a lot better, and during this treatment my lesions healed and I was able to sneeze again without pain. I found this treatment not too bad, it was certainly better than the way I felt due to my MM being Stage 4. It all came on so fast, a few months of feeling a bit funny, then going downhill fast after that.

I then went on to have a Stem Cell Transplant a few months later. The first week after that was awful, but then I started to get better, and here I am now five years on.

I’m on a daily dose of 10mg Lenalidomide, 21 days on a week off. And twice a day Acyclovir.

I feel fine most days. I get a couple of tired days each month, so I just adjust what I do round that when it happens. I retired at the same time as my MM diagnosis, so this helps with being flexible.

So there is definitely hope for you if indeed you do get diagnosed with MM.

Best wishes,
Derek

[lynn16Participant]

Hang in there! I was diagnosed in November and have just completed 4 times 4 week cycles of chemo and am now preparing for the stem cell transplant. As soon as the chemo started I began to feel better and the drugs are very well tolerated. I still get some pains around my ribs but nothing like what I was experiencing before diagnosis. The treatment is a long haul but do-able. I was told to take one day at a time and listen to your body. Good luck!

[jackie2026Participant]

Hello again

Thank you for all of your replies, it is very reassuring that others are in the same boat.
My Consultant said that I have four years left, which I thought was very harsh.
I have an MRI on Wednesday for my spine only for now, even though my Sternum seems to be my main issue.
My symptoms seem very progressive from doing my parents shopping last year until now.
I have got a private consultation on Wednesday, which I am hoping will be more positive.

Jackie

[jackie2026Participant]

I saw the private Consultant today who happens to do some NHS work as well.
The Consultation was the difference between night and day.
He explained everything in great detail including the importance of the biopsy.
He also is organising a full body MRI within two weeks.
My spine one shows lesions, but not serious in terms of the structure.
He said he has many patients who he looks after they have lived about 12 years plus.
Plus he spoke about his RADAR trials.

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