[eltryParticipant]

I was diagnosed a year ago but have refused treatment. I do have bone lesions but no pain and lead a very active life. I am very physically fit. Since diagnosis, my immune system is lower and I’ve had pneumonia earlier this year. My reluctance for not having treatment is because I feel once I go down that road, I won’t be as well as I am now and the possibility of side effects of the drugs. I really would like to hear others views on my decision as I am concerned as I may be acting foolhardy and would welcome any advice.

[rabbitParticipant]

Hi Eltry,

Whilst I would hesitate to describe your refusal to have treatment as ‘foolhardy’, I didn’t seriously consider that choice for a moment.

You mention that you have bone lesions. They are being caused by myeloma cells eroding the calcium in your bones. This would be continuing at this moment, and at some point the erosion will reach the point when bone pain will start.

The calcium in the blood is a lot for your kidneys to deal with: at some point your kidneys may fail. Treatment can prevent or reverse this.

Meanwhile the myeloma cells are reproducing. As the myeloma progresses from Stage 1 to 2 to 3 (there is no stage 4), your prognosis gets worse.

As for chemo side effects, they are generally an issue, yes, but some patients are affected more than others.

Personally, I want to be around for my family for as long as I can. As for side effects, they have not always been easy, but my chemo was recently tweaked to deal with fatigue and brain fog that had been problematic lately. There are lots of treatments out there: if the side effects of one are severe, you can be switched to another treatment.

I am physically fit too, and routinely walk long distances, cycle intensely in the gym and lift weights.

Regards
Rabbit

[jk118Participant]

Hello,
I was diagnosed completely out of the blue in March 23. No real symptoms other than pain in my sternum that I attributed to cleaning windows and blood tests to check why I was anaemic.
I never considered not having treatment as I was diagnosed high risk from the outset and began treatment within 3 weeks.
I am on the RADAR trial.
The induction phase took getting used to, the side effects did get better, and I had SCT in Sept 23.
I have to say that that for me the shock was way worse than the reality (so far)
I was in hospital for for 25 days and then stayed home for a few weeks.
I went back to work 2 days a week in Jan 24.
My treatment has just gone from 2 weekly to 4 weekly and it is so liberating, life is good. I’ve just booked my dream holiday to South Africa on Feb 5.
This cancer is so individual and no two people go through it the same way.
I’m so good at forgetting tough times and I know there were a few but so many more good times than bad.
Good luck, I firmly believe that being on the RADAR trial means I get excellent treatment and care

[tony642Moderator]

I was diagnosed after collapsing with 2 vertebral wedge fractures. I had no idea that I had Myeloma. I also had complete kidney failure and spent 12 days on ICU and then 5 weeks in hospital. I had always been physically fit and had an active life. The confinement of being in hospital and not being able to do anything was killing me. Even when I got home, I was housebound and my capabilities were very limited. I felt I had no choice but to have treatment, specifically a stem cell transplant, as for me, for the rest of my life to be the way that I was, was not a life worth living, and therefore to not have the treatment was not an option. I am now almost 6 years post-diagnosis and do not regret having treatment one bit.

Regards, Tony

[eltryParticipant]

Did anyone have trouble driving when undergoing treatment?

[jk118Participant]

Yes as I had so much pain in my sternum.
This actually improved tremendously after SCT but I did have to buy an automatic car.
The pain has gone now and I in remission.
I will always be on maintenance as I’m high risk but am feeling good

[williams34Participant]

Hi, Louiseb,given your recent diagnosis and the complexities of your case, it’s understandable you’re looking for others with similar experiences. Based on your results, here’s a breakdown of your situation:

Paraprotein Level: 8 g/L IgG kappa. This indicates the presence of a monoclonal protein, which is a key marker in plasma cell disorders.

Bence Jones Protein: The presence of Bence Jones protein in your urine was a critical finding that led to further investigation.

Kidney Function: You have borderline kidney function, which is concerning and requires careful monitoring.

Anemia: Mild anemia with a hemoglobin level of 115 g/L.

Neutrophil Count: Normal neutrophil count of 1.92.

Myeloma Cells: 30% myeloma cells in your bone marrow.

Bone Lesions: No bone lesions were detected, which is a positive sign.

Kappa Light Chain: Your kappa light chain level is 116, which is slightly above the threshold of 100.

The diagnostic criteria for smoldering multiple myeloma (SMM) typically include a serum M-protein ≥ 3 g/dL and/or 10-60% bone marrow plasma cells without myeloma-defining events (MDE)
. MDEs include CRAB criteria (hypercalcemia, renal insufficiency, anemia, and bone lesions) and certain biomarkers such as >60% plasma cells in bone marrow or a free light chain ratio > 100.

Your case appears complex due to the slightly elevated kappa light chain level, which is influencing the decision to consider high-dose therapy and autologous stem cell transplant (ASCT). The Mayo Clinic’s 2/20/20 criteria also consider factors like serum M-protein > 2 g/dL, and bone marrow plasma cell infiltration > 20% in assessing the risk of progression from SMM to active myeloma.

It’s definitely a good idea to connect with others who have been in a similar situation, particularly regarding the light chain levels and treatment approaches. Online forums and support groups dedicated to myeloma patients can be valuable resources for sharing experiences and gaining insights.

[alinaparker186Participant]

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[washington-outfitsParticipant]

I’m so sorry to hear about your diagnosis. It’s completely normal to feel overwhelmed. You’re not alone in this – connecting with others who’ve been through it can be really helpful.
Wishing you strength during this challenging time. And if you’re looking for comfort, our Classic Puff Hoodie in Grey is perfect for those moments of rest.
Take care, and feel free to reach out if you need support.

[Author]

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