[silverParticipant]

My mum was suffering from headaches and vomiting so went to her local GP on Tuesday this week. By Friday (today), she was diagnosed with multiple myeloma (stage 3) which has affected 60% of her plasma cells and caused significant kidney injury. Her symptoms started 6 weeks ago but apart from that, she hasn’t had any other major health issues. She is 65 years old, healthy weight and was doing regular exercise.

She is starting the first cycle of treatment today, I think Velcade, Thalidomide, dexamethasone and Daratumumab. She’s also on a drip feed with Rasbuncase. The doctors said the main objective is to get her kidneys functioning again. She’s staying mentally strong and positive but she doesn’t want me to visit until we know how she responds. She wants to conserve all her energy to focus on the treatment. I’m going to find it hard being apart from her, but I respect her approach (she’s always been like this). She has been messaging me a lot and I’ve been on speaker phone listening to the doctor’s diagnosis, making notes and writing them up for her clearly. She has appreciated that.

I don’t know what I’m looking for right now but I can see how supportive this forum is. I guess just hearing from people who understand multiple myeloma and the treatment process is always useful. Thank you for any supportive messages and general advice on how I can support her.

[rabbitParticipant]

Hi Silver,

Welcome to the forum.

To start with a bit of info, the four classic symptoms are:
– hyperCalcaemia (high levels of calcium in the blood).
– Renal failure (kidneys stop working).
– Anaemia
– Bone pain.
They are known as CRAB for short.

In your mum’s case, the cancer cells have taken calcium from the bones, which has leached into the blood (hypercalcaemia), which ovrrloads the kidneys (renal failure).

The chemo that your mum is on (which is more or less standard) should kill off a lot of cancer cells relatively quickly, which would deal with the hypercalcaemia and let her kidneys recover.

Although I am only a layperson, I went through this around the time of diagnosis.

You don’t mention bone issues (pain or fractures) and you say that she was doing regular exercise. In those circumstances, I would suggest encouraging her to exercise as best she can, when she can, rather than conserving her energy. It is really tough doing this, but the rewards in terms of both physical and mental health can be enormous.

She can get through this and so can you.

Having myeloma, and caring for someone with myeloma, can be hellish, but most of us on this forum know what it is like and can give lots of support and advice.

Regards
Rabbit

[silverParticipant]

Thank you rabbit, appreciate your reply.

She is in good spirits and walking around the hospital block whenever she’s free from the IV. The doctor said it’s too early to tell about her kidneys, but her vitals (blood pressure, heart rate, oxygen) are all good. I hope to speak to her consultant early next week. She mentioned her ankles are a little swollen from water intake, but otherwise, she feels good and has energy.

Do you know what we can expect over the next few days, particularly in terms of side effects? I want to manage expectations and mentally prepare for how this drug might affect her, even though she is feeling positive now.

Thank you again for any advice.

[rabbitParticipant]

Hi Anne,

You ask about chemo side effects. These can vary enormously from one person to the next. The single most common side effect is fatigue: don’t be surprised if she sleeps for a while during the day.

The dexamethasone can cause sleeplessness at night. When my kidneys failed, I was going to the toilet every hour or so at night, which further disrupted my sleep.

You mention swollen ankles: i had that too. My feet also swelled to one size bigger than normal (and I happen to have huge feet to start with!). The consultant can prescribe something for water retention.

There can also a bit of mental confusion in the early days: that eased off as my body acclimatised to the chemo.

I would not understate the mental health aspect. A diagnosis like this is so tough to take. Family support (and if applicable, religious support) can help so much.

Regards
Rabbit

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