[sarahlouiseParticipant]

Hi all,
My mum was diagnosed in 2010 and has just had to start her first lot of treatment. She is on a 6 month cycle of CTD. Her biggest fear in the run up to her consultant deciding to go ahead with the treatment was what side effects she would experience and how bad they would be. Apart from feeling extremely tired on her first 4 days of Cyclophosphamide she is feeling really well, I know it is really early days, today only being day 12. I feel like I am holding my breath waiting for the inevitable dreaded side effects to kick in. Can anyone share there experiences with me as to when/how they felt and how soon?

Thankyou all in advance.
Sarah.

[SalParticipant]

Hi Sarah,

I don’t think there is any real answer to this. Nurses and doctors can alert you to possible side-effects and your mum might or not experience them. Like everything else in myeloma, side-effects vary with individuals. My husband’s first-line treatment was 5 cycles of Velcade with Cyclophosphamide and Prednisolone. He didn’t experience any really difficult side-effects, although a lot of people get some peripheral neuropathy. He was very tired and continues to be so.  The downside is that this combination only kept his myeloma stable and didn’t reduce it. He’s now on DT-PACE, which is a much more intensive regimen. His consultant is pleased  with the way he’s coping with it, but he’s not able to do very much at all as it really knocks you for six.

It is worth keeping an eye out for any side-effects and checking with the docs or the clinical nurse specialist if there’s anything your mum is concerned about or that you notice. Some side-effects can be controlled and there’s no point in being brave if you can get some help.

Best wishes,

Sarah

[mhnevillParticipant]

Hi Sarah

I had six lots of CDT starting in March 2012. Following this I have continued in complete remission. If I remember correctly my PP levels went steadily down from about treatment number three.

Main side effects for me were thinning hair, metal taste that made food less appetising (I developed a craving for Salt and Vinegar Monster Munches!) and I got shingle which I didn’t recognise at first.

I survived it reasonably well and didn’t have the Dex days that many people describe.

Do ask if you have any specific questions.

Best wishes to you both.

Mavis

[sarahlouiseParticipant]

Thank you Sarah and Mavis for your replies, its good to hear how others have been. Think the key will be for mum to take one day at a time.

Kindest regards to you both.

[Author]

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