[paulcjwParticipant]

Hi all

I am new on here. My husband had smouldering myeloma for 5 years that has progressed very recently and aggressively in the last 3 months. He was scheduled for the normal first line chemo treatment starting next week but we have just had a call to say they cannot do this due to high levels of cytogenics. They are going to discuss a trial with my husband this week. This is very scary and reading the internet ( I know know the best!) this is not a good prognosis. He is only 51. Has anyone been in this position?

[rabbitParticipant]

Hi paulcjw,

Welcome to the forum.

I can understand your worries. Please bear in mind that a lot of material online relating to myeloma is old: treatments have been improving, as indicated by the possibility of your husband having a trial – in other words new – treatment. Therefore the situation may not be as adverse as you have read.

As you have probably read, about 25% of patients have cytogenetic abnormailities: I am one of them. Could you please provide more detail on your husband’s cytogenetics, as there are many different kinds? For example, mine are t (4, 14) and +1q.

Regards
Rabbit

[paulcjwParticipant]

Hi

Thanks for your reply. Sorry for the late response I was waiting until we had his appointment. He is now classed as ultra high risk as he has 2 high risk – gaining of 1q and FDFR which when I have looked is t 4,14, so it sounds very similar. He starts the RADAR trial in 2 weeks.

[rabbitParticipant]

Hi paulcjw,

I haven’t heard of FDFR before, and neither has ChatGPT.

OK, assuming that your husband and I have the same cytogenetics, I hope that I can reassure you. I was diagnosed in 2022. I didn’t have a stem cell transplant, and went into remission in June 2023.

Now, in May 2025, I am still in remission and getting on with life. Currently on holiday in Greece!

I won’t pretend that it is easy. For example, yesterday the fatigue from my maintenance chemo was pretty bad, so I didn’t go far from the hotel, but overall the holiday has gone well.

Your husband’s age helps with the prognosis, and so would a healthy lifestyle (eating healthy, exercise etc).

Happy to discuss further.

Rabbit

[paulcjwParticipant]

Sorry FGFR! When I googled it it it said 4,14 which I think is the same as you. Lovely to hear you are doing so well. I am so pleased for you and thank you for being so kind to reply to messages. Enjoy your holiday 😊

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