[lafleckParticipant]

Good morning. I’m new to this but wonder if someone can offer reassurance perhaps. My husband was diagnosed with MM in January this year. Within a week of diagnosis he commenced 16 weeks of VTD. Unfortunately, as this was ending he became quite ill, where he was hospitalised with AF and an elevated diaphragm was also diagnosed. The doctors treating him feel this was a side effect of his treatment. So more drugs for the AF and the elevated diaphragm appears to be a permanent state of affairs. 3 weeks ago he had a session of cyclophosphamide ahead of a very successful stem cell harvest 10 days ago. He is soon to undergo some routine health screening ahead of a planned return of his stem cells in early July. He really hasn’t been well since the cyclophosphamide and I was wondering if anyone had experience of this time in their treatment. His appetite remains pretty nonexistent, he feels shivery most of the time, his stomach feels gripey pretty constantly…. the list goes on! Interestingly, his hair and beard have only started to fall out in the last few days. We are quite concerned that this general malaise he is experiencing might jeopardise the treatment planned for next month. When did others feel ‘better’ post the cyclophosphamide? Thank you

[davidainsdaleParticipant]

Hi Lynne

Sorry to hear that your husband has myeloma and is suffering just now with the treatment.

The nurses on the Myeloma UK helpline are a great source of advice and I would certainly advise speaking to them. If it is anything to do with myeloma, they have probably seen or heard about it before, if not they will find out!

I was diagnosed in 2013 ( age 59) and had the CTD initial treatment which included cyclophosphamide.( 10 lots of 50mg once a week). I felt pretty rotten during the treatment, weak muscles- fluid retention – lethargy, but it is hard to pin down what causes what. I can say though that once the treatment stopped I did see a fairly quick improvement, certainly within a couple of weeks. I tried and keep as active as possible even if it was struggling to walk short distances.

I also think you have to be careful trying to draw comparisons because the dosages and timings can vary.
Hope this helps and your husband improves soon. Good luck with the stem cell transplant.

David

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