[alanrParticipant]

Hi Jennya. I’m on 15mg lenalidomide and have been for about 6 months, 25mg for a year before that. I’m usually driving so don’t notice travel sickness but I did feel a bit that way on the train recently. However I’m on a cocktail of heart drugs as well, with low blood pressure, so I can’t necessarily blame lenalidomide! I am prone to more light headedness when I have just started a new cycle of lenalidomide. Not sure this helps you! The effects of these drugs seems to vary by individual

[alanrParticipant]

Hi. I started on IRD last October, but 2 weeks in had a heart attack, so I had to come off for 4 weeks! I had just been diagnosed with angina, but I do find the chemo regime does play with my heart and I am never as good at the start of the week when I have my Dex and Ixamobib. My sleep problems are mainly on a Monday night, but sometimes it’s no problem, so it’s erratic. My heart rate does seem to go up then so that may be the cause. My Dex has been reduced to just 4mg, but I still feel the difference after I have it. I have now developed quite tender finger tips, rather than just a loss of sensation. The IRD has worked in bringing down my light chains from over 1000 when I started to about 200 two months ago – getting light chain results seems a bit unpredictable. Other side effects seem less than with the VTD that I started with, not so much loss of taste or appetite and not so shaky. I was also taken aback when I found it was an ongoing treatment, but I hope a lower maintenance dose will have less effect. At least on a pill regime I don’t have to go into hospital for infusions, so I can have more of a normal life. I only managed about 3 years after SCT before I had to start treatment again, so everyone is different and I guess side effects are as well. Good luck.

[alanrParticipant]

Hi KH. Thank you for your good wishes. I saw a cardiologist last night and he is treating my angina with medication to begin with, and will then check if the ablation has worked if the meds don’t sort me out. He is not keen on using stents because there would be a high risk of clots if my blood thinners had to be stopped as part of myeloma treatment. Anyway it is some progress!

[alanrParticipant]

Hi Terry. Almost snap – I’m 72 and diagnosed in October 2018! Thank you for responding. I held off replying because I was seeing a cardiologist privately last night and thought I would see what he said. He is planning to treat my angina with medication, and if that doesn’t work will do an angiogram to see if the original ablation is still OK. He is not keen on using stents because if my blood thinners need to be stopped for any reason I will be at high risk of clots, but we will have to wait and see. I have had high ferritin levels and he wonders if the breathlessness might be caused by high levels of iron in my heart, because the heart function seems OK. We are looking at doing a special MRI scan of my heart to see if that is the case. Anyway, it is some progress and I have a way forward. I hope you manage to get your condition sorted. Best wishes, Alan

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