[grannyjannyParticipant]

Hi,
I am new to this forum & I guess I am looking for some optimism? My husband was diagnosed with smouldering myeloma in 2015 which progressed to active disease in 2017. He had 4 cycles of VTD, 3 of DT-PACE followed by an ASCT. His body was literally left ‘battered’ and he has not been able to work since. He has to use a stick to walk due to peripheral neuropathy, and feels like an old man! He had a couple of years in remission then relapsed last year. He then had daratumamab with velcade & dex which he had a really good response to, but since the maintenance dara his paraproteins have risen again. Now he is in a huge amount of pain & starts levlidomide & ixam with dex tomorrow. I am really hoping this works & gives him some respite.

[heyshParticipant]

My husband was diagnosed at the beginning of this year, he is 76 so unable to have SCT and like your husband he is in a lot of pain mainly in his lower back. They are looking at fitting him with a brace to see if it will help his walking as his mobility is bad but hoping it will improve with the chemo. He is on VCD, 3rd cycle of 6, and up to now he has responded well but I do know it can change. However, there seems to be a lot of treatments out there and it is just sometimes finding the right combination. If you are on facebook you should join the Myeloma UK Support Group, there is a wealth of information on there and they are so supportive. I do wish you well and hope that your husband starts feeling a bit better soon xx

[manuParticipant]

At the age of 67 two years ago I was diagnosed with MM located in my spine. I was in total agony for a number of months unable to walk without the assistance of my wife, it was so bad my grand children would not visit as it upset them to see their very active grandfather in agony. I had a cycle of VTD over 6 months after 4 months my consultant was waiting to see my wife and myself, I thought it was bad news, but she told me the myeloma had almost disappeared but I was still in pain walking with the aid of a frame. Following from that in late January 2019 I had my STC. Eventually I was able to walk around again and in fact I now go on walks in the countryside where we live and play golf again. 3 months ago my consultant set me on a course of maintenance medication Lenalidomide. A check up this week confirmed my bloods were perfect as my consultant remarked. It was not easy when lying in bed with any movement resulting in agonising pain but I was determined not to give in.

[grannyjannyParticipant]

Thanks to both of you for your replies. It just gets you down at times, and hard when you can’t do anything to help. Glad to hear things are on the up for you both & hopefully my hubby will start to improve very soon. I will definitely check out the Facebook site – thanks for the tip.

[sachbarnesParticipant]

Hi, can I ask why they switched to DT PACE, had his papaprotein levels plateaued, or was it due to the side effects, or both? Judging by your initial I assume the switch helped bring them down to remission levels.

Dad is in a similar boat and about to finish cycle 4 of VTD, and they are saying they might switch to DT PACE because of the side effects they think Velcade is causing, including eye infections, burning feet sensations, etc. His paraproteins have also levelled off after initially falling a lot in the first 2 cycles.

Thanks for any feedback.

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