[val72Participant]

I have recently had my first relapse for multiple myeloma, after 18 months of remission. I am on Lenalidomide (tablets for 21 days, then 7 days off) plus 3 bursts of dexamethasone and a low dose antibiotic which is a fairly new concept, but has apparently been found to increase the effectiveness of the chemo.
I have every confidence in my medical team, who explain things very clearly. Apparently I will stay on this regime, though possibly on a lower dosage (currently 25mg lenalidomide) until it stops being effective.

I was wondering if anyone has been, or is, on this treatment and if so, for how long, and how long any remission lasted.

[avantrompParticipant]

Hallo Val
I was put onto lenalidomide, when diagnosed in 2010, at 7.5mg, on the same regime as you. My original dose of 10mg. was too much for me. I then continued with the same dose as maintenance for the next 7 years until it was no longer effective. My pp never went below .5gr.l/tr. My only problem with lenalidomide was persistent diarrhoea. Get back to me if you have any questions.
Annette

[val72Participant]

Hi Annette
Thank you for replying so promptly – and with such a fantastic response to the lenalidomide! I’m sorry that it is no longer effective for you and hope the next regime works as well as the first.
I am 71 and rejected the possibility of a SCT in 2017, as the consultants were ambivalent about how I would cope with the very intensive chemo at my age and whether the probably 3 months of being unwell would outweigh perhaps a year extra remission.

I hope I have a similar response as you did. The light chains were very high (6600) and I was very anaemic, but the blood tests are showing that things are moving in the right direction, which means that there is less room for the nasties. I’m not sure of the paraprotein level, but think it was around 17.

I think I have been put on a high dose initially to tackle the MM as quickly as possible, so that I don’t have any more bone damage. I suffered 3 fractured vertebrae and several fractured ribs 2 years ago and had a vertebroplasty for the one vertebra which hadn’t compressed too much. I lost height and I am losing weight at the moment, but eating ok so I’m not too worried.

[avantrompParticipant]

Val
Good luck with your further treatment. I am shortly starting with daratumumab and am looking forward to seeing the result. We are lucky that there are so many different treatments available now.
Annette

[val72Participant]

Hi Annette
From what I have read, the daratumumab has a very good response rate, though the infusion seems to take a few hours to administer, especially for the first couple. I think some people at the clinic I attend have been on it and they are checked every half hour to ensure everything is ok.

The very best of luck with it. I will be interested to hear how you get on. As you say we are lucky that new treatments are becoming more available.

Best wishes

Val

[val72Participant]

Hi Annette
Have you started the new course of treatment yet and, if so, how is it going?
Hope it all works out well for you.

I may have some bone damage to my hip, so I have had a series of X rays today. Fingers crossed that it’s nothing too bad.

Best wishes
Val

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