I’ve been on the new lower dose of Revlimid for 4 days.
After having three very bad reactions to revlimid at 20mg which involved being hospitalised once because I really was very ill I was very reluctant to try again. What puzzled both myself and my consultant is that last year I tolerated revlimid fine with no contra-indications at all, the difference we agreed was the the dose was only 10mg and so she wanted me to go back to 10mg but I said “no, not happening” revlimid really had made me very ill including my BP dropping to 70/50 which made me feel awful and I honestly thought I was going to die. On top of this there was the pain in my spleen, it was absolute agony and it came in waves that were so sharp it took my breath away, no, I didn’t want to repeat that.
My consultant then suggested that perhaps an even lower dose of 5mg might work for me with the issues I have had. I actually want to get better and this will be the now 4th time I have had treatment and I know the difference it can make to me so I put on my big girls pants and said “go for it”.
I started on it 4 days ago and because of the bad reactions I have had in the past I know what the signs of another are and what to watch out for, the first is my blood pressure it’s only when it’s really low do I start to feel ill so I have a BP monitor and I am able to monitor it, I took my BP before the 1st tablet and it was normal at 123/70 and stayed that way for the first few days then on day it dipped, but not too drastically and recovered enough that i am still taking revlimid, the “danger” zone for me is a systolic of below 100mmhg, it had come close to this benchmark but hadn’t dipped below it and had fully recovered by day 4 .
The other issue was the was pain in my spleen, those first 3 reactions it was unbearable and even morphine wasn’t taking it completely away but thankfully it took the edge off, I can only describe it as what I think being stabbed would be like, it was a very sharp pain that was constant and if I happened to breath in deeply or cough it became excruciating and would take my breath away making me gasp and pant like a dog on a hot summers day.
The pain came back on day 1 about 2 hours after I took my dose for the day, but it wasn’t like before, it was at a much, much lower level and was about as painful as a pulled muscle and compared to before much more bearable, it stayed with me all day and thanks to the consultant prescribing me morphine sulfate (zomorph) 10mg capsules (taking one in the morning and one at night) meant I was able to function as the pain was being very much kept under control and at quite a low dose of zomorph as well. I would wake up the next morning completely pain free then around 2 hours after taking my dose for that day it would return.
So that’s where we are with my treatment at the moment, once a week I go to the hospital for my rituximab infusion, and the revlimid i have to take for 21 days and then a 7 day break and repeat,this is my life for the next 6 months now and I hope it works like it has in the past and puts me back into remission.
A very early sign something might be working is that for the last 2 nights I haven’t had a night sweat, I might be counting my chickens before they have hatched but these sweats have been daily for months now sometimes even 3 or 4 a night waking me up and to have even 2 days free from them is such a relief. But, as I said, it’s early days yet but long may that continue.
I will continue to monitor my BP 4-5 times daily and as long as that doesn’t drop and stay dropped I will carry on with revlimid, same with the pain, as long as the level doesn’t increase I will tolerate it.