[susantrParticipant]

Hi everyone

Well after much deliberation I decided to take Revlimid maintenance. Now 2 weeks after taking it I was reviewed yesterday for bloods etc. Today I received a call from the hospital and I have been asked to stop taking it as my ALT has risen to 146. Has anyone else experienced this and how did you proceed? Does this mean that when I do relapse that it’s one less drug which can be used? Any advice would be welcome.

Sue

[peterlParticipant]

Yes,  my ALTs raised to 1400 – my other liver bio-markers went haywire, body turned yellow, bladder and bowel functions unmentionable — was admitted urgently to hospital, and taken off ALL drugs immediately for 2 weeks.  Had a dozen blood tests both by veins and arteries, and all proved ok.  Revlimid was proved to be the culprit for the deranged and very serious liver failure.  Have now been taken off this.  Am  back on CDT.

Peter

[susantrParticipant]

Hi Peter

Thank you for your response. You really went through it. So often I read that it’s not the myeloma that ultimately takes ones life, but it’s as consequence of the treatments we take to keep the myeloma at bay. We are all caught between a rock and a hard place. I was in a dilemma whether to take the Revlimid or not, but after my consultant advised it does prolong overall survival I chose to take it, but all the while being at odds with my own thoughts. Now I have been told I have to stop that’s a whole different curve ball. This means that not only has Revlimid been taken out of the cabinet, most likely so has Pomilidomide, I hadn’t really thought that I would have to stop the drugs because of their effects, only that I would stop them if it impacted on my quality of life. I am still early days (18 months) into the disease, so still uncertain how the myeloma is going to behave. Im glad your results improved, but it must have been a scary time.

Sue

[peterlParticipant]

Hello Sue,

Thank you for your post. Yes, it was pretty awful.  When I was admitted to hospital, my young and very able consultant was very concerned – I could tell by the look on his face!  I must have had a dozen blood tests, some of which he did via arteries, which the he told me, the nurses were not allowed to do.  But as I said, all these tests proved okay – and that left Revlimid.  In a way, some of it was my fault, because I should have gone back to oncology a lot sooner, before I got so sick.

My liver did eventually recover, but now Revlimid is now off the table forever.  To be a bit more positive — with the rapid development of MM drugs (notwithstanding NICE), there is every possibility that a new replacement drug will be in commission soon – let’s hope…

Best wishes,

Peter

[Author]

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