[val72Participant]

I was on lenalidomide and dex for several months on my first relapse in April 2019. The side effects became progressively worse, even after the dose was reduced, ending with me being in hospital for an infection that was unresponsive to antibiotics, so needed an intravenous antibiotic and blood transfusion.
The haematologist gave me a break from chemo altogether for six weeks and he will change the treatment, probably to pomalidomide, in mid-January.
I have been much better whilst off the chemo, but am wondering if anyone else has had this change of medication and, if so, how they found the side effects. I had a bad reaction to thalidomide when I was on Velcade after first diagnosis, so that had to be stopped.
Any information would be very welcome.

[jillspikesmumParticipant]

Val, I’m new to this Forum and not sure if im doing this correctly, I’m trying to respond to your request regarding switching from Lenalidomide to something else.
I’m 59 and was first diagnosed late December 2018, just before Xmas.
Was on VDT for many months and light chain levels came down, but then stopped dropping and neuropathy in my fee was becoming a real concern as I was told it could be irreversible- so my consultant got me onto Lenalidommide. We were really pleased as we had read great things but after 4 rounds ( I think) light chain levels started rising.
So now I am on 15 mg Idarubicin (Zavedos is the registered name), along with 20 mg Dex. I take it for 4 days only, and the dex. I also take anti sickness etc.
My Consultant said its not a drug that is often used these days as its been around for some time – but it is a very good drug. I think its a case of finding one that works for each individual metabolism. But is worries me being on a drug and that is older and been superseded by newer stuff. So far I have not experienced any adverse symptoms other than ‘hot feet and face’.
I cant help with the drug you’ve been put on, sorry, but good luck!

[val72Participant]

Dear Jill
Many thanks for responding to my query. I was not familiar with the Idarubicin that you are now on. Hopefully it will work well for you and keep things under control. Myeloma is such an individual cancer and seems to cause completely different problems for different people. I had 18 months total remission after a 6 month course of velcade, just having the monthly infusions of zoledronic acid to strengthen the bones and Adcal tablets for calcium and vitamin D. I was also fortunate that I didn’t have any problem with peripheral neuropathy, which seems to be quite a common problem for people on velcade. My consultant recommended regular short walks which seemed to help.
I was very hopeful with the lenalidomide, which some people have apparently been taking successfully for years, but the side effects just kept getting worse.
One other thing I probably should mention is that my blood pressure drops quite dramatically the day after I stop taking 4 days of Dex, so the consultant has advised to lower the dose on a staggered basis, over 3 days, which has helped. If you have any similar problems (feeling faint or actually passing out which I have done a couple of times, then it is worth an ask.
I would be interested to hear how you get on with the new medication.
Best wishes Val

I have another 2 weeks before the next hospital visit, so I will see what the consultant has decided.

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