Cocktail anyone…?

So… I was invited to take part in a clinical trial for the treatment of myeloma.

The trial is a randomised comparison between the currently used combination of drugs and a newer, hopefully more effective set. The main benefit of being on a trial is that I will be very closely monitored and supported and any issues which arise will be addressed quickly, which is very reassuring.

I think I was lucky being (randomly) chosen to be on the newer combination, which is abbreviated to RCD. I guess time will tell…

R = Revlimid (lenalidomide)
Revlimid is a derivative of Thalidomide, which some will recall caused shocking birth defects in babies in the 1960’s, so they give out a lot of warnings about the risks of being/getting pregnant and I had to take a pregnancy test before being allowed to take the drug.

It is called an immunomodulating agent, which means it affects the way the immune system works. It is considered to be a therapeutic breakthrough in the treatment of myeloma. I take this every other day for three weeks out of four. I then have a week off, which allows the white blood cells to increase again, as the drug decreases their production.

This drug has the longest ever list of Very common, Common, Uncommon and Rare side effects. I read the Patient Information Leaflet and finally had to just laugh, because the side effects could include just about any possible symptom imagineable, including death!

For me, the side effects are quite unpleasant… dry mouth and skin, especially my lips chapping; shaking/trembling internally; severe clamp-like headaches; dizziness; runny nose; a bitter taste in my mouth which affects my appetite as everything tastes bitter/wrong; and tingling under the skin, mostly in my hands, feet and around my mouth and nose… a bit like being constantly very mildly electrocuted, or the feeling when a dentist’s anaesthetic is wearing off. To me it feels like when you shake a bottle of pop and it just waits there fizzing before you take the top off.

It is these side effects that I am finding the hardest thing to deal with at present… harder than the back pain or the fatigue which comes from a double dose of anaemia.

C = Cyclophosphamide
Cyclosphosphamide is a chemotherapy drug. I can only take this part of the cocktail once the level of creatinine in my blood stabilises below a certain level. This will mean that my kidney function has improved to a point where it can tolerate chemotherapy. I have been told that the drug is used in a very mild dose, which may make me feel slightly nauseous, but thank goodness, I will not lose my hair!!!!

D = Dexamethasone
I have already mentioned the steroids in my previous update. I take these every two weeks for four days. I am now on my second batch of them and this time, they do not seem to be making me too manic, although at 04:30am I have now been awake for about 3 hours and not showing any signs of sleepiness.

I do however feel much stronger, less breathless/fatigued and more able to take part in life. Yesterday, I went out for a country drive with my friend in the afternoon, had a drink in a pub (tomato juice – not alcohol!) and was able to eat a decent-sized portion at dinner in the evening. I am hoping to visit a friend’s ceramic exhibition in Sheffield tomorrow, providing I’m not too tired from tonight’s insomnia.

My specialist nurse has promised me (and keeps promising me) that the first eight weeks of treatment are the worst and that it will get better.

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3 Responses to Cocktail anyone…?

  1. Megan Williams says:

    Side effects sound pretty awful. They may subside in time. I had that trembling inside feeling for about three weeks when I first started taking symbicort (inhaler). but it has completely gone now that by body has adjusted to it,


  2. Deb Gascoyne says:

    Hi Jet,

    Just thought I’d say hi as I’m currently on the Myeloma XI trial too and on revlimid (though am probably about to come off that and move onto velcade). Good luck with it all!!

    Debs x


    • Thanks Debs. Good luck with Velcade. I have no idea if that’s a good thing or not. I’m too new to it all just now to understand or even try to get my head around all the variant treatments. To be honest, I don’t really want to know. I guess that may change as time goes on and hopefully, as I recover “myself” a bit more, but for now, I’m just surrendering.

      Jet x


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