My myeloma pharmacy

So, recently a few older friends of mine have asked what’s going with me and my myeloma, and whether I am still on drugs!

Luckily, the answer is that not an awful lot is happening with my myeloma. I am still classed as being in ‘Very Good Partial Remission’ and my paraprotein results (the measure by which they try to monitor my myeloma), are still relatively low at just over 4.

It’s not quite as simple as being in remission though. To keep me there, I have been on a drug called Revlimid (Lenalidomide) as a maintenance therapy. After the initial period being on this, and being ill most months, they managed to get my dose to one that doesn’t lower my white blood count too much and so I take this drug for 2 weeks in 4. I honestly believe that my access to this drug, keeps me in remission. images-80I’m really lucky too that I got it on my trial as it isn’t yet available as a standard maintenance treatment as it is too expensive….£500 per day I believe! However, I’ve been in remission for nearly 5 years now, so it’s definitely done the job for me.

With my recent foot breaks, I’ve now made the decision to come off my bisphosphonate, zometa. Zometa is used to help strengthen the bone but in reality what I think it does is keep building bone, but the breaking down part of the bone cycle is stopped. This is ok perhaps with older patients, but for people like me who have been on it for 7 years now, my fear is that it has made my bones a little more brittle than normal. Please note though that this is NOT a medical diagnosis….just my thoughts on the matter! It would be interesting to know how many myeloma patients out there have issues with breaks in their extremities….and how many of them are on either zometa or revlimid as I’d love to know whether the drugs have caused the breaks that I’ve suffered in the last 2 years.

Other than that, I take aspirin, and I have to take drugs for bile malabsorption. For those of you who suffer with emergency toilet needs, it is definitely worth getting checked for this latter condition, as I have to say, the drugs I take for that now keep it totally under control….so long as I remember to take them!

It’s a bit of a pharmacy of drugs but all in all, my myeloma is kept well in check and I am able to live a pretty normal life. For all the conspiracy theory on pharmaceutical companies and cancer drugs, I am very grateful for the ones that I have 🙂

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve was on maintenance until November 2018 but my figures went up so officially relapsed. I have been on dara since 2019 and had my second transplant in September 2020. Still on dara and keeping fingers crossed.
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3 Responses to My myeloma pharmacy

  1. Peter Gude says:

    My wife was put on Zometa sometime between Spring 2012 and Spring 2013. Initially monthly and then in March 2015 quarterly. Seems to help control the myeloma. We understood that it was fairly benign and merely strengthened the bones.
    Sometime around 1999, my wife had a couple of implants, rear upper jaw.
    Then about the middle of 2015, my wife started to feel pain in her jaw. Dentist did a ‘deep clean’ and referred her to a dental hospital. Long delays but we have time and why rush!
    By mid January 2016, the pain was severe, so much so that my wife made an emergency appointment with the dentist. The dentist saw that there was considerable infection and that the implants would need to be removed. They were, together with a chunk of jaw-bone and much pus and blood. The dentist drove my wife back to our home (!!!!!) and then we went to A+E.
    The jaw-bone had become necrotic; something like a bit of rotten wood on a tree. Part of the tree can be firm and living but part crumbles away. We did not know that Zometa behaves like a bisphosphonate. Neither had my wife told the dentist that she was on Zometa infusions although she may have said it was a calcium infusion.
    There is now a hole between her mouth and her sinus. The dental hospital will now undertake a general anesthetic operation to clean up the site, remove any other loose teeth where infection can linger/develop and close up the hole.
    So be careful if you have implants before myeloma! What actually happens is that the Zometa infuses the bone and stifles the small blood channels throughout the bone. This then becomes infected, particularly in the mouth, and the rest is history.
    UK dentists were circularised about bisphosphonates in 2014/5. It is a recently discovered problem. It also applies to people being treated for osteoporosis.
    Ouch! Peter


    • Deb Gascoyne says:

      God that sounds like a nightmare Peter. We were told from the early days (2010) that there was a risk due to Zometa being a bisphosphonate. Annoyingly about 3 years ago we questioned whether I should still be on it…my husband used to work in pharma and knew how they worked and was concerned how long I’d been on them. But we were persuaded that the extension of remission time probably made them worthwhile. Not so sure now! I’m so sorry your wife has had such an awful time. I hope they can get her back on track without too much pain.


      • cpbg2016 says:

        My wife climbed aboard the myeloma bandwagon in Nov 2011. Stuffed full of steroids but no laxatives. Massive constipation. Massive internal bleeding. IV blood infusions. So the stay in hospital was 5 weeks. A few days at home before returning just before the New Year for a Readymix cement lorry to fill in sinkholes in her lower vertebrae. Then back after the New Year for sundry ..oscopies. Then eventually velcade followed by an autologous SCT in August/September 2012. Paraproteins returned in May 2015 and now currently at 6.
        Your blog and others have been a source of comfort over the years. So thanks to you all. And my wife now has shingles, just to round matters off for the moment. It is tough at times.


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