May you live in interesting times

Funny what happens when you Google a phrase. What I had thought was an ancient Chinese curse, turns out to be a 20th century expression with no connection whatsoever to China. Anyways, the Covid virus has me thinking that we definitely live in interesting times, from a curse perspective.

So far, my husband and I are healthy. That is good news. I’m getting caught up on some of my outstanding medical issues – some dental work and I finish off my orthodontic work as well.

Just before my last oncologist appointment, I did a bone density scan. It has been two years since I stopped Prolia and I wanted to make sure everything was OK. Unfortunate, it wasn’t. My bone density is back down to where it was when I started Prolia 4 years ago. It turn out that if you want Prolia to help build your bones you need to keep taking it, every 6 months for life. That is a lot to ask a young survivor!

My oncologist recommended that I start Zometa – which is a different bisphosphonate and works differently. The biggest concerning side effect is that they can cause necrosis of the jaw, so they recommend getting any major dental work done before taking the medication. In this case, major means anything that affects the jaw bone. Fortunately, I’ve finished the orthodontist stuff and I didn’t need any teeth pulled, so I’m good to start Zometa soon.

I am super nervous about this. Unlike Prolia which is an injection into the muscle, zometa is given directly to the vein – that is, it is an infusion that take about 15 minutes. It can cause hypocalcemia (low blood calcium) so they check your levels before the injection.

Of course this led to another level of concern. I have had lymph nodes out on both sides. I generally do not do injections into either arm. I can do a simple blood draw on my right arm, but infusion is a concern. I asked my oncologist and they are saying it is OK to do the infusion in the arm. The other option is the foot which is painful but also finding a vein can be super challenging (my last surgery they had to be a line in my neck which really sucked). So, I’m going to go with the arm.

Then it occurred to me, if I get the blood draw, then come back an hour later for the infusion, the infusion nurse will be unlikely to find a vein, as the “best” vein will have been used by the phlebotomist for the blood draw. I’m glad this occurred to me in advance, as they changed the type of appointment and now a nurse will put in a line to draw blood which can be used again an hour later (or whenever the levels come back) for the zometa. It means more time there, but one less needle stick.

I’m not at all looking forward to it. The side effects can suck. The first is flu like symptoms for up to 3 days. This is not the time to have flu like symptoms. It is going to suck – but at least I’m spending most of my time at home anyways. The second sucky side effect is bone pain. This I do not look forward to. I had horrible bone pain with Neulasta during chemo. It is not fun. During chemo, Claritin helped with Neulasta bone pain, so I’m going to try it out for this. Unfortunately the other thing that really helped me was floating in the pool with my clothes on. That won’t be an option anytime soon as pools around here aren’t open (or are only open for serious lap swimming).

OK this post is getting long. I’ll write another in a few days outlining the other ways I’m living in interesting times. Stay tuned!

Feature image by Eric Prouzet on Unsplash.

Becky
  • Becky

3 Comments

  • Hi Becky,

    I wouldn’t worry too much about the Zometa. I had it for many years for bone mets, and after the first infusion I had no side effects at all, and I had it much more frequently than every 6 months. I also think the risk of osteonecrosis is very low, when it is only given every 6 months.

    Best,

    Jill

    • Thank you Jill. I’m not sure if it is the same dose or a smaller dose. I wonder if part of my nervousness is that it will be a first infusion since chemo so it comes with it all that extra baggage!

  • So sorry to hear this, Becky. I always worry when I see a blogpost of yours coming here. I’m also thinking about all kinds of plans you had and assuming all is on hold until this passes? Hugs

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