Chronicle - Month 6 of Tafinlar and Mekinist

This month has been challenging in many ways. I've just been so tired. Like drugged tired. Took a sleeping pill tired. Crashy tired. Can't-think, tired. 

In addition, the joint paint has continued. At times it also felt like my left wrist not only had pain and a lump in it, but needed to pop and I just couldn't pop it. But all of that is usual, and comes and goes at times.

As my doctor suggested, to reduce the negative effects of long term steroid use, I attempted to taper  down on my prednisone from 15mg to 10mg. The steroids had caused weight gain (highly unusual for me) and have potential for many other side effects. For example, back in July, they caused cataracts after a high dose was used to lower my calcium.

I did a very slow taper. First, I went to 12.5mg for 5 days. Even with that tiny reduction, I experienced raised body temperatures and increased body aches. Then I went to 10mg on day 6. However, this resulted in a relapse of the fevers and extreme fatigue. I was forced to go back to my previous dosage of 15mg. This fixed the fevers within a day or two. But the fatigue and body aches lingered.

In fact, now that I think about it, this was the start of the bad fatigue for me this month and has lasted approximately 2.5 weeks now. It started with the steroid taper.

And I recall a similar fatigue that lasted this long back in November when I had high fevers for a number of days then. I think it wore my body out and took me weeks to recover from that long of fevers. I was this tired for about 3 weeks then. 

With the fatigue, I have had entire weeks this month where I couldn't get out of bed, I was so tired. And it's a non-functional kind of fatigue. I cannot keep going or push through. I call it crashing. I can't think or function and must lay down and sleep. Even writing this has me unsure if it makes sense.

Nothing will help it but a nap and even then it's not a guarantee it solves it. Many days I was this tired all day, even after a few naps. 

I was having to take Tylenol a few times a day at times this month due to body aches being so bad.

So overall, I've been stuck at home a lot. Unable to do much on most days. Mostly from the fatigue. I have upcoming doctor appointments that I will struggle to get to for this reason and will need a ride to for this reason.

But I am thankful I am not having to pause treatment due to fevers, thanks to the steroids. I have been on Tafinlar and Mekinist straight since Dec 8th, so for about 7 weeks. I think the longest I have ever gone without a need to pause is 8 or 9 weeks. So I am close to that record. 

It's possible some toxicity is building up in my system causing the fatigue to be more extreme. Or I am just recovering from reducing the steroids and experiencing the fevers for a few days.

I am hoping the profound fatigue stops soon and instead is like many other side effects - it comes and goes. Time will tell.

Outside of those few things I haven't had too many side effects other than minor skin issues such as eyebrows falling out some, some days I lose a lot of hair in the shower, dry skin making wrinkles appear more, peeling skin, some itching, and some acne type breakouts on occasion. 

Perhaps there are things I am forgetting to mention, but that's the bulk of it. 

This time, by the way, I go for my CT scans 3 months after the January scans, so in April. In the past it was 2 months and then 3 months only due to pausing so much. So that's a good sign. I will report back in April on that, of course. I still see my oncology team and do labs every month, though. So there will be those updates in the meantime.