Thursday, January 25, 2018

Shingles, shingles, go away....& other updates

10 weeks.........2 1/2 months.........That is how long I've had shingles, and honestly, I'm about to go run around screaming like a crazy person...except due to the shingles that would make me hurt too.   When the shingles, started they were an annoyance, but thankfully not too painful.  Just when I think they are starting to go away, I will get more sores, and unfortunately, the pain is worse with each round.  Since I'm immunocompromised, they aren't staying on one side of the body or in one dermatome.  I have shingles from neck to thighs, and it is really wearing on me.

 My oncologist said that the Afinitor, cancer drug, may have just activated them, and I may keep them while on these meds. We've tried antivirals a few times already, but they've now decided to keep me on them.   It's a little discouraging to get a 30 day dose with 11 refills.....really! (Long, loud scream in a pillow) When I hope that the Afinitor will work & work for a long time that is a little frustrating. We had already tried one medicine for pain, but thankfully we've added another yesterday that hopefully will start to give some relief soon.  I would really appreciate prayers for pain relief & that the shingles would vanish!

I try very hard to stay positive, but this cancer med, in general, is being pretty annoying with other side effects as well.     Initially, I was told if I did 8 weeks of a steroid mouthwash that I wouldn't have to worry about mouth sores anymore.  So, while it was annoying, I had hope that it would be temporary.  Unfortunately, 3 days after my 8 weeks ended, I ended up back with mouth sores that are pretty brutal.  I'm back on the mouthwash, which apparently I'll be staying on, but so far not any relief from them.  The sores mean that I have to be super careful with what I eat and any acidity or spice makes them worse.   Today, even the little bit of pepper on something was causing pain; I'm back to eating as soft and bland as possible.

The meds also come with taste changes for some foods and nausea, but at least the bonus for that has been weight loss!  There is a bright side to this medicine after all!   Since this med does target a mutation that we know my tumor has, I still have to hope that I will be on it for a long time.  I have had to cancel multiple things though b/c of both the side effects and being told by doctors that I need to eliminate any additional stress since it plays a role in the shingles. I was supposed to play in a couple of groups, and the mouth sores have made that impossible right now.  I also had to cancel some judging for solo & ensemble as the shingles and mouth sores just make that not possible for the length of time required.   Anyone who knows me knows that saying no or cancelling is not my strong suit or something I normally do, but I know that it will be better in the long run though.

My tumor markers came down over the first month and a half,  and stayed basically the same this month (up just one point).  We will be doing a petscan before my oncologist appointment next month; so, hopefully we will get a better idea of what is going on with everything. A date for that scan has not been set yet, but I see my oncologist on the 20th.

Sorry for the vent, but if you see me look like I'm in pain, now you know why.  I would greatly appreciate prayers for good results with the petscan next month along with the shingles relief.  Hope everyone is staying well and having a good week!

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