[Pink hair for @pink 's concert back in July]
Uuuuhm yeah I haven't posted on here for like a couple weeks so I thought I'd do a little health update. • As of now I have had 5 infusions of doxil (aka caelyx). My next MRI is in December I think but this far I haven't really noticed a decrease in pain nor an increase; I have more pain in one area and less in another, but both are not a big change.
• On the less pleasant side, side effects are starting to add up: joining fatigue, decrease in my appetite, having a difficult time eating/finding something my body accepts, bone pain, mucositis (and a few others my foggy brain cannot remember) is hand foot syndrome.
I miss being able to put tape to help my thigh and knee. My skin is getting super sensitive and I developed a side effect that causes it to be irritated and even break.
It could be worse and I still have hope for this chemo to work.
• I also talked with my oncologist about the options if the chemo works/doesn't work:
- The chemo shrinks the tumor: we basically do cycles after cycles until it stops shrinking, we give my body time to recover a bit and if/when it restarts growing chemo starts again.
- The chemo keeps the tumor stable: we keep going with the chemo until the 12 infusions limit, while looking for another treatment (I am very likely to not respond to Nexavar (Sorafenib) as my tumor doesn't really react to that kind of chemo, the inhibitors; we'd have to do a biopsy and tests before I could get it)
- The chemo is not effective: we stop it and unless something new comes up it's gonna be controlling the damages, more or less (I call it the "we're screwed" situation)
So that's where I am at the moment, and I am already feeling the scanxiety ...
• On a positive note: I now have menthol-free, kid toothpaste and my mouth hurts much less than it used to!
#healthupdate #cancer #sarcoma #desmoidtumor #awareness #doxorubicin #chemo #physio #mucositis #scanxiety #chronicpain #fatigue #hope #pink #concert #zurich #lake #switzerland #harrypotter #mischiefmanaged