Side Effect Reprieve

1st chemo visitI never tolerated pharmaceuticals well, not even the simplest over the counter types. It kept me away from being a pill taker and led me in the direction of ‘natural medicines’.

But, since I began meds for sarcoidosis, I have a great track record for getting most of the side effects of most of those meds.

I am meticulous about researching every med that is prescribed. Being an informed patient is important to me.Why than, am I always surprised when my body gets hijacked by a side effect? I suppose trying to keep a positive attitude that this will be the ‘magic’ med, only thinking of the good that might come of it and burying the bad.

The thing with meds is, you don’t know until you know. There is no prediction, no safeguarding, and no way to prevent your body not tolerating the med. There may be ways to mitigate after the fact, such as, lowering dosage, discontinuing use, assigning another med for a med, or bite a stick and tough it out. In my personal opinion, all these options suck.

You can imagine after years of getting bad side effects, a person could grow a bit cynical and self protective, maybe even hyper sensitive. So I was pleasantly surprised when, it appears, the universe has given me a break on my Cytoxan experience. It is week 2-3 after my first Cytoxan infusion and I haven’t had any discerning side effects.

Nausea is very mild, no mitigating drugs needed. Pain has been worse on some days but nothing a seasoned sarkie can’t handle. Quite a few of the side effects of Cytoxan are also sarc symptoms so hard to tell, really. Hair thinning but no excessive loss. No bladder or kidney issues at this point and lab work looks like it should.

Hard to believe I am tolerating the most toxic drug I have ever taken, but, I will take this gift and appreciate my reprieve for as long as it lasts.

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2 Responses to Side Effect Reprieve

  1. Anonymous says:


    How ’bout an update on your status? Lot of people thinking of you and hoping to hear from you.

    • lanasamm says:

      Thank you someone for asking! That just sounds funny when you read it aloud. Well here goes, Absolutely nothing good OR bad with 1st 3 infusions. 4th infusion I am still on the roller coaster everyday, BUT, I have more creative energy like my brain is working better. My body still hasn’t caught up but it is awesome thinking of what I want to do rather than what I can’t do. My thermostat which used to be stuck in ‘burning in hell’ mode is now turned to ‘bat shit crazy’ mode. It is odd to wear a sweater and comforter in 80 degree hawaiian weather but OMG , it feels so goooood. On the other hand when it drops to 64, I am back on the hot tamale train (and not the good kind). At least it’s change. I had extreme pain for the 3 days before my 5th infusion this morning so I was actually looking forward to it. My labs seem to bounce back to sarc trying to kick my ass so longevity of infusions will probably play a part in deciding to go forward with more cytoxan. But my quality of life, no matter how sucky it seems to others, has been better this one month than all of the 6+ years I have been sick. So I want it to be better and I don’t want to be an anomaly that us sarkies are so used to. Only time will tell… Thank you again for checking on me as well as all the others. I will be blogging again soon!

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