My wife

EB,

Do not read anything into her timing of reactions. The main thing that can cause alarm is fever, so monitor that.   I understand you are using ABVD.  CHOP is a bit more predictable, in that the Prednisone cycle of days is fairly standardized.  But as we have discussed, ABVD has no Prednisone or steroid, so the reactions are more random.

My R-ABVD infusion day lasted about 8 hours, and when I got home around 5:30 PM, I just crashed and slept until the next morning, except for occasional runs to the bathroom to pass that massive amount of fluid.  Urine runs pink for 24 to 48 hours.  My worse days were probably 2 through 4, but memories fade.

Also, as I mentioned, after two infusions my experience seemed mild enough for me to go back to work, which lased about 2 weeks. After 4 infusions, the bottom fell out, and I just slept all day, every day.  No way I could have worked part time, from home, anything.  I slept around 17 hours every day, regardless of where I was in the cycle.... Most sleep less.

Do not read a ton into her first few days or even weeks.  Effects are cumulative, and worsen for most. I'm just being honest.

Mouth sores are common, but I never got any; I have no idea why. I did not take any special precautions for them.  Some patients develop what is called Flu-like Syndrom -- I did.  I felt like I had the flu for 5 months. Yuck, I know.

I also lost all sense of taste, not the norm, but some taste changes occur for most; the so-called "metal mouth" sensation. This by itself will reduce appetite.  I did not get "metal mouth," but rather "salt mouth": my mouth felt full of salt all the time.

My other worst reaction was neuropathy: numbness of hands and feet. This is worse in the cold.  Mine never cleared, 5 years later. Most neuropathy does clear for most individuals who develope it. Mine did mitigate a little after about a year.   And my taste sensation did return after the end of treatment.

Dizziness is less common, but does not surprise me.   Let her rest all she wants for these months. This is not fitness training time, this is live through an ordeal time.  Some writers (NOT you !) seem to think that it is "moral weakness" to get physically weak; that they have to not let the treatments affect them.  This  is an absurd and medically wrong view of things.  Prep for a marathon later.  All the sleep she wants she should get.  Expect it, and then possibly there will be nice surprises.

There is a universal truism that is worth mentioning now also.. Oncologists know that severerity of side-effects (or lack thereof) are no indication of chemotherapy effectiveness.  That is, a patient who has severe side-effects might get poor results agains the disease, and a person with no side-effects might have spectacular results. Or vice versa. Side-effects just are not linked to how successful treatments are, one way or the other.

max

I know how you feel, I am the caregiver also, my husband says he thinks in some ways it is harder on us.  I am so happy that your wife is doing so well and that you are getting on with your lives.  Thank you for the update.

Becky