Just to get the timeline straight my last R-CHOP infusion was mid April and I took my last revlimid in early August. I'm still having fatigue after any exertion such as going in for a port flush.
My last visit to my oncologist was August 30 and I sent an email to the study coordinator nurse (and bizarrely expected her to forward it to my doctor) in short:
I am somewhat better hydrated and have less dry mouth. Much less constipation.
My energy level is better, but if I walk perhaps 3 times in a week I will be exhausted by the end of the week. Week before last I was tired on Thursday after walking Monday, Tuesday and Wednesday. I walked on Thursday as well but only went half as far. I was tired Friday. If I don't walk I feel better towards the end of the week.
I still have headaches. They aren't as bad when I was on the revlimid or as frequent. My neck doesn't feel as bad as it did on the revlimid.
While I was on the revlimid I would occasionally feel a couple of thumps from my heart, but it was infrequent and went away immediately. In the evening several weeks ago I felt more frequent thumps that seemed almost to be an irregular heart beat. When it happened during the day I called my family doctor and he wanted me to come in immediately and gave me an ECG. The little squiggles appear to be normal, although if you look at the spikes you can see that their regularity is not perfect (as they used to be). Some of them are a bit further apart or closer together. My doctor heard some of the heavy beats when he listened to my heart. Since caffeine can affect this kind of thing I greatly reduced my consumption of caffeine and they seem to have gone away.
A couple of days ago I emailed my oncologist's nurse navigator and the following are the important parts of that email:
In many ways I have recovered from the Chemo and Revlimid but when I
went to work a few weeks ago I was able to stay for 3 hours before I
started to get tired. I came home and it was difficult to work so I
napped for two hours and felt better after that.
Last weekend I went shopping on Saturday morning and went to the
pharmacy, Trader Joe's, Whole Foods and Harris Teeter.
After I got to Harris Teeter I became tired and started to not feel
well. I know four places might be a bit much, but I figure if I can't
put up with that I'm really going to have a hard time going back to work.
The plumber came over for a few hours and we talked over the kitchen
sink which had a problem. He was only there for an hour but I had
repeated moments afterward of feeling suddenly tired until I rested.
So my question is for people with whom fatigue hangs on longer than it
should how long does it hang on?
So I will see my oncologist on Wednesday and discuss all this. They'll probably take blood (once more) and look at the results of the tests the way an Augur examines sacrificial entrails.
What will they find?
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