Sorry to leave y'all hanging. I went on a planned trip to visit relatives and friends, which left me without a computer nor the time and energy to post. Now, since I'm on a plane, fully masked, with my kindle, I can judiciously reflect on this week following the change in my infusion regimen.
As you may recall, I chose to decrease the dose of steroid, in order to achieve improved sleep and concentration. The first night after infusion was just as detrimental to my sleep as when I received 2.5 times the dose. As you may have guessed, this impaired my focus and concentration the following day. The next 2 nights were not as severe, but still left me fatigued. By the fourth day after infusion, my sleeping was vastly improved, which also helped my mental capacity to form not only relevant thoughts but I may have even contributed cognitively to conversations. It was refreshing to feel like my mind was operating in its normal, witty fashion.
However, there were definitely trade-offs. Steroids are administered to ward off nausea that occurs long after the infusion of the chemotherapeutic agents. So, naturally, there are consequences to lowering this level. The nausea was definitely more noticeable within 24 hours, but I still managed to avoid anti-nausea medications until nearly 36 hours after infusion. I continued to need them for nearly a week, whereas previously, I rarely took them at all after the third day following infusion.
The other consequence that I noticed was an increase in neck pain and headaches, which hadn't occurred previously (steroids have great anti-inflammatory effects to decrease pain). Given the platelet-lowering effects of the medications I receive (you may recall that platelets are blood cells that help form clots), anti-inflammatory drugs such as ibuprofen or Aleve should be avoided, since they can cause bleeding. This leaves the options of acetaminophen (Tylenol) or some sort of narcotic (Vicodin or Oxycodone) for the headaches. Typically, I choose acetaminophen first, as narcotics can cause a "loopy", drugged sensation and contribute to nausea as well. Either way, this was an inconvenience that was easily managed.
Nonetheless, headaches recurred intermittently for 3 days. Now, it may not have been directly from the reduction in steroids but possibly hormone related. You may have heard the recent studies showing the increase in migraines peri-menopausally. Given the hormone changes associated with chemotherapy, I definitely have noted some hormonal changes. However, I'll spare the details at this time.
In a nutshell, will I stay on the lowered dose, lower the steroid dose further or go back to the higher dose? At this point, I'm leaning towards going back to the normal regimen. However, another part of me desires a trial off steroids completely, as I really enjoy the clear mind, focused concentration, and improved sleep, then I would just take nausea medications as I need. My fear is that the nausea and pain could significantly worsen, leaving me just as drugged in other ways. This is why my tendency would be to return to the original regimen, because I know this regimen has already been studied and tested to ensure the best possible results for the patient, which is how it was likely designed. If given the choice of obtaining sleep/clear thinking but increased nausea and headaches versus insomnia/disorganized thoughts but no pain and nausea, which would you choose?
I am who I am today, because of the choices I made yesterday. ~ Eleanor Roosevelt
I'm glad you were able to get away for a visit. A change of scenery is always refreshing. To answer your question choosing between nausea and headaches versus insomnia and disorganized thoughts, I would have to say the second option since I already have problems with that so it wouldn't seem too out of place, and I abhor being nauseous! Glad to hear you're doing so well!
ReplyDeleteThat's where I'm leaning too. Stick with the original regimen! I don't regret trying a change though, otherwise I'd just be wondering if it could be better.
DeleteAfter struggling with sleep for so long, I've finally made peace with it and try not to get angry. Rather, I use the opportunity to pray for people that have much bigger concerns than my lack of sleep, or I mentally plan my next sewing, jewelry, card making or gardening project. There's always something more fun to contemplate than a lack of sleep - that's what naps are for.
ReplyDeleteMy vote is option #2. I look at it this way: Nausea and pain are a negative drain on the body's energy resources, and the body needs energy to fight and to recover. Yes, it's a drain to not be able to sleep - but as Sandra said, that's what naps are for! And you can rest and not be in pain. As for disorganized thoughts, well, that's temporary, right...? ;oD
ReplyDeleteMy vote is for no pain and no nausea. :) Thank you for your updates. I look forward to hearing from you through your blog. We are all rooting for you and can't wait until you kick this thing! Big hugs!
ReplyDeleteThanks, Lori!
Delete