Eleven weeks after my last infusion of Kadcyla my body still seems to think I am still receiving treatments. Some of the side effects still occur about the same time they did when I was getting treatments. They are not as severe, and do not last as long, but they happen almost like clockwork.
My energy level is pretty much back to how it was pre-cancer. Sleeping has never been one of my superpowers, but it got worse when I started getting the infusions. It is sometimes difficult to fall asleep, and sleeping beyond 6:30 in the morning is late for me. Even though I try hard, my body very rarely lets me nap.
The brain fog is almost gone. It feels terrific to be almost back to my normal self. Not having so much brain fog so nice, but it also means my obnoxious self comes out more frequently. Now Craig must deal with me not agreeing with him all the time again. On the good side, I am better able to control my temper. It is easier to keep myself from getting angry and frustrated.
The migraines at the back of my head still bother me. They are not as frequent, nor as painful, but sometimes I need to take acetaminophen for them. At least I haven’t needed any migraine medication.
Flulike symptoms, chills and body aches, still show up. Just when you think you may be free of them, they hit you. At least I know I am not really sick, and they usually only last one day.
A few of my fingernails still have issues, but most of them are almost as hard as they used to be. I am proud to say I can now open soda cans on my own! The vertical ridges on the nails are more pronounced on the left hand, the side where the port was placed. Maybe because that is where the drugs got into my body first?
My hair is getting much longer! It is now completely salt and pepper and very curly. I kind of like it like this. It is so much easier to take care of LOL When I think the eyelashes are back to where they were they prove me wrong. They do not completely fall out any longer, but the length comes and goes. Sometimes they look good, but then they will be short and stubby again. Right now they are pretty. They will hopefully stay that way now.
The dry skin will take a while longer. I still get cracks on my hands and feet. Filing the feet and slathering lots of lotion on hands and feet help a lot. The body being so dry affects more than just the skin. Nosebleeds are not as common as they were, and bleeding from the rectum (TMI - I know, sorry) still happens occasionally. I believed the blood from the rectum was because of hemorrhoids, and sometimes it is, but it also happens because of the dry skin.
The dryness does not only affect the skin. My glands have not been making a lot of saliva. There is a lot of postnasal drip, but my mouth has been very dry. It is finally to the point where my tongue does not stick to the inside of my mouth, so I have stopped using Xylimelts while I sleep. I also stopped using eyedrops a couple of weeks ago. The eyes are no longer dry, and they don’t hurt!
My fingers still have some neuropathy. Mine were never painful but lost much of their feeling during the treatments. After the infusions were finished, they started tingling, and now I mainly notice when I touch the fingertips with the other fingers. It feels like it does when your legs “fall asleep.” The toes are worse and may never completely get well, as I already had issues before the chemotherapy. They are not bad though. They feel like the fingers but a little more severe. Have since heard that wearing compression socks help with the neuropathy. If someone has tried this, please let me know. Might try to start wearing them now to see if it will help the healing.
They say chemo has a long tail, but you don’t realize exactly what that means until you are going through the strangeness of having side effects from infusions you are no longer receiving.
*UPDATE June 1, 2025*
It is tiny, but my hair is long enough for a ponytail! I am super excited! It is very hot and humid where we currently live and it feels good to get the hair, even if it is not very long, off my neck some days. Even though the left eyelashes still have some issues, the right ones are great, and the left will hopefully follow suit soon.
My cute little ponytail!
What my hair looks like now, if you can see that and not the cutest little chihuahua puppy that I am holding 😍
My skin is not as dry, and the salivary glands are working like they used to. The neuropathy is still there although not as bad. My fingers still have some numbness, but not as much as the toes. Foot massages help however, and because of where we live I can get a one hour massage for less than $7, so they will happen weekly. Maybe I should add the hands to my weekly massages to see what happens. My brain still has a little way to go before it is back to normal, but it is functioning so much better than it did. On April 13 I received a priesthood blessing and I have not had any serious headaches since then. That is a big deal to me as they could be miserable. As a whole I am very happy with how I am progressing. Especially since I no longer feel the chemo "side effects" every three weeks. Life is good!
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