Today at the clinic Charmaine got her pic lines removed from her chest. For months 3 lines have had to be flushed daily and a new dressing put on once a week to prevent infection. She was very fortunate to have never had an infection, which is very common with an open line going into your skin.
Now she can sleep in different positions and take a shower without a plastic bag tapped to her chest. All of you reading this that have been through this know about these things.
She has developed a rash on her face that has consistently gotten worse. We saw a Dermatologist today and got meds for it. He is sure it is a reaction to the Sprycell . Hopefully this will go away in 2 to 3 weeks. She looks like a teenager with severe acne.
She is having a good normal day then a day of fatigue. Hopefully the fatigue will lessen as time goes on. This is a very normal side effect of the transplant. If any other families of transplant patients are reading this, please be very patient with them. The fatigue is completely overwhelming. Don't think they are just being lazy, it is very real. It's like you are so tired you can't hold your eyes open. Don't expect or demand too much from them. This is normal and part of the healing process. They will get back to normal in a while. They are under enough stress without us hassling them about being tired.
I do hope you all have a wonderful Thanksgiving. Take a few minutes alone and consider your blessings.
More soon.........................
Sam
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Sam, I've followed your familie's posts here and Charmaine's on Living with CML discussion board. I'm so thankful she is doing so well.
ReplyDeleteI wanted to offer some encouragement about Sprycel. After 8 months my liver decided it didn't like Gleevec so in early October I was switched to Sprycel. The first few weeks were awful. The first night I had severe chills and vomiting (I hate vomiting!), then chills, headaches, burning sensation on my face, lips, irritation of the mucus membranes of my mouth.
I was a mess and so discouraged because Gleevec had been working and I had so few side effects with it - other than the liver issues - that was pretty major.
I just want to encourage Charmaine to hang in there with Sprycel - it does get better! That's not to say there are no side effects with Sprycel but they seem to be manageable for most of us who take it from what I hear and read.
Good luck, I'm sending postive thoughts and good vibes your direction.
I see I already posted about my experiences with Sprycel.
ReplyDeleteObviously one thing Sprycel doesn't do is improve memory!! LOL
Still, wanted you all to know I'm thinking about you!