Ryan cytoxan treatment update
AnonymousFebruary 2, 2010 at 9:25 pm
well Ryan got his first infusion today. Boy that was a long day. Ken thanks for the list of meds that Ryan needed to have with teh cytoxan because it helped me to be prepared with questions and to make sure Ryan got what he was suppose to get.
Ryan got 2000 mg of cytoxan and they said it could change according to his white blood cell count. which he will be getting a blood test done next week and every week going forward.
He is feeling pretty good right now but they dosed him up on the anti-nausea meds in his IV. he got some more in pill form to take here at home. so hopefully he will still be feeling good tomorrow. I will be keeping my fingers crossed. lol
Thank you for all of the prayers. we are feeling them.
February 2, 2010 at 9:49 pm
Well wishes and prayers.
Dawn Kevies mom
AnonymousFebruary 8, 2010 at 8:51 pm
Ryan started losing his hair on a steady basis so he opted to have it shaved off rather than wait for it to fall out the rest of the way. seems weird but my husband and other son both shaved their heads to support Ryan.
Hope everyone is having a great Monday..
February 8, 2010 at 11:35 pm
My prayers and best wishes are certainly with Ryan and you Rhomcc.
AnonymousFebruary 9, 2010 at 12:02 am
Please keep us posted on a regular basis, as I am so hoping this treatment will arrest his CIDP. How often will he be getting the infusions? After getting 5 infusions in 10 days, I then had it once a month for 8 more months. I began the end of January & within a few weeks I had my beautician & next door neighbor come & shave my head. Since I had literally no use of my hands, it really made things easier for my husband at the time. But Ryan is luckier, as shaved heads are so in right now.
AnonymousFebruary 10, 2010 at 8:16 pm
I am so hopeful for Ryan and will be looking for updates when you have time. I can’t begin to think how busy you must be – I’ll add prayers for energy for you also 😮
Please take care of yourself and know that Ryan, you and your family are in my thoughts and prayers,
AnonymousFebruary 10, 2010 at 8:59 pm
It’s not easy having this stuff and it’s not any easier to go thru what he’s doing!
It’s like cancer patients, for which the stuff was created, tho. In that the short term must be worth the long term. Be sure to know all of the side effects of this med tho. It is SERIOUS stuff!
My heart and mind are with you both tho, and pulling for a super result!
I wish you both some relief in the long term, tho the short term aspect mite just not be fun? I can’t put it any kinder way. Wish I could.
AnonymousFebruary 11, 2010 at 10:11 pm
I am watching your posts.
You remember, and I hope you printed my exact details of being on Cytoxan, since I have MUCH experience with it, after being on it for almost 3 years.
The most important thing they watch for, is exactly 10 days after getting the Cytoxan, you should be getting bloodwork: CBC, CMP, CRP, and Sed Rate.
The main thing they check for is his WBC and Absolute Neutrophils.
Don’t be too alarmed–every once in a while, I would go under the normal ranges of both. They would then lower the dose of the Cytoxan of the next infusion, to try to compensate it.
Although, when I was a child, I had the chickepox.
One time when I went down to 2 for a WBC, the chickenpox virus stays in your body, and when the WBC is too low to fight off infections, it came out as shingles. Though, because I have CIDP, I have no feeling on my back, which is where they came out. The shingles are supposed to be very painful–but it wasn’t to me, “luckily because I had CIDP…lol”. But I did have to take some special pill that I can’t remember the name, to get rid of it.
And the Absolute Neutrophils need to stay 1500 and above, and the WBC needs to stay 3.8 or above.
When they do happen to go below, just keep him away from people with colds or infections. Until he goes back to normal range.
And at 2000mg of Cytoxan, (like I was taking), make sure they are giving him 1000mg of Mesna before the Cytoxan, and again another 1000mg of Mesna after the Cytoxan. And that they give him a steroid with it, (they gave me Decadron 6mg). And that they give him LOTS of fluids before the Cytoxan, and more if they can after it too, (NS).
If you have any questions, you can always reach me.
Hoping for the best,
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