Hi Rhonda-glad to finally SEE a picture of your son.

January 27, 2010 at 7:19 pm

Okay, I’ve written to you a few times.
Please- I don’t want you to keep this in your mind that this is a “wonder” drug.
It will work with some people, and not work with others.
I DO hope it will work with Ryan.
If you want to contact me at any time about this, you can call me,
(toll free), at 1-***-***-****.
As you know, I have been on Cytoxan for almost 3 years. But the end for me as come now, as the Cytoxan has ruined my blood marrow. So, they are switching me to the very last drug they can try on me, which they said probably wouldn’t work.

But on to Ryan…
First, before anything is done, have prescriptions for the doctor for Zofran and another anti-nausea med to take in-between the doses of Zofran. Personally, I am allergic the the anti-nausea med group called “Phenothiazines”, which include Compazine and Phenergan, among others. So, I take Tigan 300mg.
One thing to note–my insurance, “Healthnet”, will only allow me to have
9 pills of Zofran per month, because they are so expensive. So, I use my Tigan more than the Zofran. When I am VERY nauseous, then I will use the Zofran. When I am regularly nauseous, I use the Tigan. Actually, after the first few days after they Cytoxan is administered, I use Tigan around the clock, to prevent the nausea from coming on. There is nothing worse than feeling like you’re gonna be throwing up all day!

Okay-so there are multiple drugs that MUST be given with Cytoxan, and I will explain below. Note-everything below is done via IV. This is why it is good if Ryan gets a port put in.
First-they usually give D5 1/2 NS (Normal Saline) 200cc per hour for 2 hours.
=Cytoxan if very hard on the bladder and kidneys. They want LOTS of
fluid in him.
Then they will usually give him 1000mg of Messna.
=This is a drug that tries to protect the bladder/kidney.
Then they will usually give a steroid–with me they give me Decadron 6mg.
=This is used to reduce inflammation.
Then they give the Cytoxan. With me, it was always at the top dose
of 2000mg. I don’t know the dose they will be giving Ryan.
=However, EXACTLY 10 days after he gets the Cytoxan, he must go for
labwork, which is usually a CBC, CmP, CRP, and a Sed. Rate.
The dose of the Cytoxan may change, depending on the results of
the WBC (White Blood Count), and the Absolute Neutrophils.
ALSO, if the Cytoxan dose is lowered, then the Messna dose gets lowered.
Then they will give him another dose of Messna 1000mg after the Cytoxin.
Then, I tell them to try to finish off the rest of the Normal Saline bag, to get more liquids into me, because I am a poor drinker.

I usually check-in to the Oncology Ward at the hospital around 9am, and leave the hospital around 7pm–so, it’s a LONG day. But, I am officially admitted to the hospital for the day, so, I lay in the bed all day, watching TV. I don’t have a lap-top, or I would be playing games on that.

Now, for the next 3 days, he must try to drink LOTS of liquids. And everythime he goes “pee” in the toilet, he has to wipe the rim of the toilet with toilet paper and throw it down the toilet, as he is peeing a toxic chemical out of him for 3 days after, and he doesn’t want anyone in his family to be touching his pee, (like his mother who cleans the toilet), or if he has any young brothers or sisters. And make sure he washes his hands with soap and water after each time, as he may get some of the toxic chemical on his hands.

I hope I covered everything. Like I said–you can call me anytime, though, I often have doctor’s appointments. If I am not here, just leave a message.
Hopefully it will work for Ryan–I do hope so.