Have To Step In And Give You The Nitty Gritty On Cytoxan

Hi Rhonda,
I have been meaning to write to you about Cytoxan, but haven’t been in great shape the past few weeks.
But now that it is coming soon for Ryan, I want to tell you all about it-
the good and the bad. I have been on Cytoxan for over 2 1/2 years now.

First, he will most likely be admitted to the Oncology Ward for a full day.
(Yes-it takes a long day–I get admitted at 9am, and usually leave at 7pm.)
I have been at the maximum dose of 2000mg whenever possible, (this all depends on each months bloodwork, as if your white blood count goes to low, {anything below 3.8) or your Absolute Neutrophils go too low, (anything below 1500), your dose for Cytoxan gets lowered for the next month’s administration).
Does Ryan have a port in? If he doesn’t, your doctor should arrange for one, since it makes life so much easier with a port in, for the infusions.
For the first two hours, they will load him with fluids, (D5 1/2 N.S.).
It is important that over the next three days, he drinks LOTS of fluids.
If you are a concerned mother, (as I know you are), then ask the nurse for a copy of the orders faxed from the doctor. Every once in a while, something might get missed, and having been doing this for so long, I know to make sure EVERYTHING is on the order sheet, as if something is missing, then I tell the nurse, and they simply call the doctor to get the correction.
You should show on the order sheet:
-D5 1/2 N.S. @ 200cc/hr x 2hrs
-The dose of the Cytoxan, such as I get 2000mg
-Messna at a dose to match the Cytoxan, (to match my 2000mg of Cytoxan,
I get 1000mg of Messna), IV pre-Cytoxan.
-Messna at the same dose, IV post-Cytoxan
-Zofran 32mg IV
-Decadron 6mg IV, (or your doctor may opt for a different steroid)
-Port flushed with Heparin.
—
Now the reasons for these other meds with Cytoxan:
-Cytoxan is extremely harsh on the bladder and the kidneys. Messna is used
to protect the bladder and kidneys. That is why they give it before and
after the Cytoxan infusion. This is also why it is important that he drinks
lots of fluids over the next three days.
-A side-effect of Cytoxan is nausea. Most doctors will infuse 32mg of Zofran
with the Cytoxan administration. And will usually give you a prescription to
take at home, but usually only 4mg or 8mg per dose, every 6 hours as
needed. I also have another anti-nausea med, Tigan 300mg, that I can
use in-between the Zofran doses, if I am real nauseous.
-The Decadron or steroid is to assist with any inflammation.
-And after all meds have been infused, they usually hook me back up to
the Normal Saline bag, and finish out more fluids, as I said above, they make
sure you get plenty of fluids.
This lasts all day long. I go to a very good medical center, and all the nurses know me there on that floor. But, do double-check yourself that nothing is missing on the order sheet. The nurses do not mind if you question something.
—
Now, when he gets home, for the next three days, every time he goes pee, it is important for him, (or if he has assistance from you), that you take some toilet paper and wipe the rim of the bowl and throw it into the toilet. Then flush the toilet twice. Then wash your hands vigorously. The nurses taught me that–he will have a toxic chemical in him. And of course it has to come out of him–in his pee–so, if it gets on your hands, you must wash them well. The nurses said that wiping the rim each time will not let anyone else come into contact with the toxic chemical. And they said the second flush makes sure it goes down the tube for sure.
—
Now, Ryan is going to have some good months and some bad months. First of all, the first day after chemo, he will usually feel totally wiped out of energy the whole day. So, he should never make plans to do anything that day. Just get lots of rest. The good months is when he will have little or
no nausea. The bad months is when the nausea is there–but that’s why you should have prescriptions at home for him. My first year of being on Cytoxan, on a bad month, I would be nauseous for maybe up to a week after.
Now that I’ve been on Cytoxan for so long, I get the nausea for 4 weeks,
right up to my next infusion, and I am losing a lot of weight. That is why my doctor is pushing me to take the Marinol now more often, (that is the pill form of Marijuana, which takes the nausea away and increases the appetite).
—
Next–EXACTLY 10 days after he gets the Cytoxan infusion, he will have to go and have lab work drawn. Usually a CBC, CMP, SED RATE, and CRP.
This will all tell the doctor what the next Cytoxan dose will be, with the aim of watching the white blood count and Absolute Neutrophils. Don’t be too worried if his red blood count runs low too, as if that gets too low after a long time, then they just give him a couple of units of blood–but that rarely happens.
—
Cytoxan will work very well for many people, and for many people, it will put the CIDP into remission. For me, it was a last-ditch-effort. I did not put me into remission, but it slowed down my progression of the CIDP. Before I went on Cytoxan, three years ago, two of my doctors said I had about two years left to live. Then I went on the Cytoxan, and last year, my neuro told me that he thought the Cytoxan added about another two years of life. But there are risks involved with Cytoxan–too much destroys the bone marrow.
And I knew that ahead of time, as now my blood labwork is coming in way low. But my choice was to either let the CIDP run fast through my body and I die of that, or to use the Cytoxan for this long, which slowed down the CIDP alot, but that now it is wiping out my bone marrow for being on it for so long. At least it gave me more time.
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So, Rhonda, I hope I was able to help you know what to expect, and I do hope this will work WONDERS for Ryan. But I had to tell you both the good AND the bad with Cytoxan. And as I mentioned above, ALWAYS ask to see the orders faxed over to them, as I have caught it twice where something was accidentally missed on the order sheet. Accidents can happen.
Take care,
Ken
(KEDASO)