AnonymousJanuary 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.
AnonymousJanuary 27, 2010 at 7:26 pm
Just a note–
Ryan will have good months and bad months–you just never know.
Good months-with little nausea, Bad months-with lots of nausea.
And what bothered me most, was losing my hair. I lost about 3/4 of it.
Many people lose all of it.
So, to prepare hime for that, what seems to help, is to get
a really short haircut. That’s what Alice did, before she lost all her
hair after getting the Cytoxan.
AnonymousJanuary 28, 2010 at 1:08 am
I was on the cytoxan protocol for 8 months back in 2003, & am writing solely from what I can remember. I was hospitalized the end of Jan from Fri-Mon & given 3 loading doses of 1140 mg of cytoxan. Then I received 2 more doses in the next few weeks at our local oncology infusion center in the small town that I live in. I was given monthly doses through Sept, when my neuro decided that I had had enough; guess my white cell counts were down around zero.
I was given Zofran & also infused with solumedrol, so I never experienced any nausea. I don’t remember feeling any sicker than I had before the cytoxan, but like Ryan, I was not in the best shape physically anyways. I did lose my hair, so when it first began to fall out, we just shaved my head. I do remember my lower legs feeling like they were hard, used to describe them as “frozen turkeys” after my infusions. This treatment does not work right away, by about March or April I could tell that y CIDP was arrested. It wasn’t until the following December that I noticed a lot of increased strength in my arms & legs.
It can take up to two years to reap the full benefit of nerves healing. Even then, nerves that are damaged in the axon part might never recover. That is why this treatment is usually reserved for the cases that are refractory to IVIG, PE & steroids, & also the worst cases. Someone who gets monthly IVIG & leads a normal life probably would not choose this route. I don’t remember having to drink extra water, but then I do drink decaf coffee all day long. I do remeber the restrictions on voiding, having to be careful…
AnonymousJanuary 28, 2010 at 12:08 pm
Thanks Ken and Pam for the info. Ryan will be starting cytoxan on Tuesday. The neuro ordered Zofran but the oncology doctor’s office called this morning and told me that they are not going to percribe that. They have an anti-nausea med they give through the IV and last for 5 days. she didn’t say what it was called but she said we would talk about it on Tuesday and we will also talk about the percription for what he needs to take afterwards at home. more than likely zofran.
They also mentioned the saline before and after too. But I am going to write down everything you mentioned Ken so I can make sur ehe gets everything he is supppose to get. I also knew about the being careful after he pees too.
Not sure how much cytoxan he will get on Tuesday but he will get it once a month for 6 months to start.
We are praying this works because we really don’t know what we are going to do if it doesn’t. Our Grand Rapids neuro suggested if it doesn’t work then Ryan might be facing a bone marrow transplant. But we don’t want to go there if we don’t have too.
So praying hard that cytoxan works for Ryan.
AnonymousFebruary 1, 2010 at 7:27 am
Hi Ryan / Rhonda, I also am praying for you! Inquire about the nausia (sp?) medicine to make sure you know what your getting. Each treatment I’ve recieved 1500 – 1600mg Cytoxin. No hair loss and no vomiting (thanks Zofran), just feel cruddy for a couple of days!
I get my next treatment Thursday, will check back on Friday/Saturday to compare stories!
AnonymousFebruary 1, 2010 at 2:30 pm
Hello—I am new to the forum, and find it very helpful, since there are not a lot of answers out there from Dr.s. My husband Lee, age 51, has had MS for 12yrs. A year and a half ago, he seemed to be suddenly declining. Everyday I would come home from work, and he would say to me, that he didn’t know what was wrong, but he was no longer able to get supper ready, and in the next month or 2, he was only out of bed to eat and use the bathroom. We went to the Mayo Clinic in Rochester, where he had a spinal, and finally a biopsy taken from his lower spine, to confirm the “onionbulbing” of his nerves. He was diagnosed with CIDP in March of 2009. He’s on his second round of IVIG (every two weeks), and we are not sure if it’s really helping. He uses a walker, and recently an electric wheelchair. We have one child at home yet, who is a senior in Highschool. Im not sure if he would be considered for Cytoxan. We go to the Mayo in March, for a check of his nerve responses and to review his treatment.
Dea —- a Minnesota gal
AnonymousFebruary 1, 2010 at 5:56 pm
Dea, sorry your husband is experiencing this illness. Does he still have MS or was it found to be the wrong dx and now he has only CIDP? just wondering because I have read before that some MS patients are misdiagnosed and really have CIDP.
Anyways when you go back to Mayo ask if he can do cytoxan but so research first. My son researched it and decided he was going to go for it. IVIG didn’t work for him and you will know within a few months if it works or not. just make sure they premedicate him first before he gets IVIG or else he will get side effects from it.
Ryan also had done plasma pheresis and Prednisone (steriod) the only thing that seem to help was the steriod but they cannot keep him on it so thats why he moved on to another treatment. Ryan has a aggressive form of CIDP he was in a wheelchair only 4 months after getting CIDP. which is unusual.
I hope your husband starts feeling better. Keep in mind if one brand of IVIG doesn’t work try another brand. I think its GAMMUNEX that is new and is not a surgar based like the others. I could be wrong on that but I think that it is.
we will be praying for your family too.
AnonymousFebruary 1, 2010 at 7:13 pm
Unfortunately Lee does have 2 autoimmune diseases. I’m also interested in the leaky gut theory. I recall before Lee was diagnosed with MS, he was complaining of a pain in his gut. The MRI confirms the MS. Some one posted about the possibility of having another autoimmune dissorder, once you have one. We’ve heard at the Mayo, tho, that this is VERY rare. We will be praying for good results for your family tomorrow!!
AnonymousFebruary 1, 2010 at 9:54 pm
Unfortunately Lee does have 2 autoimmune diseases. I’m also interested in the leaky gut theory. I recall before Lee was diagnosed with MS, he was complaining of a pain in his gut. The MRI confirms the MS. Some one posted about the possibility of having another autoimmune dissorder, once you have one. We’ve heard at the Mayo, tho, that Lee’s combination is VERY rare. We will be praying for good results for your family tomorrow!!
You must be logged in to reply to this topic.