Cytoxin Update

November 30, 2009 at 9:26 pm

Hi Ryan and Rhonda, Had my 3rd Cytoxin treatment slightly over two weeks ago. The last one made me feel quite crappy, compared to the other two. I enjoy(live for?) good strong coffee in the am. On Saturday following the chemo, my wife knew I was feeling side effects when I skipped my coffee! Then the next day, a lucky niece got my ticket to the Packers/Cowboys game. Was the Cytoxin worth it??????????????????? YES. In conjunction with the Cytoxin, I recieve the PE weekly. Well after 15 years of getting stuck with needles, I now know what a needle stick feels like! It ain’t fun either. This is my best sign that my nerves are getting restored. Given all I’ve been through, I have been stronger since September and am looking forward to this Winter and 3 to 6 more Cytoxin treatments in the coming months.
So all in all, a little short term discomfort now, and watch out later. Boy is my buckets list growing with options!


October 15, 2008 at 3:07 pm

Hi Billt,
It is interesting that you should reply to this today.
I first wrote this post on 30JUNE2007.
Since that time, I have been on a monthly chemotherapy regime, being admitted to the Oncology Wing for one full day each month, and given the Cytoxin by IV, along with Mesna, (took protect the bladder), a high dose of Zofran, (for nausea), and a steroid.
Starting back last June, I was quickly raised to the highest possible dose of 2000mg, as the 1200mg wasn’t doing anything.
I have now been given the monthly doses for 15 months. In two weeks, I will be given my 16th month’s dose, of which my doctor told me he must now stop for the winter, to give my bone marrow a rest.
My team of doctors, (I have a Muscular-Neuro, Rheumatologist, Neuro-Opthalmologist, Urologist, Pulmonologist, Primary Care Specialist, and a partridge in a pear tree), all now will be seeing what will happen after this last dose on 27OCT.
Up to this point, it has been a status quo…no better, but no worse, however my arms did weaken quite a bit, and I’ve now have an indwelling urinary catheter for about 7 months. I did lose about half of my hair, and what is left is like a baby’s hair. I now have a motorized wheel chair, as I could no longer push the manual wheelchair due to lost-strength of my arms.
I had asked that they get me through the hottest months of the year, which here in San Diego county, is June to October, with September & October being the worst. Heat affects me tremendously, and I become greatly fatigued–I sleep many hours when the heat is there, as I am so weak.
Two years ago this past summer, two of the doctors on my team, told me I had about two years left to live. So, now I guess I am on borrowed time.
We shall now see what is to come for the winter…will I still keep a status quo without chemo, or will I decline some more. …We shall see…