CPE therapy
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Thanks for telling me more about her chemo infusion. You did answer some of my questions and maybe didn’t even know it. I’m so glad Cindy is doing better! That’s great. Take care of yourself too.
Carol
Hi Carol. Hi Jeff. thank you both for the kind words.
Cindy has bounced back considerably. the blood infusion really helped
and the pills she is taking for ascites, lasix and aldactone, seem to be
helping with the fluid backup. she was able to get chemo thursday and
is handling it quite well. she will get a filgastrim shot on monday. her
chemo consists of iv infusion of FU-5, heparin and oxaliplatin, then
continuous FU-5 infusion for 48 hours via an external pump.Carol, sorry your Charlie isn’t feeling better. i hope that turns around
soon and that he has a good scan. your questions are so valid and
familiar. i wish i had some answers for you. Best to you and yours.Jeff, what great spirit you have! Keep up the good fight!
Enjoy Maine. have u ever been to the lobster shack at two lights
in cape elizabeth? we went there for the first time and really enjoyed it.
Maine diner was great too. have a great time.Hi Bosco… Just finished treatment for the day. Went okay . Just a little sweaty. Go back wednesday to take cad pump off. Then start in filgrastim injecion two days after to get ready for Maine to trip to visit my Mom. Will definutley take a walk at Old Orchard beach in Saco Just south of Portland. Sure miss my home we had out in the boondocks. Glad to hear some shrinkage . Every little bit helps. When it stops move on to something else. Get them CC genes so confused They don’t Know how to react except retreat. Hope the blood transfusion helped with tiredness. It’s so hard to keep those wbc and rbc up and running but I demand on injection if I see counts going down. I really believe staying ahead of the game if possible helps. Filgrastim and Procrit and potassium I really watch latley. 5 years is great! Wishing and prayer many more to come! Be strong push and keep moving as much as possible helps prevent wasting muscles and strength.
Bless Ya!Cindy, Your doing the your best and with the help of big bro Bosco, Well it’s great he’s there to help you out.
Bless Ya Both!
JeffHi, wondered if Charlie and your sister Cindy are having the same treatment. Charlie has IV oxaliplatin once every 3 weeks and takes oral Xeloda 2 wks. on, 1 week off. He’s only had 2 IV infusions so far. I’m glad Cindy has had very little neuropathy. Charlie has been lucky that way too. This chemo is rough, isn’t it? Charlie is so tired, doesn’t want to eat, lies on the couch or the bed all day and night. He will be scanned soon to see if the chemo is doing any good. What kind of life is this? Do we need to hang in and give it more of a chance? Thank you for any information you can share. You’re a good brother. I’m sorry you all are having to deal with this. Best wishes to Cindy and your family.
Carol
Hi Jeff, i hope you are doing well. read that u are going to maine. i just got
back from higgins beach (south portland) for 3 days with my sister and
mother. we love maine. hope u have a great time.cindy, my sister, has had a rough couple of weeks. after learning that her tumors in her liver had shrunk after the 5th round of fu-5 and oxalyplatin
she devoloped ascites for the first time ever. she has been drained twice
and also due to the chemo she has needed a blood transfusion. we see
a gastroenterologist today. our oncologist said he may discuss putting a
shunt in for the ascites problem, but warned it is not foolproof. she is
trying two medications first to try and solve this problem. otherwise she
is in minimal pain, with fatigue and always being cold being her main
complaints. we are glad she has had very little neuropathy from the
oxalyplatin. it is roughly 5 years since her diagnosis and we are thankful
she has been able to live a relatively normal lifestyle.i will let u know if i can find anything more on cpe. sure wish sis could
try something other than chemo. take care.Hi Bosco—- Sounds like something to check in to. I’ll do the same and pass on anything I can dig up. Have you checked in with John Hopkins to see what protocol theey have applied to it? How is your sister doing besides the ascites? Is she maintaining weight? Sorry just asking to many questions.
Wish her and you the best.
Bless Ya Both!
Jeff G.CPE stands for clostridium perfringens enterotoxin. it is a bacteria that can
cause food poisoning. it sounds promising against tumors that express
claudin-4, which most ccc’s do from what i have read. i searched under
clostridium at clinical trials.gov and noticed johns hopkins is doing a
study with a one time injection of a similar bacteria. my research is very
preliminary on this and i am certainly no scientist. my sister is running
out of options and is getting ascites. just curious if anyone else ran across
this.
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