Xeloda and sleeplessness

Hi Peter,  Yes I experienced sleeplessness during my first round.  Just had my second treatment today.  Was home only a couple of hours and the Oncology nurse called and said I needed to come back in tomorrow morning for IV side effect medicine to avoid getting so sick as last time.  They were doing their end of day charting and review and saw the Dr. had ordered day 2 of each cycle to have this IV anti-sick med and that is why I got so sick last time because they never did Day 2 last treatment.  I guess I need to have the Dr. orders read to me in the future or copy printed off for me.  I've always said the patient is her/his best advocate.  It's amazing what can get missed between the doc and nurse sometimes.  Peter, are you also taking Oxaliplatin? I've come to the conclusion that it is what 's causing my sleeplessness vs Xeloda I think??? Maybe both are the culprits.  I take 1mg clonzapan before bedtime. Otherwise listen to very soft music in a dark room.
Jeff G.

Hi Peter, Day 2 treatment was given today for the OXY and Xeloda; consisited of a bag of saline and the mixture of anti-naseau/ steriod IV.  Plus they had some valentine chocolates for breakfast.  I discussed with Oncology Nurse this morning about not sleeping well and she herself has some type of cancer and said what she does is eat a couple little bags of M&Ms or a candy bar wait for about 10-15 minutes and she is out like a light.  I also today got a copy of the doctors orders so I know exactly what my treatment is and what are also the back up order if platelets and nuetrophils drop to low.  Like I found out today if my nuetrophils  drop below 1000, I am suppose to start antibiotic and figrastin injection to to boost my WBCs and immune sytem.  Peter I didn't try dentic cell therapy but did do 3D conformal radiation to the liver tumor which shrunk it by 2x3 cm on last scan.  It was done as a pallative treatment but knowing  that it showed positive results that may be a return option for more than just pallative treatment ; in other words turn it up and go for the gusto but don't over do it.  Thermo high heat  if precisely done does kill cancerous tumors according to all my research.  I'm told it is expensive and it is time consuming.  What the hecht It is better to owe them than cheat them out of it.  Cost of treatment is sooooooo over inflated it's pitafull.  Well I rambled enough.  Nice Chatting with you peter I'll keep you posted  if any thing new developes with this treatment. I would be quite interested  in how your mushroom extract does for you.

Keep Your Chin UP!
Jeff G.

Dear Peter from Vermont-

Obviously, I am suffering from insomnia at the moment.  I've been up since 4am, catching up on some paperwork.

I have been taking Xeloda since last summer and I have Gemzar & Avastin infused.  I get the steroid dexamethasone (sp?) before infusions and it usually makes it difficult to sleep for the first two nights afterwards.  I do have lots of energy the day or two after the steroids, so I like that.  Then I hit a chemo slump with aches, pains, fatigue, and queasiness.

I have taken Ambien CR occasionally to sleep, but it really knocks me out, and I am rather groggy the next morning.  You do need 8 - 10 hours to sleep on Ambien.

I have also taken Benadryl which one of the oncology nurses told me about.  She said she givees her husband Tylenol with Benadryl when he can't sleep.  (I believe this is the Extra-Strength version of Tylenol.)  Tylenol is hard on the liver and Ibuprofen affects platelets, so my oncologist has told me to use those sparingly.  He also said aspirin will wreak havoc on platelets so I never take it.

I do take Oxycodone sometimes for pain.  It makes me drowsy, so I usually just take it at bedtime.  While it does help me to fall asleep, I wake up almost every hour after I have taken it.  That may be because I'm not taking a large enough dose to overcome the pain, and the pain is waking me up.

Sometimes I try to command myself to sleep, but those steroids can make my mind go 90 miles an hour.  I don't know what woke me up this morning because I haven't had any steroids recently.

My oncologist and I feel that the Xeloda has been the most effective thing in controlling my tumors in my liver.  I usually can't take it all week because my feet and hands start to swell, but I've been tolerating it better lately.

I'd ask your oncologist what he recommends, but these are some of the things I've tried.

Good luck and hope this helps,
Caroline Stoufer

Jules,
You're correct of course.  Once I realized my mistake I was a bit embarrassed to make note of it.
All the best for your Dad's scan.
-Peter