We will soon be discussing John's chemotherapy with his Docs. I sure could use some input on the following:
1. Is the patient given a choice of chemo drugs? If so, what do you base your decision on?

2. Since this is chemo only [no radiation] will that affect the choice of drugs?

3.I am really concerned about nausea since John has already lost 34 lbs- down to 130 lbs.now.

4. What else should I be thinking/learning about now? Thanks, Amy

Usually your medial oncologist/hemotologist will determine the Chemotherapy regimen.
My first time around I was given Taxol and Carboplatin.
This time I am on Cistplatin and Taxotere with a trippled dose.
Chemotherapy effects everyone differently. The first time around I breezed through the chemotherapy and the radiation kicked my butt.
This time the Chemotherapy id kicking my butt.
Use the PEG for nutrition, and stay thoroughly hydrated also through the PEG.
Hang in there.
Darrell

Amy, Make sure they are giving him the best anti-nausea drugs out there. Don't let them start him off with compazine then when that doesn't work go to the newer and more expensive ones (which is what happened with me). But do be sure to get compazine suppositories--if he can't keep anything else down, these will help.

Nelie

O.K. I spent 3 hrs. reading on the net today about chemo drugs and anti nausea drugs. Here is what I THINK I learned. Zofran, Ativan and Anzemet seem to be up at the top. I read alot about Tarceva and Erbitux, but am not sure what I learned, other that Erbitux is still esperimental and Tarceva is only used after other drugs have been tried. What else should we be looking for, Nelie? I will be sure to have compazine suppositories in house. Are you supposed to eat something before a tx?. Amy

Hello Amy,

Discuss with the chemo doctor why she is recommending whatever drugs she is. From what I know they all do different things to try and control and or kill the cancer cells.
I tried 5 different chemo drugs and had no nausea
at all. I was a little tired after some but had no hair loss or sickness at all.
Does John have a PEG tube? Thats alot of weight to lose. He needs to input enough nutrition to heal and gain some weight back. Check with the nutritionest to find out how much he needs.

I wish you and John my best wishes, Danny Boy

JAM,you had mentioned ativan as a anti nausea med it is really an anti anxiety med, I used it primarily during radiation because i had a difficult time with the mask. My oncologist was quite liberal with these and I was lovin him for them, however I had been warned by friends that they were very addictive and to be careful and that they can sneak up on you. Sure enough when I was in the hospital for neck dissection I began to go thru withdrawls, much like drug addict,that was the last thing I needed, they offered me another script of them, which i did not fill, I did not need them any longer since I was done with radiation, so just be careful with that drug, by the way it is also known as lorzapan. There are plenty of anti nausea drugs just do your research, for me chemo (cisplatin) was easy it was the radiation that kicked my ass.

Lenny is correct that Ativan is a mild sedative but it also helps with nausea and my feeling is if you're dealing with serious chemo nausea, don't worry so much about if it's addicting. My medical oncologist told me that most cancer patients who take potentially addictive things like pain meds and Ativan don't become really psychologically addicted--although they may become physically dependent and need to taper down before going all the way off. I know I went off the Ativan as soon as I could and never missed it after the worst nausea was over, but, in combination with other things, it was a godsend in helping me control all the nausea from the Amifostine,chemo and phlegm in my stomach during the last weeks of treatment.

They will probably give John an IV anti-nausea drug on the day of chemo--or maybe several. They gave me Anzemet and a steroid--and that will usually control nausea while the chemo is going in, the hard part becomes keeping the nausea under control after that wears off. The first time I tried with compazine, which didn't do much, then they gave me zofran and ativan and that combination worked decently, although I still got sick a few times.

Does John have a port? If he is going for lots of chemo sessions, I'd strongly recommend he get one--especailly if anyone has eveer said his veins were hard to find. It's a surgical procedure to insert one but is outpatient surgery usually and it made my life SO much easier when I had chemo(also if, God forbid, his red blood cells get low enough that they recommend a transfusion, he's all set up for that with a port).

Which reminds me, also ask about Procrit and the one that is supposed to help keep your white blood cell count up. They wouldn't give me procrit until my RBC had dropped severely after the first chemo--I don't know why since my understanding is that that almost always happens but maybe it was about insurance covering it or something and they never offered me the drug for helping with your white blood cells (Neulasta? I think?) --they did discuss it with me at the very end of rad when I was in the hospital with a really low white blood cell count, but they said I had enough signs of baby blood cells that would become white blood cells in 3 weeks that it probably wasn't necessary (since the medicine takes 3 weeks or so to regenerate white blood cells anyway). But it sounds like John's chemo might be more often than I had and lasting longer, so I'd definitely ask about it (they advertise it on TV all the time so I'm sure everyone asks about it).

As for eating, I think they did want me to have a little something in my stomach before the treatment then they may PUSH eating during the chemo infusion (which took several hours for me--and my impression is this is true most of the time) because it helps keep the nausea down to have something in your stomach. I don't know how John's eating will be after surgery but the medical oncologists's office where I had chemo had crackers, because of course those help with nausea, and juices and gingerale. But they recommended bringing somehting and I did both times (I had just finished fighting a urinary tract infection when I ahd teh second chemo and I was off of sugary drinks because of that and the mouth was definitely too sore for crackers!)

I hope this helps, Amy. I'm still sending wishes for speedy healing John's way.....

Nelie

Our Chemo nurse recommended eating before chemo, but not within the two hours immediately leading up to receiving the drug. However with some drugs (cisplatin being one) the drug and hydration infusions take a long time and it is important to try to keep something in your stomach. Ask your nurse for what they recommend for the particular drug John will be getting.

One warning -- don't eat or drink anything that you really like just before chemo, because if you get severely nauseated from the drug your mind will associate the illness with the food and you may no longer be able to abide it! This is the infamous "Sauce Bernaise Syndrome" -- a famous psychologist got very ill right after a meal containing this sauce and even though this later proved to be a stomach flu (which almost everyone in his office caught) he was unable to tolerate even the thought of Sauce Bernaise for years afterwards! This reaction is apparently instinctive -- to help us avoid poisonous food items -- and occurs in most animals. Anyway, the psychologist wrote a paper about this and coined the name...

On another note, Erbitux and Tarceva are both being given at a number of institutions throughout the country in clinical trial settings, sometimes as an initial therapy (usually combined with other chemo drugs and radiation). It would not hurt to ask if a trial were available where John is being treated. Patients at Hopkins in the Tarceva trial seemed to be responding quite well, some had pretty advanced disease. Of course final results are not in yet, nor any long-term followup...

Gail

Gail's right about the conditioning of taste and smell and nausea. It only takes one pairing usually. Which also reminds me that you need to be extra careful about smells while John is getting chemo. My dear husband toasted a garlic bagel for himself two days after my first chemo, which smelled up our whole house enough that as soon as I set foot outside the bedroom that morning the smell alone made me vomit. The whole time I ahd chemo I was ultra-sensitive to smells and mostly they made me feel ill.

Also, because his white blood cell count will drop, it doesn't hurt to do (or better yet hire someone else to do!) an extra good cleaning of the house and the car before chemo starts--with special attention to disinfecting doorknobs, handles, faucets, etc. where John will touch. And get some good soap so John can wash his hands fairly often during the day--or I found those Purell wipes really handy (because you can use those anywhere). All the extra hand-cleaning made my hands rough so I also got some nice non-scented shea butter lotion to help keep them soft....

If you don't already have one, I'd also recommend gatting one of those ear thermometers. You want to keep track of temperature during chemo because an increased temp could mean the body is trying to fight an infection, which is much more serious when you have a low white blood cell count. And I'm assuming that right now, sticking something under John's tongue is tricky at best, as it was with me after my surgery and during rad.

Nelie

This is the information I need now. I knew I could count on youall. Keep it coming please, I am organizing all of the above into catagories and questions for the Docs. Our 1st time around, we hardly had time to think, much less know the right questions to ask. Thanks to the courageous and caring people at OCF, we might be ahead of the game this time. I count you all among my blessings. Amy