Find things that make him laugh, movies, stories or audio books. A soft warm fleece blanket is a good thing to have along as well (an adult blankie) chemo changes your temperature sensor and can make your nerves on edge. Wear soft loose comfy clothing in layers that can be shed or added to as needed. Good fruit candies or mints are nice to have for dry mouth or to change the taste in the mouth. Everyone is different and you cannot predict what will happen. Find things to laugh at and know that it will go away. Tracy
Adenocarcinoma, Colorectal Cancer Questions
Asked by Ellie2013 on Sunday, March 24, 2013
My husband starts chemo this week: oxaliplatin and 5FU. We are nervous. He is packing a bag with the iPod and tablet, some snacks? Any experiences from the first time? He has a port in place.
11 Answers from the Community
Ellie, the tablet and iPod are great things to have for chemo. I alwsys had them and it helped pass the time. He can watch movies, listen to music and most infusion centersw have WiFi for free so he xan even surf the web. Often these meds are given with benadryl which always made me drowsy so I would just go to sleep with the music on. The nurses will wake him only when necessary. If you are going along with him be sure to bring things to keep you busy too as it can get boring for you. If you bring some treats remember to bring some for the nurses, my wife was famous for bringing cookies so all of the nurses would stop by. It saeems like I never got a cookin though. He should be aware of the possibility for nausea and diahrrea during and after treatment and have of ask for meds at the first sign. Good Luck we will be saying a prayer for both of you.
The first treatment is terrifying, but after that first one is "under the belt," you will both realize that the treatment itself is really no big deal...it's the next few days waiting and anticipating the side effects.
They will give him "pre-meds" which consist of a short infusion of anti-anxiety medication and predisone (to prevent an allergic reaction). The anti-anxiety meds will probably make him tired and he may doze off for a while. After the first treatment, I told them not to give me that so I could drive - I often went to work afterwards.
While you are there, he will be sitting in a reclining chair receiving an IV. That's it. So whatever you can bring to pass the time. Cards, backgammon board, a laptop so he can watch a movie, a puzzle book or book to read. A blanket and slipper socks are nice because it can get chilly just sitting there.
Beware of snacks. Once he receives the oxaliplatin, he will be very sensitive to cold liquids. He might get the feeling that his mouth and throat have frozen and locked. That will last for a few days so liquids will have to be room temp or even warmed up.
I had the very, very rare side effect of severe jaw pain. It was awful and I hope no one gets it, but I could only do soft, mushy foods.
After the infusion of the oxaliplatin, they'll attach the 5FU to a portable pump. Ugh! I had that for 46 hours. I couldn't shower so I'd wash my hair in the sink and take a bath. I was nervous about rolling over onto that side, so I slept on the couch in the family room on my other side with my back bumped up against the back of the couch so I didn't roll over. I hated the sound of the pump so I wrapped the pump in a blanket and buried it under a pile of pillows. Some of the newer pumps are silent so I hope your husband's will be. I also slept on the couch because I didn't want to keep my husband up at night. I didn't exactly get the most restful night of sleep.
Have your husband keep a journal of his side effects. I found that most of my side effects were cyclical and I could predict and try to offset some (constipation during the first week of treatment and then diarrhea after that which I tried to control with senakot and later anti-diarrheal). It would also help to predict my "down" days when we wouldn't schedule plans with friends and the days when I'd be stronger.
Good luck. The first one is a huge hurdle and the treatments after that are usually quite routine.
That is the same combination I had. My 5FU was in pills (Xeloda 500), 2 twice a day. To me, a great combination, my tumor disappeared completely without surgery (stage II).
I think he is pretty ready. My first time I didn't take a snack or a sweater or blanket. It can get pretty cold in the chemo area. It was good I didn't get hungry (maybe the nerves).
The pre-meds made me very sleepy, so I dozed for some time.
During treatment I couldn't hold my legs quiet, it felt like I had the restless leg syndrome.
Nothing cold, nothing hot. My jaw hurt a lot and I felt "needles" in my throat. But you HAVE to keep hydrated.
The Xeloda turned my hands and feet dark, but they didn't hurt.
Heavy diarrhea, cramps, and killer hemorrhoids.
It isn't easy, but it was worthwhile. Just keep in mind that it is for some time. Things will get better. Before you know it, he will be through.
Be brave, be positive. believe.
My husband just finished treatment 8 of 12 with oxaliplatin and 5FU. He has an infusion of the oxa... and then takes home a pump for 46 hours with the 5FU.
The first time we had a great nurse who talked us through the entire process. She explained every step just before she did it. We still laugh about when she started the drip and announced "Let the XXX begin" It was true, some times more than others. It is a good idea to have his electronic toys as he will be sitting there for several hours. There are drugs for nausea, etc. that go in first and then 2 hours of the oxa... It may differ with yours. We take a bag with us that has a couple of bottled waters, a gatorade and sometimes a can of V8 juice. We like to have room temperature liquids for him as we were told that people can have reactions to cool. And he did. He laughed as he felt like some ice cubes were tumbling down his throat and while it was not uncomfortable it was a reminder about temps. We also have granola bars, a protein bar and peanut butter crackers so he can pick. Some people watch TV which is available at each seat. Comfortable clothes and socks. We brought a blanket ,then we received a package with a hat, gloves and a blanket which we use. The gloves are for when he wants to touch anything cold. i.e. milk from the fridge for his coffee. He may be given a shot the day the pump comes off, neulasta, for white cell building. They will tell him to take a CLARITIN the day before the shot, day of, and 2 or 3 days after. This sounds nuts but it helps many people not get any discomfort in the bones from this shot. So we do it religiously and no problems. My husband had a bit of constipation the 2 days after the infusion so he increases fiber pills then and we also found that BELIEVE IT OR NOT - prune juice worked. just a little can that you can get as a 6 pack at the grocery. Best of Luck to you both!!
With oxyplatin, check out the possibility of adding GLUTAMINE as a supplement to help prevent / minimize neuropathy symptoms. You can buy this as a powder at many local health food stores. Put a rounded table spoon full into a cup of water - swirl and drink up! It doesn't have much taste. I did this through my chemo.... Ask your health care team, of course, but the research is pretty convincing that this supplement actually helps make things better....
Snacks are okay... Whatever he thinks he'll want to eat ... he should have that for sure!
I went through 7 months of treatment (with the addition of Avastin). I'd say your biggest worry is boredom (: Keeping him occupied and comfortable are the most important. At my facility, each patient had her own TV, but you may want to bring your own headphones just in case they run out. Also, after a few treatments of the Oxaliplatin, I developed an allergic reaction to the medication. It's not a huge deal, I developed hives on my face, neck, and chest. The nurses gave me benedryl and contined with the treatment as usual. If this happens, you get very sleepy (which can be good, because you can get some much needed sleep :) It's probably best if you drive home though. Good luck and no worries - he'll do great!
Hi Ellie, I recently completed my seven months of post-surgery chemo -- oxaliplatin in the chemo unit -- and then right after being hooked up to the pump for the next several days to receive the 5-FU. After spending hours and hours in the chemo unit, I can readily agree with the already posted suggestions. Take those that will fit you and your husband's best needs. Also when receiving the oxaliplatin, as with me, I am sure that both before and after administration your husband will also receive an IV combo of calcium and magnesium to help reduce/prevent the later impact of potential chemo-induced peripheral neuropathy. Also before the oxaliplatin, he should receive an anti-nausea drug infusion. All of these also through his port. This is a reason why you are there for hours.
The one important piece of advice I will add is to ensure he receives a prescription for Elma topical numbing agent, which he should apply over the port site about 1-1/2 hours before scheduled appointment. This will eliminate feeling any "ouch" pain when the nurse sticks the IV needle through the skin into the port. It is most beneficial. And ask for some additional clear dressings to take home so when you do apply the cream at home you can easily place the dressing over the cream so it stays there. The nurses will remove it at the chemo unit for you before commencing each treatment each time. After you and your husband have the first session you will become most comfortable and familiar with the routine and how to easily endure. Remember, your oncology nurses are all most sympathetic and caring. Do not hesitate to ask for anything at anytime. Best of luck and keep the faith.
Hi Ellie2013 Yes that is a good idea for your husband to take all that. I always took a book or watched TV. Never once did I have to have a blanket my body temperature was always hot when I did my treatments. Never fell asleep did alot of visiting with the nurses. Ate lunch while I did my treatments. No problems with oxaliplatin and 5FU but it all depends on your husband's body how well it will react to the medicine. I am now done with all my treatments and doing great. I went thru 2 surgeries did chemo and radiation before my first surgery then another round of treatment before my second surgery. Yes I had a port on my left side. I now go to the doctor every 6 months. I was not afraid while doing my treatments had alot of videos to watch and alot of nurses and doctors telling me what I was going to go thru. I came thru with flying colors and so will your husband. I wish the best for you and your husband. I am going on 4 years cancer free. I was diagnosed in 2009 with rectal cancer. Plus I am living my life to the fullest. God bless you and your husband. My motto is BE POSITIVE!!! Don't let this disease get you down. Cindy Burnett Sherburn Minnesota
He will want to have simple carbs prior to treatment like pasta, bread or oatmeal. I have no idea why, but they definitely minimize side effects.
My first two treatments made me feel exhausted, cold and sensitive to light. After that point, I had some neuropathy/tingling in my hands which went away.
I'm also using a port. It's important to remove adhesive material from it when they take out the chemo, but also keep it sterile. I heard one woman say her port got infected which can delay treatments.
Keep a lot of hand sanitizer handy as well since his white platelet count will probably go down. Neulasta does help build up the count. I understand that no diet can improve a white platlet count.