Dr Rentfrow's
Tips for cancer patients
The following information is not evidence based medicine. It is my interpretation of the experience I had while undergoing cancer treatments. It is not meant to replace the information given to you by your doctor. It is meant to stimulate discussion, and nothing beyond that. I wish you success in your battle.
Use of the postoperative drain
Learn to milk your post-operative drain if you undergo surgery. Suction may remove tumor cells from your body. It will also decrease dead space in the wound which may help to get the incision closed. Your physician is not God but tries to do a very good job. It is your job to understand that you need to utilize everything in your disposal to help your doctor do a very good job, including your own hands.
It may hurt to milk the drain, but the pain should be no worse a few minutes after you're done. When the fluid turns clear and reduces in volume, that's a good thing. Make sure your hands are very clean and use hand sanitizer prior to milking the drain. Hand sanitizer also makes for a decent lubricant for this purpose. It might also keep things a little cleaner.
The PICC line
I maintained my own PICC line. Sometimes I made my wife do it when I felt too weak. She has no medical training, so probably anybody who has common sense can do it. Being able to do it for yourself helps to maintain control over the situation. There is nobody better at hygiene than you if you know how to do it. If you don't, get help.
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I'm proud to say that I don't think I got any big infections. I did have an ingrown hair in my nose that spit pus, and one mouth sore after sleeping for 18 hours ( can't brush your teeth when you're asleep). These are probably from loss of topical flora (normal skin bacteria) or mouth flora and less likely to do with blood infection. I did get tired of the smell of rubbing alcohol after a while, but got quite good at one handed care for my PICC line.
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Protect your veins. Everyone wants to stab you. Everyone is afraid of the PICC line. A PICC line is a plastic tube with a needle port in one end. It is not to be feared. I only agreed to a peripheral lab draw outside of my PICC line on one occasion, after the PICC line was pulled from my body. If you have a PICC line, and it works, protect your veins and demand that they use your PICC line.
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Every human person in the hospital has a tendency to be lazy when they can. There are many good people in the hospital that work. There are equally as many that see it as a job and don't care one way or the other as long as they get paid. On more than one occasion, I threw lab people out of my room, and refused draws in the cancer center of all places where the nurse said she was not trained use a PICC line and that I would have to go elsewhere. I mentioned it to my physician. A nurse was available thereafter to draw. She was quite good.
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When showering with your PICC line, the Cling Saran Wrap that sticks to itself is invaluable. There is a good YouTube video by a physician who had a PICC line for infection after neck surgery that I modeled. His link is at the bottom of this section. If you have to change the skin bandage, always alcohol off all contents under the bandage including the skin. If you have access to chloroprep, that's what I used. Replace the bandage with very clean gloves or better yet sterile gloves if you know how to maintain sterility.
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If it's cheaper for you to buy a bottle of alcohol and use cotton balls that's fine. Demand sterile caps for your PICC line. Get the outsides of the Caps wet with alcohol before you touch them and put them on. Do the same for your PICC line portal. I usually left the Caps soak in alchohol and the PICC line access port in the cotton alcholol sponges as I worked on the other lumen of the line. With proper setup, I could get through the whole process in about 2 minutes, freeing my wife from the burden, freeing my wallet from paying a nurse to do it, and freeing my pride... from having a nurse to do it.
Afterward, I took an old sock and cut a hole in it so that the line could stick out through it, and the sock would cover my arm circumferentially. I've then took a second sock and covered the line so that it was buried between the two socks. This was the most comfortable way I could find to wear it. Long sleeve shirts were usually a must if going out but I would wear t-shirts at home with just the cover up socks. These should be replaced daily when you flush your line.
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Exercise after surgery
Your body is not made to lay in bed. If your doctor will allow it, move as much as you can. You need to keep your strength up to protect against the next surgery, next infection, next tumor, or next chemo cycle. Exercise will reduce swelling in an extremity, if not immediately so, lymphatics drain fluid (and unforunately sometimes metastases) and are more effective after exercise. I do not believe there is a best exercise. If you can walk, I would suggest that. If you cannot, pick any activity you can think of and start doing it. The picture below was taken 5 days after surgery, I was wearing a wound vac. I walked 1/2 mile/hr for 1/4 mile and then progressively increased as pain would allow.
Run on chemotherapy
I am very proud of that picture. It defies what cancer is trying to do. Any type of exercise during chemotherapy at the very least helps to profuse the chemical throughout the body and perhaps the tumor. I have only seen dated research studies that suggest exercise has a mild benefit in function but has no bearing on survival. This does not make sense to me. Anyone who walks is less likely to get a blood clot. Anyone who doesn't stay in bed all the time probably won't get a bedsore. It would be interesting to see if formal exercise programs introduced during chemotherapy and maintained throughout its course would have an effect, or adjunctive affect, on the effectiveness of chemotherapy.
Rationale
Every time I exercised, my nausea never got worse and usually reduced. I cannot remember if it ever became absent. I can remember times of greater confidence while exercising in response to feeling that I would make it through it. I am not certain this is the same thing. I do know that anxiety always made my nausea worse, and that exercise has a direct negative effect on anxiety. Even during my worst symptoms I could usually exercise. I even looked forward to throwing up so that I could exercise and help reduce the symptoms afterwards if they were uncontrolled.
Nutrition
I'm not a dietitian. I don't consider myself an authority on nutrition. I got a lot of advice from various people and want to share what I did.
Eat anything you can. Try to gain weight if you know how to. Food quality is important, but maintenance of body weight is likely more important. It will also help you gauge dehydration if you lose weight rapidly. Rapid shifts in bodyweight (hours rather than weeks) are related to fluid rather than food. If you're eating, you are probably keeping your body weight. If you are not eating, and your weight goes down, try to drink something. You might feel better. Water and Gatorade. Glacier Freeze Gatorade was most palatable to me. Stay away from soda and juices, you will get heartburn. Gastric upset (heartburn, reflux, etc) is usually a different feeling than vomiting and feels more like pressure and burning pain in the gut versus the nausea of vomiting.
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One of my first meals at home after chemo was a sausage biscuit with egg and cheese and potato chips. Obviously, not the choice of a nutritionist.
Radation (and exercise)
Radiation is probably the easiest thing you'll do. Expect a sunburn. Expect to get it about 10 days after done with treatments. Use your favorite moisturizer continuously. I tried 3 or 4 kinds before I found the one I liked. This came from the cancer center where I had my radiation treatments. Usually simple things like Vaseline were better than nothing. I would not bandage my leg as one time I tried this and got irritated from the adhesive. The burned skin was different than my non-burned skin. I would advise loose fitting clothes and/or shorts, shirts with short sleeves, etc. I turned about 10 pairs of scrub pants into a 1 legged scrub pant. It became quite a fashion statement, and I had other people sending me their own selfie versions of this.
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For those people who are doing radiation, and need radiation to the neck, the groin, the genitals, or armpit; try to maintain your flexibilty through stretching as best you can. I believe as long as there is no skin breakdown, range of motion exercise should be tolerated and encouraged. This will help keep the joint mobile, as well as keep you strong, and promote vascularity, even in the skin right where the burn is trying to heal.. The burn will pass. I have no skin sensitivity today. I do notice that I had radiation approximately 18 inches above and below the site of my tumor. For me this is termed radiation fibrosis. The best way to describe it is like how a muscle feels after it is injured and in the process of healing. It is not painful at rest, but it is stiff when mobilized and approaching painful. This symptom always reduces with exercise. John Healy, MD, taught me this. He warned me I would need to exercise every day for the rest of my life. I believe he will be right.
Brushing Your Teeth
I think that brushing your teeth after every meal, upon waking, and before bed reduces mouth sores. I don't see a study for it anywhere. I always felt like when cell counts and normal flora came back in between cycles, my mouth sores went away. I got one mouth sore, when I slept for 18 hours and didn't wake-up to brush. Keeping the teeth and mouth free of food, debris, vomit, etc. probably decreases the exposure of food to bug and reduces traffic of the bugs coming in on the food you eat. I would advise flossing once a day, but I know that some should not do this because of bleeding gums.
Use of anti-nausea medicines
I believe anxiolytic medicines helped me with nausea. These are things like Ativan and Xanax. Valium is also in this class, but I never took that medicine. On the contrary, every time I got more anxious, my nausea got worse. When my children would fight, I became more nauseous. When I had an upcoming test I was anxious about, I would become more nauseous. The relationship was there every time.
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I tried Compazine once, and it increased my anxiety and I actually became somewhat confused. Phenergan to me is basically antihistamine which is used to treat bug bites or cold symtpoms, not chemo-induced nausea. I put Phenergan in the Compazine in the same worthless category. I am not sure of Zofran helps or not. I know the one with the grape dissolvable flavor makes me throw up. I took Zofran anyhow when it was a pill or in the IV because it never made me worse, but I don't think it ever made me feel much better.
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I'm not sure if steroids ever made me feel more or less nauseous. I took them at the advice of my physicians who I felt just had more experience than I did. Steroids definitely gave me more energy to the point where I was running with an IV pole in the hallways and finally on a treadmill. I don't think steroids made any long-term changes to my body, and I would use them again if I needed.
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If you want to use marijuana, talk to your Doctor. If someone wants to judge your for it, they need to have had cancer and chemotherapy to be credible. I would have eaten dog food, small children, or an athlete's used underwear if it would have made the nausea go away. If you find something that works well for you, share the information with others.
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I did not use anxiolytics more than a couple of times at home. After my second round, I became vastly dehydrated, and lost what I thought was about 15 pounds of water weight. I became emotionally upset. My left leg showed marked edema, and I probably had poor osmotic pressures from low proteins and a bunch of dead stuff floating around in my veins. I took the Ativan and it did calm me down. I thought to get on the scale and realized my body weight was low. I started to drink water. It took about 24 hours, but I felt better. Ativan bailed me out in this case. I used it one other time during my recovery from my last round chemotherapy. I was pretty tired, and I had to go through scans again was finding myself having difficulty sleeping. I used it one time then for the scans. It did its job, and I slept.
Chemo and hair loss
I was embarrassed to go through chemotherapy. As an orthopedic surgeon, you pride yourself on your physical prowess, your gift of intelligence, and your ability to persevere through very difficult situations. Chemotherapy challenges all of that.
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Sometimes I was angry and took out frustrations on others because of this. If I sensed somebody wasn't comfortable with my appearance, I tried to make them more uncomfortable demonstrating that this thing was not beating me and you have no reason to think otherwise. I was one to flash my baldhead to those who were timid and staring. Most people shy away even at the mention of cancer. It is a powerful weapon, use it to your advantage when you need or want something.
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Hair loss is a very unique experience, and it had unexpected effects on my psyche. I didn't really care about going bald, but I did care when I didn't recognize myself in the mirror. I think I began to miss myself like being homesick. I'm sure there are ways to cope with this if you know it's coming. There are computer programs that make your photo bald on a comical basis. If I do chemotherapy again, I will shave in advance. Having your hair fall out bit by bit doesn't make it any less painful or demeaning, and it is not much fun to keep half of a head of hair. I'll go back to cotton hats or baseball hats if I need to. If you want a wig and can obtain one, get it. Anything that improves your attitude is probably a good thing.