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- Take someone with you if possible.
It helps to have someone to drive you home if you don’t feel great.
- Pack a tote bag and load it with everything you will need!
You may not feel like doing much of anything but the infusion does take a while and so I found a warm wrap/shawl (the room is often on the cooler side); ipod; book; magazine; water; and snacks really helpful. If you don’t use them at least your companion will appreciate them! In between I used the bag at home to keep close to hand anything I might need, saves having to wander around looking for things when you are tired or always having to ask people to get things for you.
- Let your oncologist know ahead of time if you are the type of person who tends to get nauseated, i.e. you experience motion sickness or you had morning sickness during pregnancy.
They may be able to get you a prescription for Emend, which should really help. If your insurance won’t cover this, don’t worry, there are several other medications they can give you. Be proactive about the nausea, it is easier to prevent than to treat once you have it.
- Try ginger or mint candies for nausea after chemotherapy.
I found some great ginger candies and some wonderful organic mint candies which help.
- Drink ginger or mint tea or flat ginger ale.
They all help relieve moderate nausea.
- A throw or wrap/shawl really helps.
I felt cold all the time. Someone gave me a shawl when I was first diagnosed. Although I was touched by the gift, I never thought I would use it. But after a while I used it ALL the time. I had it round my shoulders sitting in bed after surgery and I took it to all my chemo appointments. Almost every place I went it came too. I guess you are never too old for a “blankie”!!
- A warm soft knit hat helps to keep your head warm, especially at night, if you lose your hair.
I liked a soft cotton beanie at night. Make sure that it has soft inner seams so that it doesn’t rub your sensitive scalp.
- Warm, soft socks with grippers on the bottom to prevent slipping and keep your feet warm.
Almost everything tastes bad during chemo – even water!
- No, I am not joking, even water has a strange metallic taste.
Try adding a slice of lemon to your water.
- Use lemon candies to cut the bad taste in your mouth.
Do not use tart candies if you have mouth sores.
- Now may not be the time to be eating anything that you love!
Strange advice, I know, but if you do and have nausea you may ending up hating that food afterwards.
- Avoid eating spicy, fried food or foods with strong odors.
Cold foods are also less likely to have unpleasant odors.
- You may also temporarily lose your ability to taste.
Everything tasted very bland to me. I wasn’t allowed to season food during cooking as it would have ended up way too salty for anyone else’s taste!
- Depending on the chemotherapy drugs you take, your hair may or probably will fall out.
Mine started to fall out about 3 weeks after my first infusion of cytoxan and taxotere. This is quite usual, but varies somewhat from person to person. Within a period of 5-7 days it went from losing a few hairs each day to my being able to pull out clumps of hairs with just a gentle tug.
- What to do when it starts to fall out?
At this point you have a few options. I would suggest cutting it to about 2 inches and then letting it fall out by itself, although you could always close yourself in your bathroom and help it along by pulling out a few handfuls! Or if you really want to get rid of it all then you could always closely cut off most of it and then shave off the rest, but be VERY careful not to nick your scalp. A word of caution: do NOT do what I did! I did not want to stand by and watch my hair fall out gradually until I was left with just a few pathetic wisps. I wanted to be proactive and call the shots, so at 3 weeks after my first chemotherapy infusion we had a hair cutting party! My 5 year old cut my hair to about 1-2 inches all over and then my husband buzzed the rest to about ¼ inch. I felt good about it at the time, but no-one had told me about painful hair follicles. Yes, for a period of about 5 days, around the time your hair is falling out, your hair follicles actually hurt! When all your hair is ¼ inch long, anything that touches your head (hat, scarf, even lying down on a pillow) makes it feel as though you have thousands of little needles sticking into your scalp – not fun!
- After your hair falls out your scalp might feel very dry.
You can use a shampoo formulated to moisturize and reduce hair fall out, such asALRA shampoo. This also doubles as a great body wash. Alternatively, I had been using Dove body wash for sensitive skin on my body as it too felt dry, so I just started using this on my scalp too and it really helped. I ended up using it after my hair started growing back, at least until it reached an inch long and never had a problem with new hair breaking or being fragile.
- Your head gets really cold at night.
Go ahead and get a soft cotton hat or a beanie/knit ski-cap, at least to wear at night. How do all those bald guys deal with their cold heads?
- Your hair may grow back looking quite different, at least initially.
My straight black hair (actually black with an indeterminate amount of grey covered by monthly root touch-ups) fell out during chemo but new hair started to grow back almost before the end of my series of four chemotherapy treatments. The strange thing was that it started growing through white and curly! Eventually the black started growing through as well and my hair transitioned from curly to wavy. I have to admit that I really like the white stage and was almost sorry to lose it. See pictures of before, bald, bald with great wig, short white hair and 1 year post-chemo. I actually like my hair more now than I did before chemotherapy.
- Have fun with wigs!
Buy synthetic! I had a couple of wigs, one brunette and one blond which I loved because they were so cute. But I also have to admit that often I just went out with my shiny, bald head and most days even when I did wear the wigs during the day I frequently took them off by the evening. Synthetic hair can look great! It is far less expensive than a real hair wig and doesn’t need styling in the morning – just shake it or fluff it and put it on – really cuts down on time spent getting ready in the morning. Go shopping for a wig before you start chemotherapy; it will help you to chose a shade closest to your own before you lose your hair and you will have more energy. Take a friend and make trying on wigs fun.
- Wear hats outside, you need to protect your head from the sun.
Some are even available with an SPF factor.
- There are some commercially available products for promoting hair growth that you might want to try when your hair starts to grow back.
I have not used them so I don’t have any particular recommendation, but they are certainly worth trying. Also scalp massage, anything that increases blood flow to the scalp, will help. It also feels wonderful.
Loss of eyelashes and eyebrows
- Use eyebrow powder and a brush to fill in gaps when your eyebrows start to fall out.
I thought that I had escaped this side-effect when I still had eyebrows and lashes two months after my last chemo infusion and then in the space of 7-14 days they all fell out. The good thing is that my eyebrows at least had started to grow new little hairs by the time all of the mature hairs had fallen out, so at least I wasn’t without them for long.
- If all your eyebrow hairs fall out and don’t grow back for a while then you can useeyebrow stencils together with eyebrow powder to create the appearance of eyebrows.
Use a larger soft brush and use a slightly lighter shade than your natural brows and it doesn’t look bad at all.
- There are a number of commercial products that are supposed to help eyelash or eyebrow growth.
I have tried some with various results. Brow Boost by Billion Dollar Brows was somewhat helpful with my eyebrows. As my eyelashes had still not grown back fully after 18 months, I gave in and purchased Latisse. This was expensive, but really did help my eyelashes grow back. The downside for me was that it made my eyes itchy, when I stopped using it many of the lashes fell out again and also it made the skin around my lashes a darker brown/purple color. Fortunately the skin discoloration faded over time. You should be extremely cautious using anything close to your eyes during chemotherapy due to the risk of infection. This also applies to eye make-up, etc.
Changes in complexion
- Your complexion may look sallow and the makeup you usually use may not work.
Experiment with other shades. I found that a pinker toned mineral powder base looked better on me than my usual shade.
- It won’t last!
Eventually you will wake up and your face will look the way it did before. In the meantime, if wearing some makeup makes you feel better then do it. If you just can’t be bothered then that is fine too.
- Look Good…..Feel Better is a community-based, free program.
It teaches cancer patients beauty tips to help them feel good during chemotherapy and radiation treatments. At the session I went to they handed out make-up kits and everyone practiced applying make-up. While I did not use many of the cosmetics afterward it was good to be around a number of other women who were going through the same thing and have fun at the same time. See http://www.lookgoodfeelbetter.org
Mouth sores: how to help avoid them
- Keep ice cubes in your mouth for 30 minutes before, during and 30 minutes after chemotherapy infusion.
This may reduce the amount of chemotherapeutic agent getting to the oral mucosa. I did not do this on my first round of chemotherapy and ended up with a mouthful of very painful sores. On subsequent rounds I sucked the ice chips and didn’t get another sore.
- Do not eat crunchy or potentially abrasive foods e.g. chips, toast, pizza, anything that might cause small tears in the mouth as these can then develop into sores.
- ALWAYS brush your teeth and use mouthwash after every meal/snack.
Biotene mouthwash and toothpaste are specially formulated for dry mouth and are very gentle. Biotene gum also helps with dry mouth. Avoid harsh alcohol containing mouthwashes. I had a lot of nausea in the first week after chemo and during that time did not like the taste of the Biotene rinse and so for that period I used baking soda dissolved in warm water. When the nausea lessened I went back to the Biotene.
Mouth sores: if you get them
- Ask your pharmacist/doctor about formulations they can recommend/prescribe.
- Using a Kanka pen directly on the sore really helps with the pain.
- Be meticulous about oral hygiene and contact your doctor immediately if you have a fever. Fever could have a number of causes, but it is possible to get a bacterial infection from bacteria that enter through chemo-induced mouth sores (this happened to me). One of the first things you should arrange with your oncologist is when you should contact them i.e. what symptoms should trigger you to call and what is their preferred method of contact e.g. phone call to hospital switchboard or their cell phone, email etc. You may also want to check under what circumstances they would want you to go straight to urgent care etc.
- Eat soft foods and shakes; anything that goes down easily.
Take heart – they will heal.
- Keep nails moisturized.
A friend recommended Neem Nail Oil by Dr Haupschka to me and I did not have problems during chemo.
- Skin can get dry and sensitive during chemotherapy.
You can use a specially formulated moisturizing lotion such as ALRA therapy lotion.
Sensitivity to the sun
- During and for a few months afterward chemotherapy, you will be particularly sensitive to the sun.
Wear a sun hat outside and cover exposed skin.
Arrange how to contact your Physician
- Agree with your oncologist as to when you should call.
In other words, what symptoms should trigger you to call and what is their preferred method of contact, e.g. phone call to hospital switchboard or their cell phone, email etc. Find out how rapidly calls are returned i.e. within the hour, by the end of the day. You may also want to check under what circumstances they would want you to go straight to urgent care etc. If something is of concern to you, do not delay in reporting it or seeking help.
- If you are not post-menopausal when you start chemotherapy, it will send you into either a temporary or permanent chemotherapy induced menopause or “chemopause”.
The symptoms are the same as menopause and include hot-flashes, mood-swings, depression of sexual urge. Many of the standard treatments for menopause such as hormone-replacement therapy would not be appropriate if you had an estrogen/progesterone sensitive tumor as they would stimulate tumor growth. Ask your oncologist about alternative treatments. Be cautious about natural therapies and check them out with your oncologist as a number are potentially phytoestrogens (plant based estrogen-like molecules) which can have estrogen-like properties and would not be appropriate for patients who had an ER/PR+ tumor. I found that the best way to deal with hot-flashes was to wear breathable fabrics like cotton and to layer so that if I warmed up I could remove outer layers. Similarly in bed, I wore light cotton pajamas and light cottons sheets and covers so that I could cast off layers. My incidence of hot-flashes dramatically increased in response to both stress and alcohol, so you may find relaxation techniques and alcohol avoidance to be helpful. You may also want to avoid hot drinks, smoking, caffeine, spicy foods and certain other foods containing tyramine such as aged cheeses, tomatoes and citrus foods which may also trigger hot flashes. Remember, it won’t last forever and there is some suggestion that although chemotherapy induced menopause might be more dramatic than regular menopause because of its rapid onset it might also be of shorter duration. Your desire for sexual intimacy may change due to many factors including chemopause, fatigue, anxiety and changes in body-image after surgery. Talk to your partner about your feelings. Try some of the suggestions from the following links.
- Many people experience a kind of mental fuzziness, short-term memory loss, trouble multi-tasking, concentrating or making decisions which occurs during and soon after chemotherapy.
I found the book “Your Brain After Chemo: A practical guide to lifting the fog and getting back your focus” by Dr Dan Silverman, MD, PhD and Idelle Davidson, to be extremely helpful.
- For many people the symptoms resolve quickly, but for others it stays around longer. I found this book a great help both for describing the symptoms, but more importantly in suggesting ways to help alleviate symptoms and recover. It was great to know that there was actually a name for what I was experiencing and that it wasn’t just me. Note, similar symptoms to chemo-brain can also be caused by certain medications and also stress or depression triggered by your cancer diagnosis, so check with your oncologist.
- Carry a mini-notebook and jot down things you want to remember.
I found this really helpful, it relieved a lot of frustration.
Sad, overwhelmed, depressed, angry
- What you are going through is hard, very hard and no, it is absolutely not fair! Please find people who can support you through this.
You may just need someone to listen while you talk; you may need someone to be your cheerleader and to encourage you when you feel down. It is great if those people are your loved ones, but sometimes because this is also overwhelming to them too, they don’t always know the best way to help. If this is the case, tell them what kind of help is most helpful to you and be firm but kind. If they cannot provide the kind of help you need then look outside your closest circle. Many hospitals will pair recently diagnosed cancer patients with cancer survivors in their area. Sometimes it might be easier to talk to a stranger, but a stranger who knows what you are going through, and believe me they won’t be a stranger for long. Helpful resources are ACS: Cancer Survivors Network, Cancer Hope Network, The Wellness Community