CHEMO AND RADIATION TIPS FROM AND FOR THE TNBC FOUNDATION SITE GALS AND ALL WHO COME HERE TO SHARE

 

Empower yourself! Educate yourself about your pathology reports and treatments through reliable internet websites and/or books.

Ask about preserving fertility prior to starting chemo.

There is free options. In Burnaby BC for Canada.

If you have mixed feelings about doing chemo vs. alternative medicine, make peace with it as much as possible. Practice visualizations; speak with a therapist who understands.

There is no such thing as a stupid question!

Keep asking questions until you get the answers you need to make informed decisions.

If you have any questions during the months you are taking chemo, be sure to contact your oncologist.

Have your D levels checked before chemo. This is a simple blood test. If they are low, ask your oncologist if you can safely take vitamin D3 during your treatments.

Accept that you will not always feel positive; you will have bad days and that’s ok.

Don’t be afraid to ask others for help. People are more than willing to help; they just don’t know what to do for you unless you ask specifically.

If you have had surgery before chemo, use lots of pillows for sleeping post surgery to prevent you form rolling over. The drain is the worst part of the surgery. Mastectomy can leave your chest numb, not just the incision.

MOST IMPORTANT ONE?

When you are getting your “team” together after you are first diagnosed…you know…all the people who beg you to let them know what they can do for you….have your Mom/sister/dearest friend work up a 6 MONTH or 1 YEAR commitment sheet, acknowledging that treatment goes on for a long time. Ask them to cook dinner once a week for 6 months, to come over the first Sunday of every month to help clean for one year, etc. The hardest part can be when everyone has moved on and forgotten, and you are still bald, menopausal, and feeling alone.

One gal says that toward the end, the worst part was that food didn’t taste like anything.

Fear not; the clouds do part, your hair grows back and you can almost delight in you favorite snacks within a very short time of when it’s over! Until then, by all means go from couch to bed and back no more than twice a day. Eat only what you feel like eating. Order your family around and make them scrub the toilets. Now is the time to play the cancer card, big time!

Canada has a volunteer driver program for appointments, so call them if you need help.

Have a family member or friend help you prepare meals in advance for your family and freeze them, or ask a family member or friend to prepare the meals for you. (You may not feel up to eating them, but they will be there for your family on the day that you have chemo, and the days following chemo).

Tell your husband and entire family that the doctor prohibits you from doing housework during this time. This can be for as long as a year! Do not push for any longer than that, or they will become suspicious.

Make a “woman cave”…spare bedroom or a reading corner where you can sleep and just be alone. Do this prior to starting treatments.

Make arrangements in advance for childcare. Especially for the day of chemo and possibly for days following chemo.

Make arrangements for acupuncture throughout treatment. If you do receive acupuncture, the gals on the site will tell you to make sure that the area where the needles are to be inserted is cleaned really well with alcohol.

Do your errands the days before chemo, or have someone do them for you.

Expect hair loss with several of the chemo meds. Check with your Oncologist. Prepare ahead of time by purchasing a wig, caps, several scarves, hats. Get a couple of wigs that are completely different from your regular hair. Realize that these are all hot!

Shave your head before your hair comes out on its own.

Some of the gals have used painter’s tape and even duct tape to remove any stray hair that may linger.

Buy a set of satin pillowcases for your use exclusively. Some gals found them at Target; others found them at Bed Bath and Beyond. They are so soothing, and your beautiful almost bald, and baldhead will simply glide over them.

You may experience times when your head “hurts’ when your hair is falling out. That is normal.

There is a Canadian product…Nisim shampoo for helping hair re-growth.

In the US, the gals say there are 3 products from Nioxin which are suggested for hair re-growth. They are Scalp Therapy, Follicle Booster and Cytonutrient.

One gal said that she had bad nails with ACT.They become thin, some even fall off, brittle, stained looking, some black marks which never left. She had the same problem which started while she was on Taxotere. These meds can also cause some of your toenails to become thicker.

You have a choice as to where your chemo port goes. Have them mark the spot while sitting up prior to lying down, as the scar can be in an awkward position.

If you have a port on the left side, you can get a Rx from your oncologist so that you do not have to wear your shoulder belt while driving. This can irritate your port.

Take someone you can laugh with to chemo. It helps pass the time more quickly.

Telephone support to talk one on one to someone who understands. Cancer connect in Canada.

It has been suggested to sleep in a recliner for the first 4-5 days following each chemo treatment. It helps prevent nausea and headaches. If it is possible, move the recliner to the bedroom before the first chemo, just to be prepared. Some prefer to have it in another room. Possibly “the woman’s cave”.

Make sure that you have all the prescriptions filled that you will be taking prior to each treatment!

Pack a “chemo bag”. Put in magazines, your favorite soft blanket, book, iPod, crossword puzzle book, newspaper, snacks, water, paper/pen, notebook, soothing music, salty foods such as pretzels.

Do not put your favorite songs on your iPod to listen to, or you will neurologically reprogram your mind and throw up when you hear them in the future.

From the time they start administering the med, try visual imaging. Imagine those cancer cells being swept away by the ocean waves, or taken away on the wings of a beautiful bird, or being caught in the bubbles of bath water, popping and floating down the drain. Peaceful imaging is suggested. Peaceful thoughts are suggested.

Some have experienced the “blurred” vision almost as soon as they start administering the meds. Almost all have said that they experienced the “blurred” vision for days following chemo. It has been difficult for most to even type on the computer, and reading or watching the television presents a problem.

Be patient…things can change, when going for your chemo treatments. Don’t set yourself up for a rigid schedule as delays do happen, i.e.; bookings, WBC not where they have to be to take the treatments. The first treatment can take as long as 6-7 hours.

Have someone go with you to your chemo treatments, or take you and pick you up. You will not be able to drive and should not be driving a vehicle.

Do not go to the mall, or shop for food afterwards. You may think you are feeling fine, but others have tried this and it is not a wise decision.

Do not lie in the sun after treatment.

If you are felling up to it, go out for a good meal after treatment. It can be the last good meal you will enjoy for a few days.

Wear something comfortable to treatments.

Stay up the night before so you can sleep during treatments.

Emend above all!!!

Do take all of the drugs they give you for nausea on time!

You might want to try Compazine for the 5th and 6th day after the anti-emetics were to be stopped, for “breakthrough” nausea, which may happen.

Some gals have gotten the prescription for medical marijuana, and reported that it did help. You have to do whatever it takes to get you through these treatments.

Some gals have used Lorazepam when they are feeling overwhelmed by everything.

Avoid spicy foods, unless you crave them. Eat what you crave.

Avoid sugar to lessen mouth sores (and a good idea in general).

Day of chemo have a light meal. Some have suggested to carb starve the day of chemo, and as soon as they start administering the meds, carb load.

To lessen dry mouth, suck on hard candies, popsicles, or ice chips. One gal has recommended fudgesicles as she said the ice chips made her feel nauseated. Do the ice chips during infusion. Start this before chemo, continue during chemo treatments.

Use magic mouthwash to prevent mouth sores. This is one of the prescriptions you should have filled before you start chemo.

Do not look when they shoot the nasty red one (Adriamyicin) in your vein!

One gal says that instead of thinking of the Adriamyicin as the “red devil”…she told the chemo nurse that the chemo was “liquid gold” coursing through her body getting rid of the cancer cells. Try to imagine the chemo as the allies in the war you are waging against triple negative breast cancer.

Drink 3 liters (quarts) of water a day at least while on chemo, and start a day or two before chemo. Drink lots and lots of water before chemo, during chemo and continue to do so every day after chemo. Water detoxifies the kidneys.

Drink more fluids clear in color such as apple juice, ginger ale, tea, broth, jellos, Gatorade, High-C.

Note: Some people found that they could not tolerate fruit juices as they can cause diarrhea.

Cauliflower/radishes help with bad taste in the mouth.

Have them use mephitic tape if you are allergic to adhesive tape for dressings/incisions post op.

You may notice a chemical smell on your clothing and bed linens. This is from the chemo. You will also notice this smell after using the toilet. You are excreting the chemicals from your body. Again, stay hydrated as it flushes all those chemicals out of your body.

You may feel a burning sensation in the bladder and in the vaginal area, and some gals have reported that they felt this as soon as the meds were being administered. You may experience a burning sensation when you void. There is a possibility that the vagina and the urethra will become dry, due to the chemo.

While you are having the meds administered, you will probably have to use the bathroom. If you happen to look in the mirror, do not be alarmed at your skin color. It will have changed to a grayish color. That is also from the chemo meds.

If one of your meds is Adriamyicin, do not be alarmed if your urine is red. That is why you must continue to drink the water.

Eat a low fat, high fiber diet. Constipation can present a problem during chemo treatments.

Prepare for constipation by taking prescribed medications in a timely fashion

For nausea eat raw almonds and crystallized ginger together.

Eat bananas, potatoes and meats to maintain a normal potassium level. Potassium is needed for muscles to function properly.

A change in diet may occur since your taste for foods that were your favorites may not taste as good now. Some have said that they went back to the “comfort foods” of their childhood, such as soups and grilled cheese sandwiches.

Eat what you want and when you want. You must eat!!

Eat small meals. Some have suggested as many as 6 meals a day.

Make an effort to exercise even if it is just for a little while each day.

Don’t overdo it with exercising but also don’t believe them when they tell you “if you get lymphodema it never goes away”.

Do not overdo. Be flexible. If you are feeling better, plan an outing or chores. Please do them in small frames of time, until you know what you can handle. You may think you have the energy, but may not. This cannot only set you back physically, but it is emotionally frustrating.

Do not attempt to walk long distances. The hills (especially in Seattle), will still be there when you are feeling better. You will tire easily. Gauge yourself. Or, you can have someone drive the car right along where you are walking, and they can take you home when you start to feel ill. Otherwise, you may have to call someone to come and get you.

Do sleep as much as possible. Some say it is like sleeping off a hangover.

Some have reported becoming very dizzy when trying to shower the day of, or even a few days after chemo. Make sure that someone is nearby when you shower, in case you need help.

Have something to do at night when the steroids keep you awake. Don’t try to fight it, and sleep when you can.

If you need a sleeping aid, in a study, Unisom was found to be the one to use when you are on chemo. It is not habit forming. This was recommended by a brother-in-law who is a Registered Nurse.

Do things for yourself. Take a bubble bath, go out to lunch or do a little bit of shopping on the days you feel up to it. Go to see funny movie or rent them to watch at home. Read a funny book.

Go topless (bald) often. With some great earrings and makeup, you’ll look fabulous! Do the “Look Good…Feel Better” class.

Make plans for the future, such as preparations for planting a garden, or planning a weekend get-a-way.

One bit of advice from someone was that even after a year, you feel like you are in a dream.

Listen to your body. When you are tired, rest.

 

 

 

RADIATION TIPS

 

 

Don’t believe that radiation is “nothing compared to chemo”, or that it has “virtually no side-effects, save a little fatigue.”

Take a break if your skin needs it no matter what the docs might tell you. This is your body and you know it better than anyone!

Don’t freak out about skipping a session. They’ll just add it to the end and you need to listen to your body when it says enough is enough.

Do have them give you a script for BIAFINE. NOTE: most insurance companies won’t cover it. So it will cost you between $39.00-$65.00.

Stay out of the sun and tanning beds. (Don’t count on beach umbrellas to protect you)

Buy an Aloe Vera plant. They are always good to have in the house for burns and if you need it for rads, it will be there. Take some of the leaves from the plant and put them in the fridge…..mmmmmmm feels so good!

Get Aquaphor. It’s a cream, almost a gel that you can get at Target, Walgreens, anywhere. It seems to help a lot, especially if you use it from the very start of rads, even before you start getting red. Take a little bottle in your purse, and put it on right after treatment. You are not supposed to use this product or any other cream, deodorant, etc., beforehand as they will affect the rads.

It has been suggested that you use only Dove unscented soap. Some soaps can irritate the area being radiated, causing it to burn. Consult with your oncologist as to what they recommend.

Don’t be shy about getting comfortable on the table, before they start contorting and positioning you. There is this little head rest thing they put under your neck that we suspect is really a brick or a big cement block or something, and if you get in the wrong position, you will be very uncomfortable for the next 20 minutes.

Don’t spend money on those silly Aveeno oatmeal packs. They contain oatmeal powder and nothing else, which you can also make by putting generic oats in your own blender.

Wear something loose, silky or soft against your body such as a camisole. Nothing tight since it would rub against the tender skin.

Some have suggested that you wear a mans cotton shirt.

It is suggested that you wear pure cotton, (laundered many times), white men’s undershirts inside out so the soft, white cotton is touching your skin. Iron then to sterilize them. No seams will ever rub the sensitive area above the shoulders and neck region or the underarms because there are no rough edges.

Do “eye yoga” during the session….it will make the time go quicker and help with any blurry eyesight.

 

You are not alone! The gals on the TNBC Foundation Site are here for you every day!!