I am posting this list, as it is fruit of a lot of chemo-babes pains… and experiences. I find it complete and useful. Please see the credits at the end of the list.
The usual caveat applies: Not everything works for everybody! We all find our own path, admittedly, with the help of others on the path, and who have walked it before us. Information is key in this fight!!!
Pre-Chemo Shopping List
None of this is “new” but it might be helpful to someone (like me) whose chemo started on short notice.
- Hand-sanitizer in a bottle. I’d recommend getting a couple travel sized bottle as well to throw in your backpack, glove compartment, etc. (Beware the scented ones; they can smell like cheap Tequila!)
- Tylenol (painkiller) - Paracetamol/acetaminophen - in particular, if you are having Neulasta shots as they give dull aches
- Biotene mouthwash, Biotene also makes a small bottle of mouth rinse which helps prevent/treat sore mouth. Warning: Mouth rinses and washes containing chlorhexidine and cetylpyridinium chloride – like Crest pro-health – may stain your teeth. Seriously.)
- Imodium (anti-diarrhea) - note, diarrhea may be induced by the anti-nausea medication. Read the notice, and ask the doctor.
- Anticonstipation: Walnuts, pecans, almonds, dried apricots, prunes, prune juice, Colace, Miralax, Senekot-S (No need to buy all of these. See what you need & what works for you!)
- Pepcid
- disposable flatware, plates and cups (for times when you’re tired or immune-suppressed; plastic flatware helps offset metallic taste in mouth)
- Sugarfree chewing gum, sugar free hard candy (some people prefer lemon flavor) or breath mints
- Protein food sources (e.g., peanut butter, nuts, clams, oysters, meat, avoid soy if you are ER+)
- unscented moisturizer
- sunscreen (for face and for everything else; SPF 15+)
- new or washed shower curtain liner (minimize bacteria, mold)
- new toothbrushes (mouth is really vulnerable to infections, sores; oral hygiene is super-important) - extra soft!!!
- another thermometer (since tracking temp matters)
- at least one extra box of Kleenex
- indiv packets of kleenexes (disappearance of nose hairs = dripping nose)
- a squirt bottle or a box/packet of the flushable moist wipes (I use these wipes the first few days after chemo to prevent the discomfort/burning that may accompany urination; these may help soothe irritated tissues. Others use a squirt bottle.)
- Container of sanitizing wipes
- artificial tears for dry eyes (consider Renew or Similasan brands)
- acidophilus capsules for yeast infections (keep in fridge as they have short shelf live)
- non-latex gloves to wear when doing dishes, etc. to reduce nicks and cuts, at least on those low blood count days.
Food
- string cheese (can cause constipation if eaten during the chemo!)
- unsweetened single servings of applesauce
- single servings of cottage cheese (I find smaller servings less daunting on a queasy stomach, and may be less wasteful in the long haul)
- Eggbeaters (bland, protein)
- brown rice
- crackers (individual packets of animal crackers or Saltines to carry around or keep in desk drawer or nightstand for queasy moments. ER+ should watch out for soy – it’s in a lot of cracker sandwiches)
- dried apricots and fruit (helps with constipation…)
- lentil soup, black bean soup, chicken broth, or some mild soup, just in case you wind up with an upset stomach and need something bland to eat
- orange popsicles, orange Pedialyte
(Don’t rule out just going “bald bald” most of the time, and wearing sunscreen. I did and it was much cooler – NYC spring/summer – and easier to forget about the hairloss)
Eye-liner, eyebrows pencils are helpful if you face eyelashes/eyebrows loss. If you want to consider permanent tattoos, must be done BEFORE chemo (during chemo the colors aren’t stable).
*******
Chemotherapy Tips
As with all things chemo, everyone is different. What works for one person (or one therapy), may not work for everyone.
My “chemo bag”: (A great project for a friend). Assemble a small make-up type bag (say 4"x4"x6" or smaller) that you can move from purse to backpack back to purse to car or whatever that includes some of the stuff that’s good to have on hand when you’re out and about: digital thermometer, Tylenol, toothbrush, toothpaste, Breathsaver-type lozenges, chapstick, unscented hand lotion, eye drops, antibiotic ointment, Purell sanitizer or handwipes, Saltines or animal crax, Kleenex, thin cap to ward off any sudden chills, mouth rinse. And maybe a maxi-pad in case of any port or drain mishaps. (Why this stuff? Important to ward off mouth sores, avoid fever/monitor temp, chemo dries out eyes, mouth, skin; lack of nose hairs causes drippy nose.)
Pre-Chemo/Things to ask about
• What sort of antiemtics (anti-nausea meds) are you getting? According to American Society of Clinical Oncology guidelines, everyone should be getting Emend (for nausea), a steroid (dexamethasone aka decadron is the most common), and a medication like Kytril or Zofran (the Aloxi you may get in your IV at chemo is in the same family of drugs). Drugs like phenergan and compazine are NOT considered sufficient but might be used in addition to the others.
Possible side-effects
General care
• Drink a lot of fluid, preferably water.
• For moisturizers, you probably want something as scent free as possible (e.g., Aquaphor is recommended).
• If you get a manicure or pedicure, bring your own manicure set
To keep your overall health up
• Make laughing and relaxing as important as cleaning!
• Support your immune system with iron- and protein-rich foods (but check with doctor before taking supplement)
• Careful with protein bars (or any other foods) that contain soy if you are ER+
• Closing the toilet seat before flushing will dramatically reduce distribution of bacteria in the bathroom. I was told to flush twice first 2 days after chemo (I was on A/C).
• Replace (or wash w/ bleach) the shower curtain liners.
• Get soft, seam-free (or as seam-free as possible) hat for sleeping-in
• Wear latex-gloves when cleaning to avoid nicks and scratches
Metallic taste
• Use plastic flatware instead of metal
• Biotene mouth wash and/or mouthrinse (and/or toothpaste and chewing gum, lemon/lime cordial, Breathsavers mints)
• Oasis products were also mentioned
Mouth sores
• “If you get mouth sores, there’s a little cocktail you can whip up with liquid benadryl and Maalox.”
• I put lemon or lime drops or slices into my water glass -
• Someone recommended Vitamin C supplements but my dietitian said “No Vitamin C supplements for women with breast cancer EVER.” (I posted her explanation elsewhere on www.breastcancer.org.)
• Change your toothbrush frequently
• Eating a popsicle or ice chips or something else very cold, while being given adriamycin
Hairy tongue
* Frequent cleansing with combo of water, baking soda and salt is recommended,
* Sucking on lemon wedges to re-encourage salivary glands,
* Brushing one’s tongue with a toothbrush, hydrating with water. Cytoxan seems to mess with the salivary glands.
Port care
• The nurse may clean the port by injecting Heperin into it. A horrible taste can sometimes be avoided by holding your nose while the Heperin is injected.
• A numbing agent may make entry in and out of the port less painful.
Pain/aches
• Tylenol is the first pain killer of choice as it has the fewest possible side-effects (I was told “No Ibuprofen or aspirin.”) If you are going to be getting Neulasta, Aleve was recommended as a pain killer for aches (I used Tylenol successfully). The poster suggested taking a painkiller 30 minutes prior to the Neulasta injection, and then regularly for 2-3 days after.
• Regular exercise (e.g., a walk) seems to help lessen or prevent Neulasta pain for many of us
Sleeplessness (esp in first few days post chemo)
• Ambien CR
• I’m nervous about “sleep aids” so the nurse recommended I take a Benadryl.
Acid reflux/indigestion
• An H2 blocker such as Pepcid or Nexium
Constipation
• Eating fiber in days before chemo can help prevent/lessen constipation
• Prune juice (you can mix it with Milk of Magnesia for a “cocktail”)
• Colace (docusate sodium) is an over the counter stool softener to have on hand.
• Senekot-S is a gentle laxative with a little Colace added in.
• Snacking on things like prunes or dried apricots can help
• Lots of water helps here, too.
• A square of chocolate ExLax the night of chemo, and another one the following evening. Then gallons of water and tea. Eat active culture or probiotic yogurt every single day. The secret, the poster suggests, may be taking taking something at the same time as the chemo before things can get really bottled up, so to speak.
• A cup of coffee (if you’ve gone ‘off it’) may help!
• Avocadoes (eaten straight out of the skin, w/ a little salt, pepper, & olive oil) are helping me out!
Diarrhea
• Imodium is good for stopping this
• Key worry is dehydration, so keep drinking water!
• Stay away from sugary things, as refined sugar can aggravate diarrhea
• From a dietary perspective, you can try the BRAT diet: Banana, Rice, Applesauce, Toast
“Nether Region” Care
• If you wind up with diarrhea, I strongly recommend the flushable moist wipes; they really help with general soft tissue irritation.
• The first few days after chemo, I use moist wipes to try to prevent discomfort.
• Someone else keeps a squirt bottle (like a water bottle or a ketchup bottle) by the toilet and to rinse off with warm water after urinating for the first week or so. The chemo often burns on the way out, causing discomfort. Remember to have yourself checked out if you have bladder symptoms, because lowered bloodcounts can lead to bladder infections (or is it the other way around?)
Hair loss (A/C around 14-19 days after first chemo)
• Hair net to wear at night, if you don’t want to shave your head.
• You may want to get a silk, satin or flannel (very soft/smooth) pillowcase for when your hair begins to fall out; scalp may be sensitive, stubble can gouge! (My sister made me a flannel one.)
• I got my long hair cut short pre-chemo. No clue how to style short hair. My “stylist” said my I should style my new short hair with the tips of the fingers applied to the tips of the hair (rather than my hands).
• About 18 days after my first A/C, I had my head shaved.
• When hair on head starts to fall, a lint roller (I liked the velvet covered kind; others used the tape) helps to remove lingering hairs.
• Hair in pubic area often starts to fall out first. (See Starting Chemo May 2008 converation to get a sense of when, where and how much hair is lost over time!)
Food.
Protein and iron rich foods may help boost Red Blood Count: Meat chili, clams, oysters, some beans, nuts. Ask your doctor before you decide to take Iron supplements.
Supplements:
Check with a dietician or a nutritionist about supplements and multivitamins. (My A/C + T regimen may contribute to bone loss. I checked with MSKCC dietician & a nutritionist and they recommended I take Calcium Citrate, Magnesium, Vitamin D3 (cholecalciferol) during chemo (and forever) to combat bone loss. They said “not during chemo” to everything else, including a multivitamin. They also said “never” to most soy products [I am ER+] – only 2 servings a week-- and Vitamin C supplements.)
Credits:
These lists may be read in conjunction with the conversation created by www.breastcancer.org member Melissaga and RockTheBald (“Tips for Getting Through Chemotherapy”) on December 6th, 2006, with help from Miki.
You should feel free to distribute this info high and low, translate it, etc.! All I ask is that whenever the list is posted,
a) credit be given where credit is due to all contributors & editors (not just me, but also melissaga, the women of breastcancer.org, Mary C & Deirdre P., the “diffusers,” any translators, etc!);
b) the “new” post(s) refer back community.breastcancer.org/topic/69/conversation/706846?page=1#comment_950219 , which is the one I will update/assume responsibilty for, at least until December 2008; and
c) people clarify their changes & additions (misinformation is just too common and while I welcome being given the opportunity to correct my mistakes, I do not want to be held accountable for others’.)
rockthebald, nyc.