January 2013 chemo group

rock wrote:

These lists may be read in conjunction with the conversation created by www.breastcancer.org member Melissaga ("Tips for Getting Through Chemotherapy") on December 6th, 2006.  Melissa's tips are great. (Posts by member "otter" are invaluable, and reliable). (The initial list & tips were compiled by my wonderful friend Miki, though it has been updated and modified a lot since.) I got tired of bumping and reposting these so started a new conversation. I will update it until December 2008.   As Otter has pointed out elsewhere, before you rent a U-Haul and head to Walmart to buy everything on the list, bear in mind that you are NOT going to need most of it! It's here as a resource for when/if issues do arrive, not as a list of must-haves.

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 to this conversation, 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'.)

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. 

P.S. Keep moving (e.g., go for walks). I swear it helps!

rockthebald, nyc.  43 (Today's my birthday!) Receiving treatment at Memorial Sloan Kettering in 2008.  IDC, DCIS, LCIS. 1.8 cm. Stage 1/2-ish (T1No (i+) or T1N1 (mx)) Chemo: dose-dense, A/C + T. 

A Pre-Chemo Shopping List

None of this is "new" but it might be helpful to someone (like me) whose chemo started on short notice.

- Purell-type hand-sanitizer. 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) or Ibuprofen (ask your oncologist which is preferred; some chemo drugs work the kidneys, others the liver so your doc may prefer one drug over another)

- 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 - Anticonstipation: Walnuts, pecans, almonds, dried apricots, prunes, prune juice, Colace, Miralax, Senekot-S, activia  yogurt  (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) - another thermometer (since tracking temp matters) - at least one extra box of Kleenex - indiv packets of kleenexes (disappearance of nose hairs = dripping nose) - 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.)

- Thing of Clorox-type wipes - artificial tears for dry eyes (consider Renew or Similasan brands) - acidopholus capsules for yeast infections if you're prone to them - nonlatex gloves to wear when doing dishes, etc. to reduce nicks and cuts, at least on those low blood count days toward the end of treatment.

Food - unsweetened indiv things of applesauce - individ things 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 (inc indiv 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 constip) - 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

For those of us facing hair loss:

www.4women.com

www.sparklingearth.com/product... www.bandanas.net/skullbest.htm www.myskullcaps.com/ www.sungrubbies.com

Pointers on tying scarves: www.coveryourhair.com/HowToTie... www.tznius.com/ This has more extensive scarf tying instructions (click on link in nav bar or at the bottom of the home page). www.youtube.com/watch?v=O8QTlO... - You Tube: search "how to tie head wraps." The video is by galaxyswurl.

Cheap synthetic wigs: 123wigs.com/wigstore/ More expensive wigs: www.paulayoung.com/

Inexpensive synthetic wigs may be  available on ebay

(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.  See breastcancer.org "Starting Chemo in May 2008" conversation)

******* 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 or Ibuprofen (ask your onco), 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

A description of the functions and side effects of common chemotherapy drugs is available at www.chemocare.com.

General care • Drink a lot of fluid, preferably water.  And when I say "a lot" I mean "a normal lot" not so much that you get sick from drinking too much water!  You want to be well-hydrated (makes it easier to draw blood and to start an infusion; helps metabolize the drugs post-chemo, too). 

• For moisturizers, you may prefer unscented lotions (e.g., Aquaphor is recommended; I liked Udderly SMOOth with urea, available at www.drugstore.com). • 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!
• • MOVE AROUND. Try to go for a walk on most days if you can. You will be glad you did. It keeps the extra pounds off (that some people gain from the steroids), gives you more energy, lifts your mood. I was never one for regular exercise before but walking? I'm sold on its benefits.

• 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 • The mouth sore cocktail:  Equal parts of any liquid benadryl and liquid Maalox. Only mix up what you are going to use (about 1 teaspoon of each). Swish in mouth for a minute or two like a mouthwash. Then spit out. • I put lemon or lime drops or slices into my water glass - • Some women recommend 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.

Locating "Good veins"

• Yesterday I learned some handy-dandy pointeers for making it easier to locate a "good" vein from which to draw blood or start an IV. • A/C can be hard on the veins. At some hospitals, women on A/C automatically have a port surgically installed. At MSKCC, however, I was given the opportunity to use my veins. The goal is to keep my veins in good enough health that I can use them for all 8 treatments. Another goal is to "start low" on the arm so that if one vein is blown, then they can work their way up. A nurse can go to a higher vein for attempt #2, but she cannot go lower.
• • The standard advice is "Drink lots of water" because hydrated veins are easier to find and stick. I still "blew" a vein on the back of my wrist on #4. At #5, I asked the phlebotomist (not the nurse), "Any pointers? Any advice?" She said, "Well, I've noticed that your hands are always cold. Cold veins don't work very well. Warm up your hands before they put in the IV, draw blood, etc. You could use a hot pack or you could just rub your hands together. Run them under warm water. " That's odd, my hand is cold? Why is that? And this wonderful, brilliant phlebotomist said, "You're probably drinking a lot of water. Are you holding your water in your right hand? It's probably cooling off your hand and your circulation in that hand. Either drink room temperature water or hold the bottle of water in your other hand." I could have kissed her.
• • The nurse also has a technique for finding good veins. She had me hang my arm down off a pillow and pumping my hand open and closed to make it easier to identify a vein.    The result? My IV was about 2 inches above my wrist (still low, I have another six inches of forearm to use!) and it went off without a hitch.
• Pain/aches • Tylenol is the first pain killer of choice for A/C as it has the fewest possible side-effects (I was told "No Ibuprofen or aspirin.") The poster suggested taking a painkiller 30 minutes prior to the Neulasta injection, and then regularly for 2-3 days after. A/C & Ibuprofen are processed through the liver; Taxol and Tylenol are processed through the kidneys. For this reason, I was urged to use Ibuprofen w/ Taxol and to use Tylenol w/ A/C.  [I find it all very confusing; "Ask your doctor which pain reliever is right for you."]

• 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.  And trust me, constipation on chemo can be excruciating. 

• 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 lots 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.

•  Bleeding hemorrhoids are not uncommon if you experience a lot of constipation. Prevention is key! Lotsa fiber! If it does develop, Tux pads can make you more comfortable, or baby wipes. And Colace or Fiber One or a stool softener can help you avoid straining.

• 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?)

Neuropathy and Hand Foot Syndrome (associated with the Taxanes)

• * Avoid going barefoot. Wear slippers or "crocs" always.
• * Gently massage feet and hands with lotion to keep them soft and improve circulation. (I like Udderly SMOOth with Urea. Reasonably priced; available at www.drugstore.com)
• * Wash hands (and dishes) in lukewarm water, not hot.

* Ask onco about taking 50 mg of B6 to address neuropathy (tingling, numbness that often appears first in feet and hands)

Hair loss (A/C around 14-19 days after first chemo) • Hair net to wear at night! • 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) 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 RBC: Meat chili, clams, oysters, some beans, nuts

Here is a link for Summer Express: 101 meals to be prepared in 10 minutes or less.

www.nytimes.com/2007/07/18/din...

And 101 fast recipes for inspired picnics

www.nytimes.com/2008/07/02/din...

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.)