Nov 3, 2018 02:35PM MinusTwo wrote:
Nico - thank you so much for continuing to bump this thread. GREAT info.
Regimens, side effects, and support from others going through chemo.
Posted on: Jun 6, 2008 03:29AM - edited Apr 24, 2015 01:59PM by Moderators
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.)
- 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!)
- 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.
- 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:
Pointers on tying scarves: http://www.coveryourhair.com/HowToTieTiechels.html
http://www.tznius.com/ This has more extensive scarf tying instructions (click on link in nav bar or at the bottom of the home page).
- You Tube: search "how to tie head wraps." The video is by galaxyswurl.
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)
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.
A description of the functions and side effects of common chemotherapy drugs is available at www.chemocare.com.
• 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
• 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
• 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
• 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
* 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.
• 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"
• 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.
• An H2 blocker such as Pepcid or Nexium
• 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!
• 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)
* 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!)
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.
And 101 fast recipes for inspired picnics
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.)
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Nov 3, 2018 02:35PM MinusTwo wrote:
Nico - thank you so much for continuing to bump this thread. GREAT info.
Nov 27, 2018 08:10PM MLAnne wrote:
Thanks! I just created a wishlist on Amazon since my Chemo is scheduled to start after the holiday. Anything I don't get as a Christmas present, I can order for myself later.
Dec 1, 2018 09:07PM MinusTwo wrote:
Nico - Happy 1st of December. Thanks for continuing to bump.
Jan 6, 2019 03:24PM MinusTwo wrote:
Nico - you are so much better at remembering than I am. Thanks. And hope this New Year treats you well.
Jan 6, 2019 03:40PM nanette7fl wrote:
Dh & I bought one of those new foam mattress pads and it's 4 inches thick from Big Lots last year. It has a chill gel pad on one side. Helps keep us cool while we sleep!
Jan 13, 2019 07:01PM Mylife42 wrote:
I will be starting my first chemo treatment on Tuesday. I have a chemo bag packed for when I go to keep me occupied, but these tips are going to be really helpful as not sure what to fully expect!
Jan 13, 2019 08:59PM MinusTwo wrote:
MyLife - wishing you the best. I had all of these tips ready but luckily didn't need most of them. May you experience the same. Go easy on yourself.
Jan 19, 2019 09:37PM - edited Jan 19, 2019 09:44PM by Rojsn
First chemo Feb15/201
I did my surgery on December 28th 2018 and I should do my first chemo on Feb 15th 2019. It's herceptin and paclitaxel for 12weeks, every week. I don't know how much it will be strong and how will the side effects! Is it possible to go to work
Jan 20, 2019 09:36AM MinusTwo wrote:
Rojsn - Many people do work through chemo, but every body is different. I had chemo on Thursday and the day after wasn't bad since I was still on steroids. That way i could crash all weekend. Maybe some shorter days?
Take a look for the current chemo thread. These are groups of people who are going through it together & can compare. I also read the month or quarter before. Examples are January chemo group, winter chemo group.
Jan 30, 2019 05:38PM Glittertits wrote:
holy cow I'm glad I
Found this site and this thread! I'm starting 2/5/19 (day after my birthday..hooray) and I def need to add some stuff to Ye Olde Chemo Bag.
Jan 30, 2019 08:57PM Moderators wrote:
Welcome, Glittertits! We’re so glad you’ve joined our community and that you’re already finding helpful information! Best of luck with the start of your treatment!
Jan 31, 2019 07:26AM MinusTwo wrote:
Glitter - sorry you had to join us but glad you found this site. It was so useful to me. Hope all goes well next week.
Feb 3, 2019 06:58PM Glittertits wrote:
Re the amazon wish list-it’s made it soooooo much easier for people to find the right thing I need AND to add things that helped them or a loved one. All hail amazon! Now, to get through the next 36 hours til I get my port accessed for the first time and get this show on the road.
Mar 2, 2019 05:48PM MinusTwo wrote:
Nico - so glad you're still faithfully bumping this thread. Such amazing information.
Mar 2, 2019 07:50PM Pinky24 wrote:
My wonderful neighbor brought me carrot ginger soup after my first AC, and I swear it saved my life. Nothing else tasted good at all, but I craved that soup
Apr 6, 2019 09:08AM S3K5 wrote:
This is a great site for information for people facing Chemo and the side effects.
I have gone through ACT in 2008 and now I am back with mets in bones and liver. After trying a few oral chemo regimens, I just started weekly Taxol. My oncologist/nurses at MSKCC were very helpful in educating me about dealing with side effects - the most important to me was avoiding complete hair loss and neuropathy. I thought I would add my experience here.
MSKCC has a cooling system call PAXMAN from where I ordered the cooling cap and cover. The onco nurse helped me put it on and hooked me up to a cooling machine so I didn't have to change the cap every 20 mins. I am sure there are other cooling scalp methods that you could use instead of Paxman system, which is kind of expensive. By the way, these tips are available on 'Weekly Taxol" forum too: https://community.breastcancer.org/forum/69/topics/788735?page=356#post_5382385.
For hands and feet they provided disposable ice paks over my fingers and toes (put on a pair of disposable gloves to keep them in place). Hopefully this will help minimize nail issues and neuropathy. I will find out if these cooling methods work for me in about 6 weeks. Everyone is different. According to my onco, it works for 50% of women in her care.
Please keep this posting bumped up and please add any tips you may find to deal with this monster disease and the treatment side effects
Apr 6, 2019 11:37AM MinusTwo wrote:
S3K5 - thanks for posting your experiences and upcoming treatment. Pretty much everyone thought I was nuts at my infusion center when i insisted on icing. Since the icing is supposed to be 30 min before & 30 min after my 60 minute Taxotere treatments, I took 6 bags of frozen peas. One for my hands & one for each foot. They let me use the freezer in the employee's fridge and switched them out for me half way through the 90 minutes. For my feet, I anchored them in a portable Igloo ice chest & put one package of peas on top or the toenails of each foot. For my hands, I just held the peas & dug my nails in. Needless to say I kept a blanket between my hands and my lap.
I neglected to ice my toenails the first time - which was of course the loading dose. The big toe nails partially detached but never came off. I didn't have any problems with my finger nails (well, related to this - since of course they were brittle & tended to split after treatment).
As for the neuropathy, I had Taxotere AND Carboplatin - both with the potential to cause CIPN (chemotherapy induced peripheral neuropathy). My doc gave me a choice to stop or reduce the doses as my toes got more numb, but since I was already being treated for a recurrence and i was hormone negative & HER2+, I decided to go for broke. For awhile I couldn't do up my own pants, but now I have very little problems with my fingers. However 5 years down the road my feet are still mostly numb. Luckily there is no pain, but there is no treatment for neuropathy - only for the pain. My feet used to be solid blocks of ice. I have some feeling in some toes now, but I have to be very careful walking since I have no way to balance.
I just let my hair go, but I used Latisse on my eyebrows & lashed. Although they thinned some, I never lost either.
Sorry you're having to go through this again. Best of luck with your treatment.
Apr 9, 2019 05:05PM Nico1012 wrote:
S3K5 and MinusTwo ~ Thank you so much for sharing your tips on getting through chemo. Please continue to 'bump' this thread with it's valuable information and personal experiences in getting through treatment with minimal side effects.
Apr 9, 2019 07:39PM MinusTwo wrote:
Nico - ALWAYS!!! Even if the posts aren't every day, the information back to page one is really valuable.
Apr 12, 2019 08:07AM - edited Apr 12, 2019 08:07AM by MinusTwo
fac - It's Memorial Sloan Kettering. If you google MSKCC you will be able to see all the locations.