August 2013 Chemo Sisters

raynaj

Well, its Day 12 and my hair is starting to fall out, I guess I will be getting the clippers out over the weekend. I feel so vane complaining about this when so many of you are dealing with worse situations right now but I think losing my hair is going to be the time that I leave denial and realize this is so real and now I will look sick. At least with our hair no one can look at us from across the street and say "oh, she must have cancer". Well, I guess it is what it is. No sense in complaining about it, won't change a thing.

Hope everyone has a good weekend.

For those who started chemo yesterday or today, way to go you're on your way, Just think if you are only having 4 treatments you are 25% done, in a manner of speaking.

Love, Rayna

raynaj

Cutie

I thought I was over the worst of it on Day 10 but I must have spoke too soon by night I was starting to ache again and Day 11 introduced bone pain in various parts of my body. My nail bed on my thumbs is turning kind of pink, I'm hoping this doesn't mean that my nail will fall off. My nails are all really tender. Now Day 12 and my hair is starting to fall out and from what I hear it will happen pretty quickly, like 2 days. This really freaks me out. I was just shopping with my son and was going to buy a hairdryer and realized I won't need one, then I looked at mascara and started crying in the store when I realized my eyelashes will fall out too. My sweet son looked around to make sure no one saw his Mom crying in the cosmetic aisle and then came and gave me a hug and said "It's going to be okay Mom". I'm suppose to be comforting him. lol

We will get through this.

Love, Rayna

Anonymous

Rayna, it will be okay.  My hair took 4 days to fall out.  Washing it every day speeds this up as does combing it.

I forget who asked but my port was put in Wednesday and i am in PAIN and the tape covering tore off skin so now where I will have the little bit of skin left after a bilateral mastectomy this winter, I now will have a scar.  I scar easily.

Re: Hair: I am fat, no really. I'm fine with it and am working on it as we speak but my point is that people knew me because of my hair (especially since I am a nerd and in a nerdy/serious field of work).  It was gorgeous Breck Girl hair (okay so I'm older than you probably). I think that's fair to say.  Yes, like the rest of us I have other good qualities but the hair was great. So I really hated losing it but then realized that the wigs (expensive or cheap ones) were for me not an adequate substitute - emotionally. That is when I turned to scarves for work and kerchiefs for more casual times last time. This time I have friends who are knitters who are making me a couple of chemo hats and that will be great as the weather gets cool.  In the mean time I'll wear a couple of hats that my local bc support group had donated by a fashion student whose aunt has bc.  I am also seriously considering going bald.  I am nervous about it of course but this is NYC and we get very hot in the summer (90's and 100's even).  I know from last time that good news: I have a round head.  I am going to go to a Look Good Feel Better program (do you guys know about these?) and get the free skin care and makeup that is cancer patient appropriate and try this out.  I feel like I have nothing to be ashamed of.  Being sick doesn't make me a bad person.  And, having great hair shouldn't define me either.  I am more than that.  Not sure what I'll do but I felt that the wigs made me feel fake.  I know for many many people they are a great subsitute and sometimes even a fun way to experiment.  

Anonymous

Here is the chemo shopping list others created:

Posted on: Jun 5, 2008 11:29pm, edited Apr 3, 2012 08:08pm by rockReport this Post

nyc/cape townJoined: Apr 2008Posts: 1,439

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.)

BabyRuth

Beeve-I really did not have a lot of pain with my port.  I was sore for about a week but now I forget it is even there.  So sorry that you are having so much pain.  Hopefully, it will get better soon.

Thanks for all the support Ladies! I am feeling much better today. I think I just needed to vent some yesterday and I appreciate that I can do that here.  I get so frustrated that I was a really healthy person before and now I keep having all these issues every time I turn around. 

I hope everyone is having a good day!  Lets get busy and Kick Cancers Butt!

daisy72

Good morning ladies! I started chemo July 11, went for my second treatment yesterday. If anyone has any questions I may be able to help.

Advice to begin with....Hair, my husband buzzed mine down about 10 days after my first treatment because I notice hair 'down there' coming out pretty bad. My head really got sore and the 20th day it ALL came out in the shower. 

Constipation- don't wait, it's terrible, I made that mistake and thought well tomorrow......well tomorrow turned into a week and omg  BAD! Please at least take a stool softener, between the chemo, and nausea meds, they dry you out!

Dehydration- be very careful, I was drinking and was dehydrated and had to go back 5 times in 8 days for extra IV fluids. I had no idea it was happening, I just know I felt terrible and wasn't peeing a lot. After fluids I felt much better each time, if you think you may be hydration call them and go asap, it will make you feel better!

The best advice I can give is..if you need medication ASK...nerve, sleep, pain....anything, they will help you through this journey. This round I have ALL meds I believe to help me get through. 

I wish all of you the best, we can do this..it might not be easy some days but it is DO ABLE! 

Pattysmiles

Greetings all!



I am a May chemo girl and have followed the June and July boards as well.

Someone posted in the July board asking for advice to be posted here.

Hope some will find this useful

I do not plan to follow August sisters, but if you need something else please PM me so I can answer.



Hair- yes, most will lose it, but not all, some will thin (like me). Think hard before shaving your head. Some claim the stubbies are a pain! I have cut mine very short (used to be shoulder length) and wear a head covering. I prefer to wear buffs. Very comfy and come in wonderful colors. Www.buffusa.com



Wigs...read up on how to measure your head to get the correct size. My noggin is "large". Putting on an "average" size wig is not a good idea (headache and it will shift!). I imagine a "petite" head will have wig movement too! Try www.tlcdirect.org for wig products and info and google other things in regards



Free headcovering. I found this organization. They send pretty quickly. http://www.goodwishesscarves.org/

For those like me, "large noggin" the fit is really for an average head...I couldn't wear the beautiful headscarf so I mailed it along to another chemo girl. I also sent a donation to the organization (they do NOT solicit donations) as I felt it was such a nice thing they do.



Another free head covering -wig-AND makeup. Go to http://lookgoodfeelbetter.org/ and look for a Look Good Feel Better workshop near you...you scroll down on that page and enter your zip on the left side. They will either have free wigs on site OR give you a coupon to a wig bank. They also give free makeup and demos on how to apply it. Free makeup bag too. Mine had a free wig stand and free wig care products, but not all do. Some locations do head wrapping demos (mine didn't).



Scarves...if you decide to go that route, try Good Will or Salvation Army for scarves....why spend $15 and up when you can get them for under $5!



Put a strainer in the shower to keep your hair from clogging up the pipes. I am now done with chemo and still have hair coming out, though it had slowed down considerably after my first week of it starting to come out. I clean the strainer daily. (Bought a kitchen sink strainer in a dollar store and stuck it in the bathtub.



That's all I've got on head wear, I will post separate for dealing with chemo.

Pat

Pattysmiles

Greetings Again.



Dealing with those side effects.



This is info I gleaned from the boards here.

It may or may not work for you.

Remember when reading advice here that you should pass it by your medical staff. Also be aware that not all doctors have heard of some things we learn about!



First, and I feel most important. Neulasta shot...this is a shot to boost your white blood cell count as the chemo will mess with that. White blood cells (WBC) fight infections. Your WBC get lowered by day7-10 you are most susceptible to catching things. The Neulasta shot is known for causing bone pain, and can be pretty severe (though not permanent). To try and avoid that bone pain the following is recommended:

Take Claritan 24 hour tablet on the morning of the Neulasta shot and one each morning for the next 7-9 days.

Now my oncologist had never heard of it, and she didn't deny me trying it. She also said very few suffer from bone pain and "its nit that bad"...apparently she doesnt read these boards!). The nurse in her office said I was the only patient they had that didn't complain of bone pain!



Constipation...start stool softener and Miralax on day of chemo and continue with it until you are done with or use minimally the nausea meds. This worked for me, others use it day before chemo and continue. Please note, some people do suffer from diarrhea from their chemo , in fact my doctor said I should expect diarrhea, she was wrong.



Nausea meds....take at first sign of queasiness, uneasiness, or "not feeling quite right". Stay ahead of the nausea. If your meds are not working within a short period of time (hour ? Or even less) CALL your doctor. Don't wait...even if midnight, weekend, holiday, there is no need to suffer.



Heartburn med...have something on hand. I needed Prilosec within hours of my chemo. I took it for 10 days (to be safe) and I also had TUMS for breakthrough heartburn. Heartburn CAN make you think it is nausea.



Mouth care....I rinsed with Biotene after everything I ate, for the first 7-10 days. If I had a feeling of yuck ones in the mouth use 1 tsp salt, 1 tsp baking soda, 1 cup warm water and rinse. If you get bad mouth sores call at first sign and they can prescribe magic mouthwash.



Thrush..,call doctor for prescription



Consider having on standby Benadryl for allergic reactions to chemo, (though the doctors swear there is no allergy), anti diarrhea meds.



I kept my daily meds in a bowl on the kitchen counter, so I couldn't forget. So Claritan, Prilosec, steroids were with my breakfast as above description.

My anti-nausea meds were with my "other" meds in a shoebox on the table in my living room. This made it easy for me to clean up my meds in the event of company, as well as when I was done with them for the chemo round.



I also kept a "tracking sheet" I made that I marked down if I took my meds. Because sometimes we forget even if in front of us! Lol. It came in handy the days I couldn't drag myself out of bed...I made a point to mumble to hubby to bring my meds so he knew where to find them (in bowl on table) and saw what I was taking based on check off sheet.



Here is a good sheet to track side effects. Note it will tell you when you should be calling your doctor!



http://www.cancer.org/acs/groups/content/@nho/documents/document/acsq-009502.pdf

I kept it next to my favorite chair.

When going in to see my doctor I transcribed these sheets into a list to show my doctor (so I wouldn't have to flip through the pages)



Hydration....stay on top of this. Drink lots of water day of chemo, during chemo, after chemo and in the days after. If you cannot tolerate water find another liquid (no alcohol please! Lol) and drink that. Flush that poison out!



Toilet...consider using a baby wipe or feline wipe to clean yourself after using the toilet...this is poison coming out if you those first few days. Some complain of rash due to this...cleaning after toileting can avoid that! If you don't want to use wipes and get a rash I would recommend triple paste or other diaper cream.



Icing....I used ice to ward off neuropathy. This was done during taxotere drip (be sure to tell your nurses you want to know when that drip starts!). Others might use for other drugs, I'm not up on those drugs. I brought frozen veggies and sat with my heels together and placed a bag between my toes, and on either side of my toes.....did the same for fingers. Also iced mouth to avoid mouth sores. My center had ice chips for my mouth, brought my own large 16oz. Cup to have filled. Also purchased an icee and took with me to sip. I transported this in a large cooler bag. If you read the boards there are vitamins some recommend....I didn't do those.



Cold? Some centers provide blankets, I wore a very light jacket during chemo and generally I am always hot!



Eating...expect a change in taste buds. My usual foods were nasty. And chemo nose doesn't help...think pregnancy nose you can smell everything! I lived on McDonalds double cheeseburger plain with a chocolate shake for a few days for lunch...had eggs for breakfast and dinner on my whole wheat toast. The thought or smell of anything else was not good! I also loved my watermelon...nice cold, nice taste.



Weight gain, weight loss.....flip a coin! I gained weight, a lot of people do due to the steroids. Others will lose weight due to their nausea or loss of taste.



Tiredness....expect about day 4 (day one being day of chemo) to feel really tired. Nap if you need to. This can last a few days. Believe it or not getting up and walking around can clear your head and free you of the tiredness!



I think that is most things. Remember to clear things with your doctor. (Mine said she never heard of icing, but didn't deny me doing it) and to always call if you have side effects you can't get rid of. Be pro active for yourself.



Wishing you all the best on this journey. So many have done this before us, you can too!

Pat

gildedcage

Hello Gals - 

It looks like you can go ahead and add me to party. I'll be starting my chemo the last week in August. I'm 38 and going in for IVF egg retrieval today to preserve my fertility. Getting a port on the 21st and then I'll be setting sail to Chemo Island shortly thereafter. Not thrilled about it but I doubt that any of us are. It is looking like I'll be doing ACx4 every 3 weeks and 12 weeks of Taxol, followed by radiation. It's going to be a long road. 

I've been prepping up emotionally for this trip for weeks. Unfortunately, I'm still waiting on BRCA results (lab lost the first set of bloodwork I did - grrrrr!) so that is a piece of the puzzle that is missing. I'm going to try out the cold caps to see if I can save some of my hair. It's a lot of money and it may not work but I'm going to give it a try anyway - makes me feel like I can do something for myself during this time when everything seems to be out of my control. I'm very lucky to have a local cancer support center at my disposal with all sorts of incredible classes and events. I've also got a very supportive group of family, friends and I've received a lot of support and love from my local yoga community. Yoga is something I've done for years and I'm so grateful I have it in a time like this. My plans during chemo are to do all the things I never had time to do otherwise: get new blinds for the house and new flooring for the bathroom, read all of the Game of Thrones series, catch up on my Netflix queue, have nice mid-day lunches with local friends. I'm trying to find the best out of this situation. I know I won't be able to do that everyday but I'm focusing on having a good attitude about it. So glad I have found this group of sisters to be with and support during this journey. 

beeve

I got my 'courtesy call' from the hospital this morning, following yesterday's port placement procedure.  I told them I was fine except for the almost intolerable pain.  He asked if I had pain meds and I said yes, but only one tablet left, so he told me to call my surgeon.  I did that and they said to take some Aleve to see if that helps (because when an oxy isn't enough, yeah, an Aleve will take care of everything). 

I feel like such a woos because usually I'm a powerhouse against pain, very high tolerance, but not this week I guess.

gavinsgrandma

Lily-f I feel exactly the same , it still seems surreal even after having my boobs cut off and all of the physical and emotional pain and now facing chemo and losing my hair is freaking me out. I never thought I would be flat and bald😕But I do like your motto and I may also use that to keep me going.



Shary🌞

gavinsgrandma

I had my port put in 1 week and 2 day's ago and yes it HURT, but I was only 6 days post-op And I think the tissue was really sensitive too but it feels a lot better now however I do have to agree it feels like a little alien in there👾

Baberuth, I am praying they get your heart issues resolved quickly so that you can move foreword. I also have a cancerous node still on my cancer site and that scares me, will the chemo start hitting that? I do not think I will start rads until all the infusions are done.

Every one that had or is having chemo this week, my thoughts and prayers are with you for peace of mind, body and spirit and very little SE. Hugs to all and I wish everyone a great weekend😄



Shary🌞

carolpr56

Ah, some familiar faces from July Surgery, lol!



I'll have port placement 8-8 and should have 1st of 4 TC tx's the next day... Here's my question, lol! What if you have to pee during those 4 hours? Do you have an IV pole that you can just push to the bathroom?



Sigh - sorry! I'm obsessed with logistics...Not glad to have to be here, but glad to be with such a good group!



Carol

raynaj

carol: yes you can get up and move around with your IV pole.

Pattysmiles

Carol, yes, IV pole is "push able" to the bathroom.

I drank so much water I was up and down A LOT during chemo. HOWEVER, if you ARE drinking a lot ask them to let you know when they are close to changing med bags so you can go before the next med starts. When they started Taxotere I was told I couldn't get up for a few minutes in case of allergic reaction (they have oxygen ready to go!) ...so I made sure I went to the bathroom before .taxotere. After they saw no reaction I was given the all clear to go use the bathroom.



Pat

Shalimar630

Pattysmiles, thanks for all the great information!

Carolpr56, thanks for asking that question. We can't think of everything so I'm glad you asked. I am also having my port put in on the 8th, with first treatment on the 13th or 14th. I'm really bummed as I prepaid for a day convention on the 9th I was looking forward to. From what I'm hearing, I will probably be in too much discomfort to attend.

Shalimar

Cutiekool

Wow!!!! great post! Lots of I formation...thank you.. I know it will be helpful..God Blessxoxo

Anonymous

Nauseous. Woke up. Even after zofran and ginger stil queasy

carolpr56

Ladies, thanks for the potty answers! SUCH a relief ; )



Shalimar, why not contact the conference organizers, explain the circumstances and ask for a refund? If they say "no", you've not lost anything, right? And if they DO refuse, ask to send a friend or coworker in your place...



HVV, sorry you're feeling so icky! I hope you've had some relief!

mommichelle

Just wanted to pop in wish everyone luck.  Three years ago I started my chemo journey in August.  We have a great thread and such a supportive group.  Lean on each other!  I know how hard and scary it can be....know how sad I was to loose my hair, know how tired I got after each chemo.  Hang in there!  You will get through it and it will soon become a small blip on your life maps.  I know I didn't always believe it, but being here now, I see the time went by so fast.  I always loved hearing from people who had gone through it so I decided I would come back every August to wish the August chemo group luck.  Feel free to PM with questions.  I am not always on the site these days.  It is true, lots of living to do.  You hear that...there aren't too many that keep showing up because they are busy living life.  I didn't think that would ever happen for me, but it did.  It will happen for you all too.  I will be praying for you all!

Hugs,

Michelle

gavinsgrandma

HVV, sorry you are not feeling well, I hope it passes soon.

Carol, Sorry you have to be here but I am glad we are able to take this journey with friend and not alone😄

Mommichelle, That is very thoughtful of you to touch bases with those of us who are right where you three years ago, I also gives us hope and courage😄

Guildedcage, Welcome to the journey we never wanted to take, but we will take it together, I wish all of us a peaceful and happy weekend.



Shary🌞

JellyK

Carol thank goodness you thought to ask about the bathroom, I hadn't thought of that!

V, I hope the queasiness has passed :-#

I finally talked to my kids (3 and 7 yrs old) about chemo, and what some of the side effects would be - they think the fact that my hair is going to fall out is HILARIOUS, lol.  Such a relief, I really didn't know how that was going to go.  Then last night I was talking to my oldest about different things we'll have to do to not spread germs and keep mommy from getting sick, and wound up having to describe what chemo does inside your body in language a 7 yr old could understand - it involved soldiers (lymphatic system), traffic cops (chemo) and drivers going too fast (cells dividing too rapidly), lol.  Every time it seemed to get too scary for him I threw in some bathroom humor :-)

mommichelle

JellyK,

My kids were 3 and 5 when I started so I know what it is like talking to them, trying to explain to them and trying not to be too scary.  I let them draw on my head with washable markers for Halloween.  To this day, they talk about how much fun that was.  I am so glad it could be a happy memory.  It sounds like you are doing a great job!

michelle

Shalimar630

Thanks for the ideas Jelly and Mommichelle, I have my 3 and 6 year old gkids living with me. Was wondering how to tell them. Don't want to be scary grandma.

Does anyone have any special tips they discovered when having little ones around?

JellyK

Michelle, I LOVE the idea of letting them draw on my head!

Shalimar, we've been practicing things like washing our hands a LOT and putting the toilet lid down before flushing - my son and I are having contests to see who forgets first :-)  If you have little ones living with you it's super important to start the good habits now while it can be fun and a game, rather than after you've started chemo (assuming you haven't started yet) and the stakes are high and there might be a tendency to be upset at them for messing up.  I've been telling my kids about all of this pretty slowly, and kind of as I encounter each thing - they knew I had a "sick booby" while I was still in early diagnosis and before surgery, then they knew I was "getting new boobies", and now they're watching as mommy's boobies grow, lol.  I've let them see and touch things too - my tumor was gigantic, so they could tell that one booby was hard while the other one was soft - and I don't hide my scars from them either.  My daughter is very concerned with when I'll be getting new nipples, that seems to be the hardest thing for her to handle.  When it doubt, go for the bathroom humor, it breaks the tension every time :-)

I'm hoping to have some sort of game around the hand sanitzer, like they're putting on magic gel or something, since they'll be in daycare/school during my treatment and will be little walking petrie dishes.  I'm also going to have them go see other friends, rather than friends coming here, because there's so little control you have with kids running around playing and touching everything.

Good luck, it's not going to be easy to go through this with little ones around, but hopefully they'll all have cool memories like drawing on our heads, lol.

Anonymous

Hi,

Okay, have gained 6 to 8 pounds over the last two days. Must be chemo-related. Sorry TMI.  Suggestions?

V

carolpr56

Is it swelling/water weight in your hands/ feet, V? Tell the dr., that seems like too much too soon!

Anonymous

Not swelling thank goodness.  Remember that I am a plus size so this is probably equivlent to 3 to 4 pounds on average size woman. Still...

AC is hard.

V

capegirl

I have been reading lots but haven't yet posted on here I guess because I am still in shock.  I had a bilateral mastectomy for bilateral IDC, grade 2, stage 2b on July 24th.  Chemo with 4 rounds Taxotere and Cytoxan scheduled to begin 8/21.  Thanks for all the great support and suggestions.  I don't know who is more afraid of going bald, me or my 3 children.  I am going to a salon at the suggestion of my MO for a consult for a haircut and wig this week.  Got all my prescriptions filled and am hoping to get my last drain out Tuesday.

Cutiekool

Cape Girl, I have idc grade 3 stage 1b. I had 1 surgery lumpectomy, margins not clear went in for 2nd surgery, they found dcis grade 3 stage 2. I am scheduled for a/c 4 cycles every two weeks. Then taxol same cycle. I am also afraid of going bald. Why??? Why do we have this fear? When going bald won't kill us, but are cancer might... What? I'm freaking out here, so I am sure you are. I just keep telling myself all is in Gods hands and I will be fine,