Sept 2012 chemo

Toastiecat; did you ever look at the Silver Pen blog?   It is written by a Social Worker who was diagnosed with Stage 4 cancer about a year ago.   She has a section in there on how to talk to children.  Perhaps it can give you some ideas.

My son is 14 years old and seems to be handling it but I wonder.  There aren't too many questions and he just seems to go thru his day like he did before the diagnosis.  He knows he can go to his Dad with anything he is unsure of but so far hasn't.  I have lost my hair and keep my head covered but that hasn't seemed to affect him.  I don't know if I should do more or not.

Anyways, good luck with your little sister.  I'm sure she looks up to and is just really worried for you. 

Kidsandlabs, love the hat!



Amylovesbub, what a darling neighbour you have. I am doing #3 chemo this week too...I hope you have a easy time....



Cindi I hope you are feeling well.



To everyone else have a super week!

Great to hear from you Amyloves!  Kidsandlabs - awesome hat! 

Good luck to all this week!  I know some will be doing their last AC - what a great feeling to have it behind you soon.

I don't think this one was as bad as 3, but I am anemic and pretty darn tired. 

Cocobean-

I have Dr Mammalito also!  I have Dr Elwood for PS and then Praguer for oncology.  I'm not really a fan of hers but didn't know there was another option.  How do you like your onco?  Such a small world!  Gearing up for #3 AC this Thursday and not looking forward to it!  Can tell I'm tireder this round.  Made the cute lil turban out of a spandex tank top and it is awesome.  Perfect for sleeping except I just tie the extra material at the bottom with a ponytail holder.  I don't like anything tight on my head.  I'm even going out today in a pretty scarf I have.  Just can't swing the wig.  It's soooo uncomfortable and hot.   I hope my friend won't mind me in the scarf but people are going to have to get used to the new me.  I choose comfort over fashion any day.  Proves I'm ageing.  LOL   Here's to low Se's to all.  

Becki 

Hi all,

I went through a year of treatment (bilateral mastectomy, chemo, radiation) and finished a year ago; I found these forums *tremendously* helpful while I was in treatment.

The below tips are from my book, "The Breast Cancer Checklist" which is the book that I wanted when I was diagnosed and which I finally wrote. (Feel free to bump this list up if you find it helpful.)

Checklist: Treatment Day 

 * Eat before you go.  You'll experience less nausea if you eat a whole grain meal about two hours before your treatment.  Avoid fats and sugars which tend to make nausea worse.  And don't eat your favorite foods before a treatment--you may end up with unpleasant associations between your food and the treatment.

 * Remember to drink a lot to get those toxins flushing through your system quickly.

* Sucking on a peppermint candy during treatment may help if your mouth tastes unpleasant.

* Wear comfortable clothing and comfortable shoes to treatments.  If you have an infusion port, wear a (button-down) shirt so that the port can be easily accessed.  Bring a sweater or jacket, and warm socks, because hospitals are often chilly. 

* Bring a book or relaxation tape so you have something to do while waiting.

* Bring a snack (carbs such as bread or crackers are usually best) and water.

* Something cold to snack on (popsicles, ice chips, etc) can help prevent mouth sores, one of the possible side effects of chemo particularly if you're taking Adriamycin/red juice.  (The Adriamycin part of chemo is red; if your urine is red afterwards, it's not a cause for concern.)

* Ask a nurse whether you should plunge your fingers in ice water or wear ice mitts during treatment to prevent nail problems.

* Don't forget your calendar (for scheduling future appointments and dosage details of medications) and medical records.

* Bring a friend, so you can have some nice, uninterrupted time with someone you love, or someone you'd like to get to know better.  Also, you might need someone to drive you home; your response to treatment may vary, and you might not be physically capable of driving yourself home.

* If nausea is a problem, try placing an acupressure band on your wrist a few hours before chemotherapy.

* Ask for a heated blanket, which some women find makes them feel much happier during treatments, particularly in frosty hospitals.

Checklist: Other chemo tips

* Wash your hands often--and make sure everyone else washes theirs.  Use an antibacterial cleaner, and make family members (and guests) use it too.  Bring wipes with you when you leave the house, so that you can easily clean your hands wherever you go without having to share a communal towel.

* Face mask: If you're going to be in a crowded venue, such as a concert hall, consider wearing a face mask.  It may not totally prevent you from getting sick, but it will at least prevent egregious cheek-kissers from getting too close.

* Moisturize at least twice daily (with a moisturizer for sensitive skin) to avoid skin dryness.  Chemo drugs will dry out your skin, and you don't want to inadvertently scratch and possibly cause an infection.  Petroleum jelly is a good alternative.  Pat yourself dry (don't rub--that could also lead to infection) and moisturize immediately.

 * Be sure you're not over-showering--you don't want to strip away too much moisture.

* If you don't have a port, your fingers or arms will feel particularly sensitive because of the constant poking, so be sure you coat them with vaseline moisturizer.  Use a fragrance-free product, because the chemo might heighten your sense of smell.

* Chemo makes you photo-sensitive, so avoid the sun.  A rash or sunburn may cause infection (and can also contribute to lymphedema.)  Wear double your usual sunscreen SPF, cover up with tightly knit  cotton clothing, and limit your sun time.

* Nausea, fatigue, and hair loss are the most common chemo side effects.  The best treatment for fatigue and exhaustion, and a good treatment for nausea as well, is moderate exercise.

* Schedule preferred time for isitors.  Your friends will want to drop by to show support, but if you've just come back from a treatment and are throwing up into the sink, you'd probably rather not see them.  Figure out what timing works best for you, and ask friends to visit when you'll enjoy them.

* Be sure you're not over-scheduling visitors; your energy level will likely be depleted, and even incredibly social people may find that two or three visitors a day is more than sufficient.  When you've had enough visitors, post a polite note on your front door that advises people to come another time.

* Nap during the day.  You'll likely find it difficult to sleep as well as you used to at night, and you'll be more fatigued because of the treatment, so schedule yourself so that you can nap mid-day--and then be sure you nap during that time, rather than checking email or leafing through the newspaper.

* If you're planning to follow a special diet during the chemo, have your family help in keeping an up-to-date shopping list, so that when you run out of ingredients you can just circle them on your list, and when a friendly visitor offers to help you can send them off with the list.

* To make sure your chemo is providing optimal benefits to your body, with minimal undesired side effects, try visualizing your chemo as a friend.  Think, "Thank goodness for this chemo which is making my body strong and powerful, and I feel rested and great after the treatment" (rather than, "I hate this chemo, it makes me feel nauseated and horrible." )  

* On chemo treatment day, and for several days thereafter, drink ten glasses of water each day (but not during, or immediately after, meals, which can make you queasier).

* If they agree with your stomach, eat more raw broccoli, kale, red onion, pomegranate, fish, mushrooms, turmeric, ginger, watercress, and apples, all of which medical studies have found helpful for breast cancer.

* Exercise daily, if you can, even if it's only a ten-minute walk.

* Ask for help in lifting heavy items, particularly food items that may be very hot; the chemotherapy can numb your fingers, and some women complain about dropping things.

* Before starting or continuing vitamins during chemo, speak to your oncologist; some doctors advocate taking vitamins for nutritional supplementation, but others are concerned that antioxidant vitamins are detrimental during chemo.

*  In particular, avoid grapefruit and echinacea during chemo, both of which, according to medical studies, can interfere with the body's ability to absorb the chemotherapy drugs.

* Some nausea during chemo might be unavoidable, but if you're throwing up, talk to your doctor; drugs can prevent it.  Particularly if you're on AC, ask about adding Emend, a steroid, and Zofran to your regimen;Emend is particularly expensive, so some doctors don't prescribe it initially, but if you're suffering, ask.

* If you're suffering from constipation, add more fiber to your diet.  If that doesn't work, try Metamucil.  If you're still suffering, ask your doctor about docusate sodium, an over-the-counter stool softener.  Some women also find that sesame oil helps with constipation.

* If you're suffering from diarrhea, try avoiding lactose (ie, dairy).

* If you have acid reflux, ask your doctor about taking an antacid.  You can also try a teaspoon of baking soda in warm water.

* If you've got dry mouth, and especially if you're starting to get mouth sores, ask your doctor about taking Biotene; it's available as mouthwash, toothpaste, and chewing gum.

* If you get thrush (an oral yeast infection) from the chemo, some women suggest baking soda (try a teaspoon in warm water). Other women find that coconut oil can relieve thrush; you can purchase coconut oil at most health food stores. 

* Some women find that the steroids administered during chemo make sleep difficult and suggest (controlled-release) Ambien.  Check with your doctor first.

* If you're getting Neulastim to boost your white blood count, you can get bone pain as a result.  Ask your doctor if there's any problem with taking a painkiller half an hour before each injection (and for one to two days afterwards).  Most women find that Aleve or Claritin work best.

* If you want to get a manicure or pedicure, bring your own equipment to prevent infection.  Nail polish enhanced with slicium is helpful for overall nail health, if you're going to use nail polish.  If your fingernails are discoloring, try wearing ice mits during treatment.  Tea tree oil  (applied topically) can also help).

* Get a warm cap in which you can sleep comfortably; bald can be cold.  If you can find a cap that is seam-free, it will be more comfortable.

* If you had radiation prior to chemo, be alert for 'radiation recall' when the irradiated area turns red and irritated as it was during the radiation; this can be caused by chemo drugs.  Tell your doctor.

* If your doctor is planning on AC as part of your chemo regimen, you'll probably be sent for an echocardiogram (heart ultrasound) every two to three months, to check for heart damage.  The procedure takes no more than 20 minutes, and is done in a doctor's office or hospital.  It involves only the removal of your shirt so that they can rub the ultrasound probe over your chest.  It's entirely painless.

* Notify your doctor if you've never had chicken pox and come into contact with either chickenpox or shingles.

Checklist:  Managing nausea

* Instead of three large meals per day, try five or six smaller meals.

* Stick to low-fat foods and fresh fruits and vegetables.

* Avoid beverages with meals, or in the two hours after eating, to prevent nausea.  But drink the rest of the day, so you don't get dehydrated.  When you drink, drink slowly.

* First thing in the morning, and at the first hint of nausea, eat dry foods--toast or crackers. 

* Low fat foods are better than greasy, sugary, or fatty foods; dry foods (toast and crackers) are best.  Salty foods will likely go down easier than sweet foods.  Chew food thoroughly.

* For two hours immediately after eating, do not lie down.  Sleeping sitting up is fine. 

* Fresh air and loose clothing can help control nausea.  Or try accupressure bands.  Hypnosis has also proven helpful to some.

* Have someone else prepare your meals, or prepare your meals ahead of time (so you don't have to endure the smells).

* Avoid odors, and being around cooking preparation.  Perfume and smoke odor can also contribute to nausea.

* Consuming cold liquids, salty liquids such as miso soup, ice chips, ginger, and an icepack on the back of your neck can all help relieve nausea.

* Use plastic eating utensils rather than metal silverware, which can set off nausea.

* Ginger and ginger tea have been shown to be  effective in combatting nausea, but be careful not to take ginger when chemo lowers your platelet count, because of its anticoagulent effect.  Check with your doctor to be sure.

* Some women find lemons, either fresh lemons squeezed into water, or lemon drops or lemon oil to sniff, helpful for queasiness.

* Relaxation exercises can also help.

Checklist: Dealing with hair loss

* Hair loss that you experience during chemo is temporary; after you stop the chemo, your hair will start to regrow (though the texture and color may be slightly diferent than the hair you lost).

* Hair loss usually begins two to three weeks after starting chemo.

* For facial hair, get an eyebrow powder or an eyeliner pencil so that you can draw in your eyebrows when that hair falls out. 

* The glue in fake eyelashes can cause infection, so just use a dark eyeliner pencil and skip the falsies. 

* When your hair starts to fall out in clumps, it might be  easier to have your partner or a friend shave the rest of it off entirely; it's demoralizing to see it all falling out over your pillow.

* Even though you're losing your hair, you should still shampoo your scalp at least once a week to keep it fresh.  Use a baby shampoo--you'll have no natural hair oils.

* Sil scarves are likely to slip off your head without hair to keep them in place; cotton is a better choice.

* If you're going for a wig, buying  it when you still have your hair will help them match the color and style more easily.

* A human hair wig will be lighter and more comfortable than a synthetic wig, but more expensive.  

* Shampoo, condition, and air-dry your wig.  Or you can use a blow-dryer until the wig is almost dry, then air-dry the rest of the way.

* Plastic bristled brushes work best on wigs.

* Keep the wig on a wig stand when you're not wearing it, to keep the shape.  You might want to cover it with a scarf to keep it dust-free.

* A wig-liner worn under the wig will help keep the wig from getting itchy.  If you can't find a wig-liner, cut the middle part from a pair of pantyhose and use that.

x 

Copyright, Fern Reiss, "The Breast Cancer Checklist" book, BreastCancerChecklist.com 2013

(There's more, but maybe that's enough to start... ) 

Hope this is helpful. 

/Fern

Hi All,  12 days from A/C # 2.  Only SE,  3 days of in bed and little moving.  Days, 4,5,6.  Slow, gradual recovery days, 7,8,9,10.  Pretty much back today.  I am experiencing some disequilibrium.  Walking slowley and carefully.  Didn't I read somewhere that the chemo affects hairs in inter ear causing this pbm.  WBCs ok 5 days after nuelasta this time.  Very different from last time.  Go figure.

Biggest problem was fatigue.  I decided this time to just take to bed and do nothing.  Once my mind accepted that, no problem.  I feel so for you with jobs and children.  Don't know how you do it.

Hugs to all.  #3 a week from Wed.  I can do this.

Justegan, are you taking Claridin?  So sorry for the problems.

Missed a beautiful fall day lying in bed with neulasta pain. Somethings just really suck.

Cindi my round #2 sounded the same as yours, took until day 9 to come around and yes same with the equilibrium . I am experiencing the same 2 days prior to chemo 3 on Wednesday. I get bloodwork done tomorrow and feel low. Only slept 4 hours last night worrying.

Mariposa same with me and eating to feel better. I have put on 10 lbs since May, and that is with exercise . When chemo is over next month I will try and drop it. I also had a bad day yesterday, worrying counting the years I need, 4 until DH retires and 2 after that for travel and then at least 5 for enjoying a few quiet years....that's 11.... It's a bad place for my mind to go, but it goes there sometimes.....but I want 20 or 30 years...I was so depressed thinking about it. I hate Cancer for making me think like that.



Justine hope you feel better soon. You have a beautiful smile.



JoJo I love the cap, did you knit it? I hope you feel better.



Cherioo and Amylovesbub so nice you were able to meet!



Good luck to all us sept girls this week!

I can't take credit for my cap. They were knitted for me in lots of diff colors. I sleep in them every night (and every day 2 - 5 post chemo). :-)



Beginning to come out of the AC haze, thanks for the encouragements.



Has anyone noticed darkened skin spots? Everything I worked to lighten over the years has decided to show back up now. Just another nuisance to deal with.

englishrose - I was told to try warm water, baking soda and salt. To be honest, I don't know if it actually works for me, because my mouth symptoms get better or worse depending on the day. Here's the recipe I used:



Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water



Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.



Is your rx for Magic Mouthwash?

I had kind of a rough few days and need to vent. SEs are defiitely getting more intense, now with bone pain added in the mix. But worse than that right now, is that I'm very worried about my little cat, Toastie (of my username). Two nights ago she fell out of bed, she was walking in circles, falling down, eyes twitching, panting and crying. I was so scared. We rushed her to the vet emergency, and long story short, she's stable now but there's a chance she has cancer. The vet was talkig about the possibility of a growth in her inner ear, and we asked if it was possible it was cancer. He said yes, but then talked about how young she is (6 y/o), etc. I looked at him, and said, you're talking to two people who got cancer in their 20's! Not so reassuring. He was very nice, and felt bad about it, but still.

I really thought I was going to lose her in the car ride on the way to the vet, and I was just thinking that I couldn't handle it if she died. She's very important to me. I know that not everyone understands that, or has that kind of relationship with their pet, but she really is my best friend.

Bearcub and those others who wake up down.  

 Very early after my first biopsy pathology report I googled the report diagnosis and found a study from a reputable university that indicated that there was a high probability that I had two years or so to live.  I didn't note that the study was done in 1995, and it said nothing about the stage of the subjects, their health, etc. 

 So, I immediately got my living will out, made copies for hospital and all doctors, and started cleaning out files.  I also had one day I woke up with a little cloud over my head I described to husband as "Sad.".  A few days later there was that little cloud I labeled "Fear."

Our brains work while we sleep.  You can learn as you sleep.  I decided that my brain was busy at night worrying about all the stuff I repressed during the day.  So I have given my brain something else to think about when I sleep.

I wear earphones at night and play happy stuff from my iphone or mp3 player.  "1000 days of Laughter" Audible Book,  Garison Keiller monologues, download free.  Prarie Home Companion.  I have over 100 of these.  I've also used audiobooks,  "A Funny Thing Happened on the Way to the White House", "New Treasury of Great Humorists."  "Bosypants,."

I haven't had a single bad dream or cloud when I wake up when playing these.  Most of the time I go to sleep with it playing, and if I wake up in the night for bathroom call, I remove phones and put them back on when I go back to bed.  I find that they put me to sleep.  One time I went back to sleep in the morning without turning on my pacifier phones, and had an unpleasant cancer related dream.  No more.

Now I wake up OK, at peace.  I got the relatively thin, foam covered phones at Radio Shack.

By the way, I asked the Oncologist at the last apointment about the first biopsy pathology and the pathology report after the surgery.  She said the surgery was the accurate one.  I'm back to budgeting my retirement account to age 90.

Almost every day that someone new learns about my diagnosis, someone comes over to tell me,  "I had a masx 15,20,10 years ago.  Treatment no fun, but I'm here now"  One at a garden party Saturday gave me a lovely neck scarf thing in bright pink which I wore to church.  Our group of 59 should all be here in five years--and years beyond.  We are being treated.  We have support.

Hugs to all!  No SE

s