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"THE CHEMO TIPS"

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    Posted: Mar 10 2009 at 9:15am

CHEMO TIPS FROM AND FOR THE TNBC FOUNDATION SITE WOMEN AND ALL WHO COME HERE TO SHARE

One of us becomes intimidated when we are going to ask for something at the oncology clinic and are refused, dismissed, ignored....but when you are in any situation again you are not alone....we are there right beside you in spirit giving you support, encouragement and strength to get what you NEED for a positive outcome. Love, Connie

Empower yourself! Educate yourself about your pathology reports and treatments through reliable internet websites and/or books.

Ask about preserving fertility prior to starting chemo. There is free options. In Burnaby BC for Canada.

If you have mixed feelings about doing chemo vs. alternative medicine, make peace with it as much as possible. Practice visualizations, speak with a therapist who understands.

There is no such thing as a stupid question!

Keep asking questions until you get the answers you need to make informed decisions.

If you have any questions during the months you are taking chemo, be sure to contact your oncologist.

Have your D levels checked before chemo. This is a simple blood test. If they are low, ask your oncologist if you can safely take vitamin D3 during your treatments.

This is a link for your information as to the test for the Vitamin D levels, and their validity. Good information when having them checked! Make sure you are getting the right test. This is from Sandy and Ronda.

http://articles.mercola.com/sites/articles/archive/2008/09/20/warning-are-your-vitamin-d-test-results-valid.aspx?source=nl

Consult with your dentist and have all dental work done before starting chemo. Many cannot have work done during chemo and often some seem to get compromised in that area, needing much work afterwards. Sometimes for several years!

Note: This is from Prissy and is not meant to frighten anyone, but the doctors do not tell you of this and there is nothing listed in the side effects of the chemo that you may have, so we feel you need to know this.
 
ANOTHER THING THE DOCS DON'T TELL YOU BEFORE CHEMO IS HOW HARD IT IS ON YOUR TEETH!! I HAD TO HAVE OVER 5 THOUSAND DOLLARS WORK DONE AFTER CHEMO. THE ENAMEL , AND DRY MOUTH JUST REALLY MESSED ME UP. INSURANCE SAID "NO PROOF CAUSED BY CHEMO", WHEN I HAD NO CAVITIES BEFORE AND NUMEROUS ROOT CANALS TO BE DONE ALONG WITH CAVITIES.
 
THE SORES ON MY GUMS JUST ATE AWAY AT ONE SPOT ON MY FRONT BOTTOM TOOTH AND I WILL HAVE TO HAVE A SKIN GRAFT TO FIX THAT.  PLEASE TELL PRE CHEMO PEOPLE TO GET THEIR DENTIST TO MAKE THEM A FLUORIDE TRAY TO WEAR AT NIGHT -- JUST ONE MORE THING TO DO, I UNDERSTAND, BUT DENTAL WORK IS SO EXPENSIVE--AND HURTS!!I HOPE I SAVE SOME SMILES!!Big%20smile   LOVE, PRISSY
 
From Leslie...Paddler... 
While having my chemo, I had the usual sore mouth but found a great way to keep my teeth clean (which made me feel much better).
 
I used a spin toothbrush -- the kind with a round tip (not a vibrating brush).  I bought the extra soft brush, and found a version with 2 speeds -- I used the slower speed.
 
This let me carefully spot clean each tooth without touching my sore gums.
 
I used a baking soda based toothpaste as suggested by my oncology nurse.
 
It wasn't perfect, but with a bit of practice it helped me get rid of most of my tooth fuzz while sparing my sore gums.
 
The nurse thought this was a great idea -- a regular toothbrush doesn't work well when your gums hurt._____________________
 
Accept that you will not always feel positive, you will have bad days and that’s ok.

Don’t be afraid to ask others for help. People are more than willing to help; they just don’t know what to do for you unless you ask specifically.

If you have had surgery before chemo, use lots of pillows for sleeping post surgery to prevent you form rolling over. The drain is the worst part of the surgery. Mastectomy can leave your chest numb, not just the incision.

MOST IMPORTANT ONE?

When you are getting your “team” together after you are first diagnosed…you know…all the people who beg you to let them know what they can do for you….have your Mom/sister/dearest friend work up a 6 MONTH or 1 YEAR commitment sheet, acknowledging that treatment goes on for a long time. Ask them to cook dinner once a week for 6 months, to come over the first Sunday of every month to help clean for one year, etc. The hardest part can be when everyone has moved on and forgotten, and you are still bald, menopausal, and feeling alone.

Donna says that toward the end, the worst part was that food didn’t taste like anything.

Fear not; the clouds do part, your hair grows back and you can almost delight in you favorite snacks within a very short time of when it’s over! Until then, by all means go from couch to bed and back no more than twice a day. Eat only what you feel like eating. Order your family around and make them scrub the toilets. Now is the time to play the cancer card, big time! Per Donna’s orders!

Canada has a volunteer driver program for appointments, so call them if you need help.

Have a family member or friend help you prepare meals in advance for your family and freeze them, or ask a family member or friend to prepare the meals for you. (You may not feel up to eating them, but they will be there for your family on the day that you have chemo, and the days following chemo).

Tell your husband and entire family that the doctor prohibits you from doing housework during this time. This can be for as long as a year! Do not push for any longer than that, or they will become suspicious.

Make a “woman cave”…spare bedroom or a reading corner where you can sleep and just be alone. Do this prior to starting treatments.

Make arrangements in advance for childcare. Especially for the day of chemo and possibly for days following chemo.

Make arrangements for acupuncture throughout treatment. If you do receive acupuncture, the gals on the site will tell you to make sure that the area where the needles are to be inserted is cleaned really well with alcohol.

Do your errands the days before chemo, or have someone do them for you.

Expect hair loss with several of the chemo meds. Check with your Oncologist.

Prepare ahead of time by purchasing a wig, caps, several scarves, hats. Get a couple of wigs that are completely different from your regular hair. Realize that these are all hot!

This is a link to a site which will send you a scarf or a head wrap free of charge, and Laurie is a member of the TNBC site.

http://www.franceluxe.com/

Shave your head before your hair comes out on its own.

Some of the gals have used painter’s tape and even duct tape to remove any stray hair that may linger.

Buy a set of satin pillowcases for your use exclusively. Some gals found them at Target; others found them at Bed Bath and Beyond. They are so soothing, and your beautiful almost bald, and baldhead will simply glide over them.

You may experience times when your head “hurts’ when your hair is falling out, and that is normal.

There is a Canadian product…Nisim shampoo for helping hair re-growth.

In the US, the gals say there are 3 products from Nioxin which are suggested for hair re-growth. They are Scalp Therapy, Follicle Booster and Cytonutrient.

One gal said that she had bad nails with ACT. They become thin, some even fall off, brittle, stained looking, some black marks which never left. She had the same problem which started while she was on Taxotere. These meds can also cause some of your toenails to become thicker.

Use Vicks on your fingernails and toenails. If you don’t wear polish it helps to keep your nails shiny. Tea Tree oil and Listerine is also recommended for brittle nails.

From Connie…..First, keep your nails trimmed closely. Do not entertain any thought of having a manicure - this is a health issue not beauty issue.

Keep your hands out of water unless wearing rubber gloves. I found it painful so I taped each finger multiple times a day to ensure the tape was clean and for some reason it made the nails feel better.

Mine eventually grew out and everything is back to normal.

I have heard people use tea tree oil on the nails because of its antiseptic properties.

Please ensure there is no infection underneath, drainage of pus or foul smelling discharge - a sure sign - which could be either fungal or bacterial - then go to the doctor because you will need an antibiotic.

Another recommendation comes from Anna921.

Recommendation was 2 thirds water, one third vinegar, but during the really tough part, I used half and half. Don't soak your hand or feet in it, just the nails. When you need to cut the nails, I found it was better to do it after the soaking when they were soft. The nails need to be kept as short as possible and meticulously clean for the best chance to save them from detaching.

Skin and nail changes can be seen with several different types of chemotherapy. Women with dark complexions will notice this more. Some times you can even see dark pigmentation in the mouth.

From Leslie...Paddler
 
I had the ice bath. The ice was in 4 baggies -- one for each hand and foot. The nurses in my chemo clinic had me put ice on my fingers tips and toes during the taxol part of each chemo session.  They said it temporarily reduces the blood flow to those areas so helps to minimize damage to the nail beds.
 
You nestle your fingers into the ice from outside the baggie -- just lift your hands if you need a break.
 
Toes are harder -- but I took oversize slipper/socks to my treatments and slipped a baggie of ice into the toe of each sock. This kept the ice in place and gave me the freedom to move my legs around.
 
It was chilly! But it definitely worked. I had mottled nails that were a bit brittle, but didn't lose any.I had very little residual tingling.
 
You need four baggies filled with ice chips. Bury your fingers tips into the ice from outside the baggie. For toes ... I took some big knitted sock/slippers and put a baggie of ice in each toe -- it made it easy to keep the ice in place when the chemo makes your legs all restless.
__________________________________________________
 
This section is fairly lengthy, but very informative. You do have a choice as to the port or PICC line. Not many are aware, and just allow their doctors to make that decision.

If you decide on the port, you have a choice as to where your chemo port goes. Have them mark the spot while sitting up prior to lying down, as the port can be in an awkward position.

Dear Sisters, from Connie….

You would like your port put in by an INTERVENTIONAL RADIOLOGIST.....

What is an Interventional Radiologist?

Interventional Radiology is a medical specialty that uses image-guided, minimally invasive diagnostic and treatment techniques that are often an alternative to surgery. Interventional radiologists are highly trained in imaging, radiation safety, the performance of medical procedures, and patient management.

Interventional radiologists treat diseases using small catheters or other devices and tools guided by radiologic imaging. Procedures performed by interventional radiologists are generally less costly and are less traumatic to the patient, involving smaller incisions, less pain, and shorter hospital stays. Your interventional radiologist will work closely with your primary care or other physician to be sure you receive the best possible care.

These are the best people for the job of installing ports.....or PICC lines.

I had a wonderful female interventional radiologist who put in my PICC line...I never felt it going in...I never knew it was there the whole time I used it for chemotherapy.

Many times they will suggest a nurse (apparently trained to do it for chemotherapy patients) put them in DON'T let them....Surgeons also do usually a bad job putting in the ports at the time of surgery.

I had a consultation with the interventional radiologist...we discussed what would be best...usually ports are recommended for chemotherapy up to a year or more...PICC lines do well for 4-6 months of chemotherapy.

Get the right person for the job to ensure getting the best care ....

I bet you will find the vast majority of the problems with ports were installed by the surgeon not an interventional radiologist.

Once again, another post from Connie.

Dear Sisters,

I like to call it the conspiracy of silence...when it comes to what patients suffer, another word given to all the bad things that happen when we undergo treatment is called 'iatrogenic' - which means caused by the physician, nurse, hospital, and who suffers? - the patient and outcome of treatment. In the States you can sue for malpractice ... in Canada no one sues and many suffer.

After seeing so many bad port placements, infections, etc. Ports are placed for long-term *usually more than a year of treatment* I question the need for them when most of our chemo treatments last only 4-6 months. I opted for a PICC line which I had removed two weeks after my last chemo.

I was booked for a port and spoke to an "interventional radiologist" regarding my booking for a port. She very kindly took the time to explain that oncologists automatically order a port even when a PICC line can be done quickly under fluoroscopic guidance without anesthetic under sterile technique and immediately ready for use...more nurses are skilled with PICC lines and laboratory technologists, whereas only a very small percentage of nurses are skilled in accessing ports and skill is required and it is painful whereas a PICC never hurts when used....!!!!

I would also strongly recommend that the women ask that their port or PICC line be placed by an interventional radiologist (that is their skill - they thread wires and fine catheters to do angiograms) - nurses do not have the skillsets required (it is just cheaper to use them)- even though many patients have other medical professionals install their ports an interventional radiologist is the best for the job.

So much of our medical care is given back to us at the weakest, most debilitated point in our lives...we are being poisoned by the chemo and suffering severe side effects, recovering from surgery with all its complications and challenges from drains, etc. and we are to assume care for Neupogen shots, cleaning, flushing ports/PICC lines etc, infection control, etc.

I noticed the first line of my treatment plan was "Educate patient for self-care" on the home care referral sheets.

I was quite fascinated by this because I know that home care charges $800 dollars to fill out the forms (whether it is for 1 visit or 100 visits).

The doctor had written the order for home care to administer Neupogen shots, and do dressing changes/flush PICC, heparin flushes so it would not clot, etc.

So, the first visit the nurse was explaining everything to me and I thanked her for telling me what she was doing as she went along....(she was training me to do it myself) - but I told her I would be seeing her the next day because "I am not a nurse, do not give shots, do not do dressing changes...etc."

The next day the case manager called...to tell me that diabetics and children give their own shots. I told her that I appreciated her telling me that because I certainly did not meet the criteria for sure...since I was not a child nor was I a diabetic... I had cancer and was undergoing chemo". I asked her if she had the order from the doctor and she replied she did. I then suggested she follow them.

The next day the regional manager called and explained to me that I could easily change dressings, access PICC line, flush, etc., because no skill was required. I promptly replied that it was a shame that the nurses were wasting 4 years in college when "anybody could do what they did". I asked her once again if she had the doctor's orders. She said she did...and I suggested unless she tell me what medical school she obtained her degree from and she was my attending - it would be best to follow the doctor's written orders which they had confirmed and the ink still had not disappeared.

The next day the case manager called back with another approach of intimidation and guilt..."don't you feel badly taking up a nurse's time from people who are really ill" (I felt like I was dying with the effects of the AC and the terrible pain from the Taxol). I thanked her for her diagnosis and asked her to call my surgeon, oncologist, and pathologist and tell them that I did not really have breast cancer, and was not suffering the side effects of chemo because the case manager told me I was not ill. I strongly suggested to her that she not call anymore and accept the fact her profit margin will be down this quarter. At this juncture she offered to train my husband to take care of my needs...I told her that when she wanted to learn how to build a car my husband would train her...but the operative words were....my "needs", and possibly her "wants" and needs and wants were entirely different. I needed nursing care and I wanted her to follow the written doctor's orders to provide the same. The case manager never called me again...but the visiting nurses said she knew that there was nothing she could do and that so many other patients just buckled under the pressure.

I am sharing this long tale to empower each and every sister to demand the professional care she deserves to ensure the best positive outcome of treatment - no more cancer cells and no long-term effects from complications which should and could be avoided.

I used to be nice...and then I got breast cancer and saw how women have to fight to save our lives, by first convincing the medical profession that we have something really wrong, and not be dismissed, advocating for screening tests, etc. so nothing is missed. Women suffer needlessly because we have historically been the walking wounded, children sick, husband sick, all the rest and care needed....a wife/mother keeps working, never rests and keeps their worlds moving. So, whatever help we can extend to each other...to make another woman's experience better, the treatments less painful, the outcomes more positive - it is a responsibility to share all that we can.

Well, I am climbing down off my soapbox (it was not very high because I am afraid of heights),

Have them use mepitac tape if you are allergic to adhesive tape for dressings/incisions post op. It is from Molnlycke health care made in Finland. They have a lot of other dressings as well. It is a non-adhesive tape, silicone based. The website will give you phone numbers to find out where you can get it in your area. Most medical supply stores carry it as well. http://www.molnlycke,com .

The toll free number is 1-800-882-4582 for the US and in Canada 1800-494-5134.

This tip is from Pam...trip2

If you have a port on the left side, you can get a Rx from your oncologist so that you do not have to wear your shoulder belt while driving. This can irritate your port.
 
This one is from Beth Anne
another thing that works well is the seat belt protector that is used for babies... you can get them at babies R Us... They work great!
Beth Anne

Take someone you can laugh with to chemo. It helps pass the time more quickly.

Telephone support to talk one on one to someone who understands. Cancer connect in Canada.

It has been suggested to sleep in a recliner for the first 4-5 days following each chemo treatment. It helps prevent nausea and headaches. If it is possible, move the recliner to the bedroom before the first chemo, just to be prepared. Some prefer to have it in another room. Possibly “the woman’s cave”.

Make sure that you have all the prescriptions filled that you will be taking prior to each treatment!

Our section on Supplements is from our Vitamin guru Ronda! In her own words!

Always check with your oncologist!

If you're involved in a study, they (your oncologist), may not be open to you using supplements, so make sure you check. I used integrative medicine during chemo and firmly believe it not only helped me get through her treatment but recovery was pretty easy too. I used a naturopath that had worked with doctors at the Cancer institute in Chicago and had seen hundreds of chemo patients, so she knew what supplements would interfere and which ones had been studied to help with chemo.

First as you've probably heard, vitamin D deficiency is big amongst people facing serious disease, breast cancer is one of those diseases. I hugely believe Vitamin D should be a priority for all of us.

This is what I took during dose dense AC +T chemo as recommended by my naturopath.

REMEMBER NO SUPPLEMENTS THE DAY BEFORE, THE DAY OF, OR 2 DAYS AFTER CHEMO.

Vitamin D: Get your levels checked!

Why Vitamin D rocks:

* Vitamin D helps keep cells and genes healthy.

* Vitamin D is an anti-inflammatory and anti-inflammatories have been linked to lower bc rates.

* Vitamin D helps alkalize your system by allowing your body to utilize calcium and magnesium.

* Vitamin d strengthens your heart, important because of the damage caused by Adriamyicn

* Women who had high levels of D at the time of their diagnosis had greater rate of BC survival, it also seems to help prevent lung mets.

In general vitamin D helps with damn near everything so get your levels checked and if you're not at 55 then you want to supplement with D3. Studies have shown 50,000 IU's PER WEEK is safe if you're really low, but before you start mega dosing Private Message Ronda and she said she will chat with you more.

Adriamyicin causes heart damage 2000 mg per day of l-carnitine and 200 mg per day co Q-10 enzyme help prevent and repair this during and for 6 months after chemo treatment is over.

She also said 60 grams of protein per day while going through chemo.

She said green tea extract was ok to take ( 1000 mg).

DRINK LOTS OF WATER You want that stuff out of your system quickly, so you want to pee often for the 3 days after because the chemo can cause bladder cancer, so dilute it and get it out of there.

*Buy sea bands for nausea and where them the day of and 4 days after treatment for nausea. I didn't need any meds when I wore these, they work by using acupressure on your wrists, you can get them at the drug store by the other motion sickness products.

Taxol

Starting the day after taxol I took 20 grams (yes grams) of glutamine for 4 days to help prevent neuropathy. I do not have any residual neuropathy.

The argument for using integrative treatment during chemo is to help women get through all the treatments. I got through it and I am healthier now than before I started.

I also did 4 colonics one per week starting 4 weeks before I started my chemo treatment to get my bowels working smoothly. I have heard this will also help with reducing nausea.

If you can get a naturopath who is experienced with chemo patients I would recommend it because they've got all kinds of things to help you get through treatment and cancer, but I know money can be tight and a lot of people just don't have access that we do in Portland Oregon.

I hope this helps.

Good luck to all of you

Ronda

Pack a “chemo bag”. Put in magazines, your favorite soft blanket, book, iPod, crossword puzzle book, newspaper, snacks, water, paper/pen, notebook, soothing music, salty foods such as pretzels.

Do not put your favorite songs on your iPod to listen to, or you will neurologically reprogram your mind and throw up when you hear them in the future.

Do not allow the oncologists or anyone to tell you that it is your imagination that smells/odors make you nauseated.

It is from the chemo, and this is from anna921..... About being sensitive to smell. It's not in your head! As soon as I started chemo, I started having this problem. One night, I woke up from a deep sleep gagging and ready to roll because the smell of the soap by the bathroom sink wafted thought the open door. I had to cover my nose and mouth and take the bar outside to the trash can. Shampoo and deodorant I've used for years smelled like sewer gases and I had to find unscented deodorant; shampoo wasn't a problem, I had no hair. Shower gel, laundry detergent, perfume, various foods, outside smells, all made my stomach lurch. Even today, a year out from chemo, some smells do it to me. I try to stay away from roads with lots of restaurants during lunch and dinner time; it can get hairy sometimes. At least I know which restaurant not to patronize.

From the time they start administering the med, try visual imaging. Imagine those cancer cells being swept away by the ocean waves, or taken away on the wings of a beautiful bird, or being caught in the bubbles of bath water, popping and floating down the drain. Peaceful imaging is suggested. Peaceful thoughts are suggested.

Some have experienced the “blurred” vision almost as soon as they start administering the meds. Almost all have said that they experienced the “blurred” vision for days following chemo. It has been difficult for most to even type on the computer, and reading or watching the television presents a problem.

Most gals report having bone pain, some more severe than others. If you have a question always call your oncologist. Taxotere/Taxol have been reported as ones with this side effect.

Apparently one other side effect with the Taxotere which was reported by Heather (myjourney) is the following:

Hi Ladies. I wanted to share with you a little something that is actually a big something. I am set to have 12 sessions of Taxotere. Around session 4 my eyes started watering. My eyes have been watering, pretty constant tears sliding down my face with a bit of burning in the eyes for a few weeks now. I thought it was simply from the lack of lashes and the colder weather. Luckily, I mentioned this to my Onc and luckily he knew this was a bad thing, and luckily I was sent to see a eye specialist.


What is happening is the big word Epiphora. If you google Taxotere and Epiphora there is an article from The Oncologist that explains in greater detail. But basically, caught early the eye doc can surgerically open the tear duct.


In short. The chemo pools in the tear ducts, for some unknown reason. The chemo causes inflammation in the ducts and the tears can't flow correctly, which causes them to slide down your face. If left untreated, the scar tissue could cause serious and permanent tear duct damage.


Neulasta and Neupogen will also cause bone pain, as they cause the marrow to stress while building the WBC’s.

Hot baths, showers and moist heat may help with the bone pain.

Be patient…things can change, when going for your chemo treatments. Don’t set yourself up for a rigid schedule as delays do happen, i.e.; bookings, WBC not where they have to be to take the treatments. The first treatment can take as long as 6-7 hours.

Have someone go with you to your chemo treatments, or take you and pick you up. You will not be able to drive and should not be driving a vehicle.

No matter what you may think…no matter how vivid your imagination…your hair will not fly off of your head while driving home from your first chemo, and your head will not spin around 360 degrees spewing vomit the entire time (aka Linda Blair in The Excorcist). This is reported to be the most vivid of all images of one’s first chemo from Sandy.

Do not go to the mall, or shop for food afterwards. You may think you are feeling fine, but others have tried this and it is not a wise decision.

Do not lie in the sun after treatment.

If you are felling up to it, go out for a good meal after treatment. It can be the last good meal you will enjoy for a few days.

Wear something comfortable to treatments.

Stay up the night before so you can sleep during treatments.

Emend above all!!!

Do take all of the drugs they give you for nausea on time!

You might want to try Compazine for the 5th and 6th day after the anti-emetics were to be stopped, for “breakthrough” nausea, which may happen.

Some gals have gotten the prescription for medical marijuana, and reported that it did help. You have to do whatever it takes to get you through these treatments.

Some gals have used Lorazepam when they are feeling overwhelmed by everything.

Take a Valium the night before infusion fro AC. It helped with stress and has anti nausea properties

Tapioca, oatmeal and cream of wheat are all easy meals after treatment.

You can also get the wrist bands that people sometimes use for pregnancy.

Chillows is a pillow that is supposed to help you sleep better through night sweats.

This is a link that Pam has added to the site, and perhaps may be useful right here with the tips also.

http://www.tlcdirect.org/subcategory/CoolComfortWickAway.html

A heating pad is helpful when the Neulasta or Neupogen make you sore or during Taxol or Taxotere. Vicodin is also helpful when getting these meds.

Avoid spicy foods, unless you crave them. Eat what you crave.

Nutella is a chocolate hazelnut spread that you can dip or spread on a sandwich. It’s good with fruit or graham crackers. It is made by the same people who make the Ferrero Rochelle hazelnut candies. The great thing is even on chemo it still tastes pretty much the same and seems to stay down. They do not use preservatives and something about the hazelnut itself seems to ease the stomach a bit, plus they are what is called a clean food product as they use no chemicals and reduced minerals in their recipe, so that helps in the taste. From Tai who dearly loves this treat.

Here's a good solution from Mainsailset.

My oncologist told me that we should all be having 5 small servings of fruit a day. Years ago I discovered 'power pudding' which is the gift of the gods. I found out about this when I was caring for my Mom and Dad, and was a recommendation from the Hospice nurses.

Simply put: buy up all your favorite dried fruits (try to get unsulfured apricots) pour them all into a kettle. Cover with distilled water. Simmer until water has evaporated. You may need to add extra water. Cool. Put into blender, again add more water if blender starts to moan. I put the fruit into the refrigerator & freezer for storage.

Every day put 1-2 tablespoons on morning cereal, and then throughout the day, every day, use on meat, potatoes, ice cream. Goes with everything and is nice to find something that actually works, and is not one more chemical to add to our bodies.

One other thing that they recommended for someone experiencing constipation, was to put a piece of bread in your mouth and chew it till the cows come home, as it would stimulate the saliva and help digestion.

Avoid sugar to lessen mouth sores (and a good idea in general).

Day of chemo have a light meal. Some have suggested to carb starve the day of chemo, and as soon as they start administering the meds, carb load.

Luv2sing's oncologist recommended/prescribed that she have a small drink before her treatments, and while you may have to check with your oncologist before doing this, perhaps you may want to travel to Virginia and use Luv's oncBig%20smile
 
 
To lessen dry mouth, suck on hard candies, popsicles, or ice chips. CarynRose has recommended fudgesicles as she said the ice chips made her feel nauseated. Do the ice chips during infusion. Start this before chemo, continue during chemo treatments. There has been a problem from some that the ice chips have caused the mouth sores. Everyone reacts differently to the chemo.

Use magic mouthwash to prevent mouth sores.

This is one of the prescriptions you should have filled before you start chemo.

When they speak of Mary's Magic Mouthwash in the States - it could be made up of a combination of things.

Mylanta or Maalox - reduces acid.

Liquid Benadryl - (takes out any inflammation, allergic response)

Lidocaine - (freezing agent)- some places have it over-the-counter - others have prescription.

Liquid Tetracycline or Erythromycin - to prevent bacterial infection of sores in the mouth

Nystatin - to prevent thrush (white tongue and spots in mouth, tongue, thraoat)

sometimes glucocosteroid - reduces inflammation and swelling.

USE BIOTENE products of toothpaste, mouthwash, gum, toothbrushes, etc - the BEST for chemotherapy mouth

From Sammielily

I also was told to use a mild tooth paste, soft toothbrush, change toothbrushes every month, brush my teeth 6x a day minimum, and gargle with club soda every day. And I didn't get any mouth sores. But if you have mouth sores break open a cap. of Vitamin E and rub on and they will be gone in a couple of days!

Do not look when they shoot the nasty red one (Adriamyicin) in your vein!

One gal says that instead of thinking of the Adriamyicin as the “red devil”…she told the chemo nurse that the chemo was “liquid gold” coursing through her body getting rid of the cancer cells. Try to imagine the chemo as the allies in the war you are waging against triple negative breast cancer.

Drink 3 liters (quarts) of water a day at least while on chemo, and start a day or two before chemo. Drink lots and lots of water before chemo, during chemo and continue to do so every day after chemo. Water detoxifies the kidneys.

From Debs....dmayes
And maybe add some ginger to your water - helps with the tummy feelings.  I add a decent few chunks of a night to my water jar (already measured out in 2L - so I know that is what I drink the next day) and it adds a great taste to plain old boring water.  All these tricks learnt here mind you - such a great bunch of ladies sharing these ideas!
 
Drink more fluids clear in color such as apple juice, ginger ale, tea, broth, Jello, Gatorade, High-C.

Note: Some people found that they could not tolerate fruit juices as they can cause diarrhea

This tip is from our sister Toyoko from Japan:

I drink a lot of water and organic tea everyday. This is my small chemo tip. The tea I often drink is a kind of green tea, so called "coarse tea (Ban-cha)" which is cheaper than green tea but has lower caffeine and higher cathechins. High grade green tea needs to use lower temperature hot water, but coarse tea needs boiled water like black tea and higher temperature hot water can make higher density cathechin which is good for preventing cancer.

Cauliflower/radishes help with bad taste in the mouth.

You may notice a chemical smell on your clothing and bed linens. This is from the chemo. You will also notice this smell after using the toilet. You are excreting the chemicals from your body. Again, stay hydrated as it flushes all those chemicals out of your body.

You may feel a burning sensation in the bladder and in the vaginal area, and some gals have reported that they felt this as soon as the meds were being administered. You may experience a burning sensation when you void. There is a possibility that the vagina and the urethra will become dry, due to the chemo.

While you are having the meds administered, you will probably have to use the bathroom. If you happen to look in the mirror, do not be alarmed at your skin color. It will have changed to a grayish color. That is also from the chemo meds.

If one of your meds is Adriamyicin, do not be alarmed if your urine is red. That is why you must continue to drink the water.

Eat a low fat, high fiber diet. Constipation can present a problem during chemo treatments.

Prepare for constipation by taking prescribed medications in a timely fashion.

From KSCASO......

Hello All. Currently I am "anemic" meaning my HGB (Hemoglobulin) is low

(currently around 9). Have them check your iron levels rather than just start another shot (Procrit which stimulates Red blood cell production).

If you don't have enough iron stored, the shots won't work.

I am also iron deficient, so have been taking good ole GERITOL. Two secrets to Iron absorption: the liquid is better absorbed and less constipatiing AND a 1/2 cup of Orange juice with the iron supplement will improve absorbtion as well. The pharmacist recommended the Geritol.

For nausea eat raw almonds and crystallized ginger together.

 
Green Smoothie Recipe!! From Susan....user name sydonashe
 
1 scoop green powder (you can buy at healthfood stores)
1 scoop whey protein (vanilla)
1/4 cup ground flaxseeds (brand - spectrum)
1 tsp probiotic powder
1 cup blueberries (frozen)
 
I use either a little organic fat free milk or cold water to make it smoother and I sometimes play around with ingredients to make it taste better.  The first four ingredients are a must though.  I have even replaced the whey protein with an EAS AdvantEGE low carb vanilla shake - yum.  You can always add a banana or strawberries.  A regular household blender works great - no need to go buy a juicer or anything!!  Let me know how you like it!  Big%20smile Susan
 
Also from Susan...supplements recommended for TNBC...from her naturopath. Make sure that you consult with your oncologist before adding these.
 
 
1. Fish oil -4000/day
2. D3 - 2000/day
3. Multivitamin (quality one such as "Thorne") 3 2x/day
4. Mushroom extract pill (1 am 1 pm)
5. Turmeric (1 am 1 pm)
6. Resverterol (1 am)
7. Indole 3 Carbinole
 
 
Here is the protocol listed out by her (Susan's) Natural Doctor: Please check with your oncologist
 
Benefits of the Daily Green Smoothie:
 
Concentrated green powders contain numerous phytochemicals to support optimal nutrition.  One of these phytochemicals, proanthocyanidins are found in grape skins and seeds, and fruits and vegetables which kill breast cancer cells in studies.
 
Whey induces phase II of your liver's detoxification pathway and can help clear toxins from your body.
 
Probiotics support estrogen clearing in the gastrointestinal system and keep your bowel ecology healthy.  Healthy intestinal flora metabolize nutrients needed for immune function and are associated with anticarcinogenic effects, particularly via the detoxification of compounds in the gut that cause genetic damage.
 
The linigans in ground flaxseeds (not present in the oil) have been shown in several animal studies to reduce tumor growth and help prevent metastasis.  Also the fiber in ground flax binds estrogen in the gut and impedes reabsorption. 
 
Fractionated pectin powder also called modified citrus pectin works to inhibit the spread of cancer and prevents the body's immune system from becoming overwhelmed by an increasing cancer cell load.  MCP molecules bind to receptors on cancerous cells, thereby preventing these cells from penetrating into nearby healthy tissues.  Once this has occured, the cancer cells cirulate in the blood stream until they die or are eliminated.
 
Basic Meals - Whole Food, anti inflammatory diet
 
Always eat a protein based breakfast
Eat a "rainbow" assortment of fruits and vegetables
Reduce exposure to pesticides by using organic foods
Avoid partially hydrogenated oils and eat olive oil and organic butter
Avoid high calorie, low nutrient foods.  Eat a low fat, high fiber diet
Stay away from sugar - it feeds cancer cells
Eat a lot of garlic
Eat a lot of cruciferous vegetables - a cup a day is a good goal
 
Exercise
 
The Journal of Clinical Oncology reports that exercise evokes a drop in relapse rate of breast cancer of 50-60%.
 
You must exercise!  Physical activity improves fatigue and mood, increases the rate of cirulation of antibodies and white blood cells, flushes carcinogens, and slows the release of stress related hormones which increase risk of illness, including cancer.  If you are still experiencing fatigue from your therapy, start slow.  It is best to do both cardiovascular and weight bearing exercises.
 
Mental/Emotional/Spiritual Care
 
Now that conventional treatment is over, take stock of your emotions.  There is no right way to have breast cancer and no right way to come out at the end of conventional treatment.  From a holistic perspective, transformation must happen beyond the physical level - encompassing emotional, energetic and spiritual change.  If stress or emotional issues are factors that led to the original development of cancer, it is time to focus on true healing in these areas.
 
Consider joining a support group or look into counseling to help deal with the stress you have going on now.
 
Detoxification and Cleansing
 
At least twice a year, you need a detoxification program.  This usually involves a medical food shake, at home detoxification protocols such as dry brushing, support for the digestive tract, possible colon hydrotherapy and dietary modifications.
 
Supplements:
 
Morning green smoothie
Green Tea (40 oz a day) - yogi is good - no lipton-no decaf!_________________________________________________
Eat bananas, potatoes and meats to maintain a normal potassium level. Potassium is needed for muscles to function properly.

A change in diet may occur since your taste for foods that were your favorites may not taste as good now. Some have said that they went back to the “comfort foods” of their childhood, such as soups and grilled cheese sandwiches.

Eat what you want and when you want. You must eat!!

Eat small meals. Some have suggested as many as 6 meals a day

Make an effort to exercise even if it is just for a little while each day.

Don’t overdo it with exercising but also do not believe them when they tell you “if you get lymphedema it never goes away”.

From Pam….do not overdo. Be flexible. If you are feeling better, plan an outing or chores. Please do them in small frames of time, until you know what you can handle. You may think you have the energy, but may not. This cannot only set you back physically, but it is emotionally frustrating.

Do not attempt to walk long distances. The hills (especially in Seattle), will still be there when you are feeling better. You will tire easily. Gauge yourself. Or, you can have someone drive the car right along where you are walking, and they can take you home when you start to feel ill. Otherwise, you may have to call someone to come and get you.

This tip is from ziggyo:

As for tips, ladies, I believe it is very important to remain as active as you can. There were some days during the A-C that I had to practically whip myself out the door to walk as briskly as I could for at least a half an hour but I did so, and overall I seem to be tolerating the chemical abuse to my body fairly well.

Whatever you do, do not attempt to ride your horses even a few days after chemo. You will as one gal said she did….create the “perfect storm”.

Do sleep as much as possible. Some say it is like sleeping off a hangover.

Some have reported becoming very dizzy when trying to shower the day of, or even a few days after chemo. Make sure that someone is nearby when you shower, in case you need help.

Have something to do at night when the steroids keep you awake. Don’t try to fight it, and sleep when you can.

If you need a sleeping aid, in a study, Unisom was found to be the one to use when you are on chemo. It is not habit forming. This was recommended by a brother-in-law who is a Registered Nurse.

Do things for yourself. Take a bubble bath, go out to lunch or do a little bit of shopping on the days you feel up to it. Go to see funny movie or rent them to watch at home. Read a funny book.

Go topless (bald) often. With some great earrings and makeup, you’ll look fabulous! Do the “Look Good…Feel Better” class.

This is from Kirby:

She teaches classes for ACS for the "Look Good, Feel Better" program. It is free to anyone going thru treatment. It takes about 2 hours but you get instruction in make-up along with a kit valued at $400.00 and up. All is done by donation. Call your local ACS to see if it is offered

For those with no eyelashes or barely any, use eyeliner. My preference is the cake kind that you mix with a bit of water. I use Chanel. Yes, pricey but will last forever and has good color, texture and staying power. Besides you are all worth it !

1. Dip the brush in water, maybe several times, then work the cake being careful to use the brush in the direction it was made. This keeps the hairs nice so you can continue to form a nice thin line.

2. Work the brush to a nice point. Use relatively quickly so the moisture doesn't dry out.

3. Pull the outer corner of your eye to make a flatter surface of your eyelid.

4. Start with the brush about 2/3 to 3/4 of the way in and trying to get a continuous line, draw thinly right at the base where your eyelashes were. Having dark pigmentation around your eyes, will give the illusion of lashes. You can do the same with the bottom lash area but only going on the outer 2/3 to 1/2 of the lash area.

5. By not taking it along the entire lash area, it keeps your eye more open looking and not over done. I like a charcoal color. That would be suitable for pretty much all colorings. Practice drawing the line on the back of your hand until you think you have control of the brush and the pressure to create the thinness of line you would like.

1. Eyebrows…I like a pencil. The better quality pencil generally the better color smoothness and they last longer. Some of the inexpensive pencils will feel like they are tearing up your face! Your skin is more delicate during chemo. Always have a good eyebrow pencil sharpener. Use it before each use. It keeps the line better and cleans the oils off so it will draw more accurate. I have everyone practice drawing on their hand to emulate the little strokes necessary to create a natural look.

2. Use very small, what will look like little brush strokes to create your eyebrow.

Make many small strokes.

3. If necessary, use an eyebrow brush afterwards to soften the look. If the color is a bit too intense, very lightly dust powder over.

4. To get the angles of a natural brow, use the pencil setting it beside your nose, facing up. At that angle it should go from the widest part of your nose, past the inside corner of your eye.

5. Make a dot at that point, where your brow should start.

6, Next, looking directly in the mirror, place a dot, brow area, above your pupil. This is where the brow arches.

7. 3rd and last, use your pencil again against your nose but swing it to the outer corner of your eye. Place a dot at the end of the imaginary line created from the angle of pencil running thru the outside corner. That is where your brow should end. Use small strokes to connect the dots.

Good luck!

Make plans for the future, such as preparations for planting a garden, or planning a weekend get-a-way. One bit of advice from someone was that even after a year, you feel like you are in a dream. Listen to your body. When you are tired, rest.

YOU ARE NOT ALONE. THE WOMEN ON THE TNBC SITE ARE HERE FOR YOU EVERY DAY! 



Edited by Nancy - Aug 19 2009 at 7:16am
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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