I have a wig (blonde with highlights), classy, gorgeous... never used. I got it when I was going to start chemo (3 years ago), and never wanted to wear it...
Also, I have a bonnet, with matching band and two pretty scarves - in a rust color, with the scarves in different prints. Lovely, indeed... still with their stickers.
I never ever used any - my hair has regrown :)))) by now. I'll be happy to ship it to someone who doesn't have an insurance paying for the full package....
Do send me a PM, and I can send you pics and additional information.
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I had originally a mastectomy, and later a bilateral, with implants. Didin't need even to have expanders - I have to say that my surgeons were amazing. No nipple (anyway, the right was already off,,,), but now I have a little smaller than earlier (now a 36D, down from DD), perky and quite natural-feeling breasts. The scars are quite obvious, but I had the op done only 2 months ago, so it is still fading.
Best thing I could decide: no more reconstruction for me is a great though, no other scarring, no exchange. I have silicone implants.
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I am posting this list, as it is fruit of a lot of chemo-babes pains... and experiences. I find it complete and useful. Please see the credits at the end of the list.
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. Information is key in this fight!!!
Pre-Chemo Shopping List
None of this is "new" but it might be helpful to someone (like me) whose chemo started on short notice.
- Hand-sanitizer in a bottle. 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) - Paracetamol/acetaminophen - in particular, if you are having Neulasta shots as they give dull aches
- 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 (anti-diarrhea) - note, diarrhea may be induced by the anti-nausea medication. Read the notice, and ask the doctor.
- Anticonstipation: Walnuts, pecans, almonds, dried apricots, prunes, prune juice, Colace, Miralax, Senekot-S (No need to buy all of these. See what you need & what works for you!)
- disposable flatware, plates and cups (for times when you're tired or immune-suppressed; plastic flatware helps offset metallic taste in mouth)
- Sugarfree chewing gum, sugar free hard candy (some people prefer lemon flavor) or breath mints
- Protein food sources (e.g., peanut butter, nuts, clams, oysters, meat, avoid soy if you are ER+)
- unscented moisturizer
- sunscreen (for face and for everything else; SPF 15+)
- new or washed shower curtain liner (minimize bacteria, mold)
- new toothbrushes (mouth is really vulnerable to infections, sores; oral hygiene is super-important) - extra soft!!!
- another thermometer (since tracking temp matters)
- at least one extra box of Kleenex
- indiv packets of kleenexes (disappearance of nose hairs = dripping nose)
- a squirt bottle or 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.)
- Container of sanitizing wipes
- artificial tears for dry eyes (consider Renew or Similasan brands)
- acidophilus capsules for yeast infections (keep in fridge as they have short shelf live)
- non-latex gloves to wear when doing dishes, etc. to reduce nicks and cuts, at least on those low blood count days.
- string cheese (can cause constipation if eaten during the chemo!)
- unsweetened single servings of applesauce
- single servings 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 (individual 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 constipation...)
- 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
(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)
Eye-liner, eyebrows pencils are helpful if you face eyelashes/eyebrows loss. If you want to consider permanent tattoos, must be done BEFORE chemo (during chemo the colors aren't stable).
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, 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.
• Drink a lot of fluid, preferably water.
• For moisturizers, you probably want something as scent free as possible (e.g., Aquaphor is recommended).
• 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!
• Support your immune system with iron- and protein-rich foods (but check with doctor before taking supplement)
• Careful with protein bars (or any other foods) that contain soy if you are ER+
• Closing the toilet seat before flushing will dramatically reduce distribution of bacteria in the bathroom. I was told to flush twice first 2 days after chemo (I was on A/C).
• Replace (or wash w/ bleach) the shower curtain liners.
• Get soft, seam-free (or as seam-free as possible) hat for sleeping-in
• Wear latex-gloves when cleaning to avoid nicks and scratches
• Use plastic flatware instead of metal
• Biotene mouth wash and/or mouthrinse (and/or toothpaste and chewing gum, lemon/lime cordial, Breathsavers mints)
• Oasis products were also mentioned
• "If you get mouth sores, there's a little cocktail you can whip up with liquid benadryl and Maalox."
• I put lemon or lime drops or slices into my water glass -
• Someone recommended Vitamin C supplements but my dietitian said "No Vitamin C supplements for women with breast cancer EVER." (I posted her explanation elsewhere on www.breastcancer.org.)
• Change your toothbrush frequently
• Eating a popsicle or ice chips or something else very cold, while being given adriamycin
* Frequent cleansing with combo of water, baking soda and salt is recommended,
* Sucking on lemon wedges to re-encourage salivary glands,
* Brushing one's tongue with a toothbrush, hydrating with water. Cytoxan seems to mess with the salivary glands.
• The nurse may clean the port by injecting Heperin into it. A horrible taste can sometimes be avoided by holding your nose while the Heperin is injected.
• A numbing agent may make entry in and out of the port less painful.
• Tylenol is the first pain killer of choice as it has the fewest possible side-effects (I was told "No Ibuprofen or aspirin.") If you are going to be getting Neulasta, Aleve was recommended as a pain killer for aches (I used Tylenol successfully). The poster suggested taking a painkiller 30 minutes prior to the Neulasta injection, and then regularly for 2-3 days after.
• Regular exercise (e.g., a walk) seems to help lessen or prevent Neulasta pain for many of us
Sleeplessness (esp in first few days post chemo)
• Ambien CR
• I'm nervous about "sleep aids" so the nurse recommended I take a Benadryl.
• An H2 blocker such as Pepcid or Nexium
• Eating fiber in days before chemo can help prevent/lessen constipation
• 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 gallons of water and tea. Eat active culture or probiotic yogurt every single day. The secret, the poster suggests, may be taking taking something at the same time as the chemo before things can get really bottled up, so to speak.
• A cup of coffee (if you've gone 'off it') may help!
• Avocadoes (eaten straight out of the skin, w/ a little salt, pepper, & olive oil) are helping me out!
• Imodium is good for stopping this
• Key worry is dehydration, so keep drinking water!
• Stay away from sugary things, as refined sugar can aggravate diarrhea
• From a dietary perspective, you can try the BRAT diet: Banana, Rice, Applesauce, Toast
"Nether Region" Care
• If you wind up with diarrhea, I strongly recommend the flushable moist wipes; they really help with general soft tissue irritation.
• The first few days after chemo, I use moist wipes to try to prevent discomfort.
• 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?)
Hair loss (A/C around 14-19 days after first chemo)
• Hair net to wear at night, if you don't want to shave your head.
• 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; others used the tape) helps to remove lingering hairs.
• Hair in pubic area often starts to fall out first. (See Starting Chemo May 2008 converation to get a sense of when, where and how much hair is lost over time!)
Protein and iron rich foods may help boost Red Blood Count: Meat chili, clams, oysters, some beans, nuts. Ask your doctor before you decide to take Iron 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.)
These lists may be read in conjunction with the conversation created by www.breastcancer.org member Melissaga and RockTheBald ("Tips for Getting Through Chemotherapy") on December 6th, 2006, with help from Miki.
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 http://community.breastcancer.org/topic/69/conversation/706846?page=1#comment_950219 , 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'.)
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I had a mastectomy july 07. I have decided to go for a bilat, and have matching implants put in - it will be done next monday.
I had large breasts all my life - I am delighted to go for a small set. Also, I MUCH prefer an operation, rather than facing chemo again. The problem is that if cancer comes back, not only you need an op, but also chemo and rads... Plus, in that way the new boobs will be matching, and I definitely don't want to have further scars on my body, tummy, back, or anywhere.
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I shaved - aka cut it down to a number 6 (in fact it was shorter, as I clippered myself I didn't keep the inclination of the machine standard). I never lost it ALL after that, kept a duvet all over the head, but definitely not much.
for moisturizer, I used whatever cream I had on hand - the lighter the better. Nivea makes some foam stuff for the face that worked well... note that the nurse told me NOT to use oils or heavy stuff, because the head already has oil glands so it gets too oily.
now it is growing again, love that part.
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I found out that some old fashioned onc and surgeons prefer to wait long before the recon because.... (don't laugh), then we are so happy to have ANY breast at all, that we don't complain if it isn't perfect. Others say that they want the woman to be sure of her decision, and to realize that it is a new op...
Luckily, it seems that many surgeons are stopping considering us little girls needing decisions made for us, and talk to us like normal human beings....
I am in your situation: mastectomy last july, chemo finished early december, no rads, on tamox and Herceptin, now I am seeing next month the PS to see how to do the recon. Honestly: I can't wait. I hope to get at it before summer hits!!!!
What kind of recon are you looking at?
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Well, my doc is very liberal about changing dates. We are on a 3 weeks schedule, but she says that it can be as little as two weeks, or as much as four if really necessary. The flexibility is really nice.
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Hi Julie... I see from different posts that each of us has a different take - it looks different for all of us.
I had my last Taxol on the 3rd of december. The tingling on the fingers is slowly fading, I am still occasionally tired - definitely not up to full speed - but I am feeling better everyday.
Hair is growing everywhere - lashes are almost there, legs and armpits need a shave (ugh, again), and hair is about 1/3 inch long (good coverage, but long from tresses...). I am starting to go around "commando", simply because I am really sick of the wig and don't like other coverages...
My nails and my skin got very, very dry after end of treatment, getting better now. Treat yourself to some really good skincare products...
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sorry to find you here - but welcome. I only read your thread now, I don't come anymore all the time to the board.
I think finding out about cancer is a scary and stressful situation for all, whether we have history or not. I did have BC history in the family, but always did my checkups, and am reasonably healthy. Also, I am an UC / ulcerative colitis - and I though - what the heck, I am not going to get all illnesses in the history of medecine, right? wrong. I am 44, with a daughter 12 yrs old, was Rx last July... now I have finished chemo, and am starting to see light.
I feel it is important to always live your life: don't let cancer ride it! yes, it is a challenge, but it can be won, and you can be still having fun with your daughter, going out, celebrate life. Now that I am done at least with the most aggressive treatments, I look back, and thanks goodness I see 6 months full of many moments - emotional, happy, sad, lots of tears but also many smiles. My daughter got scared too, but as she sees that her grandma is alive and fine, she is also quite positive... only people reactions sometimes scare her, but I suspect she used the concept a couple of times to get out of homework 😉
Anyway - stay strong, and keep doing whatever you do to keep your mind active, your body healthy and your friends and family involved. Don't keep them away! you need them as much as they need you.
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COngratulations!!! that is a great feeling, isn't it??? I walked out of my last Taxol feeling loads lighter, and the side effects were so much easier to take, knowing that it was the LAST one!!!
For me, the tiredness started improving after the cycle was finished (so I did 2 weeks cycles, lets say about 2 weeks after the last volontary poisoning...). Now (about 6 weeks later), I am feeling almost normal, the tingling in my fingers is much much less, and my nails are starting to regrow normally (have 2 dark nails on toes). Also, my hair has been coming in fast and furious since 2-3 weeks, :))) now I look like a 5 o'clock shadow all over... but I expect that by next month I will do without wigs!!! bless the hair.
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🙂 hello to all others on Herceptin and/or tamoxifen...
I started herceptin on the 3rd dec, initial load OK. Doc only asked to monitor pressure, and as I have a clinically low pressure normally and it did not do any change (strong heart, no history of heart failure), I stayed in only the morning. Since, I do my infusions at the doc office, where it is less than an hour from hooking me up (I still have my cat port from the chemo, so that is a doodle), and stepping out of the door!!! yeeppee. I am not experiencing any side effects - not from Herceptin, and not even from Tamoxifen (well, I already had sweats from the chemo, so I don't count those...). Or at least, not so far....
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Hmm. No idea...
I had a mastectomy in July, the other side is a DD size (or E, but who's counting). As I am a slim woman, the difference is VERY noticeable, I wear a prosthesis but it is ugly and uncomfortable. It feels like a cold chicken cutlet in one's bra... yuk.
so, rather than a full recon, I am considering a drastic reduction, and a small recon on the mastectomy's side (probably just a small implant, the surgeon left enough skin in place).
I am also quite curious about the reduction pain/impact... At the mastectomy time, it wasn't very painful... I was worried and tired, but physically that wasn't too bad, I would expect the redux to be similar?
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When I got sick, and I had to leave for the hospital for my mastectomy, I had to cancel a much awaited vacation with my little girl - 11 yrs old. The day I checked in the hospital, she gave me a special letter, to take with me and to read only once there in my bed... :)) the sweetest love letter I have ever had - and that I will ever receive.
Our children know how to reach out to us. There is a special bond there, that is stronger than illness.
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WOW, Sarah... what a great idea. I am not sure I would have been that brave.
I shaved my hair off when the time came, and kept it from my little girl. I was pretty lucid through it, but I had a cry over when I finally cleared my head... yet, it was loads better than to see day-to-day the fall-out! yuk.
Now, I am finished with chemo, and am waiting for hair to re-grow. So, please remember ... it is just a phase. It feels very long while it last: I remember when I was pregnant years ago, it felt it would last forever... yet, it was such a short time in my life! I assume some day I will barely remember that I was bald once. (or at least, I hope so... :)) )
Still today, I see as the worse part of this nasty adventure was loosing my hair, my brows, my eyelashes.
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Finished chemo 3rd of december, now done 3rd herceptin. Hair is coming in - I'd say pretty fast, one month only and about 1cm of hair - normal rate. Lashes and brows are very slow on the other hand.
Haven't noticed any side effects so far... my nails are a bit week (effect of the beloved Taxol), but are growing fast as well.
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How funny... nobody gave me this advice.
I didn't have any loose nail nor discolored on my hand, and didn't wear any varnish. now - three weeks after end of last Taxol - I notice that some are a bit weaker (normally I have very strong nails).
On my feet, I have a couple a bit painful and darkened in color - yet, no sandals in -5 degrees....
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Another Xmas freak here!!!
While I always do a nice xmas, this year I am definitely planning big way - the food, the wine, presents for everybody, and I seem not to be afraid to invite all for xmas dinner!!! and I am loving it.
Hopefully I will not regret it once I get to the 6th of Jan, money should not become an issue anyway, and I guess a bit of splurging and pleasing isnt really bad after 6 months of BC. Maybe there is also a bit of partying for the end of treatment (I had the last chemo at the beginning of december), and I confess that as I buy presents for others, I also splurge on myself occasionally... just bought the latest Clarins' cream, as the doc told me that tamoxifen will get my skin dryer.... haha, good excuse huh.
Anyway... to all a good Christmas!!!! HAPPY HOLIDAYS!!!
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One more suggestion about wigs... I got some super ones on ... ebay! there are some to be bought in UK, but many for quite cheap in China or Hong Kong. They cost very little (most of the cost is shipping, about 20 US dollars each), artificial hair but quite good. Come in all colors, length and so on... I like having several ones, and that means I can change it. If you want, I can post here the reference of the guy I bought from.
Not the same quality than my "good" one... but it may be good if you want to have a choice hidden in your shelf! (or, an ace up your sleeve... )
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Yes, very interesting thread. I guess we all went through a "research phase", simply because we needed to learn more about what we have. Positivity is certainly not a cure - but as Liz points out, it helps a lot in keeping a good quality of life while we are treated. Also, if stress can be surmised to be a factor in some cancers, a serene approach may facilitate treatment: being serene and positive will help sleeping and eating well, keeping a social life, and all this in turn will help making us stronger through treatment (chemo, rads, whatever). I don't think this aspect is to be forgotten.
I am not a believer of alternative medecines. I can drink a chamomile, but will not limit my options: chemo as well as rads has been used for years, and the results have been measured over decades. Today they are better controlled: I am not sure in another 20 years they will still be popular (I hope that by then, other treatments and prevention will have come into play), but for now I could not imagine to refuse them. They are expensive, and definitely drugs companies are making their bread and butter on that, but part of that money is also financing further research... the goal is, as Jacquie says smartly, to keep making money, and the best treatments will get the best return.
My mom, who got BC at 34 (that was 35 yrs ago), got radical surgery (mastectomy), chemo, rads, and androgens hormons to block her natural oestrogens. She survives still today, and is in good shape. I believe that the treatment she got made the difference - even if at the time it was terribly handicapping and debilitating, and until today she is happy she had the strength to go through with it. 🙂
Liz, I was interesting in reading about your Chron's... I have it too... when it rains, it pours huh. Lucky for me, currently it is dormant... so I was able to go through with Chemo and finish it. I have to say that comparing with Chron's, chemo was "a walk in the park"...
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