Starting chemo August 2017 - would love some moral support!

PauletteK

Rdeeside - finally my steroid drug kicked in now I am hungery even at 10 pm.

I would like to know which brand will be a good one for strength nail polish. We should prepare for it.

sweetp6217

Willow,

I have some bras that can convert to an X pattern on the back which will bring the straps closer to my neck and further from the port. Luckily I wear a uniform and don't care if they see my straps. We'll see if this really works when I get my port on Tuesday!

rdeesides

PaulletteK - oh that is good, I think? Good that you are hungry but I hope not too hungry? Lol. I hope that you feel ok. I am trying to lose weight so I hope chemo doesnt mess me up and make me want to eat lots of bad stuff

Willow22

rdeesides, I'm also hoping to eat healthfully during treatment.... I was doing well with diet this spring, and then did some stress eating and not having the energy/ motivation to care about what I was eating thru the diagnosis and waiting phase.


Wouldn't that be cool to develop a chemo that didn't cause hair loss?!!! My oncotype recurrence score came back at 43, which my BS said is one of the highest numbers she's seen, including other TNBC. I haven't talked to my MO yet, but I'm wondering if they'll change me from taxotere/cytoxan to the adriamycin/cisplatn/taxol regimen. Both cause total hair loss (which I "think" I will deal with ok as long as it eventually grows back), but the taxotere can sometimes cause permanent bald spots or complete baldness (yikes!). The fear of permanent hair loss was what made me decide to do cold capping, so if they change my meds, I may not need/want to do it.....

Willow22

kapisi, have you had the biopsy and gotten results yet? Keeping you in my prayers for a good report!!!!

toughcookie_21

Hi all, I am very reluctantly starting chemo in august. I will find out on august 2 what my regimen and schedule is going to be. I just had a BMX with tissue expanders on Tuesday and I'm healing well. I will be looking into cold capping as well. I am willing to pay for it myself to avoid losing my hair. I'm really struggling with accepting hair loss as a side effect and that permanent hair loss could happen with some chemo drugs.

As far as eating healthy and working out- I had been doing really well with eating healthy and working out several days a week for the past year. I cut out sugar and white carbs. I had actually lost weight and was the reason I noticed the dimple in my breast- there was no lump, but when I raised my hand above my head, there was an indentation on my right breast that had never been there before. I don't know if I would have seen it if I hadn't lost weight.

I'm trying to stick to healthy eating but it's been hard and now with surgery I can't work out and people keep bringing yummy but really unhealthy food to my house (lasagne! Cookies! Chicken noodle soup!)

Good luck to all as we move into this phase of treatment.

PauletteK

I have gained some weight before surgery purposely because over the couple years I lost about 20 lbs. Now I gained about few lbs because of water weight. I eat mostly organic food and eat carbs during lunch and very little brown rice at night. Since I was on diet before I do not mind the hungry feeling at all, yesterday I was hungry but with no appetite so I can control what I put in my mouth. Strong will power will get us thru.

As far as hair, I wonder which drugs will give us permanently hair loss? I asked my nurse and oncologist he said the drugs I'm using my hair will grow back.

Willow22- so sorry that you are going thru and your stage of cancer is much better than most of us. Why is make the difference

Willow22

welcome toughcookie21.... Wish you (and all of us!) didn't have to go thru chemo, but glad to have you in our support network!

PauletteK, taxotere can sometimes cause permanent hair loss (6 to 13% patients have areas on scalp where hair doesn't ever grow back after chemo, and some have complete baldness), but I think taxotere is the only chemo drug know to cause permanent issues. You may have seen tv ads for the class action suit, alleging that the drug company knew there was a small chance for permanent hair loss but did not notify doctors and patients of that risk.

rdeesides

Willow - Good for you for trying to cold cap! I think most people are happy they did it. I don't think I can manage it, but if I could I would do it too

Toughcookie - Sorry you are joining us, but glad to hear you are healing well from chemo.

Paullettek - You are right that strong willpower will get us through. I know we will get through this, even though it won't be fun!

As far as the emotional aspect of losing hair, I was very determined to cold cap for a while. But then I started watching YouTube videos of cancer patients showing their wigs and i was so impressed with the wigs that I'm a bit less scared now. I really couldn't tell they were fake.

Rebekah

PauletteK

I do not mind losing hair but. It permanently!! 😡

Willow22- thank you for the information. I make sure with my doc I am not doing Taxotere. Why would we do that if we can do Taxol?

Gingernurse

I too am afraid of losing my hair permanently, however my MO has been practicing for over 20+ years and said he had not yet had any of his patients have issues with hair regrowth. I've always had very coarse, thick red curly/ wavy hair and my two ponytails equal most who have a healthy one pony tail. I'll admit I' scared $h*tless but I would rather be alive.

Has anyone ever heard of anyone going through TCHP without the SE of hair loss? I'm trying to figure it out because my hair is past my shoulder's and if I can dentate one more time, I'd like to Pantene Beautiful Lengths. I cry a lot, but I let myself cry rather than stuffing it down inside because that will negatively effect my body and my healing.

I'm eating cold oats soaked in almond milk with fruit and chia seeds daily and mostly a vegan diet, no oil. I even make my own hummus without tahini. I still do yoga daily and I'm hoping to work full time 11-7 through this process. I am now single trying to maintain a household(thank goodness no kids) just fur babies. Fortunately, the Cancer Center I go to has two private rooms to allow for sleeping since I'll be getting off work at 7am and start my infusions at 9:45am- and I'm already a light sleeper.

Did anyone find out about a good nail polish to possibly maintain good nails? I find out Tuesday what steroids and antiemetic regimin I'll be on. Also, if you woant to listen to some really fun tunes- try Greensky Bluegrass. It really brightens my spirits aalong with gardening. I refuse to let this BC control my life. I'm tough as nails and up until now, I've only had the flu once even though I am a nurse and exposed to all kinds of potential illness. Is anyone else in my situation?

PauletteK

Donagingernurse - people suggested to use OPI envy nail polish and I ordered it and give it a try. I have cut my hair short and don't think my hair will stay 😢 I have one chemo so nothing changed yet

VL22

Hi ladies!

My chemo was supposed to start yesterday, but an infection in my armpit, that darn SLNB haunting me, put an end to that! Now I'm starting 7/31, which to me is basically August. My BC has been stop and go for months - if a problem or obstacle could arise to create a delay it happened. In the beginning this terrified me, especially with one of my tumors being TN, but I've gotten passed that.

So good luck to all!

PauletteK

VL22 - good luck to your chemo on 31st, I know this isn't an easy journey and we will finish soon.

I'm counting my days each day,

Seaster

Hi Ladies, My 1st post here...I also will be starting chemo Aug 7. I will be doing the 12 week Taxol and Herceptin for 1 yr. I get my port on Thurs. I'm prepared mentally. Plan on icing fingers and toes.Ordered wig and turbans. Nice to meet you all

HaileysHooters

Hi All,

It looks like I will be joining this August group as well. I have a tentative start date of Friday, but I have my fertility retrieval surgery TOMORROW & I can't imagine starting chemo 2 days after having my ovaries stabbed.... I have my chemo orientation on Friday too, but I think I'm going to ask them to push back my first infusion to next week.

Has anyone chosen their infusion day? I'll be doing TC x 4 once every 3 weeks... I've heard the hardest days are around 3-7. I'm wondering if it's best to have chemo on Weds. or Thurs. so I can keep up with work.

I also ordered Penguin Cold Caps and will be doing my damnedest to keep my locks. I still need to figure out who will be helping exchange the caps every 25 mins. so the anxiety is piling on there.

If anyone will be doing the same drug regime, I've found this thread EXTREMELY helpful with getting prepared - https://community.breastcancer.org/forum/69/topics...

I've also had a few friends go through chemo & have given me some great tips that I plan on utilizing myself -

- Keep a daily journal of drugs, side effects, emotions, food intake, and how you feel each day.

- Drinking TONSSSSSS of water 2 days before, day of, and 2 days after infusion to help flush your system (obviously, ideal to drink plenty always). I've heard this also helps with hair loss.

- Instead of ordering expensive mittens and booties, bring bags of frozen veggies for your hands and feet.

- Nail NV is supposed to help strengthen nail beds. OK to apply every day.

- Get an aluminum-free deodorant. Apparently most antiperspirants have aluminum as the active ingredient, and when this seeps into your blood steam and mixes with the chemo, this also aids in hair loss.

- Our good cells that will unfortunately suffer along with the dying cancer cells will rebuild based off of what we're consuming. Keep nutrition in mind while re-fueling our bodies.

- Rinsing your mouth after every meal with baking soda and water will help with mouth sores. Suck on ice chips during infusion.

- Claritin (NOT D - just regular claritin) is quickly going to become our friend - helps suppress nausea and fixes bone pain for anyone doing Neulasta shot. I've personally been instructed to take claritin starting the day of my infusion and every day until I'm 5 days out.

If anyone else has any pointers, please share.

Wah,

Hailey

PauletteK

Seaster and Haileys - welcome to this August group. I had my first chemo on 7/21 and it went fine. I was tired on day 4 today is my day 5 I have more energy.

I didn't plan to get my cold cap I ordered my turbans and thinking to order my wig this week. It's still summer I doubt I can wear a wig daily. I save that for winter time.

JanetMara

Hi Willow 22,

I take hair,nails and skin capsules and I take a clove of garlic and dig my nails on to it for 1 minute,its been known to strenghten nails and prevent splitting,it helped.

JanetMara

With hair loss,another breast cancer friend of mine used castor oil and coconut oil (mixed together) to grow hair and i'd been using it too.

Gingernurse

Wow Hailey!

Thanks so much for the input. My husband and I spent 17K trying to get pregnant so I hope this turns out well for you!! I'm foregoing the cold caps because its just not feesable for me. The idea of frozed veggies is fantastic for keeping toes and fingers cold. Also, I hadn't thought about deodorant however, I looked up my current deodorant Dove advanced care cleartone and it is NOT aluminum free TRASHED. I did however throw out an beauty product that contained parabens. Good luck! I will definitely use your tips!! I did find a few that aren't too pricy:

Schmidt's Natural Charcoal & Magnesium Deodorant

Arm & Hammer

Thom's of Maine

Kiss MY Face Active Life

Stinkbugs Natural Aluminum Free

Nivea Fresh Stick 48 Hour

sweetp6217

Hello again ladies,

I am post PORT installation by about 17 hours and took my 2nd dosing of tylenol. Funny how you wake up from discomfort at 3:40 AM ("hello...you forgot about me"). Before I went in , I grabbed a sharpie and drew a dot up at my shoulders where the bra-line goes. The tech that prepped me didn't say a word. Thankfully, the port misses my bra-line but not if I choose to wear my sport bras; oh well. Looks as though the placement is what it is Willow.

Later this morning, I'll try calling the financial lady (again) about the perjeta (prior authorization, thank you BCBS). I also went to my "orientation" with the head nurse (hubby made it to this appointment and good thing too, the fentanyl was still in effect to some extent). Towards the end of that meeting, she whipped out a laser printed flier with a location and phone number of a ACS Wig Boutique somewhat near me. (Yippee! and Where was that 2 weeks ago?). To make an appointment, I'll need to call the ACS and was told that it helps to be super patient. Can't pass up an a free new wig. Will let you know how that goes.

Hugs

dmjmom

I had my first chemo yesterday, but like to read your thread too. I wanted to add something to the deodorant discussion. The People's Pharmacy sells roll-on Milk of Magnesia deodorant in their online store: https://www.peoplespharmacy.com/store/body-care/ec...

I like to have that for travel, but at home I just use plain (unflavored) generic Milk of Magnesia for deodorant and have for years. I use a round cosmetic pad to apply it. It works well for me (and I live in Houston where it's hot and humid). I don't know if it will work for everyone, but might be worth a try.

Debby

PauletteK

Had a bad night just kept waking up and my stomach was unsettling. Now I have to push myself to have some breakfast, really hope day six is a better day.

Willow22

welcome Gingernurse, Vl22, Hailey, Seaster. Juamara and Dmjmom!


thanks for all the tips on nail care! I have a problem with nails splitting anyway, so I know they'll need all the help they can get during chemo!



VL22, that has to be so frustrating to keep getting delayed! It's hard enough getting mentally prepared for all of this, and then to have it postponed sucks! I'm worried my first chemo Friday 7/28 may be delayed... I had a margin revision and port placement 7/18, and have developed an irritated rash in one arm pit and a little sprinkle of it other places where the ace bandage was tightly wrapped and rubbing postop. Thought it was getting better with hydrocortisone, but yesterday it looked a little infected 😞

Hailey, I did ask for a Friday start date since my husband travels frequently and is usually home on Thursday evenings. I'm also on 4 rounds of n taxotere/cytoxan 3 weeks apart. Thanks for the regimen link ...will check it out this evening.

I've been surprised how well the aluminum free deodorants work... started out with Schmidt lavender/sage scented one, but it's really hard and takes too long holding it against your skin to make it easily applied (plus the smell was too much for me). I have 2 from Toms of Maine - lavender and a lemongrass one (also sell powder scented one which seems nice too). Both are much more easily applied and have a lighter scent. Be careful though because Toms also sells an "all natural" deodorant that contains aluminum.

SweetP, smart thinking on marking the bra strap line! I found a lace bra-lette style that has wide lace fabric straps (more like a tank top) that works for my port on the left & that closes in the back (margin revision on right last week is still sore). I also found camisole tops at Costco with a built in bra and soft straps/ draping fit that seem perfect to wear under a button up shirt or warmer jacket for chemo sessions (Im always cold, so I figure I'll be freezing between cold capping and icing hands/feet.

Paulette, I hope you feel better as the day goes on! Have you tried something cold like a popsicle or frozen fruit bar? Hugs to you ❤️

rdeesides

Have you guys seen that Kate Hudson shaved her head? There is another famous model that just shaved her head as well, so I'm hoping that this look comes in style right as I'm about to lose my hair. Lol. Actually, I pointed it out to my 9 year old daughter because I'm hoping it reassures her when I have no hair.

https://www.yahoo.com/celebrity/kate-hudson-posts-pic-her-180600181.html

VL22

Thanks Willow22 - it does suck, especially being TN and hearing all the horror stories about it. Some days I'm feeling mentally ok and then the next I imagine those aggressive cancer cells spreading through out my body. With that comes my imagined pains - is that my liver that is sore? It is a mental minefield!

I truly hope you don't have an infection and can get started. Did you ever think you'd see the day when you would be excited to have chemo?

Stay strong ladies! I really am impressed by our resilience, but more do by our compassion and support

PauletteK

I'm praying that we have more good days than bad days. This stomach ups and downs make several of us sick. Now I understand other ladies talked about how important to have a good night sleep

teaspoons

Hi - I haven't posted in a while. I started back to work part-time last week so been busy adjusting back to working. Luckily, I work from home and my boss has been super supportive. She told me to work as much or as little as I want for the next few months. It's been almost 4 weeks since my bmx, so I wanted to get caught up before my first round of chemo.

I had a bone scan yesterday. Afterwards, I thought I was good to go and then they made me come back in and take more pictures in my mid-section area. The technician was also acting different towards me, so I have a feeling she saw something bad on the scan. She wouldn't give me any more information, so back to the waiting game for me until I hear the results. I have a feeling it isn't going to be good.

I wanted to pass along a couple of things I've been checking out online that I saw in one of the other chemo forums. I can't remember which forum though. Anyway, there is a website www.breastcancerfreebies.com where you can order some free things like a headwrap, hats, Quesy Pops, etc. I ordered a few things, so I'll let you know if/when I receive them.

The other site I found was Sparkling Earth Products at www.sparklingearth.com They have very reasonably priced skull caps - the caps in the Clearance section are around $5.95 with some cute patterns like plaids and florals as well as solid colors.. There is a section of hair loss caps. At those low prices, I ordered a few. Will let you know how they fit when I receive them.

Anyway, thought I would pass along the finds to everyone. Hope everyone is having a good evening!

Cowgirl13

I had my first chemo on August 3, 2009. I was scared to death and thought I would blow up in the chemo chair...seriously! I had taxotere, carboplatin and herceptin. My first chemo was, as they say, uneventful. Just a few things I will share--drink lots of water, 8 glasses a day. If you do more it will deplete all your electrolytes. Do this every day. A word about nausea--take your pills Before you are nauseated. My oncologist told me that they do not like to treat nausea they like to prevent it.

Chemo was very doable for me and I loved the chemo nurses. I can't believe it was almost 8 years ago. Just remember, one day at a time and give yourself plenty of rest.

Wishing you all well on this journey and I know you can do it.

Liz

sweetp6217

My Chemo starts in about 6 or so hours and I'm wired on Dexamethasone. The nurses plan on me taking Zofran and Compazine but alternating them for each dose. Like Cowgirl13 says, they want to prevent, not treat nausea. I and three others are beginning treatment Thursday and Friday and our insurance won't cover Perjeta. Prior Authorizations that take at least 15 days really get to me. I got off of the phone today with insurance and hearing the words that a disposition still hasn't been made and I felt hopeless and hung up on them. I may not have enough tissues. Then, my nurse treatment coordinator called to say that a meeting was about to happen including several of her colleges. They can't get the manufacturer's coupon to work without insurance for Perjeta so they supposedly had a conference call with them to try to get it to work.

On the bright side, ACS will be giving me a call to set up an appointment to try on some wigs. Of course they have to promote all the other perks like feel good, look good. They suggested that since no one comes to the meetings and three in a row have been cancelled, I could still meet with one person, one on one. I don't do so well with one on ones in that sort of setting. Sounds like a lot of us are just staying home, unless they happen to live near a loving and connected community of sisters that make a point of reaching out to each other, outside of home.

Time to try to get some more rest. Thanks for your wonderful stories and ideas. We shall see.