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Anyone starting chemo August 2016?



  • WenchLori
    WenchLori Member Posts: 1,027

    djm71, my port really hurt too! But like yours, I was called a "fresh port gal". I'm not sure I liked that reference. I'm glad to hear all seems to be going smoothly for you. You are a lot braver than I was! I'm not watching! LOL {{{{djm71}}}

  • WenchLori
    WenchLori Member Posts: 1,027

    Sensi and AnnieTater, I'm sending you my best calming vibes I have to be with you tomorrow for your chemo.


  • MFalabella
    MFalabella Member Posts: 105

    Hi all,

    I know I have been quiet, but have a lot on my mind. I live a state away from my family (besides hubby and kids) and am trying to figure out how this all will work, I feel so alone with this. I will be meeting MO on Tuesday to finalize the details of my chemo, i.e, start date, port placement etc. I pray daily for all of you and hope that you are dealing well with the treatment and the stress of it. I love my medical team and cancer center, I just wish my family could be here to help. Gentle hugs to all


  • adawn24
    adawn24 Member Posts: 5

    Hi all,

    Hugs to everyone! What follows is a vent with a couple of embedded questions. Got my port placement today. Start chemo on Thursday. Found out last night that my insurance won't cover Nuelasta based on new guidelines that we're only at 10% risk of fever from low WBC count. Of course I freaked out and spent my entire morning in preop for the port on the phone with everyone.

    Come to find out that my MO knew this last week when he got the denial & did review with the company. When they told him the new guidelines, he acquiesced. Has anyone else's MO decided they didn't need Nuelasta because "other than the cancer, you're healthy"? He said that if the tests show low WBC after the first treatment, we'll have grounds to argue for the medicine.

    I don't think I really mind not getting the Neulesta. If the data doesn't support needing it, that's OK. I think I'm just really resenting that I found out about the treatment plan change via form letter two nights before chemo which caused me to stress out since I didn't know about new guidelines. He made it sound like this was essential during our appointment at the end of July. I've had enough surprises thank you!!!

  • Wenchlori, thanks for the info on the pickle juice; I'll pick up a new jar to take with me!  I'll also make notes on port care to share!

    My tumor is large enough to be painful.  I spent from 5 PM to midnight in the ER recently getting IV pain med, and came home with a prescription, so whatever happens after port insertion, I think I can handle. 

    MFallabella, I'm so glad you started this August group - thanks!  I am feeling a lot isolated, too.  I'm much older, and kids are grown, 2 live out of state.  My hubs works M-Th & Sat., so I'm alone all day. I live in an over 55 community, and I'm not very active outside my home.  Most people here are just too OLD to be fun company.  I am geeky & crafty, love to cook, and I swim like a fish.  I have 4 beautiful grandchildren that I adore, ages 2-13.

    At least I've gotten a lot of clothing prepped which helps me stay sane.  I cut several tees down the center front, added a woven fabric band on each cut edge, and mounted plastic snaps for closing it so I can have port-accessible shirts.  I live in Florida, and it is not all that easy to find button-front casual knit tops here.  I'll do the same to a sweatshirt for winter wear.  I was sent a dignity robe from someone who makes and donates them near Houston, Texas, and I will make a pattern from it so I can make some to donate.  They have Velcro down the center front and each side seam, so only one side needs to be opened for radiation. 

    I make fabric baskets like this one, and I'll have one in the car as my chemo bag, and one for other supplies needed for our chemo trips.  We live over 70 miles from the cancer center (one reason I'll be very resistant to doing daily radiation therapy - I'd have to drive myself, which will be hard since my husband still works and needs the car), so my hubs will drive me there on Fridays for chemo.  On another topic around here somewhere I read that diarrhea can be sudden, severe, and we need to have a change of clothing, towels, wet wipes, tissues, and lots of plastic bags with us.  Hubs says I'd better buy some Depends, too.  I will, because we do have a long commute. I insisted that we not take the turnpike, because the back roads have lots of retail, restaurants, and gas stations along the way where I can get cleaned up if necessary.  Can this get any more embarrassing?  I made a "Cookie Tossing Can" in case I get nauseated on the way home, but I will take the antiemetics before I leave.  I have plastic bags, and I'm lining a plastic coffee can with them, held in place by a rubber band.  I buy the Great Value Twist Tie bags anyway, for all the bread and rolls I bake.  They're a good fit.  I have several caps/hats ready, and I plan to make more for myself and for donation.  I took a millinery course in high school and have made hats for years, so that part's easy.  I have fabric sitting on the table, looking at me, waiting to be made into a quillow, (quilt-pillow) but that's the one thing I dread doing.  I don't like sewing large projects.  It would be perfect for travel; it folds into thirds and tucks into its own pocket, making a pillow.  My large basket/beach bag will hold it nicely, along with other comfort items and water.

    I see the MO this Friday for an hour, to discuss my regimen.  We WILL discuss Taxotere heavily, among the other drugs, and I will beg him to use another drug.  He has already said that all his patients on drugs that cause neuropathy sit with their hands and feet encased in ice bags, and that they don't get peripheral neuropathy.  I cannot afford the cold caps.  The FDA is now requiring the company to add the warning on the packaging about the possibility of permanent hair loss.   I imagine there will eventually be a class-action law suit; there are at least 15 law firms online trying to sign up clients.  At my age I feel I can afford to be a bit choosy about all this. I'm 73,  still have no need to color my naturally curly hair, and I don't intend to lose it permanently.  I can deal with a color change or texture, but having none is not my style!  I'm old - but I haven't quit breathing yet!  I will ask about when I can expect "hairfall", and my youngest son who lives nearby agreed to shave my head with his clippers before it happens.  I'm not sure how long it will take for me to look in a mirror.    My other subject with him will be a sleeping pill.  I only sleep a max of 4 hours, sometimes less until after about a week I'm so tired that I get through one night.  Perhaps I also need a little Valium on the side? 

    AnnieTater - I wish you all the best - what a load you have, girl!  Be strong!

    The GOOD part of all this is that we have a place to come to share the good, the bad, and the ugly.  I'm glad to be among friends!  Thanks, all, and HUGS!

  • AnnieTater
    AnnieTater Member Posts: 57

    Thanks for checking in, djm71. I am starting the same treatment on Thursday, so I am thinking a lot about you.

    Hi Lori! I recognized you, too. Thank you for all your updates! Baby is doing great. I'm in my 6th month.

    Michelle - I am sorry you are feeling so alone. Lots of hugs.

  • darab
    darab Member Posts: 894

    Just back from getting my neulasta injection, but next round I'm definitely doing the body pod! The nurse was so cute and asked what I knew about the drug. I told her and said that I had already taken my Claritin! She was so surprised but very pleased as she said she has had so many patients swear by it with neulasta, but many doctors still pooh-pooh it. I asked her if she know about the pickle juice and she hadn't heard of it... so I enlightened her!

    Still doing good, just can't keep from yawning this afternoon. No nausea, and just the hint of a headache.

    Hi Annie Tater, and djm, so glad you're half way through. I didn't have the red devil, but had a similar reaction when the nurse said, OK, here we go. I laughed and said, oh I take it back, I changed my mind! Lorie, hope your good luck continues.

    Scarysadday, I thought the same this morning when my DH asked how I felt, and I said "normal," I'm not sure that's a good thing... lol. I feel a little weird, like my eyes don't want to focus real clearly. Oh well, not bad at all.

    Karey, hope the leg cramps don't return. Take care everyone!

  • karey59
    karey59 Member Posts: 49

    update bad diarreah. Hopefully this is my last side effect after 5 days. Unwilling particiant we have the same chemo exept the perjeta, almost the ame diagnosis too. Also i live in florida! Amy tator you are an inspiration to me with all your taking on ( i feel like a wimp complaining. Take care everyone 💘

  • Scarysadday
    Scarysadday Member Posts: 27

    adawn, my insurance doesn't cover on neulasta, but does cover neupogen ( 7 shots vs. 1) is still pricey but cheaper than neulasta and works the same....perhaps that might be an alternative?

  • adawn24
    adawn24 Member Posts: 5

    Scarysadday, thanks for the reply! I'll ask at my next appointment. The insurance said that they require you to be at a 20% risk for the SE before they'll cover the drug and breast cancer patients are only a 10% risk. But maybe they're more flexible with the coverage if the cost is less.

    Best wishes to you!

  • fireheart438
    fireheart438 Member Posts: 85

    Finally checking in to see how all are doing. Was praying for all of you who started your treatments yesterday and today. Glad to hear from you all. Hooray for few SEs so far. Your stories encourage me.

    Yesterday I had a baseline echocardiogram and then went back to my first day of work since my BMX on 7/13. Some people thought I was crazy because it was less than 4 weeks post op and because it was my birthday. But there was no place else I wanted to be (since the beach is not an option right now). It felt wonderful to have a somewhat normal schedule and be busy focusing on things other than my diagnosis.

    Saw a nurse today for chemo counseling. I was really following what she was saying, but tonight I'm glad she gave me lots to read because it all feels like a blur. Decided that I won't re-hash all the "what to do" for SEs info. Planning to take that along to my first infusion and read then. Got a tour of the little infusion "room". TV, internet access, nice chair, desk... Was told that if I felt up to it I was welcome to tote my machine along and walk in the main hallway or visit a family room they have with puzzles and other amenities. Hoping I feel well enough to walk some because I am NOT good at sitting still for long.

    Have some bloodwork and see the MO tomorrow morning. Then one day without appointments and chemo begins Friday. Guess that means my low day may be Monday or Tuesday. Ugh! Wish you could pick your low day. I'd go with Sunday and sleep all day.

    The nurse today was not familiar with the pickle juice to use during flushing, but I'm going to have my little mini shots with me and be ready to go. Asked about the Neulasta, but they said they would not start me on that unless/until the determined that I definitely needed that. Anyone else told that?

    I'm going to be like you, Dara, and pack a trunk. I figure if I'd rather be over prepared the first time and learn from my mistakes.

  • darab
    darab Member Posts: 894

    UnwillingPa, those baskets are so beautiful! I love the colors and versatility of them! I love to sew and downloaded a couple of patterns like those for grocery bags, but never got them finished. I didn't realize that taxotere was the drug causing permanent hair loss until after I got it yesterday. I signed that I was aware that it causes hair loss, but the word permanent was no where. I read today that it's fairly rare, about 3% but I do intend to talk to my MO on Monday when I see him. I worry though that it's kind of like closing the barn door after the horses are out!

    Karey, so sorry to hear about the digestive issues! I know that is one o the SEs and hope it's short lived. So far, I just have a little queasiness and a mild headache. I double checked with insurance coverage with neulasta. For "fun" I googled the cost of the injection without insurance and all the sites said it was around $5,560 per shot! That's just outrageous. Hope all have a good evening.

  • fireheart438
    fireheart438 Member Posts: 85

    adawn24 - Just reread your post about the Neulasta. I wasn't told that the insurance was an issue, but was definitely told that I'd only get it if my blood counts warranted it. In many ways I'm glad that I am considered healthy besides this cancer and don't want to pump myself full of more things than I need, but I sure hope I don't need to fight the insurance company over this. May revisit this with the MO tomorrow.

  • djm71
    djm71 Member Posts: 16

    I finished my first treatment about 6 hrs. ago. So far, so good. DaraB, I'm like you with the slightly blurry vision and headache. Bad thing about the headache is that my zofran says "may cause headache" so I hope it doesn't get a lot worse. I just took a dose. They gave me compazine and zofran for nausea at home. Before chemo started, I got Benadryl, steroids and nausea meds in my IV then they started the adriamycin, followed by cytoxan. Start to finish took about 4 hours. I did get the neulasta pod. I had no idea that so many people would have so much trouble getting it! It's just not right. My nurse said they see this all the time with other drugs too. Insurance won't pay. Even with a cancer diagnoses. My insurance denied the PET scan my MO ordered. Said they would only pay if I did a CT scan first and something showed up, then I could get a PET scan. Crazy!

    So far, food and drink still tastes normal. I wonder if that will change soon? It did for my mom. Coffee was her favorite drink and it tasted so bitter to her that she could no longer drink it. I'm hoping I can sleep tonight, but I'm wondering if the steroids are going to keep me awake.

    AnnieTater, I'm wishing you the best of luck! Big hugs!

    Michelle, I'm so sorry you are feeling so alone. I can definitely relate to that. My hubby is gone most of the time and my kids are grown. I don't have any friends anymore because they all got tired of me being sick and cancelling plans so they stopped calling. It's ok though. I found this group and even though we are all just starting to get to know each other, I feel very supported and welcome! I love it here!

    Big hugs to everyone! Welcome to everyone that is new! Please continue to report as much as you can. I think we are all really benefitting from reading each other's experiences

  • Karey59, from what I've read, I think diarrhea is going to be our biggest SE.  I hope yours doesn't last too long!  Got Imodium?  I tend to have a testy digestive system as it is. 

    DaraB, those baskets are addictive.  I can't stop making them.  They are easy and so fun!  We hope to buy a new camping trailer and go permanent full time RVing after this is over, and I plan to make themed ones for storage in it because they are so light weight.  I wish we had it now; I wouldn't have to commute, but could just park it in Orlando.

    I've decided I'm very fortunate to be on Medicare and have a supplement, and with both, everything is covered, I believe, but Medicare didn't elaborate on their website.  No co-pays, no deductibles on my plans.  My only concern is hitting the donut hole with my prescription drugs (chemo meds are 100% covered).  I'm not sure the extra drugs will be included with the chemo meds, but at least I will start this year and finish next year, which gives me a whole new drug period.  Before all this started, I only took one inexpensive prescription, so I have never gotten to the donut hole. 

    I did some more homework on the chemo meds today.  Instead of looking at the usual drug description sites, I looked up "adverse effects" instead; that's different from the usual SEs.  I discovered why we get steroids - it is to prevent really bad adverse effects like anaphylactic shock, which can happen when you're allergic to one or more of the drugs.  I've been in anaphylaxis three times for 2 wasp stings and 37 fire ant stings at one time.  I won't skimp on the Decadron, and my MO has listed my dosage at almost maximum.  Gulp......  We went to Lowe's tonight to buy a long-lasting wasp killer, as they are coming after me like gangbusters lately the second I open my front door.   

    I had an eye exam by an ophthalmologist Friday.  I have been on glaucoma watch for the last 7 years, and it finally happened in one eye, so I have another one, just an eye drop, on my "regular list.  25% of one optic nerve died, even though it has only been 4 months since my last checkup.  I have an exam with an ENT on Monday.  I have a very sore lesion inside my nose  that has been bleeding for a couple of months.  Not a good sign.  Cancers do happen there; my dad had one, had it removed and a graft placed over the wound.  Just by breathing in those cancer cells, it spread to his lungs, and he died from what was a skin cancer.  I hear hoof beats, but trying to think horses, not zebras.  I hope they got they far up when I had my PET scan, but I'll have them take another look on Friday. 

    We seniors have a much higher risk of having shingles under the best of circumstances.  I sent an email to my nurse navigator to ask her if I can get the vaccine before we begin.  I think they'll say no.  Wish I'd thought of it sooner - it is expensive, and you never know if Medicare will OK it until you order it. 

    I'm having a problem with my settings - it repeated at the bottom, got some wrong, and I can't seem to fix it.  Will try again.

  • djm71
    djm71 Member Posts: 16

    Karey59, SO sorry about the bad SE's!! I hope it doesn't last long!

  • adawn24
    adawn24 Member Posts: 5

    fireheart438 I agree that being "healthy other than, you know, the cancer" as the nurse doing my IV today said is a good place to be. I am concerned that as a public school teacher who plans to continue working as I am able and primary caregiver to my kindergarten age son, I'm going to be exposed to a lot of stuff. My MO was OK with me working when he thought I was getting the Neulasta. I hope that's still his tune at our next appointment. I'd be interested to hear if your plan is also insurance driven.

    djm What I think is so strange is the disparity in what they allow/deny. It seems so random. My insurance co didn't bat an eye at my MO ordering a PET without a CT. But the Neulasta is their line in the sand? No rhyme or reason. I hope your headache is better or at least not worse.

    Unwilling Participant I'm sorry to hear about your optic nerve damage. Best wishes for a good ENT visit on Monday.

  • sensitivehrt
    sensitivehrt Member Posts: 310

    Thanks Wenchie- I think I'm ready for tomorrow.....about as ready as I can be.  Had my last day of work for the next 3 months today.  I'm going to miss my residents. Doc doesn't want me to chance catching something with the immune system down.

    I won't be getting neulasta pod or injection. According to MO, with my age and otherwise being "healthy", I won't need it.

    Good luck to everyone else starting this week.

  • WenchLori
    WenchLori Member Posts: 1,027

    Hmmmm, makes me wonder why I need to have nuelasta? All my docs say I'm pretty healthy except for the cancer. I don't like being special.

    My eyes have changed a bit also. I had blurry vision and needed stronger glasses the first few days after infusion. Today I had to go back to an older weaker pair of glasses to get any reading done without starting a headache. If I can get thru all this BC stuff and end up with better vision I could handle that. I have an eye appointment on the 22nd so hoping for a good report.

    I've had appointment after appointment the past few months, so today I rescheduled ALL of my appointments for the rest of this week! I need some me time. I've been using my hubbies van the past 4 weeks, so when I told him he could have it back he was very happy... Until he realized I changed all my appointments. I can't wait to get behind the wheel of my big Ram truck again! I've missed my baby!

    Sleep should be coming soon... I hope!

  • fireheart438
    fireheart438 Member Posts: 85

    Well, adawn24 & sensitivehrt, maybe we should start a NOlasta group. Winking I truly hope it's the right option for all of us. I'm sure the doctor would remind me that everyone's health, cancer, etc. is different and that things are custom done for each of us. Can't help but wonder sometimes, though.

    adawn24 - I work in a public school setting and my MO has said it's okay to work too. My job is in our tech dept and I get into all of our buildings. My biggest concern is in our elementary schools where everyone is a walking collection of germs. I am going to keep a stash of gloves, masks, hand sanitizer, and Lysol wipes with me at all times. Also thinking that I may shave my head before the school year begins so I can start off wearing my hats and scarves when the kids come back...make it less of an will just be the way it is. Noticing you and I had our surgeries around the same time as well. Good to find a twin on here to exchange stories!

    WenchLori - Glad you can have some time for yourself. Hoping you can fill most of it with things you enjoy and very little thought of BC.

    UnwillingParticipant - I LOVE your attitude. You seem to be staying on top of things and so determined. I'm also awed by your creativity. I don't have a "crafty" bone in my body. Wonder if they could infuse some of that?

    At my chemo counseling yesterday the nurse said I needed to avoid raw meat & buffets. Since chemo starts on Friday, I told hubby I want to go out for a huge medium rare steak tonight and hit a buffet line for my "last supper." Guess I'm making it obvious that I just don't like to be told what I can and can't do.

  • Melpub
    Melpub Member Posts: 7

    Introducing myself, with questions: I have Estrogen-positive, stage 1b breast cancer with a small but aggressive grade 3 tumor (about 6 mm). My medical team decided on chemotherapy first, so I've had four cycles of epirubicin plus cyclophosphamide, followed by Neulasta, Emend, etc, after each cycle. I've gotten weaker and of course am practically bald; no energy to go to ballet class, walking up the hill by our house seems tiring too, am faintly nauseous but eat and I sleep--too much. Paclitaxel chemo will follow at weekly intervals, 12 cycles. Then the lumpectomy. Then the radiation.

    This seems straightforward EXCEPT that the lump I found on the side of my breast (my doctor found another under my armpit and there's a small one in the breast found via needle biopsy and marked) seems to me the same size, if not larger, after the first four rounds of chem. I arranged to have the tumor measured via ultrasound, but the one to which the radiologist had affixed a radioactive marker is apparently shrinking, and they seem to think they'll just be slicing the other lumps out anyway, no big deal.

    Has anyone else had experience with this situation? Specifically, with lumps like this, also with the kind of chemo I am having? Many thanks in advance.

  • fireheart43, thanks, but I'm not really feeling so brave!  I've learned that it is impossible to think of two different things at once, so if I keep busy sewing, I can't obsess about everything I'm scared of.  If I could turn off thoughts when I go to bed it would be heavenly.  I slept a whole one hour last night.  Sometimes I can fall asleep fast, but I wake up 2 hours later, and stay up for 4 or 5 hours, then nap a little.  Sometimes I just can't fall asleep at all.  I will address that issue on Friday with MO. I wanted to do a lot of sewing today, but that lack of sleep has me looking/feeling like a zombie.  When I do sleep, I dream about chemo that hasn't even happened yet, and it is disturbing. 

    I have a tip for those of us who experience severe diarrhea.  (I know, it's unpleasant to discuss)  TP will make us sore in a hurry, so I decided to make a "redneck bidet".  I got out a plastic squeeze bottle (kitchen tools aisle, WalMart), filled it with water, and will use that directed to the right place.  It works!  I bought a large jar of Aquaphore ointment for rads later, but have been using it on my very dry Florida flip flop feet, and will never go without it again!  I use body lotion first, followed by the Aquaphore.  It will also be a soothing moisture barrier for a sore bum.  image

    For the other extreme there's always this:  image LOL!

    May all our SEs be mild, and our minds filled with determination to get us all where we need to go. 

  • darab
    darab Member Posts: 894

    Morning, I'm starting day 3 and will be curious to see if today and tomorrow are a little harder. Not bad so far, didn't sleep well last night again, but I'm now done with the post-infusion steroid. Headache has remained but not gotten any worse. Tastebuds still ok, and queasiness very mild. Several have said hair loss comes around day 17, so I have a little time. Moondust on another thread said the scalp tingles and then gets sensitive right before so you have an idea when it's going to happen.

    I am quite healthy also, and my MO gave me the option of having the neulasta or not, but warned that if you get even a hint of fever or illness I'd need to come in immediately and they'd put me in the hospital for a day or so to control while counts. With 5 grandkids and the new school year starting, plus, I'm not the type to stay home, I opted for the shot. The nurse yesterday said it helps repair the bone marrow and replace white blood cells.

    Welcome Melpub, sorry you are in here with us, but very glad you have joined us for support. I'm afraid I'm not much help as I went straight to lumpectomy, but then had to wait around for Oncotype and Prosigna test to come back for my plan. My sister did chemo first prior to mastectomy, and it is usually don't to minimize or shrink tumors which it seems one of yours did. You don't list your dx or treatment plan in the signature lines so not sure if you will do mx or lx. Good luck and keep us posted.

    I'm hoping all continue to have manageable SEs, and those starting the end of the week have similar experiences. I'm scheduled to take a jewelry making class at our art museum on Saturday and then go to a Vintage Alley sale after that so hope energy et al are good by then. I hear staying super busy, and active helps ward off the SEs even if we think we're too tired. Will ck in again later. Hugs to everyone... Dara

  • karey59
    karey59 Member Posts: 49

    hi everyone. This is my 6th day and finally feel normal but have to go back again on fri for herceptin. My niece is 25 and was diagnosed with hodkins lymphoma last year. She is a third grade public school teacher and her MO said absolutely not to her working, especially during flu season. I spoke with chemo nurse about my working (im in an occupation where i cut myself all the time) and she said she wouldn't do it but i sould talk to dr. She also said no gardening and to be very care ful aboutcutting yourself. I never thought about that. Did amyone else here this? She has 30 yrs experience as a ocology nurse.

  • Willow77
    Willow77 Member Posts: 3

    Hi everyone!

    I am new to the site and stumbled upon this blog last night (or should I say early this morning - 2am).

    I had my lumpectomy in June but decided to hold off chemo for as long as I could so I could spend time with my daughters and enjoy the summer with them. I start Chemo on the 24th. They have me doing 4 rounds of TC.

    I made the decision to move forward with Chemo because my Onco score was 29 and I had trace cells in my lymph nodes. The thought of the cancer possibly coming back and cutting my life short scared me so I felt confident in that desicsion. Up until now. I decided last night that I better do some more research on this particular type of Chemo and see if I could find some personal experiences to be better prepared. Now I am terrified!

    Nails falling off, permanent hair loss, permanent nerve pain!

    Part of me wants to call the whole thing off… I mean I feel great right now. There is a chance the cancer may never come back on its own… But what if it does? What if it comes back bigger, badder? What if it kills me? Would I look back and think I would gladly give up my hair, my nails? Of course I would. To see my girls grow up…

    God, I meant to just come on and introduce myself, now here I am rambling away…

    Anyway, I'm glad I found this blog! I hope we can take comfort in one another as we all start this journey.

    DaraB, looks like our situation is similar. I am interested in why you are going with TC and not AC, which seems more popular? I have a heart condition so my doc said the TC was easier on the heart. Anyone else doing TC over AC?

  • darab
    darab Member Posts: 894

    Hi Willow, and welcome to the club nobody wants to be in! My MO recommended the TC regimen.\; I think it seems to have some correlation to a woman's age. You are younger with small children. I just turned 65. I thought from the very beginning that I would just go straight to rads and bypass chemo. I was shocked a week ago when my Prosigna test came back high risk for recurrence. My nodes were all clear, my margins with surgery were clear, and my oncotype was 20. My MO explained that there is a trend away from Staging of cancer and looking harder at the grade. There can be tiny microscopic cells elsewhere in the body and if the grade of tumor cells are higher (mine were grade 2 and 3,) they really recommend chemo. My original tumor was only 1.5 cm, but my MO said it used to be anything over 1 cm got chemo. Now they have better testing available so they can really drill down and get to the actual genomes of the cells, and then mix the "cocktail" specific to the cancer. Many people I'm online with have done the TC and all have had hair come back and not horrific SEs.

    Don't let the scary stories or fear paralyze you. I've had so many many friends and relatives of all ages with bc and there are huge success stories everywhere. I took the approach that I would do whatever I need to do to make it, and even should it come back in the future, the goal is to be around when the new breakthroughs in treatments exist. So far, chemo is not that bad. I know I've only had one infusion, and I know my hair will fall out, but I'm keeping my eye on the end line. Are your girls still young? I have 5 grandkids and I just adore them. My 9 year old grandson came in yesterday and looked at me and said, "Hi Grandma, so how was chemo?" I laughed and said "Just peachy!" Kids are resilient and they certainly can be a huge help! My sister had stage 4 bc and never lost a nail! 1 or 2 got a little bruised looking, but it's so important to remember that EVERYONE is different, and just because someone experiences something, doesn't mean you will. These sites and women have really gotten my through this whole thing. the threads allow us to ask questions, vent, and feel so supported. I have the best family in the the world, but it's nice to talk about this with ought having them feel overwhelmed. Hang in and come back here often. Whatever you decide, people keep telling me to just embrace the decision and don't second guess or look back. Big hugs going back to you.

  • kechla
    kechla Member Posts: 181

    Willow, I am starting the day after you and also doing TC. I am going to cold cap to try to ward off the risk of permanent hair loss. I know the risk is relatively low and everyone I have spoken to who has had it had their hair come back fine. I also am going to ice my hands and feet to try to keep the neuropathy away. My RO nurse just finished TC and had lost her nails, but she said they grow back. Hers were beautiful. So was her hair. From the people I've spoken to the TC regiment is gentler than some and many get through it with minimal side effects.

    For what it is worth, I think you have made a good decision to go with the treatment.

    Stay positive. We can all lean on each other here for support!

  • darab
    darab Member Posts: 894

    Karey, I did hear about being careful with cutting. A couple of people said to wear gloves when gardening or even doing dishes. I had a choice with the injection, but just figured it was safer, especially since I'm active and don't want to feel housebound. I was a teacher and administrator for 25 years and know the rounds of colds. etc. everyone shares at the beginning of the year! Be careful and just keep the hand sanitizer handy!

    BTW, Amazon sells small cans of pickle juice if you find it works for you. I had brought a little bottle with me but it leaked all over! Yuck.

  • Willow, I am going to be on TC, plus Herceptin and Perjeta.  I get all the details on Friday. 

    Hey, ya'll - when exactly do you drink the pickle juice?  While you are getting the infusion, before, after?  How much is effective?  Can I eat the pickles too?  I'm much more fond of sweet pickles.  I may try that on for size one day at least. Hubs and I will need to pack a lunch to take with us, too, I think.  I don't know yet what time of day I'll be getting my treatment. 

    I did some research about nasal cavity cancers, and learned that TC is also the regimen of choice for that as well as BC.  My nurse nav is going to coordinate efforts and see if she can get someone to see me on Friday.  I need a biopsy.  Worst case, I'll have it done here and have that doc refer me to whoever nurse nav gets for me in Orlando.  My local cardio doc's office did my echo so I wouldn't have to make the trip down there just for that. 

    Has anyone here been put on B6 to help prevent the peripheral neuropathy?  It is on my list from my MO, plus I will be icing hands and feet during infusions.  MO says his patients just don't have a problem with PN when they do that.  I will take a large cooler with me; thankfully, it is on wheels!  I will be dragging a lot of stuff in with me, but I'll have my big teddy bear Hubs to help.  I definitely think the chemo room should be on a palm tree lined patio, where there are lounge chairs and waiters to bring us tempting morsels of chocolate and iced drinks. 

    Some of you have said you have pain when your port/line is stuck with the needle.  My MO prescribed Emla cream, which is a prescription local anesthetic that is VERY powerful.  They do surgical procedures after you've had it on your skin for the required length of time.  I wonder if I'll use it instead of injections for my port insertion.  The longer you have it on our skin, the more powerful the effect, and it can last for many hours.  Numb is good.  If I had it now I'd stick some up my nose!

    No sleep last night - no sewing today.  Must get on it tomorrow.  I'll need that quillow.

  • darab
    darab Member Posts: 894

    As I understand it, but Lori can confirm, you sip the juice while the nurse is flushing the port after each drug is infused. I took sett pickle justice with me, but wound up not needing it since I'm not using a port. They're just using a straight IVand so far so good. One of the infusion labs at my center is just outside a Starbuck's and I see people just drag their bags and stand into the Starbucks and visit there. I just had to keep wheeling into the restroom as I was really pushing fluids!