Starting Chemo July 2019
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Sorry I’ve been in lurker-mode the last 10 days. Apologies for not welcoming our new groupies - so, “hi there and welcome”! This post is a lot about questions and also providing a little TMI, so here goes.
Last week I got my second Herceptin and 4th Taxol. No Perjeta because MO worried about hematocrit after spastic colitis attack. She still hasn’t approved it going forward - grrrr! Anyway, I tried to do too much and ended up dragging myself from the bed upstairs to the couch downstairs a couple of times this weekend and not much else. I’m still having diarrhea but I thought one Imodium a day would keep it under control - NOT. So I end up with bloody diarrhea (yes, TMI), but now my MO and GI specialist are in cahoots to give me both an endoscopy and colonoscopy next week on the same day - THE DAY AFTER MY TAXOL! They want to check I’m not bleeding somewhere. I think their both nuts! Okay rant over, on to the questions...
Has anyone had only a biopsy yet, but not your final surgery? If so, do you have these weird sharp aches in localized areas in the biopsied breast? They seem to be random for me, but it’s left these odd sore spots in it’s wake.
Is anyone going bareheaded (inside or out)? How do you feel about it? Does a hat/cap/wig only get put on in public? I can’t quite get used to a hat indoors yet, and I don’t want to get a wig, but boy am I self-conscious outside! I’m not working, only volunteering in a non-public place, so it’s only my co-workers that would see me and they know already.
I’m doing the guilt trip thing too. My husband and I always split the chores, but now he has to do most of them including food because I don’t have any appetite. He’s basically taking on the whole kit and caboodle. Poor guy... has anyone else had both their sense of taste and appetite disappear?
I keep getting overwhelmed by all the decisions that need to be made, or at least thought about once I’m done with neoadjuvant chemo. My SEs aren’t so bad that I’m expending a lot of energy on them, so my combination of drugs seems to me milder than most other folks. However, from recent emails, it sounds like I’m not the only one getting overwhelmed. What gets to you the most?
I meet the plastic surgeon for the first time next week (male). Did those of you that have had, or plan to have reconstruction did you know what you wanted to do going in, or did the plastic surgeon help you just a technique or pressure you into a particular choice?
We have five four-footed children (3 cats, 2 dogs, no 2-footed) and while my husband has had to take on cleaning the cat litter, I still pick up and pet my cats, get licked by the dogs and play tug with their chew toys. Because it’s such a normal behavior, I have a hard time remembering to be super sanitary about it. Did anyone’s MO, suggest draconian measures with regard to pets?
Anyone having eyeglass prescription issues? Right now anything between 2 and 10 feet is in focus, nothing else.
Jjpope1 - I’ve had migraines since 14 and for the past ten years, I was getting them 3-4 times a week! I've tried literally every treatment available as each one gained acceptance. Please PM me at any time if you want to talk.
Okay, now I think I’ve made up for more than 10 days! 😏
“May the road rise to meet you, May the wind be always at your back” (Irish Proverb)
Diane
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dvhmouse great read and understand it all! I still haven’t done reconstruction yet. I have been to 3 plastic surgeons and meet with a 4 on the 14th. I’ve always leaned to the DIEP flap. One it’s my own tissue, and two it sucks all my fat and insurance will pay. BUT as of right now and all that I’m doing I sometimes say I don’t give a crap about doing any reconstruction 😂😂 but I want to get it done before Dec so insurance will pay. The one thing my husband has spoken up on is that he thinks I should wait a while to do that so my head and body are fresh and recharged. But I still want to do it because of the money part.
Hair convo...... yes I am mostly bald headed and I wear hats. I said from day one I wasn’t putting on a wig, scarf or any other covers there is. That’s not me and I feel people would look at you more with those things waving saying here look at me. Remind you I live in a small everybody wants to know you’re freaking business community so I stay in ALOT! not that I’m embarrassed or ashamed but I haven’t told a lot of people and I definitely laying low. So I get your thought on that!!
My migraines also have had them my entire life. I’ve actually have done good with them in the last 2-3 years. I know it’s the chemo triggering them because it starts on Wednesday's and it’s on and popping from there.
Blood in your stool um YES get it checked! Sucks big time that it’s happening during treatment but you need to figure it out and fast.
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Three days after second AC and I lost a lot of hair in the shower. I've decided to wear lightweight silky pre-tied scarves for warm weather and cotton caps for colder weather. 0 -
I have been lurking too. Was a rough week with lots of fatigue. I want everyone to know I read all the message and appreciate the support. ❤️
I am going through my cancer journey alone. I'm single with two rambunctious kitties (they're almost a year old). The only changes I made were concerning cleaning the litter box (mask and rubber gloves) and immediately treating any scratches to avoid infection (clean, antiseptic, antibiotic cream). Mind you, my two are semi feral so they don't spend time on me persay. One does give me love nips though, so I make sure to check if she broke skin.
I got frustrated with my head yesterday and attacked it with a razor. Not the smartest move, given that I am at my lowest neutrophils right now - risky behaviour. I love the smoothness though. It's definitely cooler. I didn't think those 2 mm hairs provided warmth, but they sure did. I go out with a hat, but wear my bald head proudly in public. Too damn hot to always have something on your head. Kids are curious (can I touch?) but for the most part I haven't noticed anyone overtly staring. Besides, any issues they have with my bald head is THEIR problem.
I too have been thinking about my surgery options. I meet the breast surgeon on the 16. I know I don't want implants. I also know I don't want multiple surgeries. Given that I need a double mastectomy and oophorectomy, I am seriously considering going flat. Just not sure if I can mentally handle it.
I'm currently suffering from a small rash on my arm near the IV site. It is not responding to antibiotics. I suspect it is chemo related. It's ITCHY. Other than that, I seem to have turned the corner on my hellish week. I'm still battling the demons in my head. Hard not to get caught up at times.
Sending big hugs to everyone. We got this.
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Quick update. Getting my third AC chemo infusion right now and one final AC infusion two weeks from now. Then it'll be 12 weeks of weekly Taxol, and then 6 weeks of daily radiation.
So far I'm holding up pretty well. RBCs were a little low in last bloodwork, but no fatigue yet. I have nausea and generally don't feel quite right for 5 days after the AC infusion. I get plenty of good days outside of that though, and I'm making the most of the time w my family and friends.
Hair situation is basically Sinead O'Connor w mange still. I have a full strip of bald onthe back of my head and patchy bald/stubble on the sides. I went full bald yesterday at Dorney Park (rollercoaster theme park) on the rides. Did NOT want my bandana flying off mid ride. Generally walking around w an IDGAF attitude. Parking attendant at Dorney tried to direct me to park my car and I just parked under the shady tree I wanted to park under. She's like "ma'am you have to park in the line." I'm like "you're really gonna give the lady w cancer a hard time?" And I walked away. Rawr! Okay ... meow!
Lots of love to you all, and thanks for all your continuing support and care. We’re all in this together and better days are ahead.
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Oh, and Earth Wind and Fire was phenomenal!!! Three remaining original members, and the leader singer, Philip Bailey I think, has a gift of a voice! He has range that would put Mariah Carey to shame, and the man’s knocking 70. He was a total entertainer and knew how to work the crowd. Go see them if you ever get the chance. Gigi wig was great, I’ll maybe switch my profile pic to Gigi when I get home so you can see her in her glory. Wearing a wig in PA in the summer heat is a sweaty business though. Will save her for air conditioned events or winter nights out maybe.
Natasha
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Thank you to jjpope1, Natasha, Sheree and Melmax for responding to my post! My MO has decided to postpone my Monday Taxol and give me just IV fluids that day in prep for the endoscopy and colonoscopy. I'm still really not looking forward to having them both on the same day, but at least then I should get a 10 year reprieve on both.
I indulged a little and bought my self a really nice straw sun hat for going outside and hopefully going to a wedding in Hawaii in November, otherwise it's a cap or nothing. It's too hot for a wig and my port is so bloody obvious that it makes no difference. You can see the catheter all the way from my port, across my collar bone and up my neck. Every time I get a treatment, the whole thing bruises from top to bottom.
As for surgery, like several of you, I absolutely don't want implants so I'm going with some form of flap. I'm quite small-breasted to begin with, so I hope they find appropriate material at least somewhere else. 😉
For some reason the fatigue has set in big time this week, and the thought of spending a couple hours cooking and cleaning holds absolutely no appeal.
Sheree - I hope you've turned a corner and start to feel better soon!
Natasha - sounds like your concert was a rousing success!
To everyone in the group, thank you for your support and for giving us all a safe place to rant, while being uplifted at the same time. Keep moving forward one step at a time.
Oh, BTW, I figured out why I have a weird itchy rash on hands and arms - poison ivy, wouldn't you know! It was on some old dog toys we dug out and were using as retrieval toys. What an idiot! 🙄
Diane
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britgirls hope your third treatment went ok
I'm at hair salon getting my hair cut. It keep falling out at work 😁 and every time the wind blows.
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Hi Everyone,
I completed round 2 of AC yesterday. The past 2 weeks have been hard on me with the nausea, vomiting, constipation & the pain of the blood clot last week, but I am hanging in there. I have only been able to work for 4 hours. I am thinking of taking a leave of absence. I almost think it will be good to work but it's stressful with an over hour commute there and back and also the pressures of performing & meeting deadlines seem so daunting.
How many of you are still working though treatment?
My sleep schedule is all sorts of messed up too.
I am on day 15 & a few strands of hair are starting to fall out. We will be having a shave party soon! My daughter & husband are also going to shave their heads too. I have about 50 scarves, beanies, pre-tied scarves, & 2 wigs which I haven't named yet. I imagine the wigs will be hot so I will do the scarves more than likely. My daughter showed me how to tie them and it's super easy. Tons & Tons of youtube videos.
I went to see a therapist for the very first time to help with anxiety. It was a good 1st visit. My homework is mediating 10 minutes a day & yoga...even if it's just chair yoga. Plus I have been pushing myself to take a walk either the community lake or on the treadmill. Last week I was a hot mess crying almost every single day. I am not usually like that. Pretty sure my hormones were messing with me because I also got the gift of aunt flo Monday & she seems angry! I had been on birth control pills to until I was diagnosed which really made my periods so much better to manage. I have PCOS.
There have been so many updates since I last updated that's kinda hard to respond to everyone. I wish you all the best & may your SEs be minimal! Welcome to all the new peeps on here!
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starr42
Our bodies are definitely going through the wringer and you're one tough cookie having to go off birth control and dealing with PCOS on top of chemo. I work full time out of necessity and it's rough. If taking a leave from work is an option I say do it. Whatever you need to stay strong - do it! You completed round 2 - you’ve got this!Sending love and hugs. 💕
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Thanks for the encouragement Melmax!
Love & hugs to you as well!
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Everyone at work wore hats today in honor of my first hat day 😭😭😭 Great group of people I work with.
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Hi All, I hope everyone is having a pretty good day.
Melmax your coworkers are awesome
Starr= big hugs you have had a rough couple weeks. I am working like this, I worked Monday and Tuesday then I had A/C 2 on Wed so now I'm Wed, Thurs Fri , then the weekend then off Monday Tuesday then back at work Wed Thurs Friday. So I"m on a 3 days on 2 days on weeks until I finish A/C then I'll switch to Taxol and work Monday Tues Wed each week. My job is a very easy desk job I'm a secretary, so not lots physical activity and basically doing the same tasks over and over. I like the normal routine of it all, my only stress at this point is I am going to have to wear a wig when I go back next week and it will be weird and awkward for me for the first day. :-)
Diane: having to have invasive tests during chemo treatments BLOWS. I hope you get good results and that your poison ivy is gone! Also for some of your questions. 1. I am the front desk at a CPA firm I have to wear a wig at work plus I work downtown and being bald on the metra would draw more attention I don't want to me. Since I am currently wig focused I peep a fair amount of women sporting wigs these days :-) At home I plan to wear hats I have some nice soft little slouchy hats like the kids wear. LOL After my biopsy I did have random aches and pains. The kind that made my brain go, OMG is the cancer growing because that's how my brain works. I met with a plastic surgeon out of Rush Hospital , he took one look at my post having kids stomach pouch and said I was an excellent candidate to have that flap surgery. I totally agree that I did have all the necessary fat ready to go--but I decided I wanted to go flat. He respected my decision. He didn't seem to push one type of reconstruction over another, I asked him to explain each one. I would say if you feel any pressure from the surgeon, find another.
Natasha , gigi is gorgeous!
Fairydragon, I decided to go flat, if you want to talk about that or anything at all message me anytime.
Day 3 after A/C 2 and like last time, I'm certain that all my lymph nodes are swollen. It happened last time too, day 3 my neck is super sore, the back of my head, under my arms. And it lasts for about 24 hours. Anyone else have this SE? Yesterday I had a busy day for day 2. I need to stop accidentally winding up with busy next day. First I had a wig appt w/the ACS got a super fun wig for free. She's Betty , she's for nights and weekends, she's so fun I could see myself throwing her on a year from now when I have my own hair again. Veronica is my sophisticated work day wig. She looks like I went and splurged and got a really expensive cut and color with amazing highlights. Then I had my follow up surgery appt.- got the all clear no restrictions don't need to come back for 6 months. THEN I had to get my Neulesta shot. And with that I wound up needing to give a urine sample - because my temp was 99.4 and I have been having like urgency to pee and it feels irritated when I pee. The same thing happened during AC 1 but not as noticeable? So now I'm still waiting on the results of that. -
I don't think I ever realized how many strands of hair I had until they started falling out. I'm shedding like a mangy poodle! My friend is going to come over tomorrow and cut my hair real short so I can be less annoyed. Tomorrow is also my birthday and yes it really blows, but it is what it is
Happy Friday all!
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same to you guys going to start chemo in August good luck to all of u
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ohhh my husband doing the same thing he’s out partying with his friends and i am home alone i feel I am fighting this alone he’s being mean today complaining about why I didn’t clean the house and i am using cancer to get away from my responsibilities i told him when my mom comes here iam going to rent an apartment and leave him bec the last thing i want it now is more stress and drama
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I hope all of you are doing well. I have had my first 2 chemotherapy treatments in July. Cytoxan and Taxotere
I've lost my hair. My eyebrows and eyelashes are very thin now as well. I have a collection of hats and scarfs. I haven't looked into wigs, yet.
Right now, my chief complaint is itchy scalp and a rash on my head. Any advice??
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2019whatayear Could your soreness have anything to do with Neulasta? Did your Oncologist prescribe Claritin for Neulasta pain?
Arwa89 so sorry you’re having issues with your husband. BC effects the whole family. I’m praying it gets better for you.
Lisanicole you’re past chemo #2! Congrats on that. 💪🏻 I haven’t lost all of my hair yet but I bought Baby shampoo/wash for when I start seeing my scalp. Aveeno has a baby wash that may be good for itching. Check with your oncologist or general practitioner about the rash. You may need an antibiotic cream.
Today I’m dealing with tongue, roof of my mouth, and throat feeling raw and sore so I’m starting my “magic mouth wash” prescription right away. I’ll give it a couple days, and If it doesn’t help or I get a fever I’m calling the oncologist.
Hoping all of you experience som joy in your lives this Sunday morning and have a relaxing day. 😊💕
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Melmax , yea I don't know? I do take claritin and it's def. not bone pain it's literally swollen lymph nodes I can feel them and they hurt it could be Neulsta related based on the timing that it happens on the 3rd day after A/C which is the day after I get the shot or it could just be the A or the C - in any case it goes away in about 36 hours. Weird!
I use the biotene gentle mouth rinse religiously. I hope it keeps the mouth soreness away. I like to eat, when I can LOL
Lisa nicole- What is the rash like? It is itchy, scaly or hives?
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2019whatayear 🙏💕 36 hrs is a long time to deal with lymph node pain on top of everything else. I hope they figure it out and soon.
Here are the Tips chemo nurse gave me regarding Oral Health and keeping mouth sores away. Might help others.
Drink plenty of water. Brush with an extra soft tooth brush after every meal or 3X day. Use an alcohol free mouth wash.Keep my mouth moist.
I bought a package of children's extra soft toothbrushes and use a new one after each chemo treatment which is every two weeks.
Continue using my regular Sensydine toothpaste.
Biotene mouthwash, ACT dry mouth lozenges, and sugar free gum. Variations of chapstick for lips.
Got a prescription for magic mouth wash.
I've had a raw mouth just like this before and my dentist said it was due to lack of certain vitamins and minerals. I'm going to ask the oncologist if I can start taking a multi vitamin again or what type of electrolytes drink to get. I can't find one in the stores around herewithout sugar or sugar substitutes. 😐
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Melmax thanks the soreness is pretty manageable with Tylenol - just 2 more A/C treatments to go and then on to the Taxol! My MO is find w/multivitatmins or supplements as long at its legit like B vitamins or such and not something your aunt Betty started selling on FB. LOL
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Hi Everyone! I finally joined the mangy Sinead O'Connor club with y'all! My hair started drastically falling day the after my 2nd AC. We had a shave party yesterday that was really a blast! My daughter & husband both shaved their heads in solidarity.
My BFF is a hairdresser so she came shave our heads & we played around with it. We all got mohawks. We also played around with makeup! I was so happy to shave it because it was making a huge mess. The 2nd AC went smoother so-to-speak (ha!) than the 1st one. Only a little bit of nausea & vomitting & NO CONSTIPATION! Prunes & Smooth Move Tea is what worked this go around. I ate from scratch veggie soup too. Of course plenty of water! I had to gag the prunes down but they really work.
I am also happy to report that I worked 8 hours from home on Friday & I am planning on going into the office all week
I was feeling defeated before with the blood clot & not being able to drive etc. All is well now. I refuse to brag because I don't want to jinx anything. I have decided to not let this disease take over my life & LIVE. I might be slow & tired but I can do it. Today I went to a pool party. In 2 weeks my daughter & I are going to Virginia Beach for the weekend for our birthdays. We do this every year. My husband won't be coming because he's not a fan of the sun or large crowds of people. He's more of a woodsy guy than a beach bum like us girls.Melmax: Your coworkers rock! That made me smile so hard when I read what they did for you!
2019whatayear: Thank you for sharing your schedule with me! Because of what you shared with me, I changed the day of my treatment to Thursdays come the 1st week of September. So from there on out so I'll be recovering over the weekend. Great idea! Also thank you for the support!
dvhmouse: Poison Ivy on top everything else? That stinks! My husband swears by jewelweed to cure it. It's a weed that grows by streams.
https://www.fs.fed.us/wildflowers/plant-of-the-wee...
Welcome to all you new peeps! I'm sorry you're here but these ladies rock!
I hope everyone had a fabulous weekend!
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Just checking in and hoping you all had a good weekend.
Starr42 I still work as well, this past week I only missed Monday, treatment day. I ended up leaving a couple of hours early because I was so exhausted but I felt good being there all week. I too am a secretary and work with the NC State Highway Patrol. My supervisor and guys are amazing and very understanding. I push myself more than they push me lol. It's hard working but I def have to. I feel all I am able to do is make it work and the bed 😩😩
3rd A/C and we finally got my migraines/headaches under control. He reduced chemo 15% and I started steroid pack the day after treatment and that seems to be the trick for me. I still don't feel good and tired but I'll take it!! I'm def having a hard time trying to find something to drink that taste ok. I've tried everything. It's like my mouth is kinda dry but in my throat it feels thick?? If that makes sense. Most thinks I try is too sweet. And I just don't understand how I'm gaining weight because I'm having a hard time with food too 🤬🤬 I am told that after the 4 A/C treatments the last 4 are easier. I sure hope my body reacts that way!!
Does anyone know how long the port last? Does it like have to be replaced at a time or does it last through your treatments?
Arwa89 I'm so sorry you are having to deal with that on top of everything else. You def don't need any extra in your life.
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The type of port I have is a powerport & they told me it would take 20,000 pokes which is way more than we'll ever need. I'm glad your migraines are under control! You are a super trouper for working so much, pun intended:) The week of treatment, I'm wiped out completely. Do you use biotine as your mouthwash? I use that several times a day. I've added lemon to my water & has to be ice cold for me to like the flavor. I also add low sugar juice to it too mix it up. I also like ginger ale & la croix barely flavored fizzy water. Also I've read that steroids cause weight gain.
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Starr42 ok that makes me feel a lil better about the port. I’ve not had any problems with my esp when others have had a hard time like in the beginning, but I noticed today it has been like achy sore. Maybe I’m being too paranoid 🤷🏼♀️ Biotene I have and used a few times, but I don’t have sores so I haven’t used it anymore. But I’ll try that again . 2 years ago I gave up my crack of choice Pepsi and drank 4-5 liters of water a day with the crystal light drop in for flavor. Now im good if I get a liter down. Milk as crazy as it sounds is the one thing that taste ok 😩
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2019whatayear LOL 😂
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Just getting home from plastic surgeon about reconstruction surgery. (I did bilateral mastectomy May 14 and decided to wait on reconstruction to heal. Then found out about chemo). It went good, he said I was a good candidate for the DIEP FLAP But the million dollar question is to when 😩😩 my husband wants me to wait a while because of all that I've gone through and give me time to recoup, but am over all this and want to be done and do it as soon as I can and before Jan due to insurance. My chemo is suppose to be over in Oct and I can have it 4 weeks after. So decision now is when to have it.
for those that have had this surgery done can you weigh in, pros cons and would you do it now (after chemo)or wait
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I’ve had three eye styes this week! I’m two weeks post second chemo
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Rubydream what the heck? What does your oncologist say? Eye styes with chemo...So many SE’s we have to deal with.
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melmax-I have no clue! Haven’t talked to ME yet bc I assume he will just say it is due to suppressed immune system yada yada. My third chemo is in less than a week so I if I don’t get a fourth before then, I’ll ask at the appointment! I found it strange bc havent heard of this as a common SE. but leave it to me!
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At my 3rd AC treatment today and just out of the blue I thought “wow, it’s going to take mor than a year for my hair to grow back” duh! I knew this but it just.sank.in. Don’t think I can do head coverings for a year or more. Going shopping tomorrow for a wig. 😊
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