Starting chemo August 2017 - would love some moral support!

PauletteK

Rdee - I got my wig, hats and I learned how to wrap my scarfs. I keep telling myself this is only a temporary thing I will get my hair back,

VL22

Home from first AC infusion - it was very smooth. However, I must say I am beyond tired! I'm really surprised how exhausted I am! I did get the port today and was at the hospital for 7 hours. Also, a side effect of the anti nausea med is drowsiness and if a medicine says that I am getting it! Just so glad it is over - feels great getting one under the belt

rdeesides

Paulette - Yes, this is all just temporary. We have to keep that in mind. Otherwise we will go crazy. Try to have fun with the wigs and hats.

VL22 - That's awesome you have one done! Yay! Did you drive yourself? I am going to drive myself, but now nervous about being too sleepy. I guess if it's too bad I will Uber home. But that is not something I can do every time so we'll see.

R

VL22

Rebekah - I could have driven home, about an hour after getting home (a 30 minute drive) is when the tiredness hit me. I also think getting the port intoday added to the fatigue- I had the twilight anesthesia and that requires having a driver

I am planning to drive myself for the next infusion. My infusion nurse did tell me that with Taxol they give bendryl with the premeds - that would make me personally rethink driving myself because it does knock me out. I'll probably take someone with me the first day of that infusion.

sunnyjay

Rebekah, are you having the Neulasta shot? I'm working as well and the bone pain (days 5-7) from the shot was no fun. I took Claritin an hour prior to getting the shot but it didn't seem to help. Someone said they started Claritin 3 days prior so I'm trying that this time around. We'll see if that works better. I did not work on day 5 (a Monday) because the bone pain kept me up all night. But I was fine by the afternoon so I went to work on day 6 and was ok for the most part as long as I took breaks to walk around. I was feeling the pain mostly on my legs and back. It just really hit me at night when I'm in one position for a long time.

Starting your treatment on Wednesday might be better but again, we're on different regimens so I don't know how ling Taxol side effects are. If it's similar to Taxotere then it should be pretty close to what us CTers are going through. We get both on the same day and most of the SEs are from taxotere.

sunnyjay

Rebekah, I also wanted to mention... I think I could have driven myself since I don't have any allergic reactions so no additional meds. I did feel woozy after today's session but it went away quickly. For your first session I would uber it to see how you feel.

lovepugs77

I've done 4 DD AC infusions, and 3 of my 4 DD taxol. I could have easily driven myself home after all of the AC infusions. The tiredness didn't hit me until day 3. My oncologist requires a driver at the first taxol. I wouldn't have been able to drive after that one. They gave me 25mg of Benadryl and a compazine, and that combo was too much for me. I couldn't keep my eyes open. For the second and third infusions they gave me zofran instead of the compazine , with the same dose of Benadryl, and I didn't fall asleep during either of them. I could have driven myself home, but it was nice not to have to worry about it.

Edited to add that my infusions are on Thursdays and my worst days are always Saturday/Sunday, so that has worked out well for me work-wise. I'd leave the first one on Thursday and see which days are the worst. There's really no way to tell before that first one.I know my onc was willing to reschedule my second infusion if needed to ensure my bad days fell over weekends.

sweetp6217

Welcome DanaC123! I worked on ice chips and luckily the infusion ward I go to has two ice machines. Once I was into the first infusion, I unplugged my machine and went in search; wasn't far. Bathroom wasn't far either, but I noticed that men were there to for their chemo so I was glad that I was wearing a kind of loose fitting blouse with buttons so I could conceal my port.

Welcome dinahmagic. So sorry that it's happening and I'm right there with you! Before I went to work today, I grabbed a bandana and kind of scarfed it in order to keep the hair in place. A few escaped in the 4 hours that I worked and I got a few looks, but who cares? I felt secure for a short while.

Hugs All!

sweetp6217

Rebekah, how did the port installation go? I hope well. Also, how far apart are your infusions? Mine are 3 weeks apart and my hair is falling out something crazy on day 15 of my 21 day cycle (infusion day is day 1). As soon as I got home from trying on wigs, I went online and ordered a silk in front wig. The ACS TLC collection has much to be desired, unless there is a style for you; which I think there may be. The volunteer told me that the TLC collection went up in literal flames last January, so they're "still having a hard time ramping back up to what they had". It was difficult for me to try on wigs today because I'm still in denial and haven't gone in for a buzz cut. I have to do this before Monday because the hair wants off my head. Luckily, my head doesn't feel like it's on fire as some have unfortunately experienced.

A note to whoever goes to try on wigs at TLC/ACS boutiques, they provide a cap so that you can try on the wigs. The cap looks just like pantihose material. I already have some of my own and I'm about to order a better cotton one that is supposed to help in the summertime. I'm also ordering some styling spray, a wig stand and maybe a better stand to help with stretching, also some wig shampoo.

I gotta tell you though; I didn't lose it when I was diagnosed, when I was married to the bathroom, only today, when my hair started falling out. I feel so vain.

Kritti

oh, I'll have to try those Popsicles. I made the mistake of picking up a few containers of lemon chobani greek yogurts. Nope. Not going to lie, they were disgusting. I even had my husband ( who loves all things lemon) try and he agreed.

And then I forgot to do my baking soda/salt swishes today and just realized I have 4 sore spots in my mouth tonight. None up unail now, I had been doing so good! I thought I was past the needing to swish this infusion cycle. If they aren't cleared up by Monday I'll call my Dr - I was told they can prescribe some kind of *magic mouthwash*.

Leatherette - have you told your Dr your mouth is all torn up?

I'm trying to decide if I will go for a wig or not. My daughter has alopecia and is completely bald, so I'd kind of like to have this experience to share with her. The other (scardy) part of me wants to hide it because I don't think I'm nearly as brave as she is. Today is day 10 of infusion 1/4, so I'm counting the days now until it starts shedding.

sweetp6217

Oh Dear Kritti, my doctor/nurse wrote me a JIC RX for that called nystatin 100000 UNIT/ML Mouth/throat suspension. Probably cheaper than $ magic mouthwash. Those darned sore spots. When will the SE end?

PamelaJae

hello everyone, i am in week 3 of the 2nd phase. the first phase was something they called red devil and i've not been back to open the book to see what it actually was. i had it for 2 months every other week (4 doses). the nurse sat and pushed the red devil into the port herself and hung the other bags. i took nulasta 24 hours after infusion ended. Red Devil was hard. Losing my hair was hard too. i cut it before chemo and then buzzed it when it started to shed. i thought all of the hair fell out. it does not so i keep i shaved. my brows and lashes are thinning, nails are darker, but hanging on. i've decided to leave them unpainted throughout and use tea tree oil and keep them as moist as possible. those first 8 weeks were hard. the week of treatment was more difficult as far as fatigue, being able to eat, and some depression. but, the second week, my energy, appetite, and depression lifted enough that i could do some gardening and house work which made me feel somewhat normal. the next treatment is the paxitaxel which will be for 12 straight weeks. no break to recover in between. but, i've had three and so far, god bless. i am tolerating it much better. my joints, muscles, ligaments, and breast incision sites are really sore and nails are darker. i am detoxing in the bathtub with bath salts. it's awesome or so i am believing that it helps. i did see my dentist to make sure everything there is stable and she's going to see me again before this ends just to keep a check on teeth. i can never sleep the day after infusion due to the steroids they infuse. they also infuse prilosec, benadryl, zofran, and then the paxitaxel. i chose not to take steroids throughout. i am only taking them during the infusion. i understand some people take them throughout the course of their treatments. i did use phenergan for nausea the first 8 weeks during the Red Devil and i slept more just to get through. i have 9 more weeks of paxitaxel and then a month of radiation.

i had surgery in 2015 for a bleeding right breast and then my follow up mammography show ADH in the left breast. it was biopsied and i was told it wasn't cancer, but needed to be removed because there was a high chance that it could go that way. went to surgery using a wire guided ultrasound. pathology came back DCIS. the doctor and i were devastated. she didn't get margins clear so i went back to surgery and had a noded biopsy, still didn't get margins clear so i went back to surgery one more time. by this time, i had anesthesia brain, depression, and developed positional vertigo and lost control of my car, flipped it twice, and that just about did me in. they encouraged me to go on FMLA and then short term disability and i will be out of work until the end of 2017. i have no history of breast cancer in my family at all. i am a first; go figure. i like to think i am a young 65 years old, healthy and fit, eat well, am strong in my faith, but our lives can really get messy sometimes. my family has been so, so supportive. i have a son and 2 daughters, 3 granddaughters, and a grandson. they are awesome support. i do not feel alone.

i am rambling because the steroids are working overtime. please reach out if you need me. i can be more concise and clear with the actual drugs and the diagnoses, but not at 130 am.

i say all the time that i may have cancer, but i'm going to keep it dressed up and i don't have to like the fact that i have breast cancer, but i do have to deal with all the parts of it and i have to keep a positive attitude not just for me but for whomever is watching me.

Gingernurse

Swwet P,

It's your body, YOUR TX, you have a say and yes, get lab work, its careless to go in blindly- every one reacts differently to these toxic medications. Its absolutely terrifying. At first I was more concerned about the outcome of my breasts appearance, now, I just want to survive. I'm still having nausea on day 9 and starvation diarrhea. Fluids at the infusion center definitely helped and I've been able to keep hydrated with watermelon. I will be absolutely way more demanding with my new group of MO's as this first doc was the only MO at the entire practice. I'm also going to be asking for the neupogin shot rather than the red devil Lunasta. I know I have a UTI and I'm giving a urine sample in the am. CT on Saturday from the fall. Hugs!!

Willow22

welcome to all the new members! Sorry you are dealing with BC and chemo, but grateful to connect with all of you!

Gingernurse - sorry to hear you are still feeling so bad! Hopefully your MO added compazine or something else to help with your SE.

Pamela Jae, you've been already been through so many treatments, but your strong, positive attitude shines thru your comments! I think adriamycin is nicknamed "the red devil", just from reading other posts here.

sunnyjay

SweetP: my hair started falling out last week on Day14 after first cycle. It was a total shock seeing the handfuls of strands falling out. The hair loss has slowed down and I have about 30% left all over my head. There are bald spots, mostly where my part is so I just comb some hair over these areas to minimize the baldness. The back is thinning, and looks like bed head. I am not ready to shave it yet because I would prefer to see the length of what's left than a bald head. I wear my wig each day to work. When I get home, I sit in front of a mirror each night combing out the loose strands, rock the funky comb-over, then put on a sleeping cap before bed.

Are there other wig banks in your area? There are 2 in my area in addition to ACS. One of them allowed me to select 2-3 wigs and a couple of sleeping caps, a wig stand, and shampoo/conditioner. A donor who was either downsizing or closing her wig shop recently donated wigs, so I really lucked out since they weren't included in the main inventory yet. They appeared to have a bigger selection than what I saw at ACS so I'm really glad I sought them out. They totally gave me relief and peace of mind after the initial shock of the hair loss. I also checked online and the ones I liked had a 15 day turnaround. I didn't want to wait that long but I kept one in my cart and would purchase it after my visit to the wig banks. Now I have 3 wigs with progressive lengths that will last me til next year!

I tried tying a scarf for the 1st time last night, and it looked cute. I used a long scarf and found a video that made the scarf ends wrap into a flower shape. My DH thinks the beanies and scarves look fine but I'm not ready to go out in them just yet. I can do a hat since it still looks "normal'.

Well, since I had my 2nd infusion today, I'm anticipating a lot more hair loss, maybe more aggressively? The scalp pain has been minimal to non-existent and I'm thinking if I go bald now, the scalp pain will start.

Sorry for rambling... Just wanted to let you know that you're not alone in your thoughts.

Clearpath

rdeesides - it's good to order your wig ahead of time since there may be some lead time to order. I ordered mine several weeks before chemo. I also ordered a baseball cap with attached hair which looks cute and is easy to just throw on (although I haven't lost my hair yet - should be in the next week or so).

By way of encouragement, one of my best friends, who is also under treatment and nearly done with chemo, just showed me her hair was already regrowing

VL22

Clearpath - I havehair well passed my shoulders. Is it possible to select wigs without cutting hair first? Thanks

rdeesides

VL22 - Good to know you could have driven home. I am going to ask if I can get chemo at an infusion center near my house, vs. the hospital which is 30 minutes away (or more if there is traffic). That should hopefully make it a little bit better so I won't have to drive far.

Sunnyjay - I don't know yet if I will get the Neulasta shot. I work from home, and am rarely around other people so I'm thinking I don't need it. On the other hand, I have a 9 year old daughter that will be in school, so who knows what kind of germs she will bring home. I guess I'll see what my MO says. I don't think I want it because it doesn't sound very fun at all! But, if I need to do it I will.

Lovepugs - Yeah, I think the Benadryl might get me. I guess it depends on what the dose is, but that generally does make me quite sleepy. Good to know that your schedule is Thursday with Sat/Sun being your worst days. I feel bad for my family that I am going to make Sat/Sun my worst days, but I really do need to work as much as possible as I am going to be getting laid off in February, and I need to make money while I can.

Sweetpea - If you haven't cried up until hair loss you are doing awesome. I have cried every step of the way. So many tears! I am sure I will cry when I start losing hair too. I have said it before and I will say it again, my hair and my boobs are my two favorite parts of my body. It really sucks to lose both of them. At least the hair is only temporary. I for one am going to try to have "fun" with picking out wigs. I am going to get a crazy one addition to a normal one. I'm thinking maybe purple or pink hair. Lol.

PamelaJae - It sounds like you have been through a lot. You are very fortunate to have a supportive family. That makes a world of difference in what we are able to tolerate. It sounds like you are maybe halfway through treatment. And at least "the red devil" is behind you. I hope everything gets easier from here forward!

Clearpath - I think I will get a baseball cap with hair too. I'm trying to decide what I want to do about exercise. I try to walk several miles a few times a week. I don't think I will want to go out bald in case a neighbor sees me. I hope a baseball cap with hair will work and not be too uncomfortable, especially since it may be hot at least for another month or so. On a related note, I haven't told any of my neighbors about my diagnosis and I'm struggling if I should or not. I am not particularly close to any of them as we have only lived in this house for less than a year. On the other hand they all seem to be kind and generally supportive. I just don't know that they need to know though, so for now I am trying to figure out if I can look "normal" whenever I go outside of the house.

VL22 - The wig shop I'm going to told me that they actually wanted me to come in with my long hair so that they can see how I look when they help me try on wigs. So you must be able to try them on with your long hair.

All, I am struggling really hard with the port. The site where they had to cut to put in the port is of course tender and stiff and that is to be expected. What I'm struggling with is that my entire body is sore. I literally feel like I was in a car wreck. You know how when you've been in a bad car wreck the next day your entire body hurts? Well, my entire body hurts. It hurts to cough or to sit up or lay down or do almost anything. Not a horrible shooting pain, but like I worked out really hard at the gym and used every single muscle. Why do you think this is? Either my body is just in shock from the surgery or is it possible that something is wrong? I think I will email the doctor today to ask. You know what else sucks? I gained three pounds after I went in for the port! I have been trying very hard to lose weight. I am walking and really watching what I eat. I have lost 20 pounds, so gaining back 3 just makes me mad! Ok, rant over, but so far this port just makes me mad. Lol.

Hope everyone is doing ok today and that at least if you aren't feeling well you are able to rest and take it easy.

Rebekah

lovepugs77

Rebekah, are you getting dose dense chemo (every two weeks) or a regular schedule (every three weeks)? I'm on dose dense, and my MO said that the neulasta is not optional for me because my WBC counts wouldn't be able to rebound fast enough for the next infusion without it.

My benadryl dose is 25 mg, which is the same as 1 benadryl pill. However, since it is given intravenously, they said it is a little more potent than one pill would be. I guess it all hits your system at the same time instead of slowly like the pill would. I get a little sleepy for maybe thirty minutes, then I perk back up. My infusions are 30 minutes of pre-meds plus 3 hours of taxol, so by the time the taxol is done, I'm wide awake.

As to your question about the port, do you know what kind of muscle relaxers they gave you during the surgery? After my first surgery, I had the same kind of soreness you are describing. Mine was from a muscle relaxer that makes your muscles all contract really hard before they relax. It is used when intubating if they put you on a ventilator during surgery. It is a very common reaction. Here's a link to info about the drug itself: https://www.drugs.com/cdi/succinylcholine.html . I think the name of the reaction is "scoline syndrome" or something similar.

Before my second and third surgeries, I told the anesthesiologist about my reaction to the first one, and they just used something else for me. I no issues with the other muscle relaxers. The anesthesiologist for my third surgery had actually had the reaction himself, and said it was so miserable that he doesn't use that drug on other people if he can help it.

VL22

Rebekah, I recall you saying you were under general anesthesia for the port placement and this was the first time? Anesthesia can really make you feel bad for a few days, unfortunately and the weight gain can also be attributed to this. I'd still call the MO, but I just wanted to mention this.

rdeesides

LovePugs

Thank you so much for this info! This describes exactly how I feel and if you read that link it even says that it can cause an irregular heartbeat, which I also had during the procedure! I am definitely going to ask to not have that again. The pain from the port is slight and a little stiff, but totally tolerable. The pain from the sore muscles is misery!

I think I will be on weekly Taxol which will NOT be dose dense. So perhaps I won't need the Neulasta for that portion. Later on I will be doing AC, so maybe I will need it then. I will meet with my MO on Monday, so I will ask her about it then.

Good to know about the Benadryl. I think I will be ok. I am going to try to go to an infusion center near my house too, so that I don't have far to drive.

Thanks for the info! I'm calling my doctor now!

Rebekah

sweetp6217

Rebekah,

Thank you so much for your kindness. Maybe I did shed some tears at some point before, but nothing like this. Purple wig? Definitely!

About the port though. They put mine about where my heart would be if it were under my right boob. The lump(s) are on my left side. Also, I only got a local and a twilight type anesthesia. Wish I had been asleep in one respect; kept hearing the same song, over and over again. As for sleeping, I still don't have the guts to sleep in my bed without putting pillows around me so I can't turn over. Still "sleeping" in a recliner or almost sitting up on the sofa.

rdeesides

VL22 - I should have asked for Twilight! Ugh. This makes me nervous for the breast surgery. Hopefully we can resolve whatever is causing these side effects so it doesn't happen again. How is your port doing? Have you taken the bandages off yet? I haven't but I'm dying to see how it looks.

R

VL22

Rebekah my port really feels fine. It is bruised and looks like a vampire bit me, but I can tell it is going to heal fine. The bump is so much smaller than I thought it would be.i would have no issue wearing a tank top.

I saw on the TN forum you were thinking of getting the ponytail for the baseball hat. I ordered one and it is really good quality. My only issue is I wish the ponytail were a little longer.

I've also avoided telling any neighbors about my BC and I've lived here10 years! I'm pretty quiet anyway and it just seems so awkward. I'm friendly with some of them, but not in a get together way. I have two teen boys, one very quiet the other not so much!, and we've talked about people approaching them about my cancer and they will be fine, which has brought my anxiety down a notch. So I plan to go out in my wig or baseball ponytail and wait to be asked before I tell.

VL22

Rebekah my port really feels fine. It is bruised and looks like a vampire bit me, but I can tell it is going to heal fine. The bump is so much smaller than I thought it would be.i would have no issue wearing a tank top.

I saw on the TN forum you were thinking of getting the ponytail for the baseball hat. I ordered one and it is really good quality. My only issue is I wish the ponytail were a little longer.

I've also avoided telling any neighbors about my BC and I've lived here10 years! I'm pretty quiet anyway and it just seems so awkward. I'm friendly with some of them, but not in a get together way. I have two teen boys, one very quiet the other not so much!, and we've talked about people approaching them about my cancer and they will be fine, which has brought my anxiety down a notch. So I plan to go out in my wig or baseball ponytail and wait to be asked before I tell.

rdeesides

VL22 - Ok good, I don't feel so grinchy about not telling my neighbors. :-) I am surprised how "private" I'm being because I'm usually an open book. I think I just don't like making people feeling uncomfortable so it's easier to just say nothing. My daughter who is 9 has a big mouth so I'm sure eventually she will tell someone, but that's fine. I don't mind if she talks about it... I just don't really feel like discussing it with people I don't know well.

Good to know the port is small and you can wear a tank top. I asked my surgeon to make it as inconspicuous as possible, so he gave me what he called a "petite port". I do have a little bit of "padding" so I'm hoping this is one time I can use it to my advantage.

R

sunnyjay

Clearpath: Where did you order the ball caps with hair? I've been looking but don't know what they're called. When I went to my local cancer center to try on wigs my hair just started falling out so I still had most of my hair. So it helped her match my style and color. I had a bob style and the wig i got looked like a grown out bob so it works and can't tell that my hair is thinning. However, it was a little breezy yesterday and I was self-conscious that you might be able to see the wig cap underneath so just kept holding my hair down. I will buy some decorative hair pins to hold down the sides or the bangs which are side-swept and they have a tendency to fall over my eyes. I'm afraid to get it trimmed since it might end up too short.

Rebekah, my port has been bothering me since I had it placed. They said I wouldn't even realuze it was there. I like wear it was placed so my bra strap doesn't touch it. But I think my purse does since it has a wide band. And when I sleep on my side I feel like something is poking me under my skin. I've used it twice for blood draws and twice for the infusion, both 3 weeks an art and it's still bruised. The nurse told me to not put pressure on it (duh), and to call the surgeon if it still feels like it's poking. I've experienced a little weight gain but not sure if it's from the port or chemo since I had them both in the same week. After my first infusion I lost 5 lbs but gained it back right before round 2. Go figure!

toughcookie_21

My chemo has been pushed September due to a disparity between my first and second opinions so I haven't posted here very much but I've been following you all and hope we all make it through this with minimal side effects.

My 8year old daughter told my neighbors daughter about my diagnosis and it spread like wildfire through the neighborhood from there. I had hoped to get through this without too many people knowing. The same thing happened at work. I told a one or two people and then when I went out for my mastectomy, news traveled fast and now so many people know about it. I didn't tell anyone not to say anything so I can't be angry or upset. I just don't want pity! Soccer season starts in a few weeks and I'm dreading going to games and practices and getting the pitiful stares. Soccer moms are intimidating enough without this compounding my awkwardness around all the other parents.

I also wanted to share what I know about Neulasta. When it was first approved by the FDA, it was indicated for patients over 65 and patients with immune systems compromised by conditions such as diabetes, kidney or liver disease, etc. they now have expanded indications for all patients receiving certain chemotherapy drugs who are at risk for infection with certain exceptions. Not all oncologists will prophylactically prescribe Neulasta in otherwise healthy and youngerpatients, but they should be monitoring blood counts. I personally would like to avoid it as it comes with its own set of very nasty side effects which many of you have been experiencing. That being said, if I get into a position where my wbc counts are low enough that I'm at risk, my doctor will prescribe it.

I go on Monday for my port placement.

Willow22

Tough cookie, sorry about the wait and hope you get a firm decision on treatment plan soon!

Kritti, I did try a sip of wine last night, and paint thinner is a really good description.... ewwww! Chocolate also tastes very weird, so your timely lemon Oreo red is now my go to evening treat 😛

Your daughter sounds like an amazingly strong person.... I wish I were as brave and self confident as she is!

Rebekah, you might want to ask your doctor about neupogan - the short acting version of neulasta. Everyone is different, but for me, the bone ache started about 12 hours after my first dose and ended 24 hours after my last dose. Took Claritin daily, and 2 Motrin every 4-6 hours took care of the ache pretty well (MO said I could take either Motrin or Tylenol). When I couldn't take OTC pain meds due to rising temp, the pain made it very hard to sleep. I had 3 injections (days 8,9 & 10). Next time they'll check labs on day 6 and have a shot if needed, hoping to treat sooner before counts go as low and maybe need fewer shots. I'm 55 so I may take longer to get back to normal than you young gals 😉

VL22

sunnyjay- Headcovers Unlimited is where I got mine. Nice quality