Starting Chemo April 2016
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Numb - so sorry you ended up in the hospital but glad you're feeling better. Good to hear that you will get the Neulasta shot next time.
Annie - glad to see you're doing better. (other than your grumpy supervisor!) I think it's so easy to get wrapped up in all the physical stuff with tests and procedures and side effects, that we almost forget to deal emotionally until it all catches up. Especially when what is supposed to be making you better, makes you feel like crap! On a lighter note - very cute wig. I got one with bangs thinking about the eyebrow thing also! I supposed they can always be drawn back on - I hear eyebrow stencils work pretty well - but I'm not very cosmetically inclined, so it make need some practice!
njnancy - I'm on the same regimen also - second round will be on Monday also so I'll be right there with you!
Cj - saw you got one of those halo wigs. I got one of the hats with hair figuring it's something easy to throw on if I run to the grocery store without having to do the whole wig thing every time. Yes, the hunger thing is scary. Our (small) church regularly donates food to another church that runs a food bank in the area. They have 2000 people registered with them to get food and that's just a small local church! Multiply that city-wide.
Has anyone submitted their wig expense to insurance? The woman at the wig store wrote my receipt up as a medical need and I got a scrip from my doctor to submit. They said even if it gets denied, take the time to appeal and then they'll usually pay. I don't even care if it covers the whole cost - just a portion would be better than nothing.
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NJNancy - I haven't submitted anything to insurance for the wig yet. I keep thinking I may want a more expensive one, so I should wait. And yes - the cap with hair is a great idea. I'm funny about answering the door bald, so it would be nice just to have something to toss on when someone knocks on the door.
It's raining today, so I decided to honor Prince and go purple in the rain.
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CJSHARMA - I love the colour of that wig, it is so soft and fresh.
My hair has finally started to come out, if I pull at it I get a few strands. I will pull it out when I go home. I cant wait for it to be gone and get my wig cut.
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Day 10. Eventful day today. Had appt for Echo test this afternoon. Woke up with sore throat and really sore tongue. Mouth too sore to eat anything. Temperature was ok but I called the Onc nurse to report symptoms. The asked me to come in prior to heart test to get checked out. Tonsils inflamed but thankfully my bloods were good and the white cells are on the rise. The Lonquex is doing its job
My temperature is still within normal levels. Ive been given a course of antibiotics and some crazy pink mouthwash called BMX. This stuff is insane! Completely numbs the mouth within seconds! On the positive side, my heart is in very good nick thank you very much, so onwards and upwards...NUMB - so sorry to hear of your hospital stay. Hope that youre home and on the mend soon.
CJ - I love your wig! Never thought of getting a funky one. You've inspired me!
Wishing you all a stress free weekend x
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So, I Went through my first chemo session pretty well yesterday. I'm taking the pills for nausea etc. my major side effect is lack of control of my bladder. I'm 60 and have had 3 kids so, I've had a slight issue. But only when giggling out off control etc. I woke up soaked and have worn a heavy pad today and it seems pretty extreme. I drank a Lot of water like you should, but now I'm frustrated. Do you think it might be the steroids I'm taking for these 3 days? I sure hope it stops now that I can stop the steroids. Any thoughts?
Sue
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SFar - what drugs are you taking? I'm 51 and have minor issues (coughing/sneezing) but did not have challenges that way. That's not fun. I would talk to your oncologist. I don't think that is a normal side effect. They can probably do something about that.
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I really think it's the steroids I take the day before, day of an day after chemo. So I should be done for now. I will call my MO if it continues. I know we had to really watch our dog when he was on them for awile. Could be worse, no throwing up! Thanks for your input
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The kids were off from school today and I wanted to have a special day with them before all the chaos begins on Monday. A friend of mine owns a chocolate store. She arranged a private tour and me and the kids were chocolatiers for the day. Besides the fact that I probably gained 50 pounds, we had so much fun. I really needed a day to just relax and laugh. Feels good to be myself and not think about cancer for a few hours.
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SFAR - that's not a side effect I heard of. I am 65 and have not had that problem. What chemo are you getting ? Sure hope this wears off and you don't have it for the entire duration of the chemo.
NJNANCY - What a good day, I would like to do that myself.
GRACIETOO - hope you get better soon
I am still stuck in here in the hospital and not a sign of being let out, although I want my husband to be better of his cold before I arrive home as no point in going from the frying pan into the fire. I feel good.
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Numb - thanks for your thoughts. Maybe I just way overdid fluids. I was a little paranoid about not drinking enough! I'm not a very good water drinker. I am on TCH. Originally, I was supposed to have the loading dose of the Herceptin on the first day, then go back the next day for the other two, but there was a glitch in scheduling me. I seem better this morning, no issues through the night. I guess things are as good as they should be
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Hello everyone,
April has been a tough month. My mom (53) starts her chemo Wednesday April 27th with neulasta on Friday. She has 4 rounds of AC (every 2 weeks) then 4 rounds of taxol followed by surgery, radiation and a year of Herceptin mixed in there.
I am a nurse and I am trying to get her prepared and prep everything for possible side effects... I am beyond overwhelmed. I'm hoping her healthy life style and good immune system helps her during this time. I am so scared but I have to have faith in this treatment plan.
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WERWARRIORS - welcome to this group. I am probably older than your Mom, and I have coped with the first round of AC, the side effects are manageable and I feared it more before I got it then afterwards. We are always afraid of the unknown and sometimes when we read too much about something it can feed our fears as most people only use the net to post about problems they are having and to find a solution. When things run smoothly, as in most cases, you don't often hear about these cases. You are emotionally involved because this is your Mom you are looking out for now, so that adds to your stress.
SFAR - Glad to hear you are improving. Yes, drinking a lot of fluids could easily set you off and you will know what to do for round 2. I would still mention this to your MO though, just in case they have a remedy for it.
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NJNancy - that sounds awesome! Hope you have a great weekend.
Numb - sorry you are still in the hospital. Hope you are feeling better!SFar - I would still mention that to your doctor - it may be something they can do something about. Are you taking Ativan? The only thing I can think is that you have some awesome sleeping pills.
weRWarriors - I'm about your mom's age. My daughter is 23 and while not a nurse, has been very supportive. Sounds like your mom is triple positive? I'm doing dose dense AC (every 2 weeks for 4 rounds) then taxol for the same. No Herceptin though. I've had minimal side effects - just being tired for about 4 days every cycle, others have more side effects. Speaking from my experience, the best thing you can do is let you mom know you love her and are there for anything she needs. Thinking of you and your mom. Please continue to check in and let us know how your mom is doing. And know her level of fitness and her healthy diet is in her favor. My oncologist told me that it used to be that we would look at survival rates of 5-7 years as successful, but now we EXPECT 30-40 year rates. She can totally come through this and put it all behind her to enjoy her grandkids and great grandkids. Hugs to you.Just took the dogs for a 4 mile walk around the neighborhood. Such a nice day for it and they are happy. Then it's off to my echo cardiogram on a Saturday of all days. It was the only day they had. How bad is it that I would prefer a weekday because my job has no issues with me taking time for appointments. Oh well. I'll swing by the grocery store after. I decided I'm going to follow this plan for a week. I need a plan to follow and this one looks basic and easy. http://www.muscleandfitness.com/muscle-fitness-her...
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Dear All,
I started chemo April 6th. Glad to find this forum of great ladies, sharing their experiences.
I am on Taxotere , herceptin and projeta for 4 cycles , once every 3 weeks and then 4 weeks of dose dense AC. My first cycle was Tchp and I have to say side effects were tough for the first 10 days , even though it's supposed to be easy first cycle ,next Chemo April 27 .
I think sharing my experiences and journey through Chemo with all of you will help tremendously.
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Uniboob Oh no! I'm so sorry that this happened to you. I get what you are saying about being in the oncology ward. I have a hard time just being at the cancer center. That would be very hard and triggering for me and my husband. I wish for all of us to get white blood cell management and to stay well.
Numb – Oh dang it, that is just so rotten. YES, give you the shots and don't wait…Errrr…Well I'm glad that I get them 2 x a week and that although terrible, you experience is motivating for me to show up and be diligent for that.
CJ very cool for you to go to that benefit! I know for me, when I listen to other's problems that are way harder and more chronic than mine, that I feel grateful and appreciate of not having such a permanently awful road. We can go this and it will be behind us!
I hope the weekend brings everyone some nice down time, healing, and togetherness. As for me, I'm doing well again…just some weird things and the usual fears is someone around me is sick. But it was about Day 7 that I started to feel really recovered from Round 1. I've had two shots of the WBC booster and bloodwork, which must have been normal as I did not get a call.
This weekend, I want to get some of my wellness routines kick started as I dropped a lot of that. And rest, even though I want to run around like crazy. Next week, just two trips to get the shot and one blood draw. No doctor's appointments. Nice. So meanwhile, I want to fortify my immune system and healing.
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Me again – had some more time to read and catch up with my chemosabes
Njnancy I hear you, it is really really important to just do life stuff and get all this out of our heads for a time. Being at work this last week actually helped me! Tonight we went and saw Zootopia and it was really fun. I feel grateful to feel good, one day at a time.
Sfar Oh no, well I hope it resolves and it is the steroids like you think. I'm glad that otherwise you are doing well. I'm on the same regime with the TC+H. I'm glad to read you are doing better. Super.
Numb – I'm glad you are feeling better – send your husband to a hotel so you can go home!!! Ha! Maybe I'll follow that advice and go to a nice hotel myself at the beach if my hubby gets sick. And look at you – so supportive to everyone from the hospital! Thank you for u!
Welome Positive Pow and WeWarriors!
Well I pushed the edges of my wig phobia and went to a shop today and tried on wigs. I was quite a disaster – I have a small head so I looked very funny in most of the ones I tried on, but I did get a great deal of info on what will look good on me, I need a pretty flat, simple style so I think I will go with a simple bob with some bangs. They had one that was good but not in a good color for me. So I am still looking on-line. I have 7 to 14 days until shed, heavy shed or fall out.
I'm feeling good today, Round 1, Day 10 TC+H, got laundry caught up and had a quiet slow morning and a nap. I didn't walk much today but I did rest and eat better. Had fun seeing Zootopia today. My husband said I am like the Office Hops. My boss is like Bogo. (if you've seen the movie). Weather permitting tomorrow, we are going to take part of the day and go explore Mount Baker Highway to look for eagles on the Nooksack River.
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Good morning everybody,
I hope that everyone is feeling good today. The sun is out here and Im looking forward to taking the dogs out for a nice stroll on the beach. Im feeling so much better and my mouth is much less sore now. I think that drinking plenty of water and regular saline rinses will be so important to keep my mouth in good shape throughout this journey. I am feeling so much more positive going forward after a couple of wobbly days. I cant believe that time in marching on so quickly and that my second chemo is coming up this Wednesday. Really, looking back, the side effects haven't been all that bad at all and I'm very grateful for that. I feel so much more confident facing round 2. I think that this forum and reading about your experiences is helping me so much.
I took the plunge and have cut my hair - I'm quite liking the result actually. It felt very liberating to feel the razor shear it all off.
ANNIEKAJA11 - Like you, I was underwhelmed by the whole wig experience. I've got myself a wig, I'm told I look great in it by husband, close friends and family, but to me, I just look like me in a wig. Maybe it's something I'll get used to but we'll have to see. What's left of my hair will be lost very soon anyway.
Welcome to Positive Pow and WeRWarriors. Im sure that this group will be a great source of support to you both. These women are amazing.
Stay well xx
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Good morning Gracie and everyone here. Beautiful day here in Ireland. Waiting for the result of my blood test this morning and if it comes back good I will be off.
Hair coming out in strands but not significantly.....yet. I guess this will escalate as time goes on. Head a bit sore, like my hair was brushed in the wrong direction. How long does it take for a significant hair loss or is this different for everyone? Will be glad to wear the wig when the time comes as my hair is a disgrace at the moment. Had it cut very short and hate it.
Wishing you all a good day.
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Morning Numb,
Best of luck with the test . I hope you'll be back home by lunchtime
I know exactly what you mean when you describe how your head is feeling. Mine is now starting to feel a little tender too. I've noticed some strands coming away but no clumps yet. I feel like it's definitely thinner - this was more noticeable before I cut it. Im on day 12 now so Im sure Im well on the way to becoming a baldie. Funnily enough, the thoughts of losing my lashes and brows is scarier than losing my head hair. Anyone else feeling like this?
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Gracietoo - I feel the exact same way about the wig. I went shopping with 2 of my sisters and we all liked the wig I got (and my one sister has opinions about everything so if she liked it, that says something!) but I still feel like it's obvious that I'm wearing a wig. We are in a similar timeframe - my second AC is Monday - so we'll be losing around the same time. I guess the test is wearing it out in public without thinking everyone knows you're wearing a wig.
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Happy Sunday Everyone1
Annie - so happy to see you back to your normal self.
I agree. Even though this sucks, it could be a lot worse. We'll get through this and move on with our normal lives. Gracietoo - Enjoy your stroll on the beach! I'm about 30 minutes from the Pacific where I am and I don't get there enough. Might have to change that. The ocean soothes the soul.
Numb - sorry your short hair is a disaster! I'll bet it looks really good, but just not like you. I hope you get the blood work back quickly and can leave. Nothing like spending days in places you don't want.
I am much more bothered by the hair loss than I thought I would be. Every time I see my patchy bald head (I still have patches of hair) I feel like I LOOK diseased. I've always been strong and healthy. Even when I broke my ankle - I hiked down the mountain myself (of course it was not a major break). I hate looking so sick. My wig is actually the only way I look relatively normal. Yeah, I can tell I'm wearing a wig, but people tell me that they simply cannot tell. Even those who pride themselves on telling the truth regardless. So, I have to believe them.
I can't believe I'm coming up on round 3!! Holy cow, this is going faster than I thought it would. That makes me happy!
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Thanks everyone for the good wishes. I am OUT. OMG I had to argue with the nurses this morning as they felt I should wait until tomorrow, but when I said I could take oral antibiotics at home they had no answer for that. So in the end I just said I would come back if I had a relapse and we all laughed, so I got out. I am a bit weak now after spending 3 days in a very warm hospital but glad to be home. So I have to ring my MO tomorrow to find out if I can still go for the camera down my throat on Tues and round 2 on Friday. One of the nurses said she didn't think I would be fit as my body needs to recover, but we'll see. If the bloods are up to scratch on Fri then I can't see any reason not to get round 2, but my MO will advise me tomorrow. Fingers crossed, as it would mean that all my AC treatments would then be put forward a week and I want them to be over the sooner the better.
CJSHARM - I laughed out loud when you said you felt "diseased" with bald patches on your head. I can associate with that even though I don't have the patches yet, but my hair is so short I look rotten and if I could just wear a wig I feel I would look normal.
I think we all look at ourselves more closely than others look at us so we will always see "a wig" when we look in the mirror, but others mightn't.
You are so lucky Christine to be facing round 3. I envy you, I am just praying I can get round 2 on Friday.
GRACIETOO - Yes, I don't care much about my hair loss but feel if I lose my eyelashes I will definitely look sick. I can pencil in eyebrows, but eyelashes, my eyes will be baldy
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Hi Ladies!
I have been following you, but not posting (other than my first post) because I've been busy in the Triple Positive Group, trying to get some advice on learning about nuances of my treatment protocol (that group has, thank goodness, some very knowledgable women with vast experience in this less-than-common tumor combo.)
My start date was changed to April 29, this Friday, as we still needed a PET scan (tomorrow) to check some liver spots that showed up on an unrelated CT for GI issues (the same week I had my mammogram and biopsy), and couldn't get an appointment to have my port put in until Thursday (I have "rolling" veins and terrible trouble with IVs). And, I am getting a second opinion at another (academic) medical center, just to confirm my treatment plan is optimal for me.
I've been talking with the Triple Positive Group about my treatment details, and it could still change this week, depending on what a seoond opinion says and (hopefully negative) results of the scan. So far, my MO and her team are opting for Taxol and Herceptin only, once a week for 12 weeks, then Herceptin continuing for 9 months, with AIs also (and for next 5 years.) I have had a lot of GI issues in the past, but they are finally well controlled with a strict diet. I'm 56 but live a healthy lifestyle, exercise, etc. My doctor did say if I was in my 30's she would likely be using stronger chemo, so that gave me a little pause. (Also, quite surprised my husband to learn I am older than her thought.
Joke.) I am trying to stay positive and plan on exercising as much as possible, walking my dogs, trying to swim (when I recover and rehab fully from my double mastectomy--I am not quite 6 weeks out and still have pain, limited motion, and weight carrying restrictions.)
Cold caps: My MO also forbids cold caps, and also cold mitts and gloves, for reasons of defeating the purpose of chemo and killing circulating cells; she would allow you to hold frozen peas in your palms and underneath finger tips .Anyway, the idea of all that work during my 4 hour infusions and before and after seems stressful to me. Do the nails always turn tan or black with Taxol / taxane drugs? Can't I just cover it up with dark polish? I haven't thought about this yet...too many other things! Anyone know?
Beauty, makeup, and wigs:
Not to be too superficial here, but everyone says trying to look my best will help as much as eating well and trying to exercise And, my job involves appearing in front of hundreds of new people every few months. So here's what I've learned and my plan....I didn't know a lot of this, so I'm sharing for those who might need the info, too!
Makeup: My college aged daughter surprised me this weekend by flying home just to shop for hats and scarves and caps and pick out a wig, all of which we did, topped by a mega trip to Sephora for bright lipsticks, eyebrow stencils and the right non-smearing and dripping Anastasia eye brow products (there is a great video online of how to do great eyebrows by a woman who has alopaceia), and extra sensitive skin moisturizer. I'm usually a more minimal makeup person with a more natural look, but my daughter can glam it up and determined that with my pale white skin and light green eyes, a strong lip would be important! I plan to simply follow her advice!
Eyeliner and glasses: Also, for eyeliner, I've been practicing with Bobbie Brown Gel eyeliner--it stays on really well. Eyeliner is key to no lashes; our skin will be too sensitive for false eyelash glue (mine normally can't tolerate that either and also I hate the feel.) But if you really feel naked, eyeliner, with neutral toned shadow on top, and darker "liner" shadow underneath like lashes will be very helpful to avoid the mole rat look. And, if you really want more coverage, get a pair of inexpensive clear glasses (or new prescription ones) that have a top frame part that hits where your eyebrow would be. These are all suggestions from my hair stylist friend (very into fashion), my chic daughter, and a fabulous makeup expert at Sephora! Warby Parker has online frames you can try at home for free, and everything, glasses and frames, with prescription or not, is $90. Very cheap for prescription eyeglass. I have a pair and they are as good as my fancy brand ones.Hair: What my stylist said about hair issues: My friend of 27 years is also my hair stylist, and has traveled the world doing hair shows for color and cuts. She recommends, for those who are sure they will lose their hair (most of us do--around 95% with these breast cancer drugs,right?), that you do a short cut when your chemo starts (maybe a bob from a long cut, or, if you have a bob, go to a short cut), then it won't be as traumatic when the hair starts falling out. She also recommends buying online these cheap sleeping caps to catch your hair, so you don't wake up with hair all over. For me, because she is doing my hair in this phase as a gift to me , we colored last week so I could look fabulous this last chemo free weekend, then this coming week probably the day after chemo we will cut it short (it's a long bob, perhaps 3-4 inches past the bottom of my ear--I can't post photos due to a personal security issue
), and then the next week, right before week 2 dose or maybe the day after , we will cut it super short, so we can see where we will eventually grow it out to--if I like that style, etc. She says on this schedule of chemo (if it stays the same) there may be about 3/4 to 1 inch at Christmas, and I will have a very short by stylish haircut one year from now...just for any of you wondering about timing. So , scarves and hats and a wig if you like are here for a while...
Numb, I hope you are home by now and feeling better. I guess it's a good idea to have a bag packed ready for ER or hospital trips, just in base, with essentials like lip balm, extra charger, etc...
CJ, I'm in the northern South Bay area. I work in Cupertino and have a sister in Palo Alto. I am taking time off from work for a couple of months. I'm at Kaiser Santa Clara but getting a second opinion at Stanford.
Hope all the rest of you have a good week ahead. It's a busy one for me, with the PET, the second opinion (could be stressful if it differs from the treatment plan prescribed so far and I have to handle that...), echocardiogram, the PORT placement, post-surgery checkups (still healing from the BMX), and trying to get organized for possibly not feeling at my best. My husband's mother just died, and on Day 4 post my first chemo (supposedly on the Taxol-Herceptin regime, days 3-5 are worst....but who knows) he must fly back East for a week for the funeral and to help sort things. I am a little concerned--my sister can help somewhat but not entirely as she has young children. Trying to line up friends in case I get sick and dogs need caring for etc. (they are big and not everyone is up to the task...you must know dogs.)
So glad you are all here!
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Zoziana - I'm so sorry to hear about your Mother In Law. Goodness, it doesn't rain but pour! if you need help with your animals, and cannot find anyone local, contact Cancer Pet Companions. These are dog loving people and they will match you with someone who can handle your big dogs. I know the founder - she's a two time breast cancer survivor and is wonderful. I'm just a bit south of you in Willow Glen. I work in San Jose. As I have the ability to work from home, I am continuing to work for now. I'm also having a lumpectomy (most likely) versus a double so that is a big factor. If you need anything, PM me. I handling treatment pretty well. I'm happy to meet up for coffee and I'm a really good listener. I can lend a hand as well. We're all in this together, so anything I can do, I'm happy to do. I can even walk large, rowdy dogs (I've trained search dogs so I'm dog savvy).
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NJNANCY and SHERIECT - Best of Luck tomorrow, hope it all goes well for you both.
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Thank you, Numb! I am so stressed and overwhelmed! I can't wait for tomorrow to be over.
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I've been doing quite well so far - I'm now on Day 15 on my 3 weekly MMM chemo. So far, I've only had a couple of days of mouth ulcers, and a bit of heartburn / reflux. But yesterday and today, I am utterly exhausted. I had 9 hours sleep last night, up for 3 hours then a 4 hour nap. I've just got up and had a shower and I want to go straight back to bed. Is this normal for this stage, or am I in trouble? I've got blood tests tomorrow, but I'm wondering if I should head down to the hospital today?
How bad did the fatigue get for you ladies?
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Goodmorning all, and welcome back Suems, I was wondering how you were. I did not have much fatigue, but then I am on a different chemo to you. I would say that your blood tests will tell whether you are at a normal stage for your type of chemo. Two weeks after start of chemo is meant to be when you are at your lowest, unless you are getting a neulasta shot, so maybe this is where you are at now. I don't know enough about this though as I am only learning myself. Hope you get good results and I would definitely contact your MO and ask about this, no harm in that at all.
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SUEMS - Feeling very tired is a common side effect of MMM chemo. It’s often worse towards the end of treatment and for some weeks after it’s finished. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery.
MMM can reduce the number of red cells in your blood. These cells carry oxygen around the body. If they are low, you may be tired. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red cells (blood transfusion).
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SUEMS - I was also thinking about you! Glad you checked in. I'm also on a different chemo, but I have found myself utterly exhausted. It's wearing. I get chemo every other week and by day 5 I'm barely able to keep my eyes open. 9 hours with naps is common for me, too. Sucks, huh? For me, it's short lived, but I always know when my WBC are low. But, if you are questioning, call your doctor and find out if he/she feels you should come in.
I have a big presentation tomorrow, so today will be working on that. Joy.
I'm an account manager and I swear my bosses always come up with something else that is not focused on my customers for me to do. Oh well. It pays well, so I can't complain. 0
