Chemo starting June 2018
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Domzie-weather this summer awesome here, wish I could be out enjoying it more! Hope you are! Libbie Lou, I ordered my wig band off Amazon..not sure of the brand but went with one that mentioned comfort. It came 2 to each order. It has been too hot to wear wig, but the few times I have=the band worked very well. Thrush is getting much better, but now rash is attacking. At least it is not hives again. Glad someone mentioned cortisone cream earlier....and Benedryl.
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I have not gained weight, I have lost a few lbs. I am not working, but have been busy with the new house, so there has not been much boredom, and also I am still exercising regularly. My appetite has been decreased and I feel full quickly. Unlike what someone said, my taste buds mean I just don't want to eat that much, rather than cover it up. The thing that covers it up best is ice water, maybe with a little lime. So at least I have that going for me. I am trying to eat increased protein to make up the calories, but it is hard. I have always loved food and eating, so this is the opposite of what I expected.
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Popcornme, I have also gained some weight. I had to laugh I ‘ve been telling everyone its a game to see what i can taste, and with the steroids I feel like I’m hungry all the time. Still staying active but yes putting on weight. I get so mad when people say “You are gaining weight with chemo. Don’t people usually lose weight.” I just want to say this is real life not a cancer patient in a movie. People are so insensitive. I’ve also had someone say to me “I don’t believe you have cancer cuz you feel so well.” No i shaved my head, had a port placed, go to treatments, and feel like crap just for the attention. UGH! Let’s hang in there ladi
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Staylynn, yup! Hungry all the time while staying active. I go to the gym with my sister and I can even do more than her. None of my clothes fit and I'm bald so I don't go out that much. 2 more months until chemo is over for me!
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Even though I knew what to expect this third time round it still sucks. I was kept awake by bone pain last night in my lower back hips and legs. I got up and took another CBD drop and Tylonal. I was able to sleep then. Taste buds on the fritz today and dizzy. Yesterday and today are the crux days and then it gets better. Knowing the symptoms makes it less scary - I recognize them more now and know that I'm not just wondering what each ache and pain is....a SE or or me just being my old 54 self. I iced my lower back last night before bed. Day 5: Now comes the hives and rashes. My skin is getting a little itchy but I've been preemptive and used some cortisone cream last night. There's an emotional component to it all too I'm teary and weary and pissed. I keep this part to myself a bald boobless mopey wife is hard enough.
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rachel it does get tiresome, doesn't it? Get pissed as much as you want. Just wondering if you're taking anything Claritin-like? I read so many women here on BCO were taking it for so many SEs, I started popping one a day a week or two ago and will keep it up through tx. I'm wondering if it might help with your skin issues? Or even full-on Benadryl? I rarely take it just because of the drowsiness but that might not be bad at night.
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ingerp: yes I'll probably be doing Benedryl in a day or two as needed. The drowsiness part serves me well too. I take it before bed.
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I went to the American Cancer Society branch here yesterday and did the whole free wig fitting thing. They offer you a free wig if you have breast cancer which is amazing. Still, that was really hard. I appreciated that they offer support and this service but most of the wigs had very dated styles (think Joan Jett and Farrah Fawcett). They are kept in boxes in storage so they had a dusty smell that I remember my grandmother's wig having. I about had a breakdown. I ended up taking one home and trying it a little but I don't think I'll keep it. Like the other posts on here I find it itchy and uncomfortable and it doesn't really resemble my own hair or style at all. I took my mom with me for support and she suggested it might be easier than my beanies when I go back to work but I'm not sure. It feels costume-ish and fake to me. It was a hard rush of emotions getting through that. I was grateful for their time and offer and my mom and I laughed at some of the more ridiculous ones but at the same time it shoves the whole breast cancer thing in my face again and I do better coping with that in smaller bites and not having to deal with all of it at once. I compartmentalize. That's how I do this and stay sane.
I ended up ordering a scrub cap on Etsy with VW bugs on it. I'm an ICU nurse and this will be more appropriate for going back to work when I can. I decided it is a more authentic expression of myself than a wig that doesn't look or feel like me. I miss working. I just got out of the hospital again. Round 3 ( on June 20) was identical to round 2 with the TC. My immune system crashed and I was hospitalized for a neutropenic fever. I'm so ready to be done. My last chemo is August 10th. I am pretty scared. I'm 10 days out from round 3 and I still only have energy in 10 minute chunks. I tried to walk the dog yesterday and got a half mile before I had to sit on the curb and rest. I am just really hoping I can get through this last round and that radiation therapy is a little easier to deal with.
I have loved reading through these boards. I don't post a lot but it helps knowing we're all in this together. I haven't gained weight on chemo, I'm actually down about 5 pounds mostly because everything tastes gross to me unless it's really sweet. I have found I can taste those Premier Protien shakes pretty well and things like Italian ice. I had a friend loan me an Omega juicer and I have started juicing. Sometimes I tolerate that better than actually eating but I have to watch my neutrophil counts and put that up when my counts get too low. I really miss onion rings. I think that's been the most frustrating. I have been craving a big juicy burger and a side of onion rings but I know I can't taste it right now. That's my dangling carrot (ironically). After my taste buds recover from Round 4 I'm going to find some amazing onion rings and dip them in Ranch in celebration.
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I think celebrating the little progress points all the way through this is a really good idea for all of us. If onion rings were my celebration I know where I'd go here in Sacramento. Let us know when you get those onion rings so we can send a cyber woohoo back at you. I love when I get my taste buds back. For about a week I miss enjoying my morning coffee the most.
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I definitely will. This is day 11 post TC infusion #3 and I am starting to get some taste sensation back but not much. I think I read that taste buds have a 10-14 day life cycle so it may be a few more days before mine totally recover. It seems to be taking about two weeks post infusion. My energy is a little better today though. I got some laundry done and made it all the way around the block with the dog without stopping. You definitely have to celebrate those small victories. Coffee sounds fantastic!
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My manicurist is a ten year survivor and I think rubbing elbow with survivor warriors is the best medicine. Second opinion with new PS today. My smart baby sister is coming with me to help take in all information....chemo brain worries I won't be able to take it all in. I wish I had another week before driving to the Bay area for this but this was the only available appointment. My achy hips, knees and feet are keeping my awake on this round more than the last two. I don't know if its nerve pain or bone pain. It says in the big book to call the doctor if you have nerve pain. I'm tending to be less worried about things during chemo compared to during surgery recovery. Most of my worries never have come to fruition. It's a balancing act between vigilance and just living.
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I just went and had a second opinion with a different PS for my exchange this afternoon. Now that's how a plastic surgeon should behave! What a difference! I was putting up with such a disrespectful jerk! I trust that not only is the new doc very capable but I feel like he listened and got my concerns. I feel like I'll be able to work with him if any fine tuning is necessary. I feel safe. This is the hopeful/ rebuilding part. It should be like this.
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Rachelcarter, good for you! You have to be comfortable with your PS.
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Emac, I feel the same way with wigs. I have one, and it is itchy, and it doesn't feel right to me. It has been so hot here, I have only worn it a couple of times, so maybe I just need to get used to it. Everyone compliments me when I wear it, but I feel like you can tell something doesn't look right and I constantly have to push bangs out of my face. I am still trying to decide if I want to buy a short wig for back to work so it will hopefully stay out of my face, but that would be pretty out of character for me. But hey, I got used to bald, so maybe I can get used to short. I don't want to wear scarves at work because I feel like I am a walking billboard that says "Look at me! I have cancer!". My mom suggested a scrub cap too, but I work in an ER and I have never once seen anyone wear something on their head there, so I would look out of place there, too. The hair is one of the things that makes me feel like I am not myself, not living my own life any more.
I am having a moment that I am feeling really pissed off about this whole thing. People who have been around me a lot during this have figured out that I am getting by and am not the picture of a sick cancer patient, laying in bed, needing people to bring me things. So I am now getting a mix of still people saying "are you ok??" with a concerned look if they find me, say, laying down, or taking a break to sit. On the other hand, I also get people forgetting and saying/expecting things that are ridiculous or insensitive. I have had several people tell me "we're going to go get drunk as soon as you are done with this!". As if there is a certain day that everything will be over, my life will be back to the way it was, and I can just drink in celebration like nothing ever happened. It's all getting on my nerves.
Being in the middle of this, usually I just focus on what is going on at the time and accept it as reality and just move along through whatever my life is right now. Other times I still feel like "wtf? this is such bullshit that this is happening to me!".
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Out_and_about, I totally feel you. I had a big angry cry in the shower today because all of this is such bullshit. As I"m getting the hang of dealing with chemo, etc. I find that I go longer without thinking about this whole cancer business. But then it startles me when I remember and I get so angry. I have the same thoughts as you, I have one last round of chemo and even some of my closest friends are like "this is all going to be over", and I just don't even have the energy to correct them, etc. I'm tired. I also know what you mean about people forgetting that I'm dealing with all this and asking me things like babysitting their dogs while they are out of town. I'm sorry, it's been a long week and long day. Needed a place to vent.
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Vent away. I was raging this week too.
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I, too, am super emotional right now. My husband keeps saying "we're halfway through!" Yeah, yeah, ONLY halfway. I'm not at all the weepy type but the past couple weeks I find myself just suddenly with overwhelming urges to cry. Offset by bouts of rage. I just so want this gone, done, over. And it's so far away, with maintenance treatments until May, and surgery upcoming in the fall. It's helpful to see that others are at the same spot. Everything tastes awful, I'm sick of wearing a hat all the time, I wore a wig for 2 days and threw it back in the box. Oh, BTW, out and about, you can get the bangs on your wig cut. I did, at a wig shop, they did a great job but it's not my hair, it feels awkward, and I hate it. **rant over**
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I just had my first cycle of Taxol yesterday. So far, I'm not feeling any AE's. I'm just tired because I spent 10 hours at the hospital yesterday (mostly waiting, Friday is their busy day). It doesn't feel like chemo tired like when I was on AC. Is this normal? What should I expect
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I had my first Taxol on Monday. Tuesday was completely side effect free, but since Wednesday I’ve been literally writhing in pain. Broke down and called my MO, who prescribed Tramadol. I hate Taxol. Today pain is a little better, it’s day 6. I hope it will be gone tomorrow.
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Thanks, Inna. What kind of pain? Is it muscle pain? I had some pain near the infusion site yesterday. It felt like my forearm is sore where the Taxol is flowing. We put a hot pack on top of it and it helped but I developed some rash. We we're scared it was the Taxol so I got injected with more steroids. It didn't seem to be the Taxol though, thank Go
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It’s joint pain and muscle pain and bone pain. I didn’t have it on AC at all.
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Thanks guys, something about seeing other people feeling the same helps. And I'm with you on the hat thing. I was entertaining some delusion that people maybe look at me and think "oh it's someone who likes to wear scarves" not "oh that girl has cancer". Until I met a friend of a friend one day, and when the topic came up (doesn't it always!) she told me she figured that was what it was because I am also "covered in scars". Apparently my tank top was cut low enough to reveal the scar in my armpit, plus I had bruising from my most recent IVs, and unrelated poison ivy scars. There is no hiding. I am trying a beach outing tomorrow with a mix of friends who know, and strangers who don't. I am currently thinking buff plus maybe a straw hat, maybe they'll think I have my hair tied up in there. But it is hard to hide what is wrong with my body in a bathing suit right now.
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I definitely agree this was a week for venting and being more emotional. I'm letting myself do that in small bursts. I actually feel pretty good at this point, which helps me stay positive. The smoke cleared a little (I'm in S. Oregon) so I got out and walked the dog and I have been able to keep up with errands and housework.
I hear you guys about people that just don't understand. My trigger is the word "done". Several of my friends have tried to encourage me saying that on 8/10 I'm "done" since that will be my last chemo. Don't get me wrong. I am stoked about that! But this is not done. I'm following the radiation therapy thread now too so I can get a better idea of what lies ahead. I have started using an oil blend of castor oil and eucalyptus and lavender essential oils to encourage my hair to start coming back. I can't find any science to it but Pinterest told me it works. LOL. I had completely shaved it down so I figure even without science it can't hurt. There is no "done" with breast cancer in my opinion. Things move on but it seems like there's always a new phase to enter. I guess the positive in all of this for me has been that I have grown very passionate about recovering my strength. I was a haphazard exerciser and ate well but certainly wasn't a health nut. I'm more aware now and I am making that a priority for me. Not to fear...there is still room in my life for onion rings. This is going to happen!
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Innab2018, the pain might be from the combination of the Neulasta shot and Taxol. I think my MO mentioned that. I will let you know if I experience it too
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So glad I found this site so I can commiserate with people going through the same thing and have some of the same feelings I've been feeling. I've found that I'm a week in front of people and a week behind as far as treatment dates go so I completely get what you are saying about what emotions are hitting you. Yay, I'm halfway through, but I still have half to go. The second I start to feel better after a treatment and my hubby and boys see that, it's like they expect me to just be all better. They don't seem to get that I still get tired pretty easily and my stomach never feels good, always iffy. I have a shorter fuse than I've ever had and try hard to control it. I cry when no one is looking because I know things won't ever be the same after this is journey runs its course. By the way, hate wearing the wig because I feel like I'm just wearing a big furry hat. My kids don't want to see me bald, so I wear beanies and scarves. When they aren't around, I wear nothing on my head.
My next treatment will be my first Taxol treatment on 8/9 and I hope things go well. But who knows. And I still have surgery ahead of me to think about. So I've been looking a lot online on what options there are for me and that conjures up a whole list of questions. Sometimes I just get tired of thinking about all of it.
One thing that I do look forward to is going on some kind of vacation when all of this is done. I haven't been on a true vacation in three years. I live in Illinois and I desperately want to see ocean, sand, and palm trees.
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I had a big cry this week too! Just finished round #3 of 6 and was feeling overwhelmed by the thought of the second half. And all that follows with radiation, herceptin/perjeta for a year, and another surgery. If there's more after that please don't tell me!
Also, Rosie Red - I've been having the same beach fantasy. The only thing I can think about is swimming in the ocean! I'm thinking maybe Costa Rica
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This afternoon I was standing bald in my kitchen sorting through some mail when my neighbor wandered up my driveway and onto my back porch (I swear we have a front door with a working doorbell). My back door is solid glass. I froze. I have not told any of my neighbors about this (I just moved in and barely even know them), but I wear scarves and buffs outside all the time, so who knows what they've surmised. My husband was there and answered the door while trying to position his body to block the door. I looked at the guy and he did not seem to be noticing me, so I sprinted away and hid in the living room until he left. Who knows if he noticed that but he didn't say anything. Yeah I wasn't up for that whole conversation in my own house! (but does anyone in your family have it? no?? but you're so young!...)
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Innab2018, I have the same experience as you. Had the Taxol infusion last Friday, no side effects on Saturday. I did the Neulasta shot Saturday night and was writhing in pain when I woke up on Sunday. Been managing it with Advil. I will call my MO if it gets worse. Did it get better for you
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Popcornme, it did get better on day 7. Now I feel like I am recovering from a bad flu. Still some pain, but definitely manageable. Ask your doctor about Advil. I was told not to take Tylenol because it might mask neutropenic fever. Feel better! Just 3 more treatments!
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I think I read somewhere on this forum that taking Claritin helps with the pain caused by Neulasta. My doctor said no ibuprofen (Advil) also because its blood thinning which is not good when our platelet count is off.
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