Chemo Starting September 2018
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Brink- I'm so impressed with you running!
KK- I'm so glad you got to go camping. I know the hair is a huge jump though.
Warning - the entirety of the rest of this post is complaining. Sorry in advance, its just where I am today.
I was so good about exercise the first two infusions but the same day port + infusion 3 just sapped any will i had this week.
People talk about Taxol being "easier" and maybe it is, I don't have what to compare it to, but nothing this week has been easy. My lungs are super sore, which as an asthmatic makes me nervous but I called the doc and she's not worried because i'm not short of breath. Still Its making me super anxious.
My biggest problem is my neck. either something is swollen back there (either from the port placement or the taxol) or I injured it, but no matter how I position my head I feel shooting pains and numbness somewhere. Its like a crash course in how the nerves move through the body. Between my lungs and my neck, laying on either side makes me feel like i can't breathe all that well, so sleeping is an adventure. Then I finally fell asleep and random nausea woke me up at 5am this morning (my infusion was tuesday, and i had no nausea then. why now?)
Oh and i started shedding. I'm kind of ok with that.. it was the first piece i made peace with but with everything else its a nuisance
I'm hoping the port just made everything a little harder this week and that next week won't suck. I could use a few good days before the next one.
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MandM and Nisha - I am not getting a wig because I don't like hot or itchy things on my head but there is absolutely NOTHING vain about wearing a wig or mourning your hair. Nothing. Any more than there is anything vain about getting reconstruction after a mastectomy (which I did). This damned cancer takes so much from us. I think it's okay to do whatever you can to minimize that, and if that means a wig, do it! And even though I'm going the cap and scarf route, that doesn't mean I don't stand in front of a mirror looking at my nearly bald head and thinking, "My God, I look like my Dad!" I mean, I loved my Dad and I've always looked a lot like him, but I could have gone my whole life without the bald part, you know?
pcranky - Is there really such a thing as an easy chemo? I'm skeptical. I think the SEs are different depending on which poisons they put in you, but it's still poison. As for the neck pain, the back of my neck is super sore. I think mine may be muscle pain from holding my neck stiffly with the port. I think it's hard for me to shake the idea that somehow if I move my head too much, I'll yank the port out of my jugular. And die. Because when I worry, I go big.
Day 3 after my second round and I feel okay at the moment. But I kept notes the first round and Tuesday was my really bad day. I've been taking claritin and aleve since the day before my chemo, hoping I'll be able to avoid the bone pain this time. We'll see. I had a patient crochet a shawl for me, another bring me some bath stuff, and a third a box of caps she'd used and a heart-shaped pillow she told me to take to each chemo. It was an interesting and wonderful turn-about to have people I've been caring for shower me in love.
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stopping cold caps and getting a wig wasn’t an easy decision because I wanted my own hair at the end. But then I saw how popular wigs were even with non-cancer patients who just want a new look, it motivated me to just go that route. The difference is that I have to get a wig because of a disease and those people don’t, but oh well
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brink, I will be doing taxol weekly once I start it. (Haven’t started AC yet).
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I think this is the one place in the world where there is no such thing as complaining. We all know that every single statement is absolutely true. Cancer is the gift that keeps on giving. I really hope the neck problems resolved soon. I know it can be debilitating.
On the vanity/hair subject, my boys did the deed on Friday. I am wearing hats and scarves, and I might even go bald occasionally because it feels best. If I could find a wig that looks okay and is comfortable, I’d definitely wear it. But I haven’t had any luck yet. I took my boys to their soccer game and to the movies yesterday looking like a cancer patient. The looks of pity are really annoying, but I get strength from my boys being at my side and seemingly unaffected by my bald head. I wasn’t sure how involving them would work out, but I am so thankful that I did. They had fun with it, as did my girlfriends who joined us. We sang Sinead O’Connor songs all night.
On a happy note, I’ve accidentally discovered that one CBD cookie at bedtime eliminates night sweats. Or it has for me twice, so I will continue.
Wanderweg, how wonderful to be appreciated by your patients. Love comes from surprising places.
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Piksie - I swear if you put an ear cuff on and a couple of fake tattoos I'd assume you were doing this for fashion. You have such amazing bone structure - You look AMAZING shaved. And your sons are adorable.
Wanderweg ::: world class worrier hi five::: i've worried the same thing. Plus because during the port placement I could feel my heart move for a second (so gross.. ugh).. every pain is "did they damage something"
I didn't want to be someone who wanted a wig, and i didn't want to be someone who wanted an expensive one. But i fell in love with one because it looks like me and decided to do it. The plus to an expensive human hair one is that it feels lighter and more comfortable. The minus is OMG expensive. But I guess its better to worry about money than health so :::shrug:: Now i'd better make sure I wear it tho.
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Hello everyone, I have joined the community today and starting my TC chemo on Tuesday 25th. After diagnosis have gone through the analysis of ACT vs TC (I took 2 opinions and one onco suggested ACT vs other suggested TC). I selected TC considering it is less toxic (ha! what does less toxic mean and who really knows which one is less toxic). But for my peace of mind I selected TC. Looking at all you ladies going through similar experience and still keeping positive attitude gives me hope that I will be able to keep my mind strong. Wishing and praying for the best for all of us.
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Piksie you are beautiful!! I keep up with you guys even though I’m part of the May group. I’m waiting for my hair to grow back and boy is it annoying. I realized it’s because we have surgery dates, end-of-chemo dates, end-of-rads dates, but no date on the calendar to look forward to for when you can ditch the caps. It is truly an exercise in patience
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Hi to all in september group,
I'm so sorry you are going through this, it is so tough! BUT now it seems like 6 mo went by fast, and the outcome was worth it.I am from the March group, had neoadjuvant AC T(taxol switched to abraxane after 2 doses) chemo for very aggressive HR+ ca, and sx in August with a very good outcome, so I just thought I'd share. The chemo killed the aggressive ca, post chemo MRI showed complete response, no palpable tumor and post sx only very slow growing patches of ca cells not likely to metasize left. That was removed with wide clear margins, had oncoplastic sx, so cosmetic outcome actually is great. I was 49, premenopausal, very fit, long blonde hair, losing all that and not knowing what it would turn me into was sooo hard in itself, add the terrifying cancer aspect--I was a wreck, totally in shock and depressed in the beginning.
Acupuncture, exercise (every other week during AC), yoga and meditation helped greatly with my mental state. So did medication if I really needed it, I didn't feel bad since I knew it was short term.
I used medical marijuana (my MO said it was fine) CBD/THC 1:1 either with vape pen or sublingual oil and it helped greatly for pain, nausea, sleep, generally feeling crappy. Vape pen was great since its fast and short acting. I would wake up at 4am feeling terrible, couldn't stomach anymore pills, few puffs and bad feeling would melt away could sleep a few more hours. I didn't worry about THC causing ER+ ca to grow because chemo works best on fast growing cells and both oncologists reassured me that because my ca was so aggressive chemo would work well (this sounded so scary at the time). Also read that the 1:1 ratio could kill it--lots of conflicting info. Bottom line, the chemo really worked as they said it would.
Losing hair was huge for me! Went from bob to shaved/fun haircut to bald in one week after 2nd AC and for sure I cried. BUT its already back 9weeks pfc, (one inch of hair on my head now started growing during abraxane) and eyebrows and lashes(back to before, used latisse), hair came back everywhere thicker than before. Color started out grayish noncolor and now its back to original dark blonde.I can go wigless now but got used to them and have fun with it, people actually complement me and ask me about my hairstyles(wigs)
I had super regular periods, did not feel like I was nearing menopause prechemo. My last one was in April seemed like it went on and off for weeks. None since. Actually feel really good without them, do not miss the extreme PMS and headaches, cramps etc. I did have pretty extreme night sweats (totally drenched clothes, sheets) that started during AC and continued through taxol/abraxane. I think this was chemo/menopause combo. Those are much better now, I would call them mild hot flashes, feels like nothing after chemo.
For sure my journey is not over and that is the hard part--its so long, I have to start rads (very scary for me) and tamoxifen afterwards. But what seemed like the worst is already fading to distant memory and all effects of chemo seem to be disappearing.
I still have my bad moments where depression and anxiety briefly take over, how could I not ? However, its not controlling my life and not determining any outcomes. Acupuncturist always reminds me that you can't do anything about the past and you don't know about the future, its an unknown, the unknown can be something good. I got really frustrated with weakness and limitations and would complain, I felt like I couldn't do anything. Response I got was you are doing something, its called healing. The present is all you can really control, and you just do the best you can. We are all dealing with this disease that affects so many aspects of our lives and there is unfortunately no easy way out.
I realize my experience doesn't dictate anyone else's, but this site has helped me a lot and I hope this post helps someone.
Wishing you all the best in a very challenging time
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Hi all...mLghtn thank you so much for stopping by and sharing some perspective. It is really helpful. And piksie you look fantastic. I'm sorry to all for the SE, general shit, and lousy feelings but we will get through it!
I am day 6 after round 2 of 2/4 TC and feeling much better today. This cycle overall was much, much better than the first one. No GI issues since I only did the Zofran in the IV, took sennekot every night, and stuck largely to a liquid diet + bread. My bone pain was worse this time so I upped the Advil/alieve combo. Last night my shins were killing me. And I had a headache for about 48 hours which is abating. I can't concentrate on anything too hard.
Since my infusion I have walked a little less, shorter dog walks, he's pissed, but went to Zumba yesterday and yoga today. I also started a mind based stress reduction class on Thursday. I plan to do Zumba or yoga most days this week. That's the only time my bones didn't hurt, but then I'd get tired. Today I also went to an artisan/farmers market, rearranged our food drawers (we have deep drawers rather than a pantry), and I'm trying to do a few work emails before I head to Whole Foods. Oh, I went to CVS. Most importantly, I enjoyed it all and didn't feel like crap. That's what I hold on to.
My hair has been a disaster. As my husband just said yesterday, wow, that cold cap really didn't do much did it? (he then quickly said he didn't care, it'll grow back, all the right things....not knocking him). The only good thing is that It is pretty evenly thin up top. I don't have patches. I've only got 2 more so still stick it out as I think/hope it will help with regrowth. I not going to do a wig, I've just embraced caps. A friend gave me a hand me down from chemo beanies that is ruffled (that sounds awful but it is not) and I ordered a few more. I ordered a couple to work out in too, though for cardio I wear a baseball hat. I also love day of the dead, so found one with sugar skulls on it and ordered that too. Thank god they are cheap.
I will say that yesterday we went out for a late lunch/early dinner (oh yeah, my appetite has been OUT OF CONTROL), and the waitress as normal as could be complimented the beanie I was wearing and said how pretty it was. It was as if she complimented my bag or sweater. That was really nice actually.
I am paying careful attention to all the discussion re hot flashes. None yet for me.
Oh, also wanted to recommend the memoir "Flat". It just came out and is by Catherine Guthrie. She's a health writer for many women's magazines so you may recognize the name. It's about her journey through BC with her partner Mary and about her decision to not have reconstruction. She's a non-conformist but talks a lot about how male gendered breast cancer treatment and how it is about you taking control of our own body. I am thoroughly enjoying it and she's very funny and relatable. I also am going to read How to Help a Friend Who is Sick and then my best friend is making me read a non-cancer book. I did just finish David Bowie's biography but she says that doesn't count. Too much cancer at the end. Anyway, highly recommend Flat.
Enjoy the rest of this Sunday or the start of the week to our friends down under.
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Tomorrow is my turn - #2 TC. I will be 50% done after it. I look forward to it but at the same time I am not! I don’t care to be constipated, having bone pain and headaches, being fatigued, or having dry mouth, in general feeling like crap!
I wear a wig because I don’t care for people looking at me differently. I applause to all the woman who chose not to wear a wig but I can’t do it. I am not vain, but I would rather blend in with rest of them.
Mlghtn, thank you for stopping by, we all need some encouragement.
Piksie, I love your shaved head! You rock it!
Tigerlily, so good to hear that you are doing better this time around.
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Wow, y'all are kicking it to the curb! I wish I were anywhere as active as you are. To be honest, I've only been out of the house a handful of times, mostly to pick up medicines. Of course, the first10 days I was utterly out of it with nausea/vomiting. I read somewhere that migraines and a history of motion sickness predicts this with chemo; maybe that explains it. I've been better over the last 5-6 days, but since yesterday have been vaguely nauseated again. Wondering if it's one of the meds I'm taking or just that I'm finally back on real food instead of broth. I lost over 10 lbs in the first week. Since feeling a bit better I've been trying to just catch up with household responsibilities. I have about 300 emails to figure out and a month of mail to go through...ugh! And two very demanding cats who think my sole job is to pet them all day.
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I'm humbled by your compliments. Thank you. You are all BEAUTIFUL creatures! STRONG, RESILIENT, INSPIRING, etc… I come here every day for inspiration and I haven't been disappointed yet. Again, thank you.
Fairchild, how many infusions do you have left? Perhaps your medical team has a few tricks up the sleeve to make them more palpable? I pray they are easier on you and will celebrate loudly when you are finished!
JNKK, hoping for an uneventful day tomorrow and fewer SEs than last time!
Tigerlily, I hear you on the appetite. Even through eight days of constipation, I'm eating everything that passes in front of me with little to no consideration for nutritional value. I'm probably up 5 lbs on day 12 of infusion #1. I'm assuming that I won't have an appetite as I get further into treatment , but if I'm wrong, I'll have some work to do when this is over!
BeingPositive, Welcome! Best of luck to you on Tuesday!
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hi friends,
I had blurry vision after my first AC treatment. Once didn’t seem too worried since I am not having headaches, double vision, etc. going to eye doc and having brain mri to be sure. Starting to freak out and so fearful if vision isn’t just a side effect and instead a symptom it has moved to my brain. Anyone else have blurry vision after AC?
Thanks
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Hi. I'm new here. I was diagnosed a month ago, got my port Friday,and start neoadjuvant TCH on Thursday. I am nervous and scared about it all, especially losing my hair,but I'm thankful to finally feel like we are doing something about it.
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Hi all, finally resurfacing day 7 after AC#1. It would have been sooner, I think, but I came down with a bad cough and sore throat over the weekend and and am now on antibiotics for a sinus infection. If I could go back, I would definitely have delayed by a week and not started chemo at the end of a bad cold... though who knows if it would really have made any difference. Anyway, aside from the sinus infection symptoms I feel pretty well back to normal so that's not so bad.
On the period note - I'm 42 and my cycles have been increasingly irregular for the past 2 years, but always still showing up. I got my period the day of my first infusion (thanks body). According to my notes from my first MO meeting, I should expect my ovaries to be out of commission 6-8 weeks from starting treatment.
Fairchild - the migraine/motion sickness connection makes sense to me. Morning sickness, too. I am prone to all of them and seem to have suffered more with nausea than many on this board on AC, despite getting the "big guns" of Emend.
Heather - I also had blurry vision, almost like I couldn't focus. It was mostly in the evenings on days 5, 6 and 7. It felt related to the steroids to me and resolved once they were out of my system.
Good luck to everyone starting new rounds this week. And lots of sympathy for the hair issues!
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pcranky - I feel like I walk more than I run, but hey, better than nothing! Sorry to hear about your neck pain. Port placement was kind of rough on me too but it started to feel better after I peeled off the so-tight-it's-pulling-my-skin dressing. I shed a lot too, but I did always wonder how I would look if I were bald , so I guess this is my chance.
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beeline, thank you so much!!!! I feel so encouraged that I wasn’t the only one with blurry vision! So thankful for this board! Blessings and joy to all!!!
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wow, you all are staying so active. I am bit skeptic if i will be able to continue my walks and if at all i will like to go out. I live in a community and have not even shared the news with others. I feel so sad with the thought that everyone will feel sorry for me and their looks will change and how will i go in front of anyone when i loose hair. I am 40 and my husband is very very supportive. I have tried to tell my 7 year old about upcoming changes with minimal information. But i am really scared of being social and not sure how i am going to handle that. It feels very supportive to talk with all of you about it. Thank you for listening and being there.
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Blurry vision can be a se from chemo. The drugs go through your whole body, including the fluid contained within your eyeball. I was on TC & found it to become harder to read & watch tv by round 3. They say to have your eyes checked 3-6 months after chemo as it can cause damage. In my 2013 group there were a couple of ladies that had damage . But as always talk to your Dr about it. You guys are rocking the bald look! It feels so good to have that first one over & done with. Keep up the good work.
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I have also noticed blurry vision and I’m not on AC. I’m sure it’s just an unfortunate, temporary side effect of the chemo. But it is always a good idea to get it checked out for peace of mind.
For those who can’t be as active during these trying times, it’s nothing to feel guilty about. Everyone is different. Our bodies do things differently. You should be fine with whatever you are able to do. Even if it’s a 10 minute walk, hey you did something and that is a huge accomplishment! This is your time to heal, not push yourself too much to exhaustion
I see number one concern for most woman is losing hair. Mine too. I guess we just have to accept this as another unfortunate side effect of this terrible disease. My fear also is that if people see me bald, they will see me as sickly and feel bad for me. I don’t want that.
Lookup09- welcome! My biggest suggestion to you will be to make sure you do everything you can to combat the possible side effects. This can also mean taking medications a few days before chemo, eating or not eating a certain foods the week of chemo and on chemo day that will bother you later. Make a daily medicine chart. There’s a lot of great advice on here about controlling SE’s or talk to your MO or infusion nurse in detail about it all
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thanks so much everyone!!!!! I had a regular eye appt this morning and no signs of tumors on optometry side! PTL. Two days until my mri and then just waiting for results! Trusting it comes back clear too! 🙏🏼
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help needed! I try sure I have a parotid/salivary gland infection. Right side swollen on jawline & down the neck. Do u think an urgent care facility does diagnose/treat, or should I go to ER??
Called oncologist, and she said it’s not related to cancer treatment. Anyone else have an issue with it from the dry mouth problem??
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hi to everyone. I started my first TH treatment Sept. 6th. I am 1/4 way through this chapter. We are having a head shaving party tonight. Thought I could hold out a little longer but the hair is starting to fall out. It feels like I have no hair now. Weird to explain that to my family. So the worst side effects are the nausea. Changed medicines last week and that seems to help more with less side effects. I have some really cool scarves at home (for wearing around your neck), but hope I can also learn how to wrap them around my head. I have some beanies already but they are kind of dull compared to my scarves. Might as well make it as much fun as you can, right? Such a journey we are all on. Amazing how many women I keep hearing about that have BC. Good luck to everyone out there.
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yes Heather my vision seems blurry as well- only one round of AC though. Please let me know what the eye doctor says. I think for me part of it is going back to work and I had an upgrade my computer. And honestly I am loathe to see another doctor right now. Hoping that it’s just temporary for you. Best of luck my dear
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Hello to all, I haven’t checked in a few days but I’m so glad I did today. I feel so inspired by reading through these posts. I’m on the other side of my first A/C treatment. And doing OK. Went back to work today didn’t quite make a full day but I made about seven hours.
Piksie- you are rocking that hair! I feel what you’re saying about the looks of Pity that you get when you go out. It’s just starting to make the rounds and my company about my diagnosis since my return to work. And it’s so very awkward. I feel like I am getting drained by other people’s feelings. I mean if I feel well enough to go to work I should be allowed to focus on work and not on this disease. There’s no way I could say this to my coworkers, but I wish they would back down the on the job compassion just a little bit. Hate to sound harsh.
I am finally getting used to my port. I still feel it, particularly when I’m doing my physical therapy, but not all the time. I can’t wait to get the stitches out and this bandage off my neck.
I will be shaving my head this coming Saturday with a few girlfriends. My ridiculously expensive wearing looks great and is ready to go. I too have many hats and caps.
Nisha- I couldn’t agree more with following the instructions for battling side effects. The only thing I would do differently next round is start the MiraLAX a little sooner, but I didn’t know which way would go. my understanding that was side effects can be different to to the cumulative nature of the chemo, can anyone clarify that for me is a little further along?
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Hi all, sorry to hear about the vision issues but hoping all temporary! Luvbngma, cannot help but I would call your primary. Why wonder? And all I conquer on the exercise do what you can. If you cannot do it, you cannot do it and that is ok. Self care takes many forms.
I have a question re bone pain. Mine is worse this cycle. Mostly my lower legs and shins. Hurts in the morning and then less after exercise (hence why I am doing my best) and then at night again. Aleve / Claritin is not helping. I am going to call as it has been worse the last 2 days. I read that neulasta is released over 10 days. So hopeful it will subside. Does anyone know if pain is cumulative? I am on round 2/4
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M AND M- my optometrist said my eyes are two steps worse, but cant sayif it’s just aging or chemo. Thankfully after a very thorough exam, she says eye health is good no sign of any tumors on this front! So thankful. Still have mri scheduled on Wednesday to be sure, but today was a big relief. I also realize today I’m so often panicking over every possibility of bad news instead of trusting God to carry me through as he has since the start of this entire journey! Thanks girls!
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Got a shorter cut...wondering when to shave it....12 days out from first AC...no shedding yet..
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