Chemo Starting September 2018
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JNKK You are rocking both looks. I hope I look half as good as you with my head shaved!
Piksie - drunken headshaving sounds like a party to me
As for the heart rate, the only thing i'm able to tell from yours is that you are in way better shape than I am. You are also sounding remarkably chipper after first AC which gives me hope for when I get there. (Taxol first where I am)Sadlynew - I totally get where you are coming from with coldcapping. I couldn't do it either - all i'd be doing is obsessing about how much hair i was or wasn't losing. this way, when it goes, it goes, but i won't be hypervigilant, which is terrible for my mental health.
I
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Hey, everybody, y'all are awesome warriors! I'm 11 days into the chemo and finally feeling a little better today. Apparently chemo does NOT agree with me, to the point that I literally could not keep anything down. My doctor prescribed a rub-in kind of phenergan, since I couldn't keep the pills down, but even that had little benefit. As a result, I've lost a little more than 10 lbs already. When I saw onc. on Thursday, I was in severe pain from bone pain and also neurological pain from a previous cancer kicking up again. He loaded me up with IV pain meds, vitamins, and fluids before I left his office.
Doc also prescribed anti-nausea patches, but they haven't arrived yet. He also kindly and gently suggested marijuana. If I followed him (and I was REALLY sick while I was listening to him), there needs to be a 1 to 1 ratio in the THC to CBD in the substance, and he thought inhaled consumption might help the most. Unfortunately, it's not legal at all in my state, but one of my kids, bless her, is happily trying to arrange for some to arrive at my house via a friend.
After I left his office Thursday, I stopped at the pharmacy to pick up the pain meds. Standing there, I started to have severe chest pain. I broke my sternum in a car accident 10 years ago, and the doctor then warned me that it would never completely repair itself. Anyway, it felt like the TE was rubbing on the edge of my sternum, so that when I moved, it caught on my cartiledge. But the people in the pharmacy were so freaked out by my pain they called an ambulance. They confirmed I wasn't having a heart attack, and I went home to throw up some more. Honestly, this has been a horrid week. Afterwards I wondered if it were a panic attack, but if I moved just the right way I could get that pain in my chest to stop. So I'm thinking it was TE-related. Regardless, it was one weirdness to be dealt with.
So....I've done nothing but see the onc, throw up, and lay around the house for the last week and a half. Since I live alone, that means 11 days without human contact. Friends and my adult kids were calling, but I was just too nauseated to talk over the phone. Has anyone else had to deal with really severe nausea? Any suggestions for managing it? I was taking a phenergan every 4-6 hours and it just didn't touch the nausea. Here's hoping the patches come in and help, and that I can get some relief with MJ. Hoping all of you are doing better than I am, and I have to say your haircuts are adorable!!!
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Oh Fairchild, I'm sorry you're having such a rough go of it! I'm glad you have a sympathetic doctor (and a kid trying to hook you up!) but it is awful that you should have to go to those lengths for some relief! Have you tried Emend? Apparently it's the really big guns when it comes to anti-nausea. Here it's called Aprepitant and you take it before chemo so it is already in your system. Hope you find something that works soon.
Love the haircuts and wigs everyone has shared! And thank you for all the useful supply lists. My first AC is today! I can't believe it's actually here. Luckily I seem to have finally kicked the bad cold I've had for the past week. The nurse told me they wouldn't delay it unless my blood counts came back bad or it was clearly a bacterial infection requiring antibiotics. I was planning to work a half day and go straight to the centre but decided at the last minute to stay home. I've just come back from a run (don't know when I'll feel like a good one again!) and then might take a nap if my nerves don't keep me awake.
Hope everyone is hanging in there!
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Welcome all new folks! Fairchild, I hope you are feeling better.
I go for round 2 tomorrow. I felt good the last week, went into the office 3 days and stayed over one night for meetings and even had 2 classes of wine. Continue to eat very well and switched to a liquid/soft diet today to ward off constipation. Also talking Colace.
About 60 percent of my hair fell out since last week. Will be curious what the MO who is a huge proponent says tomorrow. I have to run my hand through it to get it out, or it ends up all over my shoulders. Should not have worn a pink suit jacket to work today. I worse head scarfs/hats yesterday and today.
Oh, and I got my period the night before #1. Was super awesome to my trying to change a land hooked up to the Paxman and IV in the hospital bathroom 🙄 got my period AGAIN today, before chemo #2, over a week early. WTH. I need one positive to come from this whole thing and that’s is not it.
I have been doing yoga still and walking a lot but need to hit the gym harder. I live in the area with all the gas explosions - my house is fine and we have oil - but missed yoga Saturday and the Y we belong to was closed until today and I had a long work day.
Leave at 6:45 tomorrow for blood work, consult, chemo, and genetic testing!
Have a good night ladies.
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Appointment with MO tomorrow but not before my “wig” appointment with a local shop here. Got to get ahead of the treatment. Also had my first “fill” in the TE today. Starting to feel human (like) again.
Thanks for all the feedback re kids. I’ve decided to tell them everything once I know my treatment plan. They do well with knowing the full plan and I can have a (tentitive) end day for treatment.
Did I mention how absolutely scared I am? Hoping to keep pushing forward and also hoping for lots of strength in MOs office tomorrow.
I’m so glad I found this group of awesome women. Y’all rock. Let’s keep going.0 -
Hi ladies - started my first round of chemo yesterday. Is anyone else doing T then AC? I had a terrifying allergic reaction to the T yesterday and was told I will just be given injections to prevent the reaction with each of my 12 rounds of T. Had my port put in yesterday too. I am icing my feet and hands to prevent neuropathy. I found some recent studies that have shown cryotherapy may help while taking T as well to prevent neuropathy. I also have an autoimmune disease and don't want this cancer to cause any additional issues for me long term. Just curious to see if anyone else had reactions. Thanks to everyone who is sharing their stories!!
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Hi everyone. I started TC on Sep 14. Have not been feeling too bad but the extreme muscle pain had really kicked in. It is very hard so sleep. Have any of you other lovely ladies ha this and how did you manage it?
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Fairchild - I’m so sorry you’re having such a rough go of it. I hope they put stronger ant-emetics in your next chemo round. Do you think maybe you strained your sternum vomiting and that’s why the TE is hurting against that spot.
Tigerlily - I can’t remember, are you cold capping?
Sadlynew - The fills help. I hated my TEs, though, even fully filled. Couldn’t wait to get them out of me. Good luck with the appointment with your MO.
I had my husband buzz my head down to the nub when my hair started falling out in earnest yesterday (day 18). Now if I lean over the sink and rub my head, it falls out like rain.
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hello all, port being placed 25th of this month. DD AC and 12 T is the recommended treatment. Need to shrink before surgery. Chest wall attachment possible because when I lift my right arm where my tumor is 6 O clock right breast it indents underneath. Mri shows no skin thickening. CT scans clear for anything else. Breast mri shows nothing in left and no swollen lymph nodes either side, no tumors other than the one in right breast. I am young and scared and shocked. Lots going on including my houses roof failing. Having to have treatment out of state with family ( mother in law, she's great) away from my husband while house is being repaired from water damage. Both of us are struggling emotionally. I am terrified of ac chemo, need to know it's doable not so scary. Need to know I have good outlook
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piksie -I missed the question about lyrica. I’m taking the lowest dose I can to take the edge off the pain. It helps some. I do feel woozy at first when I take it, so I hold off on my morning dose until after I’ve driven in to work.
Radagast - I’m sorry you have to be here. I’m on a different chemo regimen (TC) but I’ve found that no matter what chemo any woman here is on, it’s doable. Not fun, but doable. The first round is the scariest because of the unknown. Ithelps to have the support. Hopefully someone on AC can answer any specific questions.
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Hi, sitting here at MGH on the Paxman, done with all the infusions. I really hate it, but I saw the MO and he said I am not atypical with how much I lost and the Paxman will help with regrowrh keep at it. I have a thin scarf pulling it down. And after today 2 more to go.
He says I can take the Ativan as needed for sleep but to try with the melatonin first. I need to give it a better shot. I am a lot more optimistic about controlling other side effects this time. And sticking to a more soft diet though they say protein, protein, protein.
I have to laugh because today’s soup had chorizo in it. I gave an eye roll and they all laughed so I had a chicken salad sandwich since I don’t eat cold cuts which was my other option. Organic hand made charcuterie may happen but not that.
Hang in there ladies!
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Rabbit, welcome. Hoping for the best! We all handle these regimens differently, but I am on day 7 of my first DD AC and have had very little (if any) chemo SEs. I took all the anti-nausea meds as indicated and ended up bloated and constipated, but absolutely no nausea and maintained a fair amount of energy. Unfortunately, it's impossible to predict as some women here have not felt so well. My fingers are crossed for all of us!
Yesterday was a tough day for me on the pain management front. I moved from Gabapentin to Lyrica in hopes of fewer SEs, but absolutely NOT! OMG! Not only should I have not gone to work, I should have stayed in bed! I was completely spaced out all day with a horrible headache; paranoid that someone was going to ask me something that required thought. I looked plastic in the mirror. Red-eyed, completely glazed over, almost psychedelic. My whole body was tingling/numb. It was scary. I'm either going back to a small dose of Gabapentin to take the edge off, or I'll just have to suck it up. I'm seeing OT today to address lymphedema and cording, and now nerve pain will be added to the talking points.
Tiger, cute! That one made me smile. Thanks! I hope it works for you!
I'm loving all the buzz cuts. Sinead ain't got nuthin' on us!
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My phenergan patches have arrived! In addition, one of my daughter's friends is coming over tonight with that special drug that my doctor thought might help with the nausea. I feel kind of weird, given that I've always been a very law abiding person, but I would do almost anything to get this nausea under control. I have been taking the ativan the doc prescribed, but I don't think it helps the nausea....it just knocks me out, so that I don't feel it. Which is ok, I guess, given that I live alone and am on leave from work right now. But still, I'd rather be conscious and able to stay a bit on top of the laundry and be able to do some food prep. Anyway, here's hoping tomorrow is better with the new meds on board.
Y'all seem to be doing better in the nausea department, although I'm surprised about how many of us are losing hair already. Mine is not budging, but I figure it'll fall out after the next treatment on Thursday next week. I have to say, though, everyone looks great with short hair! I've decided to keep my very short pixie after I finish treatment-- I like it that much.
Hang in there, warrior women!
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Had my MO visit today! AC and T. It’s was I had predicated. I really liked my MO, more so than my first introductory visit. First session is October 9 so . . . That technically bumps me to the next group (which I posted tonight). Lol. But if it’s ok, I may just stick around. I love the strength inherent in this group. I’ll be a little behind everyone but I promise to be just as supportive :-)0
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Hello to all,
Had my port put in today and I can’t figure out if it’s painful or just really annoying. I couldn’t do my PT exercises because it feels so odd. I’m sure it will simmer down, in fact down the road I may wish for something that’s nearly annoying instead of truly yucky. Back to work tomorrow, mixed emotions there but I want to be as active as possible. I’ve been spinning my wheels as I’ve been off of work the last month since the UMX. Chemo starts on Thursday. I’m nervous but I just want to get this wagon rolling, sooner I start sooner finish.
The nurse who was working with me during the port placement today was telling me sort of scary stories about her husband’s pain because of the Neulasta. She didn’t know anything about the Claritin and said the only thing that helped him was taking Tylenol simultaneously or right before the shot. Not sure what’s what for me, but I think I’ll know before the end of the week
Fairchild sorry about the nausea, please let us know if the new meds work.
You all are so brave. I really do look forward to reading these posts.
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M-and-M37 - I also had my port put in today. It sort of hurts but the tylenol is helping.
They gave me fentanyl and versed and I dreamed in a twilight state that there was a cart with baby penguins and almost asked the doc for one before I realized this probably was a dream.
Infusion was much easier in the port but boy am I exhausted
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wanderweg- thank you for the encouragement! All the best in your treatments!
Piksie- I hope u continue to enjoy little side effects, thank u for sharing about how things are going for u. It's the fear of the unknown that has me. But as everyone keeps trying to tell me one step in front of the other.
Trying to stay positive but go through many moments of being overwhelmed. Afraid to take the steps but know I must. Dry heaves tonight. Might take oncologist up on anti anxiety medicatio
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Radagast - It is understandable to be nervous, but don't suffer. If you need the anti-anxiety meds take the doc up on it.
Once things get started it gets easier. even feeling bad gets easier. You can do this..
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Hi all, just reporting in from 24 hours post my first AC infusion. The infusion itself went fine despite everything starting late so not finishing until after 7pm. Towards the end of 2 hours, I started to feel very weird and antsy -- I'm guessing that was due to the steroids, but with all the different drugs it's hard to tease out cause and effect! I wish I could echo Piksie and KK on the no/low SEs, but I felt pretty rough last night, achy, flu-ish and very nauseous. I even put a bucket next to the bed just in case. The lorazepam def helped with sleep (don't hold out if you need it Radagast, though I must say I am already far less anxious now that the first one is over!).
I felt pretty lousy this morning, too, but haven't thrown up and even managed a half hour walk after lunch. I would feel like I'm already turning the corner except that a nurse is coming over tonight to give me the Neulasta shot. It wasn't originally prescribed, but I talked to my MO before the infusion yesterday and he agreed to it because I am worried about infection esp since I will be back at work next week. Hope the bone pain doesn't make me regret it!
Piksie - yikes, hope you find the right combo and get some relief soon!
Fairchild - let us know if the phenergan patches ad "extracurricular" treatment work!
Sadly - please do stick around! I've been lurking on the August chemo thread and find it quite helpful for looking ahead
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pcranky- thank you for the encouragement, I know for sure I’ll ask for some anti anxiety in my premeds.
Beeline- hope u feel better soon, I think my anxiety too will lessen with one under the belt.
Set to start first AC treatment on the 27th at 10am. Come in day before for chemo class, blood work and hormone therapy shot to put me into chemopause. 25th I get my port. Big week next week. Just have ultrasound to confirm size this Friday. Everyone has been nice. I definitely recommend hooking up with a nurse navigator if ur oncologist offers one, she has been wonderful and helping me deal with things happening to me outside the chemo chair.
Thinking of all u and looking forward to celebrating with all of u too once we finish. Looking forward to that victory bell
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On the wig follow up - I went back to the store for adjustment on Tuesday, now it fits better and less itchy. I am liking it, but I still can't used to it. I feel like I have a banana peel sitting on my head!! I am missing my hair at the moment.
Fairchild, I hoping you are able to eat more now that you are feeling better. Please keep us updated on the anti-nausea patches.
Tigerlily, so good to hear from you, you have been MIA for awhile. I thought your picture is very cute.
Hope you have a better time dealing with the side effects. Sadlynew, sorry that you have to be here. The unknown of how you would react to chemo was really scared to me too, but I now know what to expect. Hang in there. Please do come back to say hi from time to time.
Radagast, like wanderweg and beeline said, everyone reacts to the chemo differently, but it is doable. I am not going to lying, it sucks, but we are doing it for the sake of ourselves and family.
Piksie, how are you doing today?
M, I took Claritin the day before chemo, but my bones were still hurting. So this time I am taking it a week before my chemo, I am hoping it will make a difference. If not, Tylenol will be my friend for the duration of bone pain.
Beeline, I hope you feel better soon.
Hard to believe that it is almost time for me to go back to get more poison injected in me. I am so not looking forward to it. Wanderweg, good luck on Friday. Then it's my turn on Monday.
Wish all of us luck!!
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Hi all, thanks JNKK for your lovely message to all. Sentiments echoed! I am doing good Day #2 and much better than last time. We switched up stuff as I mentioned in the last post and took Sennakot last night and am doing a pretty soft diet. My appetite is dying but that's ok! I took one Compazine instead of Zofran and will probably take one more for the sake of it, but no nausea and no constipation! I put some miralax in my smoothie this am for good measure. The neulasta is going to go off in about 40 minutes, so will remember to sit still for it.
Wanted to share this recipe. My eggplants are having a resurgence now that the weather is cooler and eggplant parmigiana (tomato sauce) as healthy as I make it is probably not a good idea. Is honey ok on chemo if cooked??
Hang in there all, the anticipation is worse than the reality. And my Amazon buying is slowly waning. Though I spent a bunch of money at staples today - redoing the home office since I'm mostly working from home right now. And waiting to see how much chemo costs against my deductible. That may kill my shopping, ha ha.
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tigerlily - every time I scroll past the photo of you in the cold cap, I giggle. You sure are being a good sport about it!
MandM - I took Claritin but still had some bone pain, but I was told to take an Alene and that knocked it out. This round I'll start taking alee when I get the neulasta.
Fairchild - my son came by tonight with some of the same meds. He made them in brownie form. They are in the freezer now. He made me laugh when he said, “I made them triple chocolate chunk, I hope that's okay."
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Tigerlily, those eggplant brownies look delicious!
At exactly 3:45pm PST, my hip and lower back started screaming! I thought I was out of the woods but was shocked to learn that it is Neulasta. Day 8! What the heck??? Now that I know what it is, I can relax a bit. I thought I was dying! I've taken Claritin and Tylenol; hope it kicks in soon!
I had a very good meeting with OT yesterday. I got my lymphedema education, order for a sleeve, etc., and went over stretches and massage to get rid of the cords. But more educational was the new take on nerve pain. After Gabapentin and Lyrica, I am going to suck it up and deal with it; wait it out. By allowing the painful areas to be engaged, accelerated nerve growth and healing take place. I spent yesterday and today with the back of my arm exposed, and although it is very uncomfortable, I can already feel an improvement. I feel kind of like I won the lottery in a weird, almost sadistic way.
Advanced apologies for the poo talk, but I've been putting out miniature snickers and river rocks since Wednesday and feel like I'm going to pop. I look like I could easily be well into my second trimester. I'm now on day two of Miralax and waiting impatiently for Amazon to deliver Senna (same day – gotta love it!) I plan to work tomorrow, but I'm wondering if I'm going to be able to leave the house if the Senna does its job. And I hope the Claritin kicks in BEFORE the Senna does!
Tons of lessons learned for round #2!
Hope you're all having a lovely evening!
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Thank you for the posts. It’s helps me cope. My chemotherapy got postponed because the incision on my breast had opened up wide. I had an oncoplasty and a reduction on the unaffective breast. My Oncologist took one look at the wounds and sent me back to the plastic surgeon on Friday.He decided to bring me in on Monday to clean the wounds and stitched them closed. The funny thing about my wounds, they were on the unaffected breast.. I will receive my 1st dose of Taxol and Herceptin. I was told to bring frozen Elasto- gel mittens and Natura socks hopefully to prevent neuropathy. I couldn’t think about a cooling cap.I’m hoping to make it to my grandson football game on Friday evening but that may be wishful thinking after Taxol and Herceptin.
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Good evening ladies,
First day back at work-it went well. I worked a full eight hours and am frankly exhausted. Everyone was super sweet and I found myself talking very openly, (typically I play things pretty close to the vest) about what next steps are for me. I could tell some folks were uncomfortable but oh well. When I got home tonight my newly placed port was itching like crazy. I finally took a look under the bandage and saw that I’m having another reaction to the surgical tape. I’ve re-taped it with the paper tape I use for my drain after my UMX. Looks sloppy but I’ll pretty It up before I go to work tomorrow.
Tomorrow is the big day! My first AC treatment. Nervous as a cat but just wanting to get on with it.
Wanderweg what is the name of the medication you took in addition to claritin for Bone pain? I want to be prepared. I also have some special rice crispy cookies to help with nausea.
Pcranky- I also had the same twilight cocktail when they placed my port. No penguins for me though.
TigerLily- True true anticipation is worse than reality- I hope that’s my reality over the next few days. I will definitely ask for something for anxiety in the mix during chemo.
Are any of you ladies having trouble sleeping at night? Any suggestions as to what I might ask doctor for? I’ve heard mention of Ativan a few times in the threads, I’m not familiar with that. Is it a good one?
Thanks for all the solid advice!
Sweet Dre
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MandM- I took aleve with Claritin. Really worked well for me, so I’m hopeful it will again.
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MandM, good luck tomorrow! Unfortunately I have not found a solution to sleeplessness.
Asknomore, I can’t tell for sure when your first infusion is, but good luck! I hope things continue to heal well.
Pcranky, totally forgot about the baby penguin dream!!! 😂
Beeline, how are you?
I might be a Chatty Cathy tonight. I’m sitting straight up in bed because I’m afraid the laxative will work before the Claritin/Tylenol for the pain and I won’t make it. 😳 What a crazy life we have!!!
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MandM? What is this sleep you speak of?
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Thank you to all the beautiful women sharing on this board! I'm a bc newby, diagnosed because I participate in a government funded program here in Oz (Breastscreen) that provides free mammograms for women over 50 or with high risk, and excellent follow up.
Within a week of being called back after my last mammogram, I was in surgery. What an adjustment! I am a healthy active working woman, and getting my head around handing priorities to treatment for the best part of the next year has been huge. Also adjusting to having something wrong with me that brings limitations. I'm so thankful for amazing support of every kind from medical people, family, friends, church and work colleagues. And from my husband, who is a rock.
I've had a lumpectomy and axillary clearance, and with a fair bit of care the affected arm is going reasonably well. I'm now heading into chemotherapy(4x fortnightly AC, then 12 x weekly T). So I'm now nearing the end of the first AC cycle, and feeling not too bad, with some energy today to start catching up with myself. I've been hungry for the first time! Day 4, I doubted whether I could do it. That was the low point, with exhaustion, joint pain, difficulty swallowing, sore mouth and severe nausea. I think I slept 20 hours out of 24. Fatigue and draggingly persistentnausea are my biggest challenges, along with sun sensitivity, which an issue coming into the southern hemisphere summer. I've decided not to worry about hair loss, as I'm confident I can rock a head scarf. I may get a wig for days when I just want to blend into the background.
I can't believe the amount of maintenance time needed, as well! Moisturising, oral care, infection control. Everything takes LONGER! It pays off, as I've avoided severe problems so far. As others have said, juggling the digestive system means paying close attention so the pendulum doesn't swing too far either way.
I have this month off, so it's interesting to read others' experiences of working during treatment, as I'm not sure how much I'll be able to do. What a learning curve!
Love and prayers for all on the journey,and your loved ones. and thanks for your company on the road:-)
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