Chemo starting October 2017
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update.. Spent the day on the couch just resting yesturday. They pumped.me so full of steroids that it was impossible to nap. But had good sleep last night. Woke at 4 am for a pee (guess im drinking enough) rested till 530 and had to get up. Still have headache this is 3rd day. Gonna have to break down and take something for it. Had a complete and utterly hissy fit on facebook due to a personal message x2 about a BC game to raise awareness.. That has nothing to do with BC. And i totally lost it. Wrote back and said... Im titless and soon to be bald do you think i need this? Lol then wrote on my wall about thinking before you spread spam. Grr. Tomorrow im off to emergency departmartment for a needle called G-CSF or Filgrastim. They want me supervised for first one incase I react again lol. I did warn my MO that i was the side effect girl.. Always happenes. Do far I have proved that statement correct.please pleAse dont react to this one lol.
Please enjoy your friday 13th lol stay safe!
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Hi Agatha - I'm in the August group mostly, but in October I am on Taxol, so reading on here too. Also TN. I was looking into microblading, but I just assumed that my MO would say no. Thanks for the post - I'm going to call about it today. My eyebrows were doing great on AC, but just did Taxol #2 yesterday and they're definitely thinning. Ive learned to deal with the baldness, but do not want to walk around without brows. Bottom eyelashes are also disappearing
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MamaFelice- I will definitely look for you on the cold capping thread. I would love to PM you with questions, especially since you will be a little bit ahead of me on this journey...thank you! I'm meeting with my MO today for the first time, so I will get my chemo regimen today. According to my surgeon, I should be ready to start chemo within the next week or two, but I am going to ask if I can at least wait until after Halloween! My sister is visiting the first week of November so I'd like to push it off past that, but we'll see what MO says. Also, I'm hoping to do the cold capping at my cancer center. Theare currently in the process of setting up Dignicap and I'm just praying they will be up and running by the time I start chemo.
AgathaNYC- I was looking into microblading too. Please let us know how you like it, if you decide to do it. We moved to FL last year from NJ, but I lived in NYC prior to that. I really do miss it there and sometimes wish I was still there while going through all this. Aside from friends and family, things like finding a person who does microblading/tattooing on mostly cancer patients......not sure I will find it down here, but thanks for sharing. I will ask my MO today if he has any recommendations.
LisaRxCincinatti- It's great that you are feeling so good!
MrsWinnie- Hoping you feel good today and things go smoothly for you tomorrow!
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I was actually looking into Microblading before I was diagnosed because my eyebrows are so uneven. It's good to know that I might be able to get this done during chemo. The key is to find a great microblading pro!
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How are everyone's fist rounds going? I get my port Monday and then start the week of the 23rd. I'm already nervous. Would love some real life accounts of how it went. Bone scan today. Unnerving because I've been having bone pain😳
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Hi Joyseeker,
I am feeling very fortunate.
Infusion day:
My first dose dense AC infusion was this past Monday October 9. Took a Xanex before I left home cuz I was nervous. Brought my q tips and lidocaine in my Chemo bag and applied it to my port as they were preparing my cocktail. Never felt it.
I likely will not take a Xanex beforehand next time. With the Ativan for anti nausea I ended up sleeping through the entire infusion. I will not be nervous for round 2.
I was famished afterward. Went out eat. Really tired when I got home. Took 2 Sennekot in case of constipation. (Never happened). 1 Ativan before bed for nausea (Never happened) Claritin before bed to prevent bone pain from the Neulasta (Never happened). And frequent mouth rinses with salt / baking soda solution to prevent mouth sores (Never happened)
Day 1 Tuesday: was not hungry. Forced myself to eat orange jello, pumpkin cookie, Cheese and peanut better crackers and a McDonalds vanilla shake- just tried to have something in my stomach throughout the day. Drank water non stop - Salt water rinse whenever I entered the bathroom for any reason. Neulasta shot triggered as scheduled. It was a non-event.
Day 2 Wednesday: Felt like a "lead-head". Not really a headache, just like a heavy head and horrible brain fog. Really tired. I am working through this but work from home. Had to take a 20 minute break several times for a quick nap. Concentration was hard.
Day 3 Thursday: Awoke with a dull headache and again - lack of concentration. Worked in the morning and went out for breakfast at noon. Started to come around after eating.
Day 4: Friday. I am at 100% today. Concentration is back, no headache and able to work the full day straight through.
I attribute my "luck" to my hybrid regimen (thanks to the wonderful people on this board) that I stuck to religiously.
FOR ME, in order of importance:
1. Water Water Water Water Water
2. Anti Nausea: 1 Ativan at night, compazine during the day at the first slightest hint of nausea.
3. Constipation: 2 Sennekot every night at bedtime did it for me.
4. Mouth Sores: Salt Water / baking soda rinse. Did this at least 8 times a day.
5. 1 Claritin at night for bone pain from Neulasta. Now my MO says there is NOdata that supports this theory but has many patients that swear by it so he has no objection if I do the same. So I do.
This is "do-able". Fog brain was the worst of it for me which makes it hard for me to work - but hey- I'll take it
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Hi Simbobby - thanks for the play by play. May we ask what Chemo your on?
Winnie, I'm so sorry your having so many problems. I stay off FB - some of the stuff drives me crazy. I'll take a peak every-once-in-awhile. The Filgrastin you are taking sounds a lot like NEULASTA ??? (which is what I will be taking)
I spoke to my MO today and asked if I could have the microblading, He said Not for me - because of my skin issues, afraid of infection. Same for acupuncture.
I was walking my dog in the woods today and a briar scratched my hand. I put Neosporin on it, but its red and ugly - and I havn't even started chemo yet.
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Happy Friday the 13th, everybody! I got my hair cut off. Here's a before and after. It's longer on top than I wanted, but my hair is dense and a bit wavy. No way I was going to get that Jean Seberg / Mia Farrow look I wanted. I was really positive and chipper about it until I actually sat in the salon chair. Then the waterworks started. My stylist misted up a bit, too. She also gave my wig some love so that it moves a little more naturally, now.
A new side effect showed up last night, mouth sores. I've been swishing with baking soda, and using Biotene, but still they came. I called my oncologist to see what else I could do. She gave me a Rx for a steroid mouthwash (it's Decadron in a saline solution.) Hopefully this will do the trick. I'll let you guys know.
I have also had indigestion and constipation for the last few days. I am positive that this is because I am COMPLETELY off the wagon with the eating plan I had been on. I just can't stand up to the cravings I've been having. Willpower has left the building. I haven't had cheese in years and I've been eating it twice a day for the last several days. I'm not supposed to be eating any sugar and I've polished off 2 Entenmann's cakes this week. I hope I can nip this in the bud and get back on track with eating right and exercising. Also, my emotions have been up and down all week. I feel like I have PMS although I am going from peri-menopausal to full on menopause.
Hopefully my next update will be less of a pity party. Thanks for listening.
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AgathaNYC, I feel your pain. I, too have been 'stopped up' and I'm pretty sure hell set up shop in my esophagus! So far (thankfully) no mouth sores. My poor belly is bleh. Insomnia (which I NEVER had before) has taken hold, and I feel grouchy all the time.
I am so thankful I have you ladies to vent to. This process is a challenge, and together, we will prevail. Love to you all! G'nite.
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I only have a quick second, though I want to send so many loving words to each and all of you!!💗💗💗
A nutritionist that is a BC survivor told me that this product saved her tummy--
https://www.amazon.com/Heathers-Tummy-Organic-Acac...=sr_1_4_s_it?s=hpc&ie=UTF8&qid=1507986628&sr=1-4&keywords=heathers+tummy+fiber
I just ordered it myself and plan to use....my chemo starts next week. So sorry I cannot share how it works yet, but give me a week and I'll be reporting!! Enjoy your weekends!!
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Thank you so much for the real life look at what my life on chemo might look like. Helps me stay calm. Since we are on the tummy topic I'm wondering about probiotics through treatment? I take them religiously now as I have a touchy tummy. Do you think they would help?
Great news to add. I had a breakdown in the bone scan. Radiologist had pitty on me and let the technicians tell me it was clear. I'm very happy. I am having lots of bone pain so I'm very relieved. Maybe it's just my fatigue/anxiety.
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I've had little feelings of nausea since my first couple days. I'm thankful for that. My appetite is up and down, mostly down as I find some foods taste odd or not like anything at all. Soup has become my favorite.
Today is Day #10 since my first infusion. Second one coming on Friday this week.... so far it's been some achy joints. Claritin worked at first but not for long. I simply take Advil if I start feeling super sore. It like hit me out if then blue on Day #7. I had trouble walking from ho sore my legs were. I was at work so it took me for a loop. Thankfully advil was suggested and it worked. I only take as needed. On Day #8 I was pulled out of sleep by a muscle spasm .... nothing really worked except for walking around on it until the spasm passed. It's crazy that the SEs I'm having are mostly from the nuelasta and steroids and not directly the chemo. Anyway, then yesterday Day# 9 mouth sores. I'm doing all the things as recommended by my MO and still mouth sores. I just applied baking soda directly to them and they feel much better. And finally my hair is starting to shed. Not badly but I can tell.
All in all while I've had some minor issues I've been okay. Sleeping for the most part. Work has been a bright spot in all of this for me as I don't have to sit and feel sorry for myself all alone in my condo. So I just need to get through this coming week heading into infusion #2. Such a long journey. Hope it continues to have only minor hiccups.
Have a lovely weekend ladies in arms. I'm pumpkin picking today so I'm totes excited.
xoxo
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Day #6 and the SE hit me yesterday afternoon. Mainly wanting to sleep a lot and did take a anti nausea pill this morning. I hadn't taken anything prior except the steroids told to take Day 2-4.
Also starting struggling with the emotional part of this dx. I went into anxiety mode over germs, not feeling like my husband is helping at home enough and that I am going to cut off my boobs eventually! It's just so major! I have never had a surgery before and have been feeling healthy until doctors told me I have cancer.
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Hi Jennifer522 - I'm sorry to read of your SE's. I am the opposite, BMX first then Chemo in Nov. I take anti-nausea meds for chronic migraines - they knock me out. I've been on steroids for years, that alone has its SE's. Its all an Emotional Rollercoaster. Wishing you feel better
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I start chemo for TNBC 10/30. My oncologist wants to do 4 dose dense taxotere/carboplatin and 12 weekly taxol but I am trying to get him to do dose dense taxol. I would rather be done in 8 sessions than 6 and the thought of 16 is making my anxiety horrible. I barely eat or sleep. My port placement is 10/27 and I am dreading it. Hoping to have it put in my arm not my chest as my chest is still horribly sore from my bilateral on 9/18.
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Hello lovely co-journeyers. I had my first TC Oct. 12th.
I did cold capping with Arctic Cold Caps, my husband diligently assisted. They haven't been used much at my hospital and everyone is really excited to see if they work. I feel we did a good job with them. Now we wait.
I started having the worst heartburn of my life as treatment was ending. I feel a bit cheated to not be able to conjure dragonfire at will. Tums and milk have been my best friend but finally the Omeprazole is starting to help.
I can't stand the steroid. I have 2 doses left. I fall asleep unexpectedly for a couple of hours but can't get a full night. My emotional state feels solid.
My day 0-3 anti-nausea, I have a low grade headache that will not go away. It's manageable but so continuous the drain is growing. Not sure which drug is the culprit but they are both done tomorrow.
My nausea is minimal. Now that the heartburn has settled I'm just a little backed up. It's easing with a softener and lots of water. I am concerned about nausea soon though as my insurance would not approve the as needed nausea meds.
I'm taking Claritin and Aleve for my neulasta pain. Aside from a little pain here and there, it's holding so far. Lumpectomy site had stabbing pains on and off and the skin around the surgical site was pink and annoyed. It's not infected. I imagine the chemo in there attacking all of those rapidly growing cells, both good and bad.
Overall, I feel like I have a bit of flu. I can handle this. I am so impressed with all of you who are working through this. There is no way I'd even be able to stay awake a whole shift or sit in my chair. Still, I can get through this.
May your journeys be gentle.
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Fishingal and MamaFelice - thanks for the support on my messed up gut. I just ordered the Heather's Tummy from Amazon. Thanks for the suggestion :-)
Joyseeker! Great news about your bone scan giving you good news. It really is such an amazing feeling when we get any kind of good news these days.
EightOf8: Pumpkin picking sounds so great. I love this time of year. (I went to the haunted house at Eastern State Penitentiary a couple of weeks ago) I hope your mouth sores are healing and not bothering you too much. I think the steroid mouth rinse that I got from my oncologist is helping mine, but they aren't gone 100% like I dreamed. They are definitely less painful. I'll try putting baking soda directly on them like you did and see if it helps.
Jennifer - I hope you're having a better day today. But even if you aren't, please come here and vent. I'm trying to keep my emotions on an even keel but it's been really tough some days
Shaneswife - I hope your oncologist is receptive to your plan of doing dose dense taxol. Or if the longer treatment is truly better in your case, maybe he/she can work on convincing you it's worth it - maybe that will help with your anxiety. I'm triple negative, too, and am having a hard time following through with everything my oncologist recommends. I keep asking her to explain "why" so that I can get on board, too.
JadeShiva - I'm so sorry your insurance company didn't approve the anti-nausea drugs you deserve. My insurance company denied a couple of things for me, but the RN case manager at the insurance company actually worked to get the denial reversed, at least on one thing so far 9at home Neulasta injection.) At first I was wary of having an "advocate" who is paid by the insurance company, but I am slowly starting to trust her. Do you know if your insurance company offers that? I didn't know mine did until a customer service rep I was talking to about a separate thing told me about it.
Have a good Sunday, ladies!
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Met with my MO on Friday and mapped out a plan for chemo. I will have ACT (4xAC and 4xT). I will go on 10.18 for my port placement and then start on 10.27 with chemo. I've also decided to give the cold capping a try. As much as I am dreading this process, there is a part of me that is ready to get started. The sooner we start, the sooner we will be finished!
Thank you again to all have shared to a detailed account of their experiences and SEs. It definitely helps to take some of the anxiety away from the unknown
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Hi ladies. I'm 36 and I got diagnosed with breast cancer on Oct 3rd. I'm starting neo-adjuvant chemo tomorrow with the hope of shrinking my hormone negative, HER+ tumour. I'm not 100% certain of the chemo cocktail yet, but it involves a session ever 3 weeks, for 6 total sessions
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I'm now 12 days post AC Chemo #1 of 4, and physically I still feel fine. I've been walking 3 to 5 miles every other day and also trying to up the intensity level so that I can get my lungs and heart stronger. I'm also doing the stretch band more often to build up my arm muscles. I'm determined to do everything in my power to end up a cancer success story. As long as I'm feeling good, I'm going to take full advantage because I know that this chemo is eventually going to knock me on my butt. Until then, each day I feel good is a gift.
I've also been really good at sticking to the diet of lean protein and fruits and veggies recommended by the ACS. In terms of sugar, my old nemesis, I allow myself one chocolate covered strawberry per day, because I need to add calories and just cannot choke down one more chicken breast. I've lost 10 pounds since my DX, which is a no-no, and I need to find other ways of adding calories that do not involve chugging milkshakes or downing a plateful of fries. I just can't go there because it's a slippery slope, and if I don't make permanent changes, I'm going to die, if not by cancer, then via heart attack or diabetes.
So while physically I'm way better off than I imagined I'd be, psychologically, I'm still struggling a bit.
Thursday afternoon, I went to the hairdresser and got a really short haircut. I wanted to get it shaved but the hairdresser talked me out of it. I don't think that she was convinced that I was actually going to lose my hair, because at the time, all my hairs seemed to be fully committed to my skull. That haircut and afterward was a very emotional day for me, probably the lowest I've had since the DX. NOTHING has been normal in my life since 9/25, and I just sobbed and felt sorry for myself and begged to go back to my "other" life. Well, no magic genie granted my wish, so here I am.
Fast forward just 3 days and my fickle hair is starting to abandon me at an alarming rate, and ...and it's okay. I've grieved for it already, and now I'm ready for it to be gone so that I cross off the "Go bald" hurdle! There's no way that my hair can start coming back IN until it's all the way OUT, so now I'm impatient for it to just all fall out, so that I can move on, emotionally.
In prep for the baldness, I've been wearing my chemo hat full-time now, so that it'll catch the falling hair and so that I can get myself and my family/friends used to seeing me in it. I know that walking into work tomorrow is going to be really difficult, but I also know my co-workers will make it all right by making fun of me, which is exactly what I need from them. I have tried on a few wigs, but it felt like a Halloween costume, and not in the sexy bar wench way, so I'll stick to hats, caps, or nothing at all (at home). I think after the initial shock of people seeing me this way, every day will get easier and easier.Another thing to mention: Friday night, friends stayed til midnight. I was exhausted by the time they left. Even so, and even though I'd only gotten 4 hours of sleep the night prior, I started getting anxious again. I couldn't listen to my directed meditation because my husband was asleep, so I caved and took an Ativan. I'm glad to say that I was able to sleep through the night. Saturday I listened to directed meditation again, which helped calm my stomach, and I was able to sleep through the night again last night without Ativan. So I now feel like I have two things that will help. And if those don't work, I'll consider yoga or massage next.
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Lisa I am losing weight too since all of this. Down around 15 lbs. Only a few more lbs and my bmi will drop to the overweight instead of obese. So it's not like I didn't have the weight to lose.
Been a rough weekend. AC went out yesterday morning and it's 80-85 degrees in our 4th floor apartment. It's suppose to be cooler tomorrow and we are moving to a larger ground unit next weekend. So we have a guest room.
Had to call the on call nurse tonight. Getting temps between 100 and 100.7. She said if it goes higher or I feel worse, take a pill they gave me for fevers. I already had a appointment check up with the NP tomorrow morning, so will discuss then. Plus being hot doesnt help. Fans in windows hopefully will cool it down tonight
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Welcome, Dya. We're here for you and will walk through this together with you. I, too, start chemotherapy (4 rounds of dose dense AC) tomorrow morning. Let us know what chemo you end up getting tomorrow. Lots of tips on here already, and many have been documenting each experience for the rest of us so that the fear of the unknown can be cast aside. Sending you love and hugs as you prepare tonight and tomorrow for your first round. You're not alone. Give yourself grace for each day, one day at a time. Praying for you now that tonight you would be comforted and get rest and peace.
Thank you to EVERYONE for taking the time to post and respond to one another. It is incredibly helpful for so many of us,and I am overwhelmed by the kindness and vulnerability in your posts.
Jennifer522, I'm so sorry this weekend has been so rough. How are you feeling? Any change in fever temp? What pills do they give you for fever (or do you mean ibuprofen/Tylenol)? Praying for you now that coolness will be in the air for you tonight.
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Seemaryrock & Dya,
Thinking positive thoughts for you as you start chemo today. Believe me, you are in the hands of experts, but if anything feels 'off' let them know ASAP!
Dya, I too am ER-PR- & HER2+. I started TCHP last Tuesday (once every 3 weeks for a 6 cycle treatment plan), so if you need any support with it, I'm your girl. The day after chemo, I was shaky, but went to work Thursday & Friday. I rested all weekend, and other than 'digestive issues', I think I am ready to meet the week. Another thing....my tumor/mass/cancer monster thing has shrunk a bunch since Tuesday! I could feel a little 'burning' sensation during and after chemo. The nurse told me that not everyone feels it, but that it proved the chemo was working. Woo hoo! Better shrinking than growing!
Ladies, have a fabulous day! Love & hugs to all!
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Joyseeker-- CONGRATS on bone scan clear!! Huge sigh of relief there I'm sure! With cancer becoming part of our stories, so does becoming very in tune with our bodies. My husband tells me I'm a hypochondriac but I just keep saying "I'm in tune". Always go with your gut when something doesn't feel exactly right. Great to have results that tell you the pains you are feeling are not related to cancer!
Seemaryrock-- Thank you for starting this thread and for your most recent post that resonated to all of us! Good luck to you and dya tomorrow! I'm right behind you with a Wednesday start. You got this-- positive thoughts and basque in Christ's love (I'm a faith girl)!
Trinity411-- Glad you have a plan! Port surgery is an easy one, two! Read through these threads and get ducks in a row before starting chemo and then make it happen! Go girl!
LisarxCinnci-- So glad first treatment went well! So happy to hear about all your healthy habits-- 5 mile walks and model eating! I believe these things make a huge difference! They did when I received chemo many moons ago and I plan to implement them again this round! Keep up the good work and reporting back to us!
JadeShiva-- Following your posts carefully on this thread since I am receiving TC like you. I went out and bought some Tums yesterday!
Jennifer522-- I'm praying for you and your conditions. I'm sorry for the unfortunate timing of you AC. Hang in there!
Fishinggal-- Major WooHoo is right!! Nothing better than knowing that the treatment you are receiving is indeed working!! Wonderful to here!! Impressed that you were at work right after treatment, but glad that you took the weekend to rest! Nice job! Let's hope all our chemo drugs hunt down and kill those cancer cells! Yay!!!
Well, I'll be spending my next two days getting last minute things done before chemo Wednesday. Deciding how to approach my pre-chemo eating plan. Any of you doing anything different day(s) before chemo day. I've heard the following--carb load? 2-3 day fasting (only water/tea)? Liquid diet of smoothies and broths? Just curious to see what you all may have tried or considered. I'm gonna try and squeeze another hour or two of sleep in. Again best wishes and big hugs to all those starting today and any day his week! 😍
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had my first treatment wednesday.. ThinknI said already but still have headache just wont go away. i can numb it with Tylenol but not kill it. Last night had pretty good sleep. Woke on the hour drank water and was able to return to sleep. Headache better this morning seems to be in my jaw today not behind my head how strange. Have had 2 of my 7 or 10 needles of filgram think the name most use neulasta. It boosts bone marrow to up immune system i beleive. Anyway lol first one was done at hospital incase of reaction and it went fine. Yesturday a nurse came to the house and i had a complete and utterly panic attack... Omg what gives? Lol i laughed afterwards but omg think i can safely say PTSD here... Oh and my nose ugh full of crunchies and bleedes if i touch it. Head is shaved in prep of getting messy.. Son shaved his head too what a cutie (hes 16). Today i pray just to feel better...
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dya & seemaryrock: GOOD LUCK on your first day!! we are all with you in spirit.
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Port placement today. Anyone else lose weight between diagnosis and treatment? I had some to lose for sure but stress sure is a powerful thing.
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seemaryrock, the fever medicine I was mentioning is called ciprofloxacin (antibotic). They have me keep a cycle of it, in case I get a fever and I am told by the phone nurse to take it. Saves a trip to the ER if your not that bad off.
Blood work done this morning and my WBC, Platelets and neutrophils too low for chemo. So chemo put off a week and will be re-checked next Monday.
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"I feel a bit cheated to not be able to conjure dragonfire at will." That made me laugh.
I am lurking a lot and taking it in gals. I get my port in three days and am anxious to talk to the oncologist and figure out what I will actually have and when and how long. The waiting portion of all this is killing me. I'm very much a planner. I hate not knowing anything.
Hang in there to all who are going through crap!
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Joyseeker - I did. Though not a lot. It is definitely stressful, though for about a week after surgery my appetite wasn't great either. I've tried to look at it as a silver lining for now. :-)
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