Chemo starting October 2017
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Port is in. Uneventful. Although they tried on the left, not successful. Very quick and successful on the right. I've lost six pounds since my mastectomy. Four are probably my breast, I'm like a DDD. I hope once I worry less and get started with treatment I can maintain my weight. Port site is achy. Not too painful. And I'm hungry!!
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Well, one down! Yay! My brain is tired, so I will write a little, then lie down for a bit. Here is how my morning went: I put lidocaine cream on my port one hour before arrival. Put saran wrap on it, then a bandaid to keep the saran wrap. If you use anything else, it might absorb into that, so saran wrap it is! I showed up and met with my MO to discuss how I was feeling, etc. Then, they accessed my port and flushed it with saline, then gave me two anti-nausea meds, separately. The first one was coupled with a steroid, and it went just fine. The second one, I had a reaction. I felt like my heart dropped and all of a sudden I felt like I was breathing in a sauna room for way too long. They stopped the drip, which stopped the reaction, and waited about 10-15 mins. Then they gave me IV benedryl (which made me feel drunk and tired) and a little more steroids. Then they tried the second anti-nausea med again, and I was totally fine. Then came the "red devil" (as they call it) the "A" of the AC chemo. That lasted about 10 mins. It went fine. Then, they gave me the "C" portion of the AC chemo, and that too went fine. Went and got autumn squash soup and a green goddess salad at panera, ate that in the comfort of my own home, rinsed my mouth with salt and baking soda (added to water), and took my dog for a 45-min walk. I started to get a headache and the slightest bit of nausea. Finally broke down and took compazine for nausea, because I couldn't tell if the headache was making me nauseated or if there were two separate things going on. I called my MO to see if I could take advil or tylenol for headaches and which one was better. I've had so many drugs today; just want to play it safe. Ate a small meal and now I'm munching on ritz crackers with peanut butter and drinking lemon ginger tea. Nausea is gone, but headache is definitely there. Will take something soon for it. Super tired, so I am going to lie down. Thanks for cheering me on! I will try to respond to you again soon! I have a feeling with the steroids, I'll be up later tonight with not much to do and no ability to sleep!
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I used this to cover the port with lidocaine. Just seemed easier than Saran Wrap. For nausea I am finding 1/2 Ativan working better than the full pill of Phenergan they gave me. I was worried about Ativan since it's a anti anxiety drug too but a 1/2 was fine.
Now with low wbc I am really worried about getting sick and being around people even my child or my cat. Hate theworry and hope neulasta is going to kick in any second! I haven't had any bone pain, so you wonder is it working
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petey111 - welcome to the gang. good luck with the port placement. let us know what kind of chemo you'll be getting.
seemaryrock - yay! one down. I don't know about you, but I felt a true relief to get the chemo show on the road. I hope your headache improves. I had a killer one that first night (plus my ear - the outside cartilage part - was ultra tender... so weird!)
Jennifer522 - hope the Neulasta gets your WBC up soon. You ned to cuddle your cat and have fun with your kid
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Shaved off what was left of my hair tonight. I was starting to feel like Pig Pen being trailed by hair. I'm ready for #2 already. Bring it on!
Thanks for the hint about covering up the port after lidocaine. I'm sure that this was covered in my last chemo session, but I'd forgotten all about it.
I'm starting to mull over whether to reconstruct or not. My initial reaction was no, then I thought why not?, then I read that 20% have issues with reconstruction, and now I'm thinking no again. What a decision to have to make! Glad I didn't have just a week or so like most people. I guess that this is the advantage of having neoadjuvant chemo.
Jen522, good luck with the WBC. Be sure to eat those greens!
Seemaryrock, congrats on getting the first one under your belt. Drink, drink, drink!
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Mrs. Winnie: what exactly do they think caused your reaction?
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So, I have one treatment under my belt and I think the anxiety of what to expect was worse then the actual treatment. There was no pain when they accessed my port and everything went well. The first night was a little weird....I woke a few times with a racing heart and a few other times with a wave of nausea, but I kept up with my anti nausea meds so nothing came of that other than a little icky every once in a while. Saturday (day 3) kicked my ass. I was SO tired I could hardly get off the couch. Sunday I felt better, and today am back to myself except for a nagging sore throat. I hope each treatment goes this smoothly.
How long was it before you started losing your hair?
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littlebee72, my hair started falling out about 11 days into treatment. Everyone is a little different, but it won't be long now. I also will confess that the thought of losing my hair was also worse than the actuality. I'm wearing my chemo caps, and most of the time, I can just forget about it.
Think positive, keep drinking, and keep that body moving!
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Newly installed port ladies....how tender? I feel like I was punched in the neck. Almost more tender than my mastectomy. Thoughts?
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Joyseeker, my port hurt SO bad afterwards. I think it was my collarbone that hurt mostly, I could barely lift my arm. It does go away after 3-4 days. Mine has been in a week and I don't even know it is there!
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Thank you littlebee. They tried on the left. Couldn't get it. Moved to the right. I was very grateful for the sedation. Double neck punches. Then the port site itself. Dr said "you'll be a little tender". Ummmmm. Hurts like heck!!
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Hey ladies, sorry it's been a while since I posted last. I didn't have a good weekend, although in hindsight it wasn't chemo related so I guess that's good. I was having a pretty good week up to Wed when I started bleeding. I thought it was an early period, which I read can happen on chemo. But then in the evening things kicked up a notch and I passed this huge clot, like the size of my hand. My whole hand. If I hadn't had sex in 2 months I would have thought I was having a miscarriage. I thought it was my lady parts making a last stand or something. I didn't think too much of it because I was still feeling fine. Just bleeding a lot and lots of huge clots too. I even drove myself on Friday morning to get some labs done. Then on Saturday morning, bleeding still continuing very heavy with lots of clots, I nearly fainted in the shower. Hubby drove me to the ER. My hemoglobin had gone down from 11 on Friday to 8 on Saturday. They gave me 2 bags of IV fluids which helped my dizziness some, and sent me home with iron pills and other pills to try to stop the bleeding. Those didn't work. On sunday I couldn't even sit up in bed without feeling like I was going to faint. Back to the ER, this time by ambulance, and then 3 units of blood and an emergency D&C, I finally stopped bleeding and my hgb which was 5 when I got there went back up to 8 again. In hindsight the blood and d&c should have been done on Saturday, but they were all "your hgb is borderline for a transfusion" blah blah blah. So now I'm home again, very tired because I pretty much haven't slept in 3 days, and feeling weak.
On the positive side, my chemo reactions had pretty much all dissipated. The bone and muscle pain from the neulasta had pretty much gone, and I was feeling great. I'll do labs again this Friday to make sure my blood is back up before my 2nd infusion next monday.
I've started losing my hair. I noticed it last night for the first time. I was staring at myself in the bathroom mirror and ran my hand thru my hair. I ended up with a handful of hair for the first time. I didn't have to pull or anything. That's day 15 for me. I noticed in the shower this morning too that I can pretty much just pull out my hair at will. It just glides right out. I think I may have to give myself a brazilian since this will be the first time that I can even do it myself and it will be painless. I think I will be shaving my head this coming weekend too.
Anyway... thanks for reading my story. I hope everyone is having a much better week than me. I wish us all well on our chemo journey!
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Scaligirl, I worry about that as well. I was on birth control for heavy periods, but since my tumor was ER+/PR+ I had to stop taking them. I would pass huge clots like that during a normal period. Now I am scared to death they will come back with a furry. I saw an OB/GYN who said oblation is out of the question, and a hysterectomy is not in the cards right now with chemo already started. I am hoping the chemo puts me in menopause because I dont think I could take those heavy periods along with the Chemo SEs.
Rest up! I am 6 days post first treatment so I am sure in about a week I will be shaving my head as well!
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littlebee, I know what you mean. I am worried this will happen again. I was totally ready to tell them to take everything out if the bleeding didn't stop on sunday. I know that if it does happen again I am totally going to insist on it, chemo or not. Hindsight is a wonderful thing, so at least I know my tolerance for bs is much lower now. Take care!
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Hi Everyone- I started A/C chemo yesterday and am feeling up and down. The treatment itself went well. I didn't feel much then my husband and I went to lunch. At about 5:00 is when I really felt the nausea even after taking compazine. That lasted until about 11:00 pm when I could finally sleep. Today is much better but just feel drained. I have a question for everyone. I have shoulder length hair but very thick. I didn't get a chance to go to my hairdresser to get it cut shorter and now I am worried if I go now during treatment I might put my hairdresser at risk. Do you think it is ok at this point to go get it cut? I worry about the chemicals and the nurses were telling me you will have red urine(which I do) and red sweat. Anyway, I don't want to put anyone at risk. Thank you!!!
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I would imagine you can call and ask because I'm by no means an expert at this point. But....I read that after 48-72 hours you are ok with fluids. So I think you'd probably be fine if it's after about three days from your treatment and it might not even matter since it's hair and not a fluid. Again, I would ask though.
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Hi everyone, still in a bit of fog (probably just stress of starting chemo and all). I hope to respond to several of you, but for now I wanted to respond to Tri-lady7: I, too, started yesterday and went home and ate and felt pretty decently. Then got a humongous headache along with debilitating nausea. I, too, took compazine, but I didn't take it right away because I was trying to figure out if one was causing the other or if they were both a separate thing, and I called my doctor; well, he didn't get back to me right away, and I think I waited too long to take it (I read that compazine doesn't help with the nausea you already have, it only helps to prevent further nausea). Boy, last night was rough. I finally took Tylenol and Ativan/Lorazepam, asked for prayer from a billion people, and conked out on my bed. I woke up with no nausea and no headache and felt like it was Christmas morning. I, too, feel a little "off" today. I already took a compezine in the morning as well as a Tylenol because I felt the "twinge" of both of them coming back. Regarding you going to get your haircut, I would call just to double check. I personally think it's ok, but I love that we can call with any of those kinds of questions, and there's never a dumb question. I still feel like it's Christmas morning as long as I don't feel the way I felt last night. Yuk! I got my Neulasta shot and already took my Claritin ahead of time to prevent bone pain as much as possible. Take care everyone, one day at a time!!
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Hi, TriLady (are you a tri-state area neighbor?) - if you want to rest easy certainly call your team about the haircut, but I can tell you that I had a haircut a week after my first AC chemo and my oncology nurse was fine with it. At least a few of us on this thread have gotten the shorter haircuts after we started treatment.
Congratulations on getting the first dose under your belt yesterday. I hope you keep feeling better.
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Did my chemo talk yesterday. Apparently since my doctor was in a hurry he mentioned the wrong treatment. I will be doing 4AC DD and I requested DD Taxol *4 rather than the 12. The nurse agreed that although the side effects may be worse for people with my anxiety level the 8 seems more manageable. I lost 8 pounds in 3 days worrying about 16 doses. She said if I can get 6 of the 8 done they will be happy but they would prefer the 8. She said my pathology report showed no signs of lymphovascular invasion as well as no signs of the cancer anywhere else in my breast other than the 1.9cm mass. According to her they both believe there is a very good chance it was a very new cancer and it likely hadn't sent sells off yet
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I have lost close to 30 pounds since diagnosis on 8/22/17. Around 10 pounds in boob weight(large E) and 8 in the last 3 days from the stress of being told I had to do 16 rounds(now 8 since they approved DD Taxol) the rest I am sure is a result of the swelling from surgery being less and stress.
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Hi Seemaryrock-sounds like we are both on the same schedule. I'm so sorry to hear how rough your day was yesterday. It really hit me hard in the evening as the nausea was just enough to be painful but not enough to throw up. I'm so glad you are feeling better today! Wow what a difference for me as well. I just keep thinking in my head (only 3 more times of this one). I guess we just have to take one day at a time. Your right I am just going to call them and see what they say about the haircut. Ever since my DX I feel like I question everything. My prayers are with you during this process.
HI AgathaNYC- I am a tri-state neighbor from NJ but southern NJ. I used to live in North Jersey and worked in Westchester but always love to go into the city when I can. I actually chose my user name because I love to do triathlons and was in the middle of training for a big one when I was diagnosed. Unfortunately I couldn't complete it as it was right after my surgery. But I do intend on going back! Thank you for your advice and kind words. I feel like everything I think about is related to this BC. My prayers are with you as well. It looks like you just started this as well. I wake up each morning and praise God for each day!
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checking in with everyone, and giving update: Good luck to those that have just started their treatments. I have been reading about those of you that have had reactions, etc and SO sorry about that.
I am back at work this week, started feeling like my "real self" again Sunday. First Chemo was last Tues, had very bad lead headache that day, and legs felt heavy, but no nausea that day, super tired, did short walk right after chemo but napped and laid around later Wed: slow & ttired in morning and better in afternoon, went walking but fair day, Thurs: No energy all day, felt super tired, mild nausea but not productive, forced myself for short walk late Fri: Felt crummy in Am but managed a few hours at work, foggy brain and very tired. That evening got a lot of energy and went for a run on the trail. Sat. felt nauseated took medicine for first time, felt better in the afternoon and went walking several times. Sun: Felt like me again!! Walked, did yard work etc. Monday went to work at 7:30 am and stayed full day, leaving at 5:30 pm, got home and was a wreak, totally wore out, went to bed early. Today I stayed home until 9:20 went to work and stayed until 5:30 and did so much better, my brain functioned better, I stayed so much more positive and came home and got lots of work done... I think I am good now until next treatment on Tues of next week. Our office only works Mon-Thursday. Looking forward to being fully active this weekend. Agatha: Wanted to comment about food. I have been Total Vegan since May 2017 prior to that ate about 90% vegetarian. My son asked to go full Vegan so I did, and then with the diagnosis of cancer felt it was a great eating plan to fight the cancer too so kept it up. BUT the urge for cheese WAS SO great, it was getting the best of me, so on Saturday I drove to the store and bought a good quality sharpe cheese and ate almost the whole thing that night... it has now been a daily staple. I am not sure what causes the cravings but it sure is insane. I may get a craving for something else soon and not want cheese but for now it is great. I also lost my love of coffee the day after chemo... it just does not taste good anymore so have switched totally to green tea which is better for fighting cancer anyway... but miss the coffee, hopefully will come back after chemo ends... No mouth sores yet, but those of you 10-14 days out that are now having them help me to know it still may occur so I will be watchful and call for a prescription when needed. I also have not got "the haircut" yet, but I am doing another fitting of wigs tomorrow and will get one or two. Those of you who have posted the haircut photos, I have LOVED them all!!! I have talked to my hairdresser so she is ready and willing when I call.
Thank you everyone for your posts it has helped me get through the rough days. And the helpful hints about certain products has helped too.
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Winnie, I had a complete panic attack at best buy yesterday. I had to walk out. I'll be taking what your taking. I'll be watching you (isn't that a song?) It was mentioned of a humidifier for nose bleeds. I put it on my to do list.
Joyseeker, I lost 16lbs since dx. I needed to loose weight, but Jeez! What a way to do it. Like to know how your port feels - Take care everyone - night
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rljessu - I was fretting about my weight loss and you ladies have made me feel much better! I think I have lost about 15lbs including my breast and my cast. Stress. It's a wicked thing.
Getting the port? No problem. I had local freezing and conscious sedation. They had to try on both sides as my left vein was too small. So I'm pretty sore today. Advil is my friend. Just taking it easy. I would say I'm more tender than I was with my mastectomy. I think then need to poke and prod and wiggle when they install it so I'm pretty bruised. I know it will pay off in the end but today it's pretty ouchy.
I cut my hair really short yesterday. I'll post a pic in the morning. Currently experiencing a wicked windstorm. Gusts up to 130km/hr. Power is on and off. I think I'll just go to bed. Gnight friends. Be good.
Sara
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LisaRx - I am still going back and forth and back and forth about reconstruction, too. When I first got my diagnosis I felt adamant that I'd get a BMX and go flat. As I live with the diagnosis more and get over the shock I am leaning more towards uni w/ reconstruction of some kind. I have to do a lot more research. And congrats on the headshaving. I don't think I'll be far behind you.
Scaligirl - What a rough experience. As if you needed that right now. I hope it is something easily addressed and won't ever happen again.
ShanesWife - congratulations on a much more productive MO meeting!! That's great you don't feel like you are staring at a 16 session plan since it worried you so much.
TriGirl - just like a NYer to assume every reference is about NY, right?
Also, I am so not an athlete and when I read "tri" I think tri-state, triglycerides. tricycles.... anything but a triathlon. Sorry that this stupid disease made you put that race on hold. HikerVA - thank you for telling me about your cheese cravings. It's crazy, right? 2 months ago I would no sooner long for cheese than for meat. Now? It's almost an obsession! Luckily for me I still enjoy my beloved cold brew coffee. I'd hate to lose a taste for that.
Off to bed for me -- back into the office in the AM.
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i am starting today
Any idea sbout gemcitabin
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Hello Warrior Sisters, This is my 1st post. DX July 31, 2017. HER2+. 6 Rounds of chemo every 3 weeks, just had my 3rd treatment. I need a tribe. A positive uplifting tribe.
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Hi Lilsky69- welcome to the group nobody wants to be in. I am new to this as well being diagnosed in August and just started my chemo treatments. Everyone here will help you through the process. it is hard be we will get through this!!
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Super short hair. Off to MO. Terrified.
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great haircut Joyseeker! I don't know what your hair looked like before - but your rock this haircut. Are you seeing your MO for a treatment schedule? I have my 3rd or 4th (I can't keep track) on Tuesday. He's just about given up on me being so indecisive. I keep postponing the start date.
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