Chemo starting October 2017
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Joyseeker, I wonder if that going to appointments will ever not be terrifying. I hear from women years out that they still throw up in the lobby bathroom at every check up.
The last few days I have had a tender spot in my arm pit. I really don't know if I have node involvement. The MRI showed one promenent one. But never biopsied. The initial meeting with the bs, mo, and radiologist they didn't feel anything in my nodes. But it seems like I am forming a deep zit, it's a red bump now. Also have 2 similar spots on my face. I take good gentle care of my skin, not a big makeup wearer. So I chalk this up to chemo se
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Here's my hair! (Since we are sharing pictures.) I went short and red!
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Petey I love the red. I say when I start getting hair back after all this, I am going to do more wild colors (maybe red, purpleor pink) and styles. While waiting for it to grow back to a comfortable level.
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rljessu - Yes. Treatment schedule and to see my healing progress of my mast. They won't start chemo until I'm well healed. Thanks for the compliment. I always think I look like a boy with short hair
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petey11 - I'm contemplating keeping mine short with colours too. I love your red
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Thanks Joyseeker! I love the back of yours! I think I need to have my friend/stylist do something like that with mine. The back of mine is too long.
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What do you guys wear to chemo for port access? I hate necklines too close to my neck, so I have lots of vneck and scoop neck shirts. I only have a couple of button up shirts though, so I'm not sure how necessary those are. I also have tanks and zippered sweatshirts if people think that works. Thanks for the input!
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petey111, I wore a regular scoop neck t-shirt. The port is just under my collarbone, so it's easy for them to access it.
#2 Chemo treatment is under my belt!
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So. Shedding is happening. My scalp hurts so much. Guess this is normal? Can't imagine how it will feel after going in for my second infusion this week. Sigh. Anyway, hope everyone is doing okay and managing the treatment well. ♥️
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Now I know the details. 6cm tumor, lymph vascular invasion negative, estrogen/progesterone positive, 2/4 nodes,Her2 negative, grade 3. Chemo starts next week. Three rounds of FEC followed by 3 of D. I feel better having a plan, then terrified all over again.
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Hi Everyone!
I'm new here and just found out I will start Taxol tomorrow! I'll receive the infusions on week one and week two with week three off for 3 cycles. When I saw my oncologist today I expected to receive a script for Afinitor/Aromasin but because of concern for progressing liver mets, I need to start a "faster acting" regimen. I did not have chemo first time around so am quickly reading through your posts and I really appreciate all of your tips!
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Joyseeker, how was your MO appointment? I have the exact same haircut. You rock it! I had super long hair and chopped it off, leaving it long on top to have fun for a few days until it leaves me.
Lilsky69, welcome. We will be here for you!
Nilelady2016, how was your first chemo infusion?
Petey111, love your hair. Beautiful color, too.
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I have to confess, I thought chemo would be easier and I thought I'd handle it well.
Nope. Finally today, day 7, I am starting toward feeling okay. My headache is greatly diminished, just randomly hurts now. But it's so much less! I am so relieved to feel something more normal approaching.
Days 2-3, I had vicious digestive issues, tiredness, the headache without end.
Somewhere on day 4 I did that thing where you've spent so much time in bed that everything hurts. I threw out my low back. Talk about poor timing!
Day 5 was easily the worst I've ever felt in my life. I could hardly move. I could not get comfortable. My back, my chest, and my jaw were hurting intensely. My digestion was devestated. I am having a lot of rectal bleeding so I haven't been taking pain killers. Agony.
Day 6 got a little better but by the end of day, I was starting to hurt soundly. I started taking edibles and I think they've helped. Today, a break from the pain! Moments without toxic tears!
I hope that was my low point because I don't know if I have the morale to get through that kind of pain again.
I'm going to do round 2 a bit different. I think I'll try fasting prior to at least avoid the rollercoaster ride from constipation to diarrhea and back. The last thing I want to be concerned with is whether or not I'm going to have a painful hemorrhoid sign on to compete for the top torture slot.
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seemaryrock - I loved my MO. We have a plan. She is realistic but hopeful. She says "surgery made you cancer free, now lets talk about some insurance through treatment." Chemo education on Friday and I start next week. I have a different regime (maybe because I'm Canadian?) Three rounds FEC then three D. She said that my mastectomy healed perfectly along with my ankle incisions. I feel like I can exhale tonight.
JadeSheeva - oh boy. Wishing this wasn't such a rocky road for you. You really have had a rough go 💕💕.
Can you all tell me what I need to shop for before I begin next week? OTC meds included in that list. Thank you!
Sara
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I have my first chemo tomorrow afternoon. Four courses of AC at 21 day intervals, followed by 12 weekly infusions of Paclitacel & Herceptin, then continuing weekly Herceptin to finish out a full 52 week course of treatment. I've lost 13 lbs since diagnosis the end of July. For a long time I'd wanted to lose about 5 lbs but couldn't quite stick to a diet/exercise regime to accomplish that. So having lost so much with absolutely no effort has been disconcerting. I know it's mainly just the stress of the whole situation. I don't have much of an appetite so haven't been eating as much as I used to and haven't been sleeping well since diagnosis. It takes me an hour or two to fall asleep at night & then I wake up repeatedly during the night.
I'm dreading the chemo side effects more than I did my lumpectomy & chemo port insertion surgery. I have an RX for Zofran, for which I have read excellent reviews, so I'm hoping to avoid nausea & vomiting. But I live alone so the extreme fatigue & loss of appetite has me concerned. It hasn't been mentioned if I'll be receiving Neulasta, but it sounds like bone pain is another potential side effect I was unaware of before reading this thread.
I'm also really hoping my Xcela port functions properly. There was a complication when inserting the cath into my jugular. I started bleeding out heavily & BP plummeted. They ended up keeping me in the hospital an extra night to monitor me. The surgeon said he usually prefers to install them on the right side because the vein is straighter from that direction. He said if it doesn't work properly he'd have to install a new one on my right side. But my oncologist said that's not an option because I'll be having radiation on the right following chemo, so she doesn't want the port in the way.
I've also read that those will low muscle mass have more severe side effects, and I definitely fall into that category. I'm slim but not fit, and already have trouble finding the energy to exercise. I've tried to get out for a 2 mile walk every few days, but sometimes I just don't have the will to do it. I've nearly always had a very low energy level (borderline lazy - lol), so I can't imagine how I'm going to deal with even more fatigue. As it is, I really SHOULD have done some major housecleaning today, but just didn't have the energy to do it after getting home from an appointment & grocery shopping.
Between the stress, anxiety, lack of appetite & lack of sleep I think I'll probably have to ask my doc about possibly starting on anti-depressants. I don't believe I've ever suffered from depression before, but these past months have been totally overwhelming. The fact that I'm unemployed & having to handle the affairs of my mother who is in full-time nursing home care with no income of her own either just makes it feel like a little too much to deal with all at once.
I'm glad I can come hear & read encouraging news that for some the chemo isn't as bad as anticipated. I'm hoping that will be the case for me. Although I'm worried that my experience will be more like Jade's, I'm really hoping all my worries are for nothing. Will update how it goes when I get a chance.
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TabzlsMyAngel - Yes, yes, yes.....I'm off to bed but want you to know you are not alone. I am experiencing many of the same things as you. You are loved, you will make it, you are braver than you think. When I was really anxious I would have a hot soak in the tub and do a meditation on my phone to help me relax. I've also started on antianxiety meds and a sleeping pill. Both have helped my outlook and ability to cope. Hang in there!! 💕💕
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Good morning ladies! The past couple of days have been up & down. Tuesday I was too sick to go to school. I hate missing (and one class was beyond terrible for my sub). I sucked it up yesterday and went because we had Parent-Teacher conferences after school. That probably wasn't a good idea, because I started feeling bad mid-afternoon, and I continued to feel rotten for the rest of the evening. By the time I got home, I was really nauseated. I took some anti-nausea meds, and climbed in bed. Almost as soon as I reclined, the need to gag hit, and I couldn't make it to the bathroom. Ugh! 2 things I learned last night: if it goes down orange, it comes up pink, and puke on linoleum is more slippery than an ice skating rink. (Sorry for being disgusting). So....how do you get rid of the odor & stain from a light-colored berber carpet?
I think I have developed an immunity to my anti-nausea meds, so I'm going to ask for something stronger today. Wish me luck. Today is another long Parent-Teacher day. Thankfully we are off tomorrow!
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Hi,
Sorry I did not follow up earlier. I had my first round of chemo monday. It went relatively well. I'm on a 3 cycle of Taxotere + Herceptin, then I switch to 3 cycles of CEF. So far, symptoms are manageable, energy levels are ok. I've begun self-administering neupogen yesterday. I've been able to do mostly what I normally do, albeit having to remind myself to constantly keep hydrated. I had a bit of tingling in my fingers early on, but that has diminished. The chemo has triggered menopause so I am getting a lot of hot flashes, which is something quite unsettling. I'm always uncertain whether I'm having fever or just being flushed - but the thermometer says I'm fine, and I feel fine other than been red cheeked.
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Dear Tabz - Best of luck today with your first chemo session. I hope it goes smoothly and that you don't have many side effects.
Fishingal - Oh No! I'm sorry that happened! I am the world's worst cleaner so I can't offer any helpful hints. Hope you feel a lot better today as you deal with more parent-teacher meetings. Have you ever seen these blue sealable sickness bags? I got a few on Amazon just to always have on hand : Blue Emesis Bags
dya - Congratulations on finishing your first session. Hope each day of the cycle gets easier and easier on you.
My big news is that I the hair shedding has begun. I was putting some sticky product in the bangs this morning and pulled my hand away to find a real hank stuck to my fingers. I'll try to give you guys a day by day so those of you a little behind my chemo schedule and follow my hairline timeline. So, first fall out: Day 14.
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TablzsMyAng, I hate that you're dreading chemo so much. They should prescribe you both steroids AND anti-nausea, and if those don't work, they can change them up. So please don't walk in with the mindset that you'll be suffering. My MO said that he's seen 75 year old 100 pound women tolerate chemo better than 200 pound 35-year old body builders. You might be pleasantly surprised. Worse comes to worse, you get sick and they'll have to tweak your medications for next time. No matter what, it's just 4 treatments and something you WILL get through.
I do agree that you should ask for an anti-anxiety/anti-depression medicine asap. I asked for Ativan after several sleepless nights (couldn't turn off my brain!), and I am not ashamed to admit that when I feel anxiety coming on that I know will interfere with my sleep, I take one. So far, it's worked like a charm! No shame in being anxious and upset when learning you have cancer! It's quite normal. Part of every patient's journey is learning how to control their own anxiety. Some are helped by prayer, some by meditation, some by acupuncture, some by exercise, some by anti-depressants, some by support groups such as these. Your goal is to discover what works for you. Getting a handle on your anxiety will boost your appetite, which should increase your energy level, which should help you get more exercise, which will help with sleep, all of which will help control short-term nausea PLUS improve your overall health.
That being said, please don't beat yourself up. If you can't walk 2 miles, then walk a mile and be content that you've done what you can today. If you can't do major housework, then settle for minor housework. This is not a sprint, it's a marathon. When you're feeling good, push yourself to walk longer. When you're not, give yourself permission to rest.
Good luck with your chemo today. Even though we all dread it, chemo is a godsend. Die, cancer, die!!
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TabzIsMyAngel, I am so sorry to have put that fear into you! Even as horrible as this last week has been, I'm getting through it, and you will too.
I was ill prepared and over confident. This was a learning lesson for me and maybe the things I learned will make my next treatments better.
I made mistakes going in. I didn't prepare my digestion, I didn't sleep enough and I didn't do everything in my power to keep moving to lower pain. And then I let the pain get away from me.
I'm going to prepare for my next treatment by fasting, I'm going to ask for an anti-nausea medicine that doesn't give me a headache, and in the run up I'm going to take the best care of my gut health possible.
There are so many fellow travelers here on a more gentle path, I'd like to think odds are in your favor.
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Joyseeker, I'm so glad that the meeting with your MO went well. I know I've mentioned guided meditation before, but it also helped me a lot. If you're not into that, just being silent and forcing yourself to take deeper and longer breaths will help. A mantra that was said in one of the sessions is what I use most often: "Hope is the source of my strength."
Good luck to you.
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fishingal68, I'm so sorry that you got sick. I know you know all this, but eating all day in small doses might help. What I find to be helpful is cutting my meals in half and eating them at 2 hour intervals.
I'm wishing you well in your quest to be healthy, well, and nausea-free!!
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I know this is small potatoes next to what you are all going through, but my port surgery was cancelled for today. It was cancelled because, the secretary told me, they didn't have the results of the test that would tell me whether or not I needed chemo back yet. Pardon my french, but WTF? What test? What the heck is she talking about?
So, apparently they were still running the Oncotype test. My surgeon, who point blank said to us that the oncologist wouldn't say I didn't need chemo and if she did, he would tell us to get a second opinion, who also said it's pretty definite I would have chemo....was still running this test.
When I spoke to him this morning and said we felt blindsided by this because not once were we told about this test, he said he did tell us about the test, but we just didn't remember because there was so much information we talked about. That's a load of BS. We had been recording every visit. We didn't record that one and I so wished we had. You're talking to a librarian with a doctorate for pete's sake. You are really trying to convince me that you told me about a test that determines wether or not I need chemo and my chance of reoccurrence and I just "don't remember" it?!!! Not to mention the fact that he says this test is "automatic" for tumors over 5mm, but we are three weeks out from surgery and you don't have the results back that normally take 7-10 days?? Something is off there. When was it ordered then and why wasn't it ordered sooner? Why didn't someone tell us about this?
Ultimately, I know this is a fantastic thing to get these results. I know that it will likely not change a thing about my treatment and I should be grateful for even the small change that I might not need chemo, but frankly, I'm having a hard time getting past the emotional tailspin it put me in last night and the anger towards my surgeon.
You ladies that are going through it all right now, you are so strong. Even when you feel your lowest, you are clawing your way through all the crap. I am sorry it is so hard.
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Well that didn't go as planned.
Last night when I went to bed I listened to the Yoga Nidra mentioned by Agatha. I think perhaps I might have slept a little better last night than I had previously, but.... I have the option for 2 alarms on my clock radio. Earlier this week I had an early appt & had set an alarm for 7:15. On another day I had set the other alarm for 8am. Apparently I either forgot to turn them both off or I somehow accidentally set them both last night. So while I was hoping to sleep in a bit this morning, the radio started blaring at 7:15, and then again at 8:00. Then, the social worker from the cancer center called at 8:30 to say they'd had a cancellation and could fit me in at 11:00 for an oncology massage if I'd like. So much for sleeping in.
So I rearranged my morning plans, doing just a 1-mile walk when I got up, eating breakfast, and cleaning the bathroom & then running a couple quick errands after the massage appt. Then I returned at 1:00 for my chemo appt. I explained what had happened during my installation surgery to give them a heads up. The RN couldn't draw blood thru the port, so she decided to flush it & try again. During the flush I felt a bit of mild stinging behind & below the port, which she said should not occur. They tried drawing blood again with my arm raised & while I gave a good strong cough. Still nothing. So I was sent over to Radiology for a chest Xray with fluoroscopy to check that the port & catheter were correctly positioned. After a nearly 40-min wait there, the study was run & confirmed the port was unobstructed & functional.
So I returned back to the chemo suite, where they said because I had felt some stinging when they flushed the port they couldn't risk using it and having the Adriamycin end up where it shouldn't. My surgeon spoke with my oncologist and they agreed that I should go back for surgery to have a new port installed on the right side. So, I'm waiting to hear when that will be scheduled. I'm hoping the original port on the left can be removed at that time as well.
So it's a bit of a disappointment that I'm now facing another surgery & hoping not to run into the same complications. But at the same time, this "dry run" has made me feel a bit better about the process. The nurses were all very kind & very thorough in explaining everything. And they said they'd be giving me much stronger anti-nausea medication via IV during the infusion so my Zofran would be "as needed". When she said that, I grinned & gave her a big thumbs up. I really, really, REALLY hate feeling nauseous & vomiting. Maybe even worse than I hate needles. LOL
I also received a chemo bag full of all kinds of goodies: soft fleece throw, soft fuzzy socks, hand & body lotion, scented candle, "Coloring for the Cause" coloring book with a dozen colored pencils, a couple of journals, lip balms, shower pouf, and other pampering treats along with a copy of "Cancer Fighters Thrive" magazine and the "Breast Cancer Treatment Handbook: The Comprehensive Patient Navigation Guide". Basically a big pampering, educatiing care package.
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Tabz - What an exhausting day and so frustrating to have to go through another surgery. I hope it gets rescheduled quickly for you!
The surgeon called late this afternoon for me. The Oncotype test confirmed what he though. I have a 34 score. So port in tomorrow since he had a cancellation, oncologist Monday, chemo to begin soon after. What a ridiculous amount of drama for 24 hours to end up having the exact same plan as before. *sigh*. Oh well
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So. I'm up late. Round #2 of AC is tomorrow and I'm dreading it. I only started to feel like myself a couple days ago and now I start it all over again. My hair falling out really hurts, emotionally and literally. I never knew that it would actually hurt my scalp. Yesterday I cried for the first time about things. At an inopportune time of course. My boss simply asked me, "How are you?" and the waterworks started. I've never done anything like that. I guess I've been in shock over all of this and with the next round of chemo coming up it just sort of hit me that I only recently had major surgery and now I was undergoing chemo-- and will be doing so well into the New Year. Anyway, I pulled it together quick enough and just got back to life as I usually do. Today was a good day and I went about things. I tried to get an appointment to shave my hair down as a few people told me that my scalp would get some relief if I did. I couldn't get an appointment though so maybe tomorrow after treatment I will get it done. My sister will be with me. So far my biggest SEs have been mouth sores (which did clear up with Magic Mouth) and muscle spasms, which did clear up with movement and advil. Knock on wood that things won't go too far off the rails as treatment continues. Wishing everyone the best as they go through treatment, however ever early or far they are into it.
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I had a mammogram and ultrasound Tuesday to look at a couple of new lumps. No worries there. One is a little necrosis and there is a seroma. One less thing to worry about. Honestly I felt silly getting a check now that I'm in chemo but that's what happens when your treatment outpaces your appointments for check ups.
I also saw a genetic counselor today. Waited 7 weeks for the appointment! They tried to do a blood draw but my veins weren't going to have it. I got a couple of sticks and eventually had to ask her to stop drawing as I thought I was going to faint. I have no fear of needles and haven't had trouble with this in any way. I was surprised. The nurse says I was only giving a little blood each time my heart beat. Weird! They sent off what they got and the worse case is that I'll need to get another poke.
My husband is a bit in awe of some of our "spa" treatment facilities. Soft gowns, artwork, comfy chairs, stone sinks in the restrooms. They brought him back through the Man Door to listen to results with me. He approves of any pampering we get during this journey. I asked about men receiving breast treatment and apparently they all go through the Man Door. I feel a little sad about that.
Overall, today was so much better. The faintness, I knew that would fade quickly. The biggest issue I'm dealing with still is digestive. My poor bumm is so sore and bleeding so much, the thought of eating food is anxiety provoking! I took sitz baths all day. Ha! I should have told the phlebotomist that I knew how to get all the blood she needed! Sorry. Ew. 🤣
My moods and emotions, and apparently my sense of humor are all over the map.
Hang in there, travelers. We'll get through.
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eightoutof8.. I'm just 2 days ahead of you in our common treatment plan, and I reacted exactly the same way. I think that I was in shock for the first week or so, and then when I shaved my hair, it all hit me like a ton of bricks. I wallowed in self pity, which I think was understandable, and then I felt a lot better. I woke up the next day stronger and ready to get on with it. I know that I'll have some more setbacks before it's all over, but that's life. Good luck today in getting through #2. Assuming you're having 4 rounds like me, that means you're half way done!
I've printed out my Outlook calendar through Feb 2018, and each day I put an "x" through it, because it makes me feel better to know that I'm closer to my goal of 2/14/18, which is when (God willing) I should receive my final Taxol treatment. For the first time in my life, I'd love to just fast forward through the holidays. I've never had time move so slowly in my life!
JadeShiva, your poor bum! I hope that you find relief soon. Have you talked to a nutritionist or your MO team to see what kind of relief they could offer? I'm so happy that your mind is at ease. I don't think I've ever been so anxious as when I was waiting for test results.
Petey, I'm glad everyone's finally on board and that the port will be installed tomorrow. Progress!
Tabzls, good luck on the new port installation. How did the massage work? That's one thing I haven't done yet that I want to check out.
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Yeaterday was the first day I didn't take a nap and felt "normal" for a while. Chemo 1-day 11. How long this process is does get to me to. My chemo plan is 4 AC every two weeks than 6 taxol every 3 weeks. That takes me to March! Of course if there is no delay and I am already in delay for #2 due to blood counts.
Had parent teacher conference yesterday it was good till my daughter mentioned grandma is here because momma is sick. The teacher knows, just hearing the words come out of my daughters mouth hurt. I let my daughter sleep in the same bed with me the last 2 nights which I had not done in a few weeks between port surgery and chemo starting. It felt great to feel normal, snuggling up with my baby.
No hair loss yet but I know it's any day now! Yesterday I was hating how my hair looked. I haven't been blow drying or flat ironing. Trying to be gentle. But I told my husband, I shouldn't complain because I won't have any much longer
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