Chemo starting June 2018
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rachelcarter35 --I had Tamoxifen when I was 45-50 y.o., and I did have hot flashes, but I'd already had some for a few years, so it didn't seem too different at that point. Hot flashes didn't seem impossible, just a bit irritating. I would almost say that it felt like zero SE's. I wish you comfort and smooth sailing through this.
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Yellowb the AC didnt effect may taste at all, however I did get mouth sores and thrush. After the second round, I got a burning in my throat that was probably where the sores started. After 3rd round I noticed them in my mouth. It wasn't too bad for me, but it did stop me from eating enough to lose about 10 pounds. (Which I couldn't afford to lose)
I took claritin for 3 days before and 5 days after Ac treatment. It's to combat the bone pain associated with the neulasta shot given the day after infusion. It worked for me, I didnt have any pain.
I'm on the taxol now, and overall it's easier for me than the AC. I could feel myself getting stronger the further I got. Now I'm just exhausted, but we have all been through so much.
Good luck to you for Tuesday, hope your side effects are minimal, or none at all would be great!
Congrats to the ones finishing up!
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Sorry to have been missing from this forum. Still have four more “chemo Tuesdays” and then will be done... I hope. Will still need some smoothing out surgery as bilateral last spring left many lumps and bumps. Fingernail and toenails still a problem—one toenail is definitely going to be off soon. The rest should hold. I am so tired of being tired. Will stop whining! I read all your posts and cheer with those of you that have finished. I also take heart from all the positive support you all are willing to share
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Thanks so much, Crystal_sola! I know, intellectually, that people tend to post when they are having problems, not when they are side effect free ... but still, when I read through the AC threads, I start to think I will have every one of those side effects.
Best to every one!
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Washington48
Good to see you! Please go on and whine or vent or anything you need to do. Chemo is so rough to get through, but you are doing it. I hope you only have 4 to get through, too. Hang in there
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Washington48 keep us in the loop till the end of chemo so we can cheer you on!
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Checking in from 3 weeks PFC.
The good: I'm eating more. Stuff still tastes wrong but for the most part I seem to be past the issue of texture of most foods being awful. Chicken noodle soup continues to be my go-to. I've been able to work the past almost 2 weeks, after being off 2 weeks after last infusion.
The bad: Ankle swelling! Been a real problem the last 5-6 days. Haven't had this before and it's got me worried, walking is so painful and I'm on my feet all day at work. Anyone else have this happen? I'm scared of a heart issue. I have my first HP-only infusion on Tuesday and will see MO then. Hopefully it's just fluid retention and treatable. Also, my eyes haven't stopped watering for 3 weeks. It's soooo annoying. Somebody at work suggested Clear Eyes. I laughed. I don't need eye drops, I need eye driers LOL.
Otherwise, I'm just trying not to overthink my decision on surgery. Focus on trying to be as normal as possible for the next couple weeks before that happens. How's everyone else doing that's PFC?
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I felt like chemo kind of kicked my butt as I was leaving. I had both water retention and tearing eyes starting 2 weeks after my last chemo. My onco dr. jokes that it's called tax o tear actually. I was really frightened by the water retention I felt like I was walking through mud and I gained 14 lbs. I drank a lot of water and walked everyday and it resolved itself.
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I am 3.5 weeks PFC and I still have water retention. Otherwise I feel fine, but today was a downer for me. Out of nowhere I started to feel fatigue and frequent hot flashes. They drive me crazy! I do think the course of Pylera antibiotics is partially to blame for this. I have 3 more days on them. Radiation starts tomorrow.
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I had my last chemo today. For some reason the cancer center was really busy today. So I was there for an hour more than usual. My MO congratulated me on my last chemo, but he was the only one. Even though I mentioned to a couple of nurses in the infusion room (who know me well) that it was my last treatment, they didn’t say a word of congrats. Just sent me on my way like usual. Kinda bummed me out. At least my hubby was with me and he gave me a hug and kiss before heading off to work.
It’s currently 82 degrees and partly sunny in IL and so I’m going to sit on my deck and enjoy it before it gets cold again.
Hope everyone is doing well.
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RosieRed, congratulations!! We can at least do it on here.
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congratulations RosieRed!!! You made it and we are all very happy for you
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hikinglady - I hope you are feeling better with your lungs and you have a great trip to Los Angeles to visit your kids
I live here too if for some reason you ever need anything.rachelcarter - I was wondering if you started back to work yet and, if so, how did it go?
I'm feeling optimistic today that we are all going to start feeling better soon. I'm cheering for us all!!
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Lungs are better! A couple of weeks ago, I developed a lung reaction to chemo, with "effusion" in the lower part of both lungs. Breathing was difficult, so I've been on steroids and it has resolved. I just had my follow-up chest x-ray yesterday. What I had is called pneumonitis, and it's inflammation of the tissue of the lungs. After 10 days of steroids, tapered off by day 7, it looks tons better on the new chest x-ray now. I can take deep breaths, and am getting back to normal on stamina. This can be much more severe; some people land in the hospital and have many more days or weeks of steroids. So, maybe I had a fairly mild version of this, and it is a bit unusual. Anyway, steroids have gotten the inflammation down. To heal the tissue, I'm trying to drink a lot of water and get my rest, too. As I mentioned on a previous post, when this started (about 2 weeks PFC), I couldn't tell it apart from the usual "feeling rotten and having no stamina" cumulative fatigue. My clue that there was a big problem was the feeling of not being able to take deep breaths.
I'm now 5 weeks PFC. My eyebrows are coming back--little tiny ones! I ended up with 60% of usual eyebrows by the end of chemo. The metal-mouth icky taste is almost gone--just a bit in the evenings when I'm tired. I'm getting back to normal energy. I did (Paxman) cold-capping, and have kept most of the hair on my head. Eyelashes are at about 50%, but no longer falling out, so maybe they'll start to re-grow soon.
I have a couple of trips soon, and my MO says that he wants to wait until I'm staying home for awhile before we start the AI. I feel anxious about that Next Thing, since I know that there are SE challenges. Off to see my children in LA this next weekend, then a friend in Tucson for a few days. Another trip at the end of the month, to NYC with my sister for a week of art and music and theater. I haven't left town since BMX in May, so it's nice to emerge from the chemo tunnel and look forward.
Survivorship Counseling: My oncology clinic offers a program of follow-up and support, for patients who have moved through (traumatic) treatment, and are now facing the next phase. For me, as for many of us, that means some fears and terror, but also hope. I was given a "90% chance of being cured" by my treatment plan. Of course, my brain manages to worry about the 10% recurrence possibility about 90% of the time, lol.... This week, I'll be meeting with a PA for a one-on-one, hour-long counseling session. Her specialty is oncology, and she will be discussing with me how to balance, move on, manage my mental and physical well-being. I am grateful that this exists, and that my oncologist automatically puts me into this support program. I'm quite okay, mental-health-wise, with good support in my life, no depression, etc. But, this whole diagnosis and treatment has shaken me to the core, of course. All "survivorship counseling" wisdom and guidance will be welcome, as I navigate my next steps. I will share with you all whatever tips or wisdom that I learn.
Sending you all good healing wishes!
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RosieRed we are ringing your bell in spirit. Whoohoo! It's such a big day and should be a good excuse for celebration. Man their loss at that infusion center. Maybe you can donate a bell and change things around there when you are up for it.
Lulabella; Thank you for asking - Yes yesterday was my first day of work. I was nervous because I really have to be at the top of my game and there are a lot of little details. I'm a water treatment operator at a large municipal plant. I was already at a bit of a disadvantage at work before this DX. All my coworkers are young men with sharp minds and tons o energy. ...and me 54 yo woman with peri-menopausal brain fog. Now chemo and Tamoxifen have been added. But yesterday went well and everyone was so warm and welcoming. I'm letting these young whippersnappers take lead for a bit but by the end of my shift I realized I'm going to be able to do it and bring things to it that they just can't.
I was incredibly exhausted falling into bed last night (I work 3-11). I think mostly because after 5 months I have to relearn all of my routines and that takes extra brain power.
I've done some reading on how to handle chemo brain at work and one suggestion is to write things down so I brought a little pad of paper small enough for my breast pocket and certainly used it yesterday.
Hikinglady: I'm so glad your lungs are finally resolving themselves. It's scary when you wonder if this chemo is going to get the best of you. I hope you are able to enjoy taking walks again.
I finished my mosaic table on Sunday just in time and it's out on my patio.
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rachelcarter35- the table is beautiful! Glad things went well on your first day back at work.
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rachelcarter35 WOW the table is beautiful---you are so creative. I'm glad you shared the writing-down and brain challenges. We all have to figure out a way to manage Different/New Normal. Thanks.
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Had my first HP-only infusion today. Was a little surprised when she broke out a bag of Benadryl. I wasn't expecting that and I grumbled about it, hate that sleepiness. But my favorite nurse basically told me to shut up about it LOL. Anyway, good news from the labs: my protein level is low, and doc said that's most likely why the ankle swelling. So YEAH that's easy to fix, back to the Boost and Ensure to get the levels back up. She did some blood test to see if my heart is working too hard and that came back OK. Had a long nap this afternoon and back to work tomorrow.
Rachel: I've been working throughout this whole time (mostly, had some days off after each chemo and a few EOs). I've been very open about everything I'm going through, and the folks I work with have been fantastic. Any time I do something dumb, or just stand there trying to remember what I was going to say, someone is quick to say "CHEMO BRAIN!!" It's good to be able to laugh at myself with them. I was forced to learn my limits and let the younger and/ or stronger folks help me with some tasks. They're happy to do it but boy was it hard for me to admit that there's anything I can't do. I'm a banker in a casino, and some of those bags of coins are a lot heavier than they used to be! I can still do most of the job, neuropathy in the hands makes it a challenge too but again, I've learned new ways of counting money and adapted. You'll be fine, just don't be ashamed to accept help. Beautiful table, BTW! I don't have a creative gene in my body LOL. Sometimes I wish I did.
Hikinglady: great that you're doing better! And thanks for the update on progress. I'm now 3 weeks PFC and can't WAIT to have normal taste again. Getting there, but a ways to go.
Good luck and hugs to all! TImetobebrave: I'm looking for ya, how's things?
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kat22, is there any special reason you started HP 3 weeks PFC instead of having the surgery first? I hope it was not too rude to ask
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Well the downside is that I was wrong when I thought I could skip a single day of prilosec and I have acid reflux now, and I developed nausea during the pre meds of unknown cause.
The upside is that I am done with chemo for the time.
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LilyCh: Sorry for the delay answering. I did neoadjuvant therapy, which means chemo first to shrink it and kill any stray cancer that may be floating around, then surgery and rads and AIs. I finished chemo 3 weeks ago but will continue Herceptin and Perjeta for a full year. Why? Honestly, I was clueless and that's what they told me the treatment would be LOL. I'm a lot more educated now but I guess it was the right thing to do. Guess we'll find out for sure post-surgery in a couple weeks.
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kat22, thanks very much for your input, you were the one who inspired us a lot by telling us you had excellent response even after the first TCHP :-) :-). Anyway, my wife is now one week after the 5th infusion and the BS told us to have the surgery 3 weeks PFC, then radiation and HP. It sounded a little different from yours, that was why I was asking ;-)
Thanks again.
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LilyCh: Thanks so much for telling me that I inspired you! That makes my day
I kind of expected a little break PFC before the HP only, but nooo....in fact, I have surgery Oct. 25, post op is the 30th and so is my next HP treatment! No rest, I guess LOL. I'll let you know how the surgery goes. Hoping for the best!0 -
Kat22, it sounded like you already had one HP-only treatment before the surgery, that is great. Best of luck for the surgery and keep us posted.
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hi all, I jumped in from the chemo in August 2018 group, hope you don’t mind. I just like to see what is coming next.
Just wanted to say my OC said my HP treatment will continue without stopping after chemo, meaning before and after surgery. I won’t have radiation so assume that might be a factor.
Thanks to you all, I have learned so much reading your posts. Best of luck.
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MACTAZ, just out of curiosity, per your dx, you got a DCIS dx during the chemo for IDC? was that the reason you chose MX as the surgery option?
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Rachelcarter that table is absolutely beautiful!!
Rosiered congrats! Sorry your nurses didnt recognize your big day. At my center they have a bell ringing ceremony, I've watched 2 patients get to ring it, it's really special.
Next week is my last infusion!
It's so great to see so many finishing up!
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LilyCh, Yes, I was initially diagnosed with two IDC tumors, both triple positive so they immediately put me on Chemo and neo-adjunct therapy (TCHP). The tumors were found through a mamo and an ultrasound biopsy. My MO ordered an MRI with dye but the test was scheduled a day before my first infusion. I got the test results back just before my meeting with the BS, they showed there were two other questionable areas and ordered a MRI with dye biopsy on those two sites. She said she was willing to do a lumpectomy with the two tumors because they were in the same quadrant but if the results came back with any additional cancer she would highly recommend MX because that meant I had three instances of cancer in one breast and the risk would increase significantly because of possible "rogue" cells that had not been identified through testing. I read a lot about multi focal cancer and this is the recommendation by most. Of course the results came back that one of the sites was DCIS and therefore I decided not to take the chance and went for a UMX.
As a note, my OC also told me that there was no evidence that the current regiment I was on would kill the cells in the DCIS because this is not the treatment for DSIC, typically it is radiation and maybe lumpectomy. So this also played into my decision.
Hope this helps. If you have any other questions don't hesitate.
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MACTAZ, thanks so much for sharing. We are in the stage of thinking about surgery options now (my wife is 8 days after the 5th neo-adjuvant TCHP) and these days I kept asking questions about how people choose LX or (B)MX and based on what
Best of luck and you have a wonderful weekend!
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You also, it is a hard decision. Many decisions to do BMX come down to the lest amount of anxiety, less to worry about - piece of mind, no mamo's going forward etc. I guess I just decided to take the risk, I don't have a family history, I will have the adjunct therapy to help with HER2 and Hormone positive receptors so I just decided to go for the UMX. I decided having one of the girls was better than none.
Good luck with your decision.
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