Starting Chemo, November 2013 Group
Comments
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Lissy2304-
Good grief! You are AMAZING!!! ARe your wbcs good that whole time? Do you get neulasta shots? How are you doing it? -
Lissy that's great about your taste buds!! Right after chemo I had a very horrible metallic taste in my mouth which went away...now it's just dry...and my taste buds are somewhat muted....never had an issue my first go round with taste buds...
My hair is coming out by the fistfuls today... So sad...
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Hi Ladies,
I joined this group as I was supposed to start my chemo on Nov. 18th. I started with an infection in a tissue expander and had a 4 day hospital stay and on Zyvox for 14 days. It was a horrible hospital stay that had me getting 13 needle pokes for IV antibiotics and finally being discharged on the Zyvox. I ended up getting the flu and then a sinus infection so my port was delayed., I am getting my port today and starting my TCH on the 9th. I am starting the whole process late as I was diagnosed in June, but the MO ( x2) did not recommend chemo for me. I pushed for the chemo because I am HER2++ and wanted to be as proactive as possible. My invasive component of my tumor was small but I had a total of 11cm of DCIS with 0.2cm of IDC and did not want to be passive about my care. I read several threads on this board and convinced myself that I needed to advocate for myself and encourage the MO to at least consider the Herceptin. Herceptin is not given without chemo, so I start next week. I researched the SE and risks thoroughly and believe it is the best option for me. I was scheduled for a DEIP flap on Nov 18th and now that has been postponed. I am just anxious to get started.
I am an RN and am used to being in control and knowing how to react in a crisis and often deal with patients facing circumstances out of their control. Being on the other side has been eye-opening. I have been so very disappointed in much of the care I have received by hospital staff. The nursing care in some of my hospital stays has been very lacking in both the physical nursing care and the emotional care. The physicians have been wonderful and very receptive to my concerns and have allowed me to have opinions about what to do. I have been allowed to participate actively in my care. I apologize to any and all who have received substandard nursing care. I guess I am just an old nurse and after 36 years as a nurse, I have expectations and practice that are out of the norm for today.
I am grateful for all of the threads and postings by all who participate in this forum. Fear is part of the diagnosis of breast cancer, but the fear and anxiety have been greatly lessened for me because of all of the postings. I have gotten so may helpful ideas and suggestions for going through this process by reading all of your experiences. I have purchased skull caps and wigs already. I have my backpack ready for chemo and have organized meals. My husband has been very supportive and wants to be included in every conversation with my caregivers. There are times I just want to talk to a woman. I don't think a man can completely understand all of the feelings and concerns women have about dealing with breast cancer. i appreciate his wanting to be so involved but want him to let me have my girl time too. He loves me and I know it and I know he wants to help and do what is best. Has anyone else felt the need to have their husband just step back a little and let you have time with women to talk things over? I have wonderful friends but none who have gone through breast cancer. Women understand the emotions and feelings as well as how hard it is to make all of the decisions necessary when dealing with breast cancer. Men are more about "This is what the problem is and this is whatt we are going to do." Women are more about " what are my options and how will it affect my family, job, and life in general." I needed more talking about things to figure out what to do.
I had cancer in my left breast but ADH in my right so I had a BMX on Aug 12th although I was dx on June 6th. I was not able to get a spot on the surgery schedule in my own hospital until Sept 23rd, so I went to where i could get the surgery done the quickest. The waiting was horrible.
When my biopsy results came back 3 weeks later, my surgeon told me to go on with my life and get my DIEP done as all was negative. I found my path results posted in a mychart app and realized that it wasn't all neg. I had and invasive component to my tumor and was HER2++ and grade 3. Panic set in as I knew little about oncology. I learned more reading this board than I did trying to get through all of the research online.
Enough posting from me. Wish me luck today.
I hope all of you wonderful women have days that are filled with joy and improved health.
Love to all,
Gayle -
Lissy - I've gained weight from eating to heal my wound. I don't like it but am taking it in relative stride as one of the costs of BC and figuring that taking it off after treatment is just another box to check on my recovery list.
Wrenn- I totally get it. My breast reduction feels like an science experiment on my chest. Nothing private or sensual at all! -
eillischestn- Yes, I actually told my husband to go away the other day. Bless his heart, he is trying to be too caring and helpful. I don't think they can understand that a lot of our issues are about the almost total loss of control. We can't control our looks, our feelings, or much of anything else. We need a little space to be with those that might understand. And we need to do what we can for ourselves. Mine was really upset that I insisted on taking myself to the doc yesterday for the WBC. You don't want to tell them to knock it off, but sometimes it may come to that. I warned mine that if I got bitchy, or whiney, or even mean, not to take it personally. One good thing about chemo, you can blame EVERYTHING on it and no one will no the difference. The port is no big deal and it helps so much. It just feels really weird. -
Hair question: has anyone tried the halos from the American Cancer Society? -
Been reading the posts and thought about adding my 2 cents, but just started day 5 and still feel like road kill. I was thrilled to get the kids on the bus this morning (they were still home on break yesterday) and plan on doing nothing for a long while but drink ginger ale.
Okay, here's my one rant. Why can't everything just stop and take a break until I am ready? Or at least can't everyone take care of themselves? The kittens ate a turkey wishbone this weekend then barfed all over and I am not supposed to even touch it. Seriously? My husband put out the Christmas tree and boxes of decorations but no one decorated anything. The boxes are still sitting there. Are they trying to make me feel guilty? Step it up people! I normally take care of everyone and I just need a couple of days. Is that too much to ask? I wish I didn't have to ask.
Whoa, harsh...but now I feel better. Thnx. -
wallymama- lol and well said. I don't have a husband but an older brother who is totally hovering over me... we were never close growing up (he's 11 years older) so it's super strange, but he's been a lifesaver to me. -
Gayle-
Welcome and wow, I don't know how you stood the waiting! That was worst part for me too...I am old Rn - only worked 8 years and then home with kids the rest, but I too have been discouraged with health care now and how uncaring everyone seems to be...
Got my mastectomy done by family member in Colorado and reconstruction. Interestingly both he and surgeon said I wouldn't need chemo. either..they just don't know...as I saw 2 oncologists and got oncotype dx, I was on low intermediate with 13% chance of reoccurrence....they both said chemo would lower that chance...so I'm doing it too!
I was sortof, rethinking that one when I started feeling the effects of chemo though, but thank God I am going to take one day at a time and get through this...I have 3 treatments left. is
This site is AMAING and super helpful...I have a couple of acquaintances that have had breast cancer and talking to them is helpful but this is something you can do when you are bedbound or couchbound and nothing else to do...it is amusing and encouraging and just comforting.
My husband is a doll too, but he is also not a woman and has 'NO IDEA" what losing my hair and other things happening are doing to me...
I got port in yesterday as 1st infusion blew my veins and caused infection (cellulitis) that I had to take antibiotics for and ice for 2 weeks, still sore to touch and painful! The port insertion wasn't as bad as I had imagined..feels weird and tight today and should get better...using Tylenol as it feels burny and pinchy type feeling today...but controlled with Tylenol...thank goodness.
Good luck and we will all get through this! -
I feel so much better today than I did after the first infusion. Headache is under control with Advil. Doc changed my anti nausea meds to Ativan and it seems to be doing he trick. All my bloodwork came back normal yesterday so everyone was happy. My hair hasn't started falling out yet. MO said it could take maybe a month.
I feel like I could work after the initial 3 days are over, but I am a high school teacher and I need to be consistently there or not. If I got sick from germ contact it would ruin my plans and continuity with students. So far, I have not been sick but germ contact has been minimal. I have decided to see how I feel at the end of Dec.to make my decision about that. Christmas break is 2 weeks so I will not be missing much in December. I really admire those of you who are working through this, especially with little kids at home. I don't know how you do it.
Speaking of animals, my college daughter wanted a pet (who I said no to because we have a westie at home), but she wanted something to take care of herself so she bought an African hedge hog! I told her no pets but she did it anyway. In two weeks she will be home for a month with this animal that will drive my dog crazy as he is a hunter. But I don't know about the germs of this thing.
I feel like we are all watching the same shows on tv. HGtV drives me nuts as all these young kids must have granite countertops! I love tv land with the old series, and I have been watching the Brady's and Cosby.
As for internet shopping I have decided to do all my shopping on the internet to help with the boredom. My sister got me. 6 month membership to ancestry.com and I have been working on that as well.
About the port, it is the only thing standing in the way of me being able to sleep on my stomach. Very uncomfortable. Sometimes I put a soft pillow under it and I can kind of sleep on my side. Just a word of warning with it; a friend of mine had a port and tried to do too much, like carrying heavy bags of groceries.
To make a long story short the port shifted and caused a clot right near her heart. So she has kept telling me to not do too much and let my husband carry in the groceries and the laundry.
Have a good week, -
Had best day since chemo yesterday. Felt normal. Today I have serious joint pain. It is day 13 after my FEC. It is a cold & snowy day. Maybe that is why?? Anyone else have worse days infuenced by weather? And here I thought, yesterday, I was good to go until next round. Sigh? There will be good days & bad days, I guess. -
Hi Gayle;
I was all set to go through this entire ordeal with my local hospital's "cancer center," and had met with the MO and RO here already. Then I had my BMX, and the overnight stay was enough to convince me that I needed to do whatever was necessary to make sure I never had to stay overnight in THAT particular hospital again. It was kind of sad, really, because 99% of the people and care I received there were wonderful. But that overnight stay....gah. The first nurse we got was great....a lady from Zimbabwe with an awesome accent, but after she left it started going downhill and never let up til I left the hospital the next morning---glad just to be alive.
The main problem I had was that I was being overmedicated. I had told my surgeon I didn't want morphine or anything like that; just my usual Norco, because I know that I tolerate it well. I was just out of surgery and not giving much thought to dosage though. All I knew was that ALL NIGHT LONG, every time I would start to fall asleep, I would startle myself awake because I felt like I was going to stop breathing. The only response I ever got from telling the nurses about that though was "huh. That's interesting." Well, damn right it's interesting! lol. I even asked one of the nurses if I couldn't just take half my pain meds dose and she said something to the effect that if she did that, and it didn't work well enough that she couldn't give me more until it was technically time for the next dose. What?! That made no sense, but I'd just had a BMX and was in no position to argue. What it was is that the Norco dosage my surgeon had set for me was double what I really needed. Once I left the hospital and started taking one pill instead of two, I was good to go.
Otherwise, it was just little things. A girl--nursing assistant I guess--who was sent in to take my vitals several times and who appeared to be on her first day on the job and was getting no help or supervision: she was clueless. Another nurse who when we buzzed for a nurse took over an HOUR to show up. She blamed it on the desk people and gave us her cell number but, that's beside the point. Yet another nurse who was just..... kooky....and who took the IV out of my foot just before I was discharged, and she shoved the IV pole, hanging needle and all, over into a corner and just walked out of the room. Yikes. IV alarms all over the floor that would go off and buzz for as much as 45 minutes before anyone apparently attended to them.
So yeah. I said never again, and switched oncologists immediately, mainly so I'd be switching to a hospital that I am familiar with and that I KNOW gives great care. Again though, it makes me sad, because MOST of the nurses, techs, doctors, even the guy who wants to see my insurance card every time I show up at the hospital, have all been wonderful. Well, mostly. There WAS the day I had to go there for a chest x-ray, urine test, and blood test, because I had spiked a post-bmx fever and my surgeon wanted to see why. We had to do a lot of walking around the place and I everyone know that I COULD either puke or pass out on their hospital floor at any moment. Did not hint about it, either. I felt AWFUL. And not once was I offered a wheelchair. Weird, I thought.
Interestingly, when I did go back there just to have my bone scan and echo done, some director guy from the hospital chose me as one of his random people to question about my quality of care THAT DAY. I told him that THAT DAY had been awesome.....but then I (and my husband) told him in great detail our concerns and complaints from the overnight stay....and we named names. SO there are probably a couple of nurses out there hating on me these days. Hope I don't run into 'em again lol. -
My worry about my port is placement. my tissue expander is up so far on my chest that I am concerned about where they will put it. MD suggested that it will be under mmy clavicle but so is my tissue expander. I also don't want it under a bra strap so I am not wearing a bra. I really don't have to right now as my C-cup tissue expanders are so pert and perky a bra is not needed, and I am wearing t shirts under my tops and no bras much of the time. I am not wearing regular bras until after my DIEP is done.
I am also frustrated as I have not worked since my surgery. The infections and delays have made it impossible to keep a regular schedule and working on a trauma and neurosurgical unit requires staffing that can be counted on. My MO did not want me to work around sick or infections patients while on chemo. At any one time we probable have 20 patients with infections or that test MRSA positive. Kind of hard to avoid infectious patients. My FMLA has run out and I am currently without a job on my home unit. I hope to get back to it soon as I love my coworkers and the patients. I was an ICU nurse for 20 years and found it very challenging and rewarding. There is something special about dealing with patients who are on med surg floors though. I have never felt like I have as much of an impact on patients lives as I have since I have worked on this floor. I guess that is why I have been so very frustrated by the lack of quality care in the hospital I was in. It is a world renowned facility and has been awarded the distinction of the number one hospital in the country. Reputation isn't everything. Your comfort level with your MD and general feeling means a lot. Go with your gut in finding care.
Gotta take my hibiclens shower now. Due at the surgical center at 1:15.
Will I need pain meds post op for the port? Did not need much post BMX.
Thanks,
Gayle -
@MN_mom Good job! Rant away! Also, you know what? LEAVE IT. If the kitten barfs, make some loud sounds about how you guess you can't go into THAT room until some human being who is NOT you cleans that mess up. And then just stick to that. Don't be a martyr while you're on chemo, seriously. Eventually someone will clean it up. Of course, then they'll come in and tell you that they cleaned it up and treat it as if they were somehow doing YOU a big favor rather than doing what any rational human would to do prevent their own selves from living with cat barf.. but just smile and say "Good job," and never mention it again. If they feel like they are doing you a big favor every time they do something they SHOULD be doing just because it needs doing, they'll never get the hang of "pitching in." Been there. Seen that.
re: Hovering Husbands. There have been a couple of things I've done that my husband has really wished I wouldn't do....like moving furniture....and I had to tell him, look, trust me. I do not want to wind up in the hospital. I do not want to hurt myself. I DO know my limits and I will stick to them, but I NEED to prove that I can still wrestle a (fairly light) chest of drawers from one end of the house to the other. He didn't like it much, but he let me do it. Mostly though, he's hovered and I've loved it. I've noticed that when he talks to friends and family on the phone, he says things like "WE have chemo on Monday," and "The nausea thing hasn't been a big problem for us yet." It reminds me of guys who say "We are pregnant," and I think it's the sweetest thing ever.
@smrlvr I've come to believe that granite countertops are HIGHLY overrated, and I never want them. Thanks, HGTV! :P Oh and congratulations on the good bloodwork: That's HUGE and you should celebrate!
@lorreymom did you have the neulasta shot? Even with the claritin, I've had some bone pain, but either tylenol or ibuprofen tends to knock it right out in no time.
My rant today is that I woke up with a *slight* fever. Well actually it was 100.6, but I was HOT, and the reason I was hot was because i was under two blankets, and had two very warm dogs cuddled up very close to me. Once I got away from them a bit, it came down some, and I went ahead and took two ibuprofen with my morning meds and since then it's gone down and hovered in the 99.5 zone, which is no big deal. HOWEVER, I went ahead and left a message with my onc's office, because after everyone assured me they were healthy for the holidays, yesterday one person I was with on Thursday went to the doctor and got antibiotics for an upper respiratory infection, and another person went and got antibiotics for a nasty sinus infection. SO.... yay. I told my husband that if I caught something from one of them that I was just going to refuse to leave my house except to go to the onc's office for the rest of chemo and I would just SKYPE with the families for Christmas. lol. I'm feeling GOOD, and I do not WANT to get sick, dammit! -
Gayle: I *definitely* needed pain meds post port placement. It's not unbearable agony or anything, but I was actuallyh much more SORE from port placement than I ever was from the BMX. Surgeon sent me home with Tylenol 3. HAHAHAHA. It was definitely a job for Norco, but really only for a couple of days. Got much better very fast. -
Gayle-
I just got mine in yesterday and it is above my implant area and she conscientiously placed it there, so I'm sure they will go above expanders...I am using Tylenol only and have been fine...I had extreme pain with mastectomy for about a week...and used hydrocodone then but haven't needed it now... -
Good morning!
OMG, so relieved that I'm actually feeling better today! For the past three days I've felt like I had the flu, now I feel like I'm just worn out like from having had the flu. Some medicine/SE questions: I had AC #3 last Tuesday, Neulasta on Wednesday, flu-ish Saturday-Monday. The flu-like symptoms were body aches and a headache. (The headache was kind of like that feeling you get behind your ears when you know you're going to cry and you don't want to. And it doesn't stop.) I took Norco one night, and it did help. Should I try Claritin next time? The body aches were somewhat tolerable, but the headache made me upset, which made everything worse. I had a KILLER headache on day #6 of AC #2, and the nurse said it was from Zofran/Decadron. Maybe it was from Neulasta?
Re hovering family...it IS nice, it IS sweet, and I couldn't wait for them to go back to school and work yesterday! When my MIL had breast cancer years ago, we tried to "help" by doing everything for her. I can see now why it made her so miserable. I know my limits and I'm not going to do anything stupid; I just want to accomplish something once in awhile and otherwise feel normal.
Re ports...I had mine put in right under my clavicle at the same time as my BMX 9/27. I still have no feeling in the skin on it! Anyone else? Not complaining at all, just weird.
I went to the LGFB class and got a great bag of goodies. I haven't touched them since then, but they impressed my 19-year-old daughter! I suppose the eyebrow pencil will come in handy, boo hoo.
Paulette, I hope your morning is going well. I too LOVE your posts; you are the life of this party! (One of many!)
Lisa, is your fever down? I had a fever day #6 of AC #1 and should have called. I got a finger wagging at my next appointment.
Welcome to everyone new! -
Fever now is 99.5 after taking ibuprofen, and I did talk to someone at my onc's office---they are SO nice there---and she's going to call me back after she sees what he thinks I ought to do. I HOPE he doesn't want me to come in there to be seen, since I live an hour away and my husband is actually at work today, but hey.... we knew that this sort of thing was a possibility when we chose to go to Raleigh instead of sticking with the cancer center here in Wilson County.
Every question she asked me about symptoms got a "nope," though.... no sore throat, no cough, no urination ouches, nothing. I feel fine, except I'm very sleepy. Actually if anything, I feel the closest to normal I've felt since chemo because for whatever reason, miraculously, things taste like they are supposed to taste today. Even my Diet Coke tastes pretty good. -
yes I had Neulasta on day2. I had pain with that, but recovered after a few days. Was feeling great yesterday, now painful again...can the pain relapse from neulasta? And at day 13...so late? Thx!! -
I don't know if it can or not, but my bone aches didn't even start til about day 5 after the Neulasta shot, so maybe. I've given up on trying to guess what any of these drugs can and can't do, honestly, and just assume that if I start breathing fire and flying around the house like a parakeet, it's probably due to the chemo and/or neulasta. :P -
do any of you know if they will NOT give you steroids or even give you less of them. Yesterday my nurses and I were trying to figure out why I was getting the painful headaches. She guessed it could have been the steroids, but thought their benefits outweighed the headache. Zofran can also cause headaches so I stopped taking that. -
smrlvr-
I had horrible headaches when taking the Zofran ...stopped as soon as I quit taking that...
I only had prophylactic steroid in bag before my infusion, none at home before or after...so my guess is the Zofran. -
I also got Zofran/Decadron as my premeds, then I take them for three days after. They told me the combo could be the cause of my headache, so if I needed anything AFTER day 4, skip Zofran and go to Compazine or Ativan. No one ever said there was a different option than Zofran for the first four days. Can the headache happen after you stop, i.e., is it still in your system long enough to be a problem? I guess I'll ask at my MO appt. on Monday. I seem to be able to take the body aches caused by all this, but the headache makes me a nonfunctional crying blob. (Correction: a nonfunctioning, hairless, boobless, crying blob. A general mess.) -
bec - Zofran is just an option - there is nothing that says you can't take the Compazine from the beginning. Zofran was useless for me in that it did not prevent vomiting and it gave me a wicked headache, so I stopped taking it after tx#2. My onc's instructions were to start taking anti-nausea (whichever drug I preferred or wanted from the choices of Zofran, Compazine or Ativan) the evening of the day I received chemo, and to continue for 72 hours. You might ask about discontinuing the Zofran, starting with a different drug, and then see if you still get the headache.
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Hi ladies. This is my first day at home and out of the hospital. I am trully savoring my 'freedom' and appreciating a few things differently:
I am happy that I don't have a high fever, a low blood pressure, and a constant and sharp pain any more.
I am happy that I'm not being poked with needles, probed with ultrasounds, squeezed with blood pressure cuffs.
I am happy that I can eat food of my choice.
I am happy to do a few chores and not staying in bed.
I am happy to be able to sleep as long as I need, without being woken up by somebody for my vitals or meds.
I am happy to enjoy the peace and quiet of my home without listening to a PA system blaring constant messages behind my head.
I am happy I can step out into my backyard for an instant breath of fresh air.
I am happy to sit at the piano and play instead of just listening to music from my I phone.
I am happy that have a chance to say good night to my family instead of a nurse before I go to bed.
I am simply HAPPY to be HOME.
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Thanks, SpecialK! That will be the first question on my list! -
@Amazon: Congratulations! -
Yeah, my onc didn't really give me ironclad instructions on how to handle the anti-nausea meds; he said I'd see what worked for me and stick with that, regardless of what he said. Smart guy.
I have Phernagan(sp?) instead of compazine, and that really was my go-to drug. I never was actually nauseous anyway (keeping in mind that I've only had one round so far so that could change.)
I've mostly saved the ativan for emergency-use since it's anti-anxiety as well as anti-nausea and also gives me really great sleep if/when I need help with that, and I think only used the zofran twice, or perhaps 3 times.
I also had the steroid in my IV and then to be taken via pill for two days after treatment, AND I think two other anti-nausea drugs in my IV--- aloxi and something else-- and I think THAT is what made the difference for me. -
Welcome home Amazon!!! -
welcome home Amazon! Must feel greet!
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