March 2012 chemo
Comments
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It is now day 3 of cycle #3 for me - neutrophil count was 0.1 a week before tx; on tx day it had come up to 8.8! I just think it's amazing how quickly that can turn around.
This time around I made sure that the appt for the Neulasta shot was over 24 hrs from chemo - that hasn't been the case before, and in reading the literature for the drug I see they really emphasize that the shot should not be given less than 24 hours after chemo. Don't know whether that will help to not let it get into the danger zone, but figure it couldn't hurt. We'll see.
About steroids - I get Decadron in my infusion before the A/C, then my MO gave me Decadron tablets to take twice/day for the 3 days following chemo. The first session I rather enjoyed the "buzz" it gave me, allowing me to get some things done. It did mess with my sleep, though and I didn't like that so much.
After the second session, the buzz seemed to be even more - I was extremely chatty, not like me at all, and sleep was even more messed up. On the Sunday after my chemo on Tuesday, I could barely drag myself out of bed for more than an hour at a time. Just such an industrial strength tired I can't even find words to describe. Looking back, I now think this was probably the time when my white counts were at their lowest, and it was combined with a steroid crash.
I discussed with my MO, and he suggested I not do the oral Decadron for the 3 days after tx to see if that helped - he said the only purpose of the Decadron was to stave off nausea, and if I was able to keep it under control otherwise, there's no need for it. So that's what I'm trying this time. Still got the Decadron in the infusion, though. So far, after the first night, sleep has been much improved, I'm having to do more to keep nausea at bay. Probably too soon to give a pronouncement as to whether this is better. One thing I know, lack of good sleep will bring us down!
I figure if the nausea is too big a problem, I might try one Decadron a day instead of the two - by the time I get this all figured out chemo will be done! Gotta keep trying to make things more bearable, though.
When I read all of your posts talking about going to work, taking care of kids, etc I just marvel at how you are able to do it all - I just could not take care of more than me. So great big kudos to everyone who is fighting this fight.
Hang in there, everybody, we will get through it, and then we can give encouraging messages telling others how it does all get better!
Karon
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Karon, I can barely take care of me as well.......and all this medication adjusting.......well get it just right, and it will be over! I can always feel when my counts are down...soooo sluggish and fatigued, but not where you can sleep it off. I have a few days before tx 3, and still am not quite right!
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Hi. Sorry I havent posted very much but I do read the posts everyday and think you are all great. I shaved my head last friday and it was hard because my 8 yr old was having hard time with it but my 12 yr old got into and cheered my other son up. I have two boys and they have made this cancer experience so much better because they take my mind off of it. I go in for my 2nd treatment of TC this morning. Then only 2 more. I start back to work next Wednesday and have to be there at 6 or 7 am everyday so I am concerned about being too tired in the morning and then at night having energy for my kids.
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Hi ladies...
Zillamom - good luck with your tx today and going back to work.
Karon - I agree, I do have kids but I am not working at all and I have LOTS of help with the kids. Do not see how others are doing it all. I basically only have to take care of me during the bad times.
RE: Decadron - I only get it before the infusion and didn't notice a steroid buzz at all the first time. I think I was just sitting around waiting for any and all SE to start though.
Connie - what a wonderful stylist you have! I actually have some of those caps made out of pantyhose type nylon and I can't tolerate them...I am wondering if it will get better when all this stubble is gone or if I need to get a cotton type liner. Right now I am just not wearing a liner. Itchy!
Sissydi and Michelle - I go for #2 on Monday.
slak - that is why I did my cutting by myself first - I didn't want my kids or anyone here in case I got upset - of course, DH had to go back and fix it later because I didn't know what the heck I was doing with the clippers.
munnybunni - I am sure there are some ways that you could try as far as diet but I think that the Nuelasta is just so succesful and it is so vital to keep those counts up so you can continue with treatment, it is highly recommended. My count was low again a week post TX but who knows what it would've been w/out the shot.
Kim - Happy Belated Birthday!! And where did you get your halo? As if I live there and could go the same place but the wig shops around here don't carry them. I just hate to order online without seeing the color, etc...I am going to HAVE to have one. Last night at the art studio, she didn't have the a/c on and I was sweating from my wig. And it was only high 70s.
KCB - fingers crossed that you have a better time this time around.
Had a "normal feeling" day this morning. Awards assembly at youngest DD school and then went to older one's school to take AR (Accelerated Reader) tests for a parent/child AR challenge. I just typed in books I had read and managed to pass enough to earn a few points. I love to read but those test ask such details...I have read Gone with the Wind at least three times and only made 50%! I had a couple people comment on my "hair" and realized after I talked with them they had no idea about the BC so they were genuinely complementing me so I guess it doesn't look too fake.
Apologize in advance to be a downer but this next paragraph is going to be a bit maudlin. Over the last couple days as I have felt well enough to "do go some things" I just feel like I need to do everything I can with the kids right now "just in case" For example, I have avoided having my picture taken for the last 7 or 8 years. I just never lost the baby weight after #2 and gained more and more and never want to be in pictures. And now I feel like I need to well, just in case. As we were leaving for the party, I took pics with each of my kids (I would normally just take one of them if they were dressed up cutely). Last night at the painting party, I was thinking "I wonder how many more birthday parties I will be able to plan" Sorry, I know this is depressing but I just feel like the worry and sadness is overshadowing even the good times. During the bad/sick days, I am just concerned with surviving. But when we have good times, I keep thinking "how much longer will this last?" I know, I know there is always the old reliable "one day at a time, you could get hit by a truck" cheer but I am usually careful not to walk out in front of trucks. Ok, I'm done.
Funny me will be back later today hopefully.
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Kltb04- I was in the exact same mood last evening. I am assuming it is unavoidable and hopefully such thoughts will get less with time. My kids are young too and I really want to be around until they are ready to leave the nests. Everytime I feel this way I ready posts from 5+ year survivors and try to get away from these dark thoughts. Also I am looking to see if there are any relaxation classes. Would love to get input from the folks here as to how each of you deals with these moments.
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I am afraid I don't post much but keep reading your posts and it helps me a ton. I am 8 days out of Tx-1. Finally feel better and able to do a few things. Nausea was bad on day 3 and managed to get more drugs to control it. But day 5 had severe heart burn. So now on prilosec which has controlled it. Still tired but otherwise feel ok.
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I call my friends who are survivors. One is 9 years out and the other one is 7. They have been a God send. And I talk to everyone on here which really helps. Keeps me from feeling isolated.
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Hello March 2012 Chemo Marchers
I'm pleased to report that my second infusion of FEC (Fluoroucil, Epirubicin, Cyclophosphamide) was much easier.
The premed anti-emetics were halved and I believe my dose has gone down to 140mg for the FEC.
I had a slight headache during the Cyclophosphamide but that went within half an hour, slight tingling in the hands but no heart fluttering - hurrah!
Felt very tired on Tuesday, energy yesterday and tired today, so I guess fatigue can be cummulative, which is what I have heard.
Apart from that, feeling good.
I hope this offers a little encouragement to the ladies and gentlemen going for their second infusion in April 2012.
Warm wishes
Alice the Cat
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Kltb04: my feeling is you have to feel what you feel, when you feel it. How the heck can you be ready for all the deep dark unexpected thoughts that can come at a time like this? just feel it, live it, accept it, and let it go when it wants to go (whatever the feeling). As much as we all get a kick out your quirky humor here, please please don't ever feel you need to keep it "on" for us. Say what you need to say when you need to say it. That's why this place in cyber space is so amazing. Hugs to you, major hugs.
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Back in emergency today, despite still feeling way better on day 3 than on first round. Yup. Blood in stool. Tmi alert. Family Dr had no time today, onc wanted it seen to right away so here I am. Excellent. Get to have the nether regions examined now. Not one shred of dignity left here. Me in my ball cap and mask and gown. I am a picture of elegance. Not.
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Aww KCB! That stinks! With all chemo does to our bodies, I'm shocked we are all not in the e.r. More often. Keep us updated.
Triplem67, what do your survivor friends say to keep you up? I don't know any survivors personally, would love to hear what they have to say. -
Sorry to hear that you're in the ER. Might not feel the picture of elegance, but you are a picture of strength. Let us know how you're doing. Feel better.
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Sissy- they were the ones who calmed me down when I was diagnosed. They were so calm! They said "look at us. We had cancer. It's just another stupid disease, but you will beat it. It's going to be a hard sucky year, but you're young and will kick its a$@!" and their husbands really helped mine calm down. He was so upset and angry.
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KCB - awww, not again with the ER - I had that issue too but it was more of a "after the stool" rather than "in it" and it was definitely from straining. Hang in there...keep us posted.
Alice - great news that things are better this time around.
I do sometimes google "survivor stories" or "Stage II survivor stories". Googling anything about HER2+ is muy dangerous though - the advent of Herceptin has totally changed the game with that one and so much of it is outdated...anyway, clinging onto those stories helps. I don't know any survivors personally - Michelle, it's great you have those people to talk to.
It doesn't help that I am such a hypochondriac that I am going to be one of those people calling their MO with any and every symptom. Still having the rib/side issue I posted about before and I think that is what is making my mood worse because I am constantly aware of it. Bah - I will mention it to MO on Monday but she is probably just going to pat me on the head and say "um, yeah, you just had a PET/CT scan remember?" But anywho...
Ok, back to it...trying to make some plans for this weekend/Saturday...and watching Dateline on the DVR to remind myself it could be worse and I could get murdered
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Back in emergency today, despite still feeling way better on day 3 than on first round. Yup. Blood in stool. Tmi alert. Family Dr had no time today, onc wanted it seen to right away so here I am. Excellent. Get to have the nether regions examined now. Not one shred of dignity left here. Me in my ball cap and mask and gown. I am a picture of elegance. Not.
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KCB - man no fun - hope you feel better soon!
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Hi ladies. I'm back finally. It's day 2 after 2nd AC treatment and I have to say, pardon my language, but I feel like sh**. Nauseous, exhausted - don't know why it has set in earlier this time. Last treatment it didn't set in until Day 3. This time, it happened fast. Finally made it to work about 1:00, now have to go get my Neulasta shot at 3:30. But, I am thankful today for my diagnosis and clear scan. My friend who was diagnosed a couple of weeks after me just got her results from scans today and she is living my nightmare. The cancer is Stage 4; it's in her lungs and bones. My heart is breaking for her.
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lanagraves, sorry you are feeling so poor today and that is awful about your friend. Cancer truely does suck!
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Oh Lana, I am so sorry for your friend. There just doesn't seem to be any method to this madness does there?
Rest up when you get home and feel better soon. -
Munnybunni- thinking of you for that cat scan. I had one before chemo start and am sorry you had to go during.
Life is a real bitch!! I'm trying to stay positive but it's seems as each day there is a new SE that bothers you. I thought I was doing better and now day 8 of tx 1 have horrible indigestion. Called ONC and got protonic??? Is anyone else taking that? Feel like there is something burning my throat.
I can't believe next tx is scheduled for 4/11. Anyone else scheduled for that day? -
There certainly doesn't, ktb. She and I have been talking daily. Our diagnoses were so very similar except she had more lymph node involvement than me. I know my scans could just as easily have gone the same way, and I am so very heartbroken for her. Maybe it's just because I'm so sick from the chemo today, but I just can't stop crying.
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Yea for a 3 day weekend! I wore my wig today and by around 3 pm I had a dull headache, I guess I wasn't used to it and maybe that caused it. Everyone seemed to like it which I'm glad because I was very nervous to wear it into work today. Also had my blood work today and all my counts are good! My MO loved my new hair too - of course he probably tells everyone that! Oh well, tomorrow is the big shave! Today I cut it off at my chin because the shedding was crazy and it made it easier to wear the wig.
Hate that so many of you are having bad SE - sending you all big warm HUGS!
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lana
I am so sorry to hear about your friend. Any of us could be in the same position I have come to realize. There are others on these boards that are still around to tell about it with the same DX. Praying she has a great MO that can get her to NED and be around for a long time to come.
Maureen
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Aw lanagraves. How very sad for your friend, and for you and I'm sorry to hear you feel so rotten all round. It's all crap.
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Home from ER. Yes, straining, prescribed some kickass (ha) stool softener said to be better than off the shelf, and off I go. Only other thing of note: my WBC is 68!!! It had been 7.13 just before chemo, yesterdY had Neulasta, and now they ard sky high!! So ER wanted me to report this to onc, and I waited until I got home and if course nobody answers phones after 4.00, and it's a long weekend. Oh well. Any risks known to having crazy high WBC?
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Amy's (amymomto5) was high but not that high - I think it was around 29 or so. I will text her and see what she has to say if they told her anything.
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KCB don't they have an on call doctor?
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Onvacation: good question. Their message says call ER If urgent after hours. But I did have my chemo pharmacist's email so I emailed her and reported all, and she emailed back saying she would be sure the onc got all the info.
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Amy said her dr wasn't concerned and by the next week it was back down to 13. But if you are worried you could call an after hours. But I bet it is cause you just got the shot so recently.
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KCB at least you got an email back! My chemo place does have a number that is answered 24 hours - not sure how long it takes to get a call back though, hoping i never have to call. Hope you count gets better soon!
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