January 2012 chemo
Comments
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I added my info to my treatment line.
New symptoms. Eyes getting all gunky at night and lids are puffy and sore but don't seem red or infected. Also last night (morning of day 5) I was 'wired'. Was up every hour or so until I finally settled down at 5AM. The first two or three times I got up to go potty when I went back to bed my heart was feeling like a heard of horses were galloping around in my chest. I had to do a bunch of deep breathing and relaxation stuff to get it to slow down. Should I be concerned?
Peggy
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Peggy - I've been getting eye irritation around 7 -10 days after tx. Mo said it was dry eyes. Makes sense. My whole body is drying up! I don't sweat anymore. Very weird!
You probably should call your dr about the galloping heart. Isn't AC rough on the heat? I get a heaviness in my chest area a few days after tx, but feel that it is more my sternum (from neulasta) than my heart. I definitely get out of breath more quickly!
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I'm having trouble sleeping through the night also. I get up every hour or so to use the bathroom. Last night I found myself wandering the hallways at 2 am. I just couldn't go back to sleep. I'm going to feel that today!
Did anyone else sleep in a recliner after surgery? It was suggested that I sleep in a recliner to keep from sleeping on my sides or stomach after surgery. The PS didn't want me to accidentally interfere with the healing process. Well, now I'm stuck! I tried to sleep in bed, but am so uncomfortable. With reconstruction, I have new flesh where flesh didn't exist before. I just could't get in my old positions and ended up back in the recliner. Even with strategically placed pillows, I could find that perfect nesting position. Am I doomed to spend the rest of my sleeping life stuck in a barcalounger?
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Jen I have an appointment this afternoon with my doc. I'm sure eventually when everything is healed and you are back to normal you will be able to sleep in bed again
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Kitchenella, I think the galloping heart rate is a side effect of your chemo. One night I woke up, had the same thing, and woke up my husband, telling him I thought I might need to go to the ER. He lay back down with me, rubbed my back, and I did the deep breathing exercises, and it got better. I still hear my blood pumping in my ears, though.
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I want to reply to so many of you by name.. but so many.. My heart is overwhelmed. All of you are so nice , I am really not finding a word. I am dreading next chemo too.
God Bless. I hope we all get thro this and be cancer free forever.
I am scared.
Bela
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BelaT- I am sending cyber hugs to you. I think we all have been scared at some point, but we just need to remember to take one day at a time and maybe it won't seem so overwhelming and scary.
Janetanned-I slept in a recliner for 2-3 weeks after surgery and found it very difficult to sleep in bed. I still wake myself up trying to roll over and get comfortable. It does get better, but it has been very frustrating--I really would like a good nights sleep-lol. Recently, I have been waking up for the past three night at 3 am and then either 430 or 530-ugh! -
Janetanned - I go back and forth between my recliner and bed a couple of times a night. I'm a side sleeper and I can't sleep on my side with my port. Drives me crazy!
{{HUGS}} Bela - chemo is scary, but take comfort in knowing that there are many of us who are going through this with you.
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Thanks Ely ..hugs back to you.
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Bela T: I was scared also. Now that the first is done, I just feel dread and a bit anxious. HUGS to you!
RECLINER sleeping has been my habit for many years (since my heart surgery and some back problems). It became a habit. My kids joke that I don't need a bed or bedroom. Anyway, I' was trying to break that habit before the cancer DX and it's tougher now. I loved sleeping on my side but it's the one that had MX. I switch back and forth between the LR recliner and the bedroom. I hope I can lie on that side again someday. I can't sleep on the other side.
DRY eyes. This has been a problem for me also. There are good products on the market for this. Can't think of their names at the moment..
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FLDREAMER,
Thanks for the hugs, you guys are great.I am thinking about surgery too after I finish chemo. Rad or surgery ?
Confused, what to do.
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Doing well! For more rounds to go. We can do it !
Please dink your water, your green juice and execrcise a bit every day !:)
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Hi everyone. I have started first AC on Feb 1 and my second will be Feb 15. I am so nervous about hair loss. i don' have any symptoms yet. could you please tell me when the hair start to loose. thank you
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Ella - I noticed that my hair began to really fall out a day after my second dd AC treatment. It had started earlier in the week and was noticable in the shower drain. I had my head shaved on day 15. Prior to this my scalp began to feel weird and a bit sore. I bought a wig and a few scarves before this, so I was ready.
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Peggy: I had the "galloping heartbeat" after the first AC. I mentioned it to my NP before my second tx and she lowered the dose of steroids by half - said it was a SE of the decadron. Went from 10 to 5 (?), whatever the dose was. I noticed that my heartbeat was much better this round; I had "slight" galloping (maybe a trot?
) during the first few days but it settled down and my heart felt "normal" again by Day 10.Ella1998: I am scheduled for my third AC this Thursday. My hair has been hanging on like an annoying ex-boyfriend. It started to fall out the day after my second AC treatment, so I buzzed it. The buzzed hair started to get painful and fall out the week after my second AC treatment, so I shaved my head. But much of it is trying to grow back now. I suspect I'll lose even more after the third AC this week.
Janet: I did not have surgery that required reconstruction, but I am not sleeping through the night at all (partly peeing all the time, partly just awake). We bought a memory foam topper for our bed, and I discovered that after I've laid on it a while and it's absorbed my body heat, it totally forms to my body and it's like having a "nest" of sorts. We topped that with a fluffy pillow top, and that helps with the nesty feeling. So much so that when I'm wide awake at 2:30 am, I still hate to get out of bed because it feels so comfy... I hope you start sleeping long and comfortably soon!
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Ella - Here's a revision of an earlier post. I started on Dec. 15. First of all, my advice is to take a close, serious look at your face and find the things you find most beautiful. With good earrings, a nice wig or snazzy hats, this is really the one side effect you can take control of and make work for you.
I noticed funky things with my hair about 12 days after my first tx - someone described it as like when you pull your hair too tightly into a ponytail, and that was pretty accurate. About 14 days out, I noticed one strand would come out every time I ran my hands through my hair (which soon became every 15 minutes...). Over the next few days, that kept increasing. I started wearing a night cap to reduce the amount my hair was rubbing on the pillow. Since New Years was coming up, I held off on washing my hair and took it really easy. It made it. I have very, very thick hair, but by Day 21, my hairline was visibly receding and thin. I also had what I called 'steel wool' hair - when I lay down, it was very prickly.I had my hairdresser come in on Day 22 (my tx day was changed so I had two extra days between tx's). She couldn't get herself to shave my head 'just in case it doesn't all fall out,' so she gave me a pixie/buzz. By the first time I put a buff on that night and took it off, what little bangs she tried to leave me were gone.The update since then: The hair continued to thin, but hang in there until about 10 days after tx #2, when it started to come out as quickly as the first time around. Still, I'm surprised at how many strands stayed put. I expected the same thing after tx #3, but I've hardly lost any more. And the remaining hair seems to have grown rather quickly. The down side is that I can't consider going commando, because my sparsely covered head would probably freak people out more than if I were bald, but I'm thinking if some of it makes it all the way through, that's a great help. Still, it sounds as if most women are most comfortable shaving it all off once it really starts falling out.
Here's a link to an album I uploaded documenting my hair loss and the hats and wigs I've been finding. There's one photo that shows my nearly-bald head - it's not much sparser now. And the last pic is the wig I picked up on Saturday and am really enjoying.
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Thanks to you all for being so understanding about the TMI and toxic poo. I'm so glad to know I'm not the only one who's struggling with this problem. I've had to take Immodium the last two days, which worries me as I prepare for tx on Thursday this week. I don't want to get constipated before treatment starts, because it's hard enough to deal with after. I'll mention it to the NP this week and see what she says - and pass along any information to my favorite gals!
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Nancy - I also tried describing the color, etc, to my MO the first time around just to make sure everything was okay and 'as expected', and I got kind of an odd look from her. I'm starting the Ducolax this evening... I'm also doing tx on Thursday.
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Neuropathy, Hippus and Blisters..Oh My??
I told my MO I thought I might have Neuropathy...she said who diagnosed that? (I HATE when the do that!!!) I said well then you tell me.... I am having Tingling, Extreme Sensitivity and Pain (Like frost bite) on all my fingers except the pinkies, no where else (No feet issues-at least not this one). My Mo said it could not be Neuropathy as the AC has nothing in it to cause Neuropathy and I had no numbing sensations at all, and it hit both hands and the exact finger on both hands, but it could be that my Nerves are upset and gave me a Lyrica prescription, which we filled on the way home after the 3rdAC Thursday night. By the time we got home my fingers could shoot lightning out of the...I took the Lyrica and it removed 50% of the issue on the 1st 2 days and then the bone pain hit and I forgot everything else...Wednesday I went back on the Lyrica, which I take every 12 hours. and it was removing 70% by that time. I wanted to know the side effects from the Lyrica vs. the Chemo Head I had for the previous 10 days. Saturday I didn't take it....I noticed by Saturday night that my fingers, hands & arms were tingling a lot-I was shaking them and rubbing them but it didn't help...had to take the Lyrica and about 2 hours later it was much better.
Has anyone heard of Neuropathy from the AC?????. I really thought this was the main issue for us with the "Toxane Drugs" mine being Taxol. Not sure what to believe anymore.
While I was looking up my arm tingles...my Right eye decided it wasn't going to focus, more than normal (I've had the Dry, Running, itching and slightly out of focus eyes too) It felt like something was in my eye, so I looked in the mirror and my pupils were contracting and dilating...Freaked me out ...anyone had that happen yet?? I seem to be the lucky one with the extreme rare side effects. I looked it up and it's called Hippus and/or pupillary athetosis, hasn't happened again..once was enough, thank you. The Lyrica seemed to take that away as well.Oh then this morning I woke up to 2" Blisters on both my feet, same areas, pads by the toes...Put them on a cool surface...gone in 2 hours...Everyday it's something weirder then the next...
Barb
JennT28 ~ See your not alone in your complaints....I'm even on Delaudid for 3 days my bone pain is so severe, which stopped working this 3rd shot...going to the hospital if that happens on my fourth and final shot this Friday.
I feel much better now, venting here is way better than an Ativan ...:) -
Sorry that was a little long...I have ocular migraines and can only be here on my good days. Today was a good day
Barb
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I have sleepless nights and move from bed to guest bed but I was like that before chemo, but now it is worse. I decided that drugs were the answer instead of not getting sleep. I take my ativan and sometimes oxycodone (I can't have tylenol in anything because of my high liver enzymes). It really helps me sleep. I also just started an antidepressant which should help after a few weeks on it.
Barb - I thought I had neuropathy because of tingling/numbness in my feet/legs and a little in my hands, but it turned out that it is probably because of my high liver enzymes. I hope you get to the bottom of it.
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Barb - That sounds weird about the neuropathy. I hope that medicine really is helping. I had some fleeting tingling in my palms after my 2nd tx but nothing since. If you are supposed to be doing Taxol next, really press your MO about whether you'd be at increased risk and if there's an alternative. I got switched from AC/T to TAC before starting treatment because my MO wanted to reduce my risk of neuropathy.
I didn't have a recliner after my bmx and really wished I did. I slept on a pile of pillows and barely slept for about five weeks. Finally I asked my PS if I was healed enough to sleep flat, and he said yes - I bought a 'cloud' pillow and slept much better after that. I have had a number of nights when I can't sleep since starting chemo, but fortunately they've been pretty rare.
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Nancy I suspected it was the steroids because I was really flying from Day of infusion (Thursday) all through Sunday night. I will definitely ask them to do something. I have had absolutely no problems with nausea so I don't think I need so many steroids. I dragged myself out of bed yesterday to go to my family Dr. and he said my heart was fine. Thank G-d. Spent the rest of the day in bed. This morning I'm up but kind of shaky.
As to the neuropathy thing. I find that the first few days after my infusion the skin on my face feels a little numb. I wonder if that is from the steroids also?
Peggy
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I was having such a SE free time after my second AC treatment last Wednesday that I think I got a bit cocky. The biggest problem had been the steroid induced lack of sleep. Yesterday, operating on about 3-4 hours sleep over the previous couple of nights, I went out to show property to clients. My clients both happen to be young doctors, the wife an endocrinologist, and she said the steroids were definitely the culprit of the sleep problem. We finished our tour, I dropped them off, and promptly proceeded to feel as bad as I have since chemo started. Deep, sharp stomach pains, "fluey," anxious, exhausted. Now I've slept 12 hours or so and don't feel as awful, but still much more off than my cocky self was a day ago. I don't feel I've been pushing myself hard in general, but it seems pretty damn easy to go from feeling pretty good to pretty awful in short order.
The unpredictability of this is so hard. Hope everyone else is hanging onto the side of the boat, riding out the storm.
Annie -
Annie - sorry to hear you're having a hard time; I hope your long rest helps you feel better. It really sucks when we can't predict how we're going to feel. After two treatments, I thinkg there is a kind of schedule that I can predict - which days are going to be okay, which are going to be really bad, and when it's all going to get better again. I fondly refer to it as my "Chemo Schedule," as in, "Let me check my Chemo Schedule and see what's going on that day" when someone wants to make plans.
Day of treatment I'm buzzed because of the emotion and steroids.
Day 2-4 I sleep only a few hours but am exhausted and buzzing from the steroids. Constipated but by Day 3, with lots of water and Mirilax and Dulcolax, I'm on the road to recovery.
Day 5 I start the slow slide down...my tastebuds and sense of smell takes a dive...I think I'm doing really great but looking back I realize I'm starting to feel horrible. I work this day and have learned I cannot come home and go to yoga; I'm too exhausted.
Day 6 I have a day off of work so I try to take it easy. I can't go to the gym - I've got the galloping heartbeat thing that scares the crap out of me so I try to get homework and housework done.
Day 7 my tastebuds and sense of smell are so totally off. My hearing bothers me the most this day, too. I am usually in bed by 8:30.
Day 8 and 9 are my totally-bad, fall-apart, cry-and-whine, feel-like-I-have-the-flu days. I have decided to spend these two days in bed with homework, as much as possible. To take naps when possible. To fully commit myself to self-care, for at least these two days.
Day 10, which is a Saturday for me, is like being reborn. My constipation is gone; my tastebuds and sense of smell return to somewhat normal. My heart no longer pounds when I walk fast. I sleep decently, and for longer than four hours. I can go back to yoga and running. I have school all day that day, and actually feel good throughout. It seems that it's all up-hill from here.
I'm hoping this all holds true during this upcoming treatment. Sometimes, I have to "do" when I don't want to (work, for instance) so when I have two days off I am determined to do as much self-care as possible. It's hard to take care of myself, though - I feel so guilty about it! I have to keep reminding myself that I have cancer, dammit, and it's okay to take care of myself!! Why is that such a hard concept?
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Peggy - I didn't have any nausea during the first round of AC; when they reduced my steroid during the second, I expected some naseau but have still had none at all. So for me, at least, the reduction didn't result in any negative change that I can pinpoint. I hope this helps for you.
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Nancy - exactly! Why is the self care so frought with guilt? Probably because we're women and seemed to be programmed to put our needs last. To keep up the 'everything is fine' look when really I want to curl in a ball with my blanky. I'm trying to recognize that self-care is of critical importance right now, not an indulgence. Just look at the day by day course of your post-treatment expeience. Ten out of fourteen days basically are awful (certainly compared to our healthy lives), which is incredibly hard. I was on a little bit of a pink cloud (no pun intended) after this second A/C. Now on Day 7 and feeling very much not okay. So today I'm going to lay on the couch as much as I can, re-watch the first season of Downton Abbey, and tell myself my body is hard at work, even if I'm not.
Unfortunately, my partner came home last night with a head cold. She's wearing a mask, as I'm hitting my Day 7-10 wbc nadir.
Annie
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i'm struggling with this self care thing too- need to set limits to my kids and phone calls etc....i am, by nature, actually lazy and i feel that right now i am justified in curling up in the recliner with a book or the tv becuz dammit A) i have cancer and
i worked hard to get us moved so i could start tx...ok- that was my story!
btw i miss the heck outta school--cannot wait to get back but know that it was good i took off this qtr/semester.....
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Hello everyone,
I want to really go name by name but being lazy,
I want to know what to do for my 2nd ac but 3rd chemo? I had taxotere first but had a reaction so changed to ac now.
I was not really bad with ac first time. I have lost hair after first taxotere but stillhave few strands here and there.
Thanks
Bela
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During the 2nd session I kept saying, this is too easy, is this stuff working, why am I so much better than the 1st session. I mentioned this to the nurse giving me the Nuelastra shot and she checked my chart and said, that this was the strongest Regiment for breast cancer they offered, trust me it's working. Well I was right the 3rd was my worst, I wake up everyday and measure how much of me has returned from my "Hot Air balloon ride" I remember crying in the shower the morning of the 9th, because I was still a muffin head, but I pulled it together and had a friend over for 4 hours and had lunch together. 10th day I was almost myself again about 90% and was able to leave the house for 7 hours, 11th day I nailed the landing and I was back...woohoo!! Here comes the 4th and final AC, this Thursday and I am starting to sweat. I'm trying to educate myself now for the Taxol in 2 ½ weeks..knowing I'm going to loose at least 10 days of it to another Balloon Ride.
Tina ~ If you don't mind me asking, did they give you a liver enzyme blood test name or how high a number you are?? I found a ALB test (Albumin) on my blood work, it is part of a liver panel test and mine on Jan 19th before my 2nd session was 5.0 g/dl this labs ranges are 4.0 - 5.2 g/dl, but I was 4.5 prior to any Chemo. Does your discomfort with this go away?? Mine never does, I have better days and worse days whether I'm on the Lyrica or not. I'm going to ask about that this Thursday.
Nancy ~ I wanted to post my 10 days....but I can't make it as short as yours....POUT!
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