August 2015 Chemo Group
Comments
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tazbear89, you are welcome, and I hope it is the Zofran causing your headaches and that they go away
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SDCA and sio, sending hugs and healing! I hope you both feel better and get released very soon!
Sloan15, you look gorgeous! I just got my caps in mail today. When I showed my DH he wanted to take a picture, but I said no, not until I actually need them, if you please!
Starting DD AC on Monday. I'm so nervous I'm snapping at everyone (sorry family and friends!). But I've done all I can to prepare and the rest is in my body's "hands."
Sending lots of love to everyone and more thanks to all who have gone before me for their experiences.
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taxbear89, just one more thought. I think what they put in the chemo bag is Zofran, so maybe ask at next infusion. I had Aloxi added to mine, and no nausea, ever, and I took nothing other than what they gave me the day of chemo.
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It's 10:30 PM and 101 degrees outside.... Not exactly wig weather, you know what I'm sayin'?
Sio- I'm on minocycline antibiotic before my next chemo. I had the neupogen shot to increase my WBC, and when they went up, the NP said I was good to go for my next infusion. Any idea if the source of your infection?
SDCA- How are you feeling? Out of the hospital yet? I hope your feeling better.
Hang in there those of you in your first week on infusions. I'm on day 12, and I finally felt completely normal today. There were other days I felt good and had no side effects, but today I just carried on with a normal life and really forgot about this cancer. For a while, cancer is the only thing you think about late at night and first thing in the morning, AND THEN ONE DAY IT'S NOT.
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Sloan, beautiful photo! Thanks for the Pier One recommendation--there's one just a mile from my house, so I'll have fun checking it out later today.
Sio, I hope you feel better soon!
Boop, welcome. Re: hair loss, it's strange b/c I always spent lots of time and money on my hair, but I go around completely bald now and I don't care. I have cancer and I'm going through all of this crap for a year+, and wearing foobs or a head covering feels as if I'm hiding myself. It's not even as if I want to identify as a cancer patient; it's more like I'm in this process 100% right now--like it or not--and part of that is rocking the bald head and living flat. It's my strange path toward acceptance (and I don't mean to imply that you should feel this way).
Here I am last night in Annapolis with my bookends--my oldest child (29-year-old on the left) and my youngest child (17-year-old on the right):
As my youngest likes to say, Fuzzy Wuzzy was a bear, Fuzzy Wuzzy had no hair, Fuzzy Wuzzy wasn't fuzzy...was he?
Or, more appropriately:
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Hi all - I am finally done with my 5 days of steroids and slept for the first time last night. So lovely to finally get some solid sleep. Those steroids make me feel like I am jumping out of my skin at 3 AM. I took the melatonin for one night and not sure if it really helped but I going to take it from the beginning next round.
So round #2 - pretty similar to round #1. I would say the metallic taste came back sooner. It had kind of gone away the week before my 2nd treatment which was nice. Appetite off but nothing too bad.
I am chugging along. I am so sorry to hear about complications and side effects with many of you. I hope and pray that everything goes well for each and every one. @sloan15 - love you pic! You look terrific!!
I can't wait for all of this to be behind me (and us!). Meanwhile - I take every day as it comes. One foot in front of the other as they say.
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Sloan - the doctors don't know the source of the infection. The internal medicine specialist said they don't know the source in about half the cases. Well, only two mor AC treatments and then on to taxol. I read somewhere that the wbc does better on that. I hope so.
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Sio, I'm so sorry to hear you are in the hospital, too. I hope you and SDCA both improve asap!
Welcome to the chemo party, Boop! Sorry you have to be here, but everyone here is so wonderful and supportive.
I'm stilling doing pretty well. I needed to use nausea meds yesterday. I've had some nasty hiccups a few times and the chemo nurse that administered the neulasta shot said it was a SE to the cytoxane. I had a sinus reaction during treatment and I guess that is just a followup SE.
So, for counting the days of treatment, are you all considering the day of treatment day 1 or the day after treatment day1?
Also, for those of you taking L-glutamine, are you only taking it during Taxol, or are you starting it with your other chemo meds? I am on AC, followed by Taxol. I just got the L-glutamine yesterday and wondering if I should bother during AC, since it doesn't seem to cause much neuropathy.
Do you all get two hours of fluids before chemo? My doctor has all his patients get two hours of fluids. He also didn't sent me home with an steroids and I didn't have to take anything the day before treatment. Are you all getting steroids to take at home?
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My skull is itching like crazy. I don't if it's from the unusual humid heat waves here in S. Cal, or is it from the sensitivity of hair lost?
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SDCA and Sio, I'm very sorry that all this happening. Our love and hugs to you. I hope you are feeling better. Hang in there.
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JenPem you are beautiful! With hair and without! When I loose my hair I will not be able to walk around without a wig, because I have a very big nose ( always was dreaming about nose job to be done, but I was scared to do the surgery). I just thing without hair my nose will look even bigger
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Your follicles can be irritated, with itching, aching, and scalp tenderness. Try sleeping in a cap or bandana tied at your forehead, or using a satin pillowcase, or buzzing your hair short if you haven't already.
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Getting close to that 48 hours post first chemo mark and 72 hours post targeted therapy. Feeling a bit dizzy, tired, a few body aches, slightly constipated, my tongue is burning, and my sense of taste is off. So far, nothing unmanageable, but I am prepared that it could get worse. I finally slept pretty well last night, so I was very glad about that!
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Whoever here has a Medi-Port, did yours itch almost immediately after it was implanted? Mine itches and it started the same day I had it put in, as the anesthesia wore off. Is this normal?
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Bunnybumps -
My port itched a bit after I got it. I wondered if it was part of the healing.
It also seemed to itch a lot during chemo. But now doesn't seem quite as itchy anymore.
Hope yours improves.
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Thanks, I am counting the day after as Day 1.
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You look beautiful, JenPem. And I admire your attitude.
Today was D-Day -- Dreaded Day. The hair loss has officially begun...15 days since treatment...right on schedule. I noticed I lost more hair than usual in the shower yesterday. And today it started coming out on its own and even if I just touch it gently, a lot comes out in my hand. So it's happening. And I admit, I'm freaked out. I'm afraid to even wash it tomorrow even though it needs washing.
Was reading the Susan Love breast cancer book today (supposedly the "bible", right?) and she says that in "rare cases", your hair NEVER comes back after chemo. I have seen this mentioned in other books, too. And every time I read it, I shudder. Everyone always says "it WILL come back"...but now I am worried. Sounds like that's not 100% of the time. OMG. Have also read that Herceptin retards the hair regrowth. I'm going to be on Herceptin for a year, so this is also worrisome (though slow regrowth is better than NO regrowth).
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How much L glutamine and b6 and 12 are you supposed to take? All was well till day 4/5, I am having a lot of bone pain and my feet keep going numb. I swear my face and lips are too at times. This was my first round and I am already having these neuropathy signs
I cannot even imagine after 6. This was my biggest fear and dreaded side effect. I cannot seen to find a consensus on how much to take. I will of course ask the doc but I want to start this ASAP to have any hope of stopping it. I don't want to ice during treatment, I have a fear that if I am keeping the chemo from an area then cancer cells will be hiding there and not get destroyed. Irrational perhaps but I am not going through this to leave anything untreated KWIM but my hands and feet are my career, are my life after this so I am really concerned and this is day 5 after first infusion and it seems to be getting worse. I thought I should be getting to "normal" and I seem to be going to hell in a handbasket. I am sitting here now and my ankles down are numb. Or I get sharp jabs of pain in my legs, feet or hands. The bones
Any other suggestions appreciated. I have not had gastro or naseau this is all I seem to have and I have been sleeping a lot so everything was well tolerated until now and this. 0 -
gooseberry tell your MO about side effects and ask about switching to Abraxane. Supposedly it doesn't cause as much neuropathy side effects as Taxotere does. I believe it costs more so insurance companies don't normally approve it as a first chemo treatment.
I wish I had known because I had to stop after five rounds due to neuropathy. It has mostly resolved. Your MO should be able to tell you how much of those supplements to take.
Hang in there!
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Hi Ladies!
I'm awake at 2:44a and probably some of you are as well! Not ideal of course, but I am strangely productive in the "middle of the night." I did try to chill in front of the TV but nothing was on - so productivity (hopefully) here I come
! thanks for the Melatonin time release idea - I will try it tomorrow. For all others who are gently sleeping - sending very sincere thoughts of happy dreams and a beautiful morning ahead (ok, sounds kinda corny but that's how my brain thinks at this hour
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gooseberry so sorry you're having more problems with neuropathy but I agree with italychick, you MUST tell your MO as your neuropathy is way worse than most of us are getting on similar treatment. It's not always reversible so best to switch regimens surely?
sparklypink you are a night owl, so was I but took melatonin 3 mg and it WORKED! Now sleeping more or less through the night, and if I wake up I go back to sleep instead of feeling I'd rather get up and watch a movie.
hey everyone it was our 28th wedding anniversary yesterday. Went out for a meal. I wasn't hungry but we ordered nice food and I secretly passed most of mine onto husband's plate! It was OK, we both enjoyed the evening even though I felt (and looked) a bit washed out. So important to keep up some semblance of 'normal' throughout this rotten few weeks!
Stay positive all, here's to your white blood cells and general morale!
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If I am learning anything about going through chemo it is that I am going to embrace the days when I feel well. After 12 days of horrible diarrhea from the first round, I finally felt well enough to leave the house Friday. My husband took the day off from work and off our family went for an overnight in Cape May, NJ. We endeavored to capture the summer we missed due to my spinal fractures and subsequent surgery and diagnosis. While I was still a little sluggish, I savored every moment of our getaway, especially the happy faces of these two! Hope we all can find moments of good among the battles we are in. Happy Sunday to all. 0 -
Yeay happy Sunday Bluefrog76! You look great and so do your children!
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Good Morning Everyone. I have been reading the board since it was created, thank you KateB79. I did post once about getting my super thick and curly hair cut off. I did get it cut off last Wednesday, to about 3 inches in length. My hair dresser didn't want to go any shorter, promising to have me back when I couldn't handle it, to shave off the remainder. I was diagnosed in May, Surgery in June, 12mm, stage one, grade three, 0/3 nodes, lumpectomy only, Oncotype 36, so first round of TC Chemo August 14th.
Treatment regimen is 4 rounds TC, rest, 15 days radiation, followed by hormone therapy, yet to be determined.
I think I did ok handling the first round. A couple of hiccups with the break through nausea med that I asked for and received permission to switch to your run of the mill Gravol. Thank Heavens.
My hair did start to shed pretty heavily on Thursday and Friday, with the big clumps coming out yesterday in the shower. I don't have any bald spots, I think because it is so thick, it may take a few more days before I get it shaved. If I can handle the fall out that is.
I felt pretty crappy the first four days post chemo, had the Neulasta shot but I was able to manage any subsequent pain with alternating Tylenol and Advil. I suffered from altered taste sensations for the first two weeks, and everything seems back to normal this weekend, just in time for round two on Friday. But then I'll be half way too. Yay for the small victories.
I live in the Greater Toronto Area, I have two youngish kids (13 and 10) and a super supportive husband, and my employer has set me up with a home office to work when I'm able to. I am a very fortunate woman in many ways.
I am sending cyber strength to you all as we make our way through this treatment journey.
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sloan15-you look fabulous!
sio--hang in there. Sounds similar to my experience but I have to say that after 5 days of agony and wondering if I would EVER feel good again, today I almost feel normal. I hope you have a similar recovery. I also had an strep infection that I was unaware of . The infectious disease doc thought it might be in the bowel since I was having diarrhea. Who knows how and where I got that! Good luck.
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Gooseberry- I take 10 g (yes, 10 g!) three times a day for days 1-5 of each treatment. I have L-glutamine in a power form, so it's about 2 1/2 teaspoons mixed in with a glass of water 3x a day. It has no taste. I am sad to hear you are experiencing so much neuropathy. I have some, but it comes and goes. It's my fear, too. My friend has had 77 chemotherapy treatments, and she says she gets it now and then, too. She's been stage IV for 6 years, is keeping it in check, and still goes to teach high school kids everyday. She believes in keeping a normal active life to keep SE away. So, she's an inspiration to me.
SDCA-glad you're feeling better!
MsBromton-Happy Anniversary! Hugs back to you, too. I agree that we have to try to keep life normal.
Bullfrog76-great picture of you and the kids! I love to see pictures on here because it reaffirms that we have real and wonderful lives and the chemo is just a footnote.
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Sloan15 - the scarves look great and good deal! (I heart deals haha)
@ JenPam - that Fuzzy Wuzzy thing is cracking me up. I often say the fuzzy wuzzy rhyme/song to my son! You look great as well!
Hair loss - although I have buzzed my hair, when I brush my hands through it there is a bit of hair that comes out. I wonder if it's going to clump off soon? I've been going out without anything on my head. I'm not afraid of seeing people I know. Sort of surprising myself there!!! And it's funny the looks I get. Especially because the hairstyle probably doesn't match my attire. I have worn my wig twice and both times, when it came up in conversation, people said they didn't know it was fake! So although the Jon Renau synthetic was $300+ I guess it passes off as realistic! I was at a restaurant last night and it was getting sort of hot on my head though... Here's me and my minis at the beach yesterday.
Drugs - is anyone else taking EMEND for nausea? I looked at my receipt when I picked up the prescription and it cost $315 for NINE pills! Thank goodness I have excellent extended medical, as it cost me $4 out of pocket.
Treatment - one thing I need to remember to do is EAT before treatment. One of my drugs (the Dexa?) says take with food. For my first treatment I wasn't eating before (probably just feeling ugh and forgot to eat) and then I got to chemo and she made me eat some crackers which probably did hardly anything for me...must eat prior to chemo...
Everyone else - great pics and glad we're able to go through this together. Hope everyone is doing well and thanks to KateB79 for setting up this thread!
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I had my second of 12 infusions on Friday. Got through it fine, yesterday was fine, this morning woke up like someone had tied a ton of bricks to my back. Headache, nausea, can't keep food or meds down, the whole nine yards. The nausea is annoying but at least I feel better after I'm sick - the headache is constant, just unrelenting, and it's behind one eye so it's hard to keep my eyes open to read or anything. Ugh. I'm alone except for the dog. Who is sticking to me like glue ... he's a ratty and that's what ratties do.
Okay, I think I have to go back to sleep now. Lovely to catch up with how everyone is doing. Michelle and Sloan, you are both rocking the short hair/no hair look. Amazing. I went yesterday to get mine cut off, but my hairstylist said she thought it wasn't time yet, it still feels strong - hardly any came out when she washed and trimmed it. (So the wig will look nice and neat, don'tcha know.) She instructed me to text her the minute a clump comes out and she'll cut it the next day to send off to chemo diva.
Oh someone asked about steroids and L-glutamine - I get my steroids intravenously, along with Benadryl, for my first infusion on infusion days. Then comes the medicine. I can't remember the order right now. As for l-glutamine my instructions are to have 8-10g, 3x per day. I mix it with cranberry juice but it's okay just with water too. Yesterday I made a smoothie and added it to that. Oh. Food. Doesn't bear thinking about right now. I hope you are all having a better Sunday than mine is turning out to be!
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Napped, then had the brilliant insight, which I think maybe one of you did too, after trying all of my fancy anti-nausea meds and not keeping any of it down, to just try a spoonful of good old pepto bismol. Hallelujah, I can keep water down now. I don't have a fever even though I have chills, which is weird. But at least I felt like waking up enough to type this. Have a good day, ladies.
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I am loving your stories. I started chemo on the 25th. I've had some slight nausea, dizziness and been extra tired. Most annoying is that my mouth is sore as of today. I'm going to start salt water swishes to see if that helps.
I have thick hair, so I'm debating getting it cut before it starts to fall out. Don't think I'll wear a wig, though, because I'm in Florida and it's going to be hot for awhile yet. The pictures here are great.0 -
JenPam and Michelle--Love the pictures with the kids!
Mom2Aboy-What's his name? It's so comforting to have such a loyal little friend. I get headaches, too, after the infusions. If you find ANYTHING that seems to ease it, pass that tip along! Are you on TC chemo?
Easy Red Bell Pepper Soup:
Saute 1 onion, 4 cloves garlic, 4 red bell peppers in 2 tablespoons of butter (about 5-10 min). Add 24 oz chicken broth. (I also add a shake or two of crushed red pepper flakes to give it a little kick). Simmer 30 min (or pressure cook 3-4 min). Puree in blender. Strain. Heat on Med Low and add 1/2 cup of Half and Half or Milk and 1/8 teaspoon of pepper.
Serve with a grilled cheese sandwich!
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