August 2013 Chemo Sisters
Comments
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The nurse told me to do the BRAT diet, which I wasn't far from either. I'm more nauseous than I've been (even took all three different nausea meds today) and all I've had, besides my usual gallons of water, is some low sodium chicken broth and a few spoonfuls of rice. The nurse kept saying the first treatment is usualy the worst in terms of side effects but I don't think I can believe that, not sitting here with a full head of hair and all my fingernails. I didn't want to object to it, why argue when she's just trying to keep me from panicking?
Only a tiny bit of the trots today, although we'll see what happens with the broth and rice. It feels like it doesn't want to stay in there but I can't tell in which direction it will go, up or down.
Thanks to everyone for their advice and caring.
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Greetings!
Tonight I experienced some back pain. Nothing aweful, though.
Depending on your job, I would suggest that you return to work. It will take your mind off you, chemo, SE, etc. and help you focus on someone else or something else bigger than yourself. It will also keep you in the flow of life + things. Now if you can't work, then don't. I believe our body tells us what to do and rest is great for healing the body! I would not suggest taking off because of how you may feel in a few days. Play it by ear and press forward. We can do this!
I forget her name, but additional prayers go out to the young woman who was diagnosed right before her wedding. My God be in the middle of your union and may He be a continued source of strength, encouragement and love between you + your husband. There is a great testimony that is being created between you two.
May everyone have a rest + peace filled sleep tonight!
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Well, it's how I understand it, but I've been told we are all different : ). I do believe the fatigue is supposed to increase since our bodies work harder and harder to rebuild the red and white blood cells.
What regimen are you on, aef? -
Hey aef you're in DC I'm in MD. If you ever feel like a meetup let me know.
Biotene mouthwash, toothpaste and mouth balance gel are all at Walmart. Also found the mouthwash at the grocery store. They are amazing and I have been rinsing my mouth and brushing my teeth about five times a day. Seems like I really needed it because wow do I have dry mouth and such a bitter taste in my mouth. Blech. Apparently it's really recommended to change toothpaste and mouthwash to avoid ingredients that will irritate your mouth and throat.
Carol I have constipation also. What has really helped is Optifiber (that's Costcos brand of Benefiber) added to my morning coffee. Amazing results. Also take Colace (stool softener) daily. Upping the liquid intake has also helped. Soups and smoothies are just more liquid that adds to the total so don't think it's just water that counts.
Ok tomorrow I return to the doctor to see if I have bird mouth infection. Ha! I mean thrush. No way, I refuse to have it. Also to see what my blood cell counts are. Wis me no birdies and lots of cells, ladies! Good night and good dreams all. -
Hello, I have not been on here for a few days. I am starting my chemo on the 19th. I'm scared. So many things going through my head. I'm starting on steroids the day of chemo, anyone else? What does se mean.? Anyone take anything to help sleep? God is good. I have to keep in mind his is all temporary. I'm freaking about hair loss and being sick... Ugh. Ugh ugh
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After thinking so much about the wig I got from the American Cancer Society (ACS), I need to thank God publicly. There are so many in my community praying for me by name. I do not think that was a coincidence. God is good and I don't know how any of us can get through this horrific treatment regimen without Him. I believe in the power of prayer, and I have added every name on this thread to my prayer list. Watch for blessings coming your way. Coincidence is just another name for the Love of God manifesting itself in front of our faces. All we have to do is recognize it. It's all free.
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Yes, thank God, the blessings just keep coming!
Cutiekool, keep chilly. We're all here for you. SE are side effects. I'm on steroids for the 3 days after each infusion - they make me feel hyper and grumpy, yuck, but they keep the bloat off my heart and lungs, so yay. I was awake from 3 to about 5 I guess. Ill nap during my lunch hour again, probably. I used to have to take Ambien occasionally, bit need to ask the doc - forgot too. I've got Ativan for nausea, lol, and I'd take that it it were anxiety keeping me awake, but this was already a pattern for me. I'll try melatonin - so, cutie kool ask the doc.
We're all scared, trust me! Courage is nothing more than showing up, ok? All you gotta do is show up and keep breathing. In, out. You don't have to be brave for US, we understand .
As for hair, lots of fixes. I look at it as one more thing to get thru, and not as bothersome as the worst. My buddies keep giving me scarves, etc. I'm signing up for a look Good Feel Good class to learn some new makeup techniques. Trying to stay positive while I still feel kinda ok - however, time for AM steroid!
I took colace, benefiber twice a day, miralax last night and so far zero. Trust me, the fight against constipation will be the worst for mr, lol! I will TRY not to keep a running update ; ) -
Gavinsgrandma, best wishes today on your first chemo treatment.
Also, sending best wishes to everyone else starting or continuing treatments over the next couple of days.
Hugs to all
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Ladies, Thank you so much for just being here. I know we will all get through this. Sharon,and carol, your so right God is Good , full of blessings. I know it's going to be rough, but I will get through this as we all will. Just the unknown is so scary... GOd Bless , let's keep our chins up....make it a good day
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Hi everyone,
CarolPR56 - yeah, we are really lucky with our health care but maybe a bit naive about the costs. I have absolutely no idea how much this treatment costs. The only thing I have had to pay for are the anti emetics and then it was a nominal US$3 per item. Some people are insured here but I couldn't afford it and often for serious things you end up being treated in the public system anyway.
Sherry - confession time ...I'm a granny too. 'Granny Owl' actually. She can't pronounce my name so that's how it comes out. I love it - it gives the illusion of wisdom : ). But I feel way too young. She's nearly 4 and I only just turned 50. most of my friends have still got their own kids sometimes in primary school!
Your community sounds fantastic to gather round with prayers. I was a tad envious and then yesterday someone told me a congregation in another town is praying for me so the cats out of the bag and I am starting to feel held.
I think it was also you who was asking about still teaching while on chemo. I'm a full time teacher and my chemo nurse said, I'd have to modify my work life. But she didn't really say what she meant. She did say I should keep away from the staff room ( part of the point in still working is for the company) and should ask the kids with coughs and cold to sit down the back ( some won't want to change their seats). I think she was implying that I'll have to take time off, but she couldn't really say because maybe everything will be fine. I'm scared of taking too much time off as I have a limited amount of sick pay and at the back of my mind is...if this treatment doesn't work, I might need more time off next year and I'm not due for a sick leave top up for another 3 years. Some colleagues are fantastic though and are willing to cover me for nothing but they can only do odd times for appointments not whole days. Flu bugs are going round school at the moment and I'm already using hand sanitizer etc. she also said I should stay away from any indoor crowds, like concerts, movies...so now I'm wondering about church?
Ive been lying awake thinking about the port thing and what you all have said. I'm just hoping that because I'll still be wiped out on the sedative for the port, I will then be happy to sit there and take the Chemo drugs. At the moment , I'm scared when I get there I'll just walk away.
Time to get out of bed off to school, another great, almost spring day here! Thinking of all those having treatment and like me nervously anticipating it. -
Hi Ladies, all is going well so far, I am at the infusion center started about 9:30 this morning, had my IV anti nausea and benedryl. Then my wonderful nurse came in and did my 30 minute push of Big Red and now my cytoxin is running. I will keep you posted and I hope everyone is feeling better and doing good today, sorry to hear about the delay's in treatment, that stinks!!!!!
Shary🌞 -
Blessings, Shary! I am pink today...radiation recall from bad sunburns, maybe? Anyone else notice this on day 3?
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Hoping you're still going well, Shary!
Carolpr56 - I was looking at your diagnosis info. Does it mean that you had a right mastectomy but you still got another cancer there? I'm asking because the surgeon told me to consider having a double mastectomy after chemo (so much to look forward to:)) because after the re-excision they decided my breast was unstable and maybe more prone to reoccurence. But if it can come back after a mastectomy, what would be the point?
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Gashgold, please don't be upset. It is possible to be okay if it comes back. I have had a recurrence and I can tell you that I plan on living. There are a great many things that can be done; my doctors have called my condition treatable and curable. I am having chemo, surgery - bmx - and rads - yes all over again and very grateful that they will help me to live. I am also grateful for the love and support of my family, friends, this community, my and God. God is good ... All the time! I am relying on his plan for me.
I just got back from 2nd infusion of AC x 4. The port was accessed withthe help of the interventional radiology team. For those of you with very large breasts or who are plus size, this may require a longer needle and a bit more force than is usual. This is my case. Feeling nauseous and headachey. Not due for Zofran and Compazine until late evening so just toughing it out.
I hope that everyone in the first few days post infusion is doing well.
V
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Lily, I, too, was told I didn't need chemo, but I have triple negative breast cancer, grade 3, the most aggressive kind. It usually recurs in the first 1-3 years because they have not found a targeting medication to keep it from recurring. I chose to have chemo simply because I feel that I won't have the 5 year Tamoxifen since Triple Negative is not fed by estrogen or progesterone. They don't know what feeds it. I want to do everything humanly possible to shoot this cancer in the heart so it won't come back. By the way, you have my late mother's name. She spelled it the same. She would have been 89. We called her Lily Belle. I don't know what kind of cancer you have but I think it is wise to do chemo even though it was not required at first.
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I took the wig I got from the American Cancer Society (FREE) to have it styled today. No one knows I'm wearing it. It's exactly the color of my hair and I had it styled the same. Everyone can go to the American Cancer Society in your community and get a wig and other things. I received 2 hats, a very nice brush, a bar of soap that I can use during radiation, a sample of perfume, although I don't wear perfume, and a hairnet to put over my wig after it is styled. They have scarves and other things that are free, as well. Check it out. I feel great now that I know I have something to wear on my head when I have no hair. I have my 50th class reunion in October, so I'd hate to go bald-headed. I might shock the socks off of my classmates who haven't seen me for a thousand years.
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I trust everyone had the best day possible. While not horrible by any means, today was my worse day, so far. The Neulasta must have kicked in . . . on and off my back has a mild throbbing, knees ache + hips feel funny.
I have seasonal allergies so the congestion and ear popping is normal; however, my teeth feel achy.
Loving on you who are being treated tomorrow.
Some of you mentioned that your treatment was in an open room. That's what I was hoping for; I would have liked to meet some new people. I wanted to give my sisters a sample of my new soap TLC Healing Bar. I created it when I was diagnosed. Unfortunately or fortunately, each person is in their own room complete with a lounge chair and color TV.
Peace + blessings to you all. Remember, God is able!
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Carol and Gashgold, thank you😄
HVV, Done with A/C and Cytoxin feeling pretty good, a little headache but not to bad, a friend of mine had a migraine after her 1st one and they pushed the 2nd 11/2 hours feather than 1 hour, so I requested that and it may have helped. slight nausea but I took a Zofran and it helped. Hope you have a restful night😴
FMGD, I am so sorry you had a ad day, hopefully tomorrow will be better, it is so interesting how this stuff hits everyone a bit different😰
Sharonneanne, thank you for the ACS tips and resources, I hope all is going well with you, when do you start treatment?💐
Gonna chill now💤Shary -
FMG I like the sound of individual rooms with a color TV! Snazzy!
The open room of the office where I get chemo seems too huge and not at all restful. I felt like I was in an airport terminal in some ways. Several recliners but no TV. Only 2 other people were there but we were so spread out there was no opportunity to talk to anyone.
To everyone getting their first infusions, all the best. Wishing you few side effects.
Turns out I don't have bird mouth infection ! (ha) or thrush either. Thank God, Apparently reflux can cause sore throat which the onco expected due to high doses of steroids they gave. Ok that's a new one! So she recommended Pepcid AC.
Blood counts all great. Best of all she said I was the best hydrated chemo patient she's ever seen. YAY!!! Everything's cool with mouth and throat.
I think her major concern were rashes, swelling and breathing problems which there's none of thankfully.
One down, three to go (TCx4). Next infusion Aug. 26! -
Gashgold, yes, lump same side as mx, but onc thinks different cancer. The tamoxifen would only have protected me against an ER+ recurrence, or so I understand it. I will do pmx on left side this time, as TN grade 3 so aggressive. I will not do recon, and am having r expander out so i can feel any more tumors that pop up. That and I find my expander to be a big ol' pain in the patootie ; )
That said, I am still pink. -
Carol, hoping you are not pink tomorrow💐
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Do you have the saying 'to be in the pink'? It means to feel really good. So Carol I hope you are in the pink now. : ) rather than actually pink.
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Well I'm up can't sleep my first infusion is at 9 this morning. My stomach is queasy. Not sure what to pack in my chemo bag, so far I have a blanket, magazines, crossword puzzles, Chapstick, media, Kleenex, and a few snacks. Any suggestions?
Yesterday I took my wig to be trimmed and styled I decided to name her Faith middle name Courage. So I'm somewhat prepared for the fallout.....still struggling emotionally. -
Candi07, Do you have anything that you can take now to calm your nerves? Vallium? It helps when the anticipation becomes too much. Anxiety is half the battle for me.
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Candi, I had my GP put me on Effexor. It does not make me drowsy or dopey. Well, I'm a little dopey anyway, but it keeps me from crying every time someone hugs me. Works for me. You would have to wean yourself off when you want to stop taking it. I just take start taking one every other day, then every 2 days, etc, until I don't need it anymore. Also, I pray!!!!! That calms my nerves tremendously. Sharon
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Candi, I just read where you are having an infusion at 9 today. It is now 6:40 and I am going to start praying for you that God will calm your nerves and help you get through this with flying colors. I will be going for my first infusion shortly, so I'll be in your shoes before long. Prayer gets me through the deepest darkest of days. Jesus is my savior. I don't know who you put your faith in, but my God is for all people, so it can't hurt. Good luck today. I'll be thinking of you all day and wondering how it's going. Sharon
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Carol, Did I understand you to say you have TNBC? If so, that is what I have and I have read everythink I can get my hands on. I even went to a specialist in TN in Indianapolis who advised me to do chemo; although my SO and MO didn't think I needed it because the tumor was small. I chose it because of the aggressiveness. I'm grade 3. If you do have TN, I found a diet that is supposed to help keep if from recurring along with 5 hours of exercise a week!!! YUCK! I go three blocks toward the river and go up and down the hill as many times as I can. It gets your heartrate up faster than just walking. Good luck Carol. I'll be praying for you today. Sharon
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Gashgold, I should have read all of the posts before writing. I'm hogging the board today. My SO told me that if a tumor were to recur, it would recur in the breast if you had a lumpectomy or in the chest wall if you had a mastectomy, so I chose the lumpectomy. My thinking was that I could still get mammograms. With TNBC, the aggressive devil, I have to be diligent in checking myself and getting regular mammograms. It is said to be the cancer that recurs between mammograms. Good luck to you. I'm praying for Candi and Carol today, so I'll add your name and everyone else on this thread. I just like to use names when I pray. It just feels like I'm directing the prayer to the right person. Hope you don't mine.
CutieKool, I have said the same thing. It is the unknown that makes me crazy. That is why I have researched for about a month now, trying to see what all of my options are and trying to see what makes this thing tick. God bless you today and tomorrow and the days to come. Sharon
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Candi, I am sending positive thoughts your way. The chemo itself is almost always uneventful. You have what you need: blanket, a small item to pass the time, snacks, mode of communciation with others (cell phone, friend), water bottle.
xoxo
V
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Itook the advice of my nurse and had the senna and miralax the night of my infusion (last night) along with lots of water and a few prunes (i chose the prunes) so now I have the big D. Should I use imodium to stop it? Scared to because the meds I'll take later this morning will cause constipation. Help? V
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