Starting chemo August 2014
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Hey all,
Day 3: Feeling better today. Weak, but slept pretty well except for some 2:30 am insomnia. Actually got dressed and watched the kids play in the yard a bit. Need to get some soft hair bands to keep my greasy hair out of my face. Today I can wash my hair with lukewarm water and diluted shampoo, according to the cold caps regimen. After that it will be once weekly (if I even have any). I'm curious to see if it works. wondering if all you taxol troopers get more steroids than us AC folks. Looking forward to taxol if I get a couple of good days. Trying to organize playrooms a bit and enjoy the kids. Trying not to feel too worried and sorry for myself. I think the chemo and the Ativan make me more depressed and teary. Before chemo I've been doing okay most days. Upbeat even. How is everyone else's mood doing?
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Good day, and welcome to day 12...
I've done a whole lot of nothin' all weekend, so far, although we are going grocery shopping later this afternoon. Feeling much better, just a little tired, but looking forward to getting out for a bit. My headaches & body aches are gone, bloating/gas/indigestion/heartburn are greatly reduced, and the big C has flipped over to the big D, but not unmanageable.
The brownies were delicious, and we had them again last night for dessert, warmed up w/vanilla ice cream and chocolate syrup on top. Mmmmmm! My tongue and mouth are not fuzzy any more, and food has flavor again, but not quite the same as before. I did get some biotene rinse, but only using that before bed for now, b/c I keep waking up with a nasty taste in my mouth.
Tomorrow I see a periodontist for a consultation for the gum graft I've been ordered to get before next Tx. Also, a MO follow up and blood draw post-hospitalization. I think I'm on the downhill slide to next infusion, which will be 9/3.
Oh, and I do still have my hair.
but the anticipation of when (if?) it's going to let go is driving me bat crap crazy. The itchy scalp went away, too, for the most part. I have a question for you ladies: I'm toying with the idea of starting a GoFundMe campaign to hep pay for the out of pocket costs, and to offset any unpaid leave I may have to take as I go through these treatments. Since the hubby is still out of work, he enrolled in a nursing program in order to get access to his GI bill money and bring in something, but it's no where near enough (his income was fully double mine). I hate having to ask for money. So I was thinking of offering an option to purchase some small paracord items I've been making (key rings, bracelets, etc). Then if I made more than I need to make up my costs, donate the extra to BC.org. Does anyone have any thoughts, experiences, tips, about this kind of scheme?
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Hey ladies, I'm behind on reading posts and haven't posted in a few days either. Yesterday (day 3) and today (day 4), I've just been kinda zombie-like. No real SEs or anything, just lifeless and out of it. Been taking my anti-nausea meds, but yesterday was the last day of Decadron, but no real problems with my stomach - just a little gas and diarrhea. How's everyone else doing?
One love,
tp4ever
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Sorry to be off the grid for a few days. Just catching up with everyone's posts and how y'all are doing.
It's 10 days post 1st AC treatment for me, and I am doing SO MUCH BETTER! I had a really tough first 5 days with lots of nausea/vomiting, headache (rough one most likely caused by zofran), constipation, etc. On day 6, I went in for fluids after becoming so dehydrated. They gave me some more steroids and between that and the fluids, I was SUPERWOMAN for 3 days!!! I was cleaning the house, going to the gym (for the first time since diagnosis!!!!!!!!!), and enjoying my new zest for life! I was high! I've subsequently come down from that ride...but feeling about 80% my self (which feels incredible after wondering only a few days ago if I was going to still be able to work part time and manage my life while going through treatment!). So for those of you who are worried about dehydration, CALL YOUR ONCO and get some fluids! It helps so much. Next time around, I am going to push to schedule some fluids 4 days post infusion...just to make sure. As most everyone has said, you can bounce back and feel almost like your old self. Whew!
I also started getting itchy scalp and decided to get my daughter to buzz cut my hair like Cathie and Wizard did! Y'all look strong and amazing! Love it! Wizard, your daughter is a strong warrior woman too! YOu must be an incredibly role model for her!!!
I already had a short pixie cut...but was still having anticipatory anxiety about losing my hair. It felt so much better to buzz it off and go for it!. Here's a pic of before and after : ) I'm pretty much an earth mama/hippie chick, so don't think I'll go the wig route. Mostly scarves and hats of natural, comfy fibers : )
LLizz, your wedding pic is gorgeous! You look so happy in that photo!. But you look like a strong, powerful women in the 2nd! You go gurl!
KELLYA, JENIFERE...good luck tomorrow with your first treatment! Don't be afraid to ask questions, vent, whine, bitch, cry, scream and do what you need. This is a great place to do it with no judgment!
TP4ever Glad you are hanging in there. Here's hoping that your SEs stay pretty mild and that you're soon feeling some more energy soon!
StrongEnough, I totally get your hair/anticipatory anxiety (hence photo above). I caved. I was tugging at it ...and afraid that it would come out all at once in my dinner. BTW, I think your idea of making paracord items as a side bizz/entrepreneurial thing is a great idea! Go for it!
Gatomal: You are allowed to be blue during the downturn post chemo. You don't even need to explain. It's hell to go through all of this! I hope that you have a turn around soon and get some of your optimism back soon.
Kellogg, Pantidor and Tootsetoe, Llizz Mullerin, Just Any. Did, Nomatterwhat, Puplegurll: Hang in there! You are all in the worst part, from my limited (yet vivid experience). Hope you are all managing ok.
Tabbygirl you are paving the way! Two down! that's awesome! I hope that you are hanging in there. Keep us posted on how it feels as you progress through it.
Ladyb, thanks again for keeping everything organized and us all up to speed (and for all the AC tips).
Lot of love to you all!
Jess
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Wizard: so
beautiful you and your daughter. Love
the cut on you.LLiz: your
wedding pictures is beautiful and happy 5 month anniversary. Zofran gave me tremendous headaches and I
switched to Compazine which also worked better for me for nausea and I didn’t
have headaches. Hang in there and glad
you joined this group.Gatomel: the first 3 days were ok for me. I was pumped up on steroids. Once I stopped them I took a nose dive and
felt like a semi –truck hit me. My brain
fog started day 4. I am pretty sure I got 100mg of AC but I am node positive (8)
so they indicated I get a heavy dose of the Red Devil and now I see why they
call Adriamycin the Red Devil…uggh…Jaycee: glad
to hear from you. My DH told me a few days ago almost the same thing and it
just touched my heart. He and my daughter and the ladies here help me take it
one day at a time instead of trying to look too far down the path.Strongeoungh: How are you doing? Any news on the gum graft and infection?
JustAmy: hang in there and hope today is going better.
Kellya, JeniferE, CJ511, Barremom: thinking of you as you approach
your 1st treatments. Kellya, I had my ipad, a small lunch, mints and gum. I will add plenty of water to my bag this time around.All
hitting day 3-5 hang in there and let us know how we can help with any
SEs. As we all know drink, rest and ensure you stay ahead of SES by taking the meds, etc.0 -
Thanks Ladyb for the good wishes on my first infusion...Question for you ladies...I was prescribed three anti nausea meds (Zofran, Ativan & Compazine) for after treatment...the nurse made it clear to be "taken as needed"...I've read you should just take from the get go...what did everyone else do? I want to follow directions BUT i also get nauseous easily and vomiting after a BMX would be extremely painful.
Any thoughts would be appreciated:)
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llizz we r same day same chemo buddies! Today morning was my worst, almost passed out on the bathroom floor. Hubby got me in time. He said I was so pale with cold clammy skin. I laid down for an hour and back to normal. I shouldn't have taken the Imodium yesterday, the gassy tummy really got me this morning. I have pushed myself too much. Still working full time 2nd to 4th day post chemo. I am sick now, have to accept it and have to treat myself better.
kellya... Bring anything necessary for the first chemo. Each infusion center is different. Mine gives us lunch, water , ice and juice. Each patient has their own small cubicle and TV with the outdoor view. I could get a blanket or two during chemo too. I brought me bottles of water, snacks, phone-tablet-chargers, blanket, wipes, Kleenex , some meds. I took my Claritin& pain pill (prescribed by the surgeon who put my port in) right before they started my chemo. Drink a lot of water !!! A lady in other forum told me to chew ice 30 minutes before my Taxotere and during taxotere infusion to ease the metal taste. I will try it on my next chemo. Good luck... I will be thinking of you..
Great picture Wizard!!!!
Hugs to all the August ladies !!! Love you all....
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A few additional post showed up while I was writing.
Strongenough: glad you are doing better. I have a friend that used gofundme for her brothers illness. I will ask her how it worked out. I did donate to his fund as a way to support a friend. Her brother was on disability and I believe his wife had just lost her job before his treatments started. I think it is a good idea. Sometimes individuals love to support in anyway possible. I think it is a good idea and to donate back to BC.org is a pay-it-forward type of scenario which several ladies on the July boards are doing.
Jess, glad you are doing better and love the haircut. I will ask my MO about the dehydration as she was very worried about my weight loss and the big "D" and indicated we needed to stay on top of it this round. I didn't come up for air until about day 10 and was at about 80% until my port placement.
Seems like everyone is taking the hair pludge. I am wearing my wig today. Feels like a helmet but I will
get use to it. What a difference two days makes. My scalp is now starting to tingle and hair is now starting to shed :-).My MO indicated 1 cup of coffee a day as I had to ask since I am an avid coffee drinker -- meaning coffee in any form all day :-). However, I have to say I haven't had a taste for it and I am sure
some of my initial headaches were caffeine withdrawals. I told my MO I cut out wine and she asked if it was my choice? My response no I thought I had to leave it alone. She suggested a glass of wine every once in a
while wouldn’t hurt. I have still not had a glass mainly due to my taste. Interesting the different perspectives on wine
and coffee. I gather the key is not to overdo it on either.0 -
barremom,
If you know that you get queasy easily, you might want to take as prescribed and stay ahead of the nausea. Once it takes hold, it's hard to shake. That's what I did (I also get motion sickness, morning sickness, etc and knew that I'd probably be prone to nausea). Whqt is your treatment? Mine is AC which is known to be tough for nausea. I'm sure it's different with very person and every regimen (why this is so maddening).
So first time out, I would say don't wait until you feel nauseous to take meds. Also try as much as you can to stay hydrated! Good luck! jess
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thank you for your kind words and support Jess....
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Wizard, what was the gel you suggested for the eyebrows and eyelashes. I want to order the gel since I am now seeing some shedding :-).
Another question for those with ports. The actual port site is not that tender however, the incision by the neck is still tender where I am taking extra strength Tylenol. When I swallow I can feel the tenderness and a little pull? Anyone else experience this? Is it normal? How long before the port site didn't brother you? I think I would almost be at 100% if it wasn't for the tenderness of the port at the neck incision and wanted just at least 1 day before going into chemo to feel somewhat normal.
Good thing. My DH an SIL surprised me with a getaway today to the Wine country. We almost canceled due to the earthquake but came anyway. Have a nice suite and have relaxed all day and did some walking. We stayed away from the Napa area today, but the earthquake was a big one! Keep those in this area in your thoughts and prayers as they recover.
Hugs to All,
-Angie
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I was reading the benefits of alkalizing diet for chemo patient . I will ask the MO and dietician on my next appointment. A pinch of ginger and a squeeze of lemon in the soup do help with my taste buds so far.
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Hi all...I have been asleep for 2 days for the most part. Today is day 4. I tried to go to church today and ended up leaving early just because I am so weak. No major SE's other than that so it could be worse. I can eat and food tastes good (certain foods) and I'm staying hydrated. I have been reading your posts and hope those of you who are having bad SE's feel better soon. Hopefully I will be more awake tomorrow.
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ladyb, it's my 6th day post port incision, no neck incision and still with the bruises. They used it on the following day post port placement. Pain free on the 4th day. I tried not to use my right arm (the port's side) for the first few days. Hubby even helped me dress and undress so I won't pull or raise the arm. It is still feel funny when I tried to swallow while turning my head the other way. I took the pain pills for the first two days.
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ladyb, where my port is, it is slightly tender, don't think I'd even say it's worthy of a complaint. Now the incision in my neck, a totally different story! Still feels pretty swollen and feels swollen on the inside, hard to explain. I took only one Norco at 6:30 am. Took 2 Tylenol extra strength at 12:30 and went back to one Norco at 6:00. I feel more comfortable on the Norco, except for its constipation consequences and a somewhat dizzy feeling. I ate some prunes and have taken Metamucil (1tsp) twice today. Hope tomorrow it feels better.
I can say I have some anxiety about tomorrow, kind of hyperventilating and getting dizzy. Hope I don't throw up before I even get started! I have the nausea pills etc too. One is for bedtime and has something to supposedly help you sleep. We'll see about that tomorrow, hope so! I will see how many days to take those.
I will be up about 6:15 to shower and have breakfast, cream of wheat I believe. Will take a Claritin too and before we head out I will put my EMLA cream on the port. I can see two dots on top of the port so that is where I'm going to concentrate the cream. Bringing my 64 oz monster mug filled with iced water and a pkt of grape crystal lite. Maybe bring some animal cookies or graham crackers. Sound good?
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It really is strange how different the side effects can be even with same regimen. Knock on wood, I've had it pretty easy days 1-3. I have been lightly eating, nausea minimal, no headache, no heartburn, no big D, went shopping yesterday and went for a long walk today. Thinking about taking some miralax for big C but honestly, the amount of medicines I'm already taking makes me hesitant to put anything else in my system. I have not yet had the neulasta shot (tomorrow) so hopefully that doesn't bring big SE's on. My teenage daughter has come down sick with something and is running a fever. I've been going a bit crazy with the hand sanitizer today! Hope everyone has a good night.
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Pantigor, so they didn't go the neck incision route with your port? So probably didn't go through the neck vein. My MO did suggest ginger. I will need to try it.
Kellya I you have two like me with second incision through the neck vein correct as your neck symptoms are pretty much how I would explain my symptoms. The port site is tender but I can't complain. The neck incision is still very tender and swollen on the inside and hurts to sallow. Your goody bag and prep sounds good. I had cream of wheat for breakfast before my last infusion and will do the same this week. I bought a big 64oz cup to take as I didn't take one the first visit. My goody bag consisted of crackers, a small lunch,yogurt, mints and gum and of course my ipad to relax.
JustAmy, glad you are doing better.
- Angie
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ladyb, my neck stayed quite tender for almost a week. And then it was like suddenly it was OK. Until then, I felt too nervous to turn my head too far because it just felt weird and sore. But by day 13 or so after placement, I was not even noticing it anymore.
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Hello friends,
Good to read about everyone and hope you all have a good week ahead.
Has anyone's white count gone extremely low? Mine did on Thursday and I had a neupogen shot on Thursday and Friday and put on antibiotic. I ran a fever as high as 103 most of Friday. Saturday it was right at 101 and finally broke. Now I have a horrible sore on the side of my tongue that is making it hard to eat or even drink. I'm doing the salt/baking soda/ warm water. I'm really hoping for a good week. Just ready to feel lots better.
I figure my hair loss day will hit this next weekend. It is causing anxiety. You all have been an inspiration.
Thanks for everyone sharing their experiences and hopes. It truly does help us all.
Have a great week everyone!
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Hi everyone,
Kellya, JenniferE, CJ511 and Barremom, goo luck as you start this week. It is nerve wracking going in for the first time but I hope it will be easier than you expect.
Cathie and Wizard, love the family pictures! I'm in awe of all of you who have clipped your hair. You look beautiful. Part of me is still is denial that my hair is really going to go.
Ladyb and Pantidor, My port was placed two weeks ago and the incision (I only have one) is still a little tender with some mild bruising. The area feels tight when I move but isn't painful.
Justamy, so sorry you're having a tough time. Sending hugs your way!
Gatomal, hope you are okay. I've been feeling low and teary this week, too. It has taken a lot of energy to be "on" and positive for the customers I've seen and talked to on the phone this week. When I'm alone I just crash.
Tabbygirl, you and I are on the same combination. I've had a good week with minimal side effects. Some aches, fatigue and a slight headache. I have the fuzzy tongue feeling and my appetite is down. My last blood tests showed that I was slightly anemic. I also have the sniffy, drippy nose and tonight it feels like a cold with sneezing and sore throat. I'm scheduled for my third session tomorrow and hope the cold won't cause it to be cancelled. My temperature is up slightly from my normal but not high enough to call the doc.
I'm holding all of you in my heart. I really do not know how I would be getting through this experience without you!
Sandy
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Sandy, I am sorry you're feeling off. I have been having that "am I getting a cold?" feeling off and on, too. Drippy, sensitive nose lining, little cough and sore throat that I think are from post-nasal drip. But it all comes and goes. So I hope you are the same, not really getting sick, and that you will feel good again in the morning.
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Hi,
I'd like to add myself to the August group as well. I'm 37 and have been diagnosed with IDC triple positive. I'm getting neo-adjuvant chemo and had my first infusion of TCHP on 8/13. I was told only the day before during chemo ed that i would be getting chemo the next day, so it was a bit of a shock, but everything went fine and the side effects were manageable so far. Since it's my 11th day, i'm expecting major hair loss due to Taxotere to start in a few days, but crossing my fingers that it happens over a period of few weeks rather than few days, as my wig will not be arriving for another month. I wish everyone here the best of luck.
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Windgirl welcome to the group. These ladies are fabulous and will be a huge help as you go through treatment.
Hope, the nurse at my MO mentioned something called "Magic Mouthwash" that they could call in a prescription for if I got mouth sores. I don't know if that's really the name of the product or if that's just how they refer to it.
Thinking of those starting chemo this week as well as those who are moving on to cycle 2.
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Txs Jess 1965- Im a Taxatore/cytoxane 4X gal! I think I will take the anti- nausea meds from the get go. Just like you I had debilitating morning sickness and get motion sickness as well. How long do you take it for the first few days or until you feel like your out of the woods?
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welcome wind girl ...
Thinking of you Kellya for your first round. Drink a lot of water.....
Good luck for others on their first round this week.
Stay strong ladies.....
Hugs to you all
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Windgirl - Welcome to the group! You and I are close in age and have the same diagnosis. Are you doing carboplatin, taxotere, and herceptin for triple positive? We started on the same day with our treatments and I'm doing chemo first as well. The ladies on here are wonderful and you can lean on us anytime! Let me know if you have specific questions since it appears we are on the same treatment plan. I'm gearing up for the hair loss to start this week myself.
Karina
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Sorry I've been away from the boards lately - lots going on so I wanted to catch up with everyone. Great photos Wizrd, Liz etc...keep them coming! I love seeing the hair cut and no hair results! I'm impressed that so many look so great with no hair!! BTW - if I lose my hair I plan on getting a buff for my head. I did not know what they are, but read that other ladies have used them happily. You can get them on Amazon or other online stores...just search buff headwear, and some come in UV protection for outdoors.
I got a pixie cut a week ago and I'm happy with it. My scalp itches a bit so I'm ready if I need to shave it. I'm now about 13 days past first tx and neulasta shot. Here's a few things from me....yes day 3-5 were tough and exhausting. I also have low fevers and did call the Dr on Sunday PM. But it wasn't enough to bring me in (I was 100.5 but no chills or other serious pain.) I think I had major stiffness from the neulasta, but nt serious pain. I took an Alleve daily for a few days. Nothing since. I had some minor constipation for the first week and now its reversed. But my appetite is actually strong, though taste buds feel burnt. Cotton mouth is gone, but I've had a few tongue sores and a feeling like I burnt my tongue. For a good week my body felt like I was a motor engine and though I never checked I think my heart rate was up. Its come back down but I do want to ask about that for me next treatment next week. My nose is very dry so I bought some saline solution (I live in a fairly humid area, so this is weird). Someone said acne, and yes, I have a bit of that too. Nothing on my face but in a few odd places. I'm back to sleeping normally but I was using my Atavan for a few days to help me sleep after first tx and it was awful for me. So I'll probably take a benadryl if I really have trouble but for now I'm doing OK. I feel like my energy is on the upswing, so I'm guessing that if I can keep this up until next chemo tx I should be OK, but I'm sure it'll start all over again. I'm making as much pottery as I can in case I lose all energy.
I've had a bunch of family issues too which haven't made this a good time to be sick. One of my brothers finally agreed to stop drinking and seek help for that (its a long time coming, and I may be part of the reason he is giving it up). Another brother has been visiting from CA for the past 3 weeks (we haven't seen him in 3 years) so we've taken this time to have family meetings about my aging parents especially my dad who is starting with dementia. And frankly my mom has not been very supportive of me - she has a friend on chemo who never seems to complain, so she doesn't understand how I can be tired etc. Its been frustrating and a bit depressing which is not me at all!! But I've got tons of other support from friends and my siblings, but I'm worried this will get worse. I did not think this would be one of my biggest concerns!
In any case, it helps to read what all of you are experiencing so that we know we are not alone and to get tips. I'm so impressed by your strength. Good luck to those of you who are just starting chemo, and holding hands with those of you who are starting on your second.
Stay strong ladies!!
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waiting for treatment. Blood work was good, the stick into the port was fantastic. I put a glob on and covered it with Saran Wrap for an hour before the blood draw. No feeling at all. Waiting to get hooked up now.
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ladyb1234 - Not having a second incision on the neck does not mean that the neck vein is not used. Different Dr use different techniqies/procedures to implant the port. I have only 1 incision and the port tubing does go into the neck vein. Mine was implanted by my breast surgeon the day before I started neoadjuvant chemo. I had little to no discomfort from it's placement. Dr told Hubby that I was to do nothing 'heavy' for 2 weeks so he and Son took over all barn chores for those 2 weeks but I was back giving lessons 3 days after implant (2 days after 1st DD A/C). I had no sutures - Dr used surgical glue and 3 narrow steri-strips.
We are each unique in how our body handles what is done to it. There is NO 'One Size Fits All' when it comes to what we will experience individually.
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ocean breeze I do the same tx too...:-) 6 rounds of Carboplatin , Taxotere , and Herceptin before surgery and will continue Herceptin got another year....blah..
Way to go Kellya.... Drink, drink, and drink....:-)
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