Starting Chemo March 2015

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  • so-she-did
    so-she-did Member Posts: 202
    edited March 2015

    Packing up my chemo bag for my first round today. I am a little more nervous than I thought I would be but that could be a result of the steroid I started on last night (no sleep past 2 am!). Right now I am loading up on liquids and running around the house to find everything I want to bring with me. I probably should have started my chemo bag a little sooner but, hey what's a little procrastination in all of this? :). Hope all goes well for anyone else starting today! Those of you who have started I hope the SEs are minimal and if they aren't that they get under control very soon. Best wishes, and to all a little Luck o' the Irish!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    BB and Soshedid! Hope all goes well today. BB I think the X was a good idea.

    Thinking of you, and anybody I may have inadvertently left out.


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  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited March 2015

    After reading what you ladies are going through I feel kind of guilty for feeling so well!

    One thing that my doctor mentioned to me that is key those first couple of days after chemo are eat and hydrate. You may not feel like eating but small meals through the day - even if it's just saltine crackers. I felt like after a few bites of anything I was full so I made sure to snack as much as I could on high protein food when I could (Greek yogurt, protein shakes, cheese with the saltine crackers) and drink as much water as I could to get the chemo out of my system.

    I only had two "bad days", the two days right after chemo. I think having the port in and chemo right after was what made it so bad. Anesthesia makes me super nauseous and they had to give me IV anti-nausea meds right after my chemo so I was pretty much knocked out that day. Then the next day I was still working off the anesthesia and that Sunday was when the chemo and Neulasta kicked me off my butt.

    By Monday afternoon I was better, but even on Monday I was able to get up early, get my son ready for school and drop him off. I ended up working from home that day.

    I'm not looking forward to my infusion since now I know how I'll feel. I asked my son to cuddle with me when I'm tired on the couch and he said he would. He can be so sweet!

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  • wpmoon
    wpmoon Member Posts: 270
    edited March 2015

    I'm trying to schedule a Look Good, Feel better program, but the next one that I can attend isn't until May, which is close to the end of treatment. Is it worth going even though I'll almost be done?

    Still no big shed yet with the cold capping. Waiting for that to happen, but trying not to think about it since that inevitably will make it worse.

    Other than my big rash outbreak, which I'm relatively sure is from one of the chemo drugs, we'll find out if it happens again at infusion #2 next week, my other main side effect is..... Diarrhea! So awesome. Ugh. Who else wants their body back? But at least I feel pretty good this week.

    I signed up for the chemo angels program and have two angels that'll be sending me things throughout treatment. I got both of their first gifts (one a card, the other a little chemo care package) yesterday and it put a huge smile on my face! Definitely worth signing up, especially for those of you with little friends or family close by.

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    Agreed wpmoon...I want my body back!!!! You might try a neighboring town for the Look Good, Feel Good seminar. I found if you increase your search radius you get a lot more. Just a thought...

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    Ok so I know I shouldn't complain but DH posted on my CaringBridge blog that I needed a ride to an appointment on Friday and who was the first to claim it? My MIL! Ughhh...I love her but she drives me crazy after 10 minutes. I should be grateful but I just wish someone else would have stepped up before she could. Is that mean of me? I feel awful for having those feelings but I can't help it.

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    Wpmoon, I want my body and my whole precancer life back!

    Rleepac, I don't think it's mean of you. I think when we're not feeling well our tolerance levels are low for any annoyances and it will be an added stress to heave to deal with her if she has a tendency to get under your skin. I hope the drive is not very long.

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  • DavisD
    DavisD Member Posts: 338
    edited March 2015

    Day 1 chemo no problems except plugging me in the first time. I had a badly bruised boob from the port "installation so it was tender to the touch to start with. After that initial shock I was OK and never slept. I will be prepared for days 3-8

    Italy thanks for the fashion tips. Hasn't got very warm here so I haven't got out the flip flops yet.sounds fsbtsstic. Ended up wearing some wide leg cotton pants with a camisole, sweater and clogs. Worked out well.I'm not sure why you were triple + but I asked about it today. The RN said its just written into the plan if you're getting the A one and they can always use it if levels get too low. I feel lucky I don't need it so fsr

    Even though it went well and I was treated well, I'm exhausted and need to crash. Hope everyone is adjusting to this new normal. We're in this together!

    As a side note- anyone live in VA or WVA?


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  • PrincessOfMeh
    PrincessOfMeh Member Posts: 167
    edited March 2015

    DavisD, I'm in the eastern panhandle of WV, in the mountains.

    Is anyone else STARVING??? I swear, I've been eating everything that hasn't been nailed down since I woke up this morning. I figure, why not? My taste buds will change very soon and who knows how long this'll last. Might as well enjoy these tagalongs while I still can, LOL.

    The next LGFG (or whatever the acronym is) here isn't until May, either. That'll put me roughly halfway through chemo? I could switch the search parameters, but seriously, there's nothing near here. I'd have to drive an hour, minimum, north, east, west, any which way.

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  • Meme117
    Meme117 Member Posts: 194
    edited March 2015

    Thanks everyone for all the info, the day to day playback helps me in planning. I'd rather know what could happen than be in the dark. Sounds like we are all plugging along.

    Happy St Patricks Day! Welcome to our new real Irish woman😄 I'd love to create a list of who is who with real names and where we are from, would anyone else be ok with that?

    I now have my port, haven't named her yet but I may make it a male since he'll be stuck on a regular basis. Hospital took all day, mostly waiting. My neck hurts more than port area. Icing it and have Percocet to take.

    Rleepac - I feel the same about my mil, I know she means well but sometimes... My one sister wants to go with me for one of the sessions and I don't know how to tell her " no way in hell" she really drives me nuts😁

    Shaz101 - your goddess friends are amazing! I love the whole roar thing! I was thinking of getting a special super girl shirt for my first session.

    Regarding the neulasta - I was told from the beginning I would get it, from BS and two MOs. I'm having 6 cycles of TCHP. This was the only thing not covered 100% by insurance, I'd pay20% which is $800 each time. But there is $$$ from the drug company to cover just had to sign form. My paperwork states the injection helps stimulate white blood cell production. I found the website for the national comprehensive cancer network to be the best for up to date treatment recommendations.

    My simple reminder for today which helped me stay calm this am is "Focus on where you want to go, not on what you fear." Anthony Robbins

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    image


    So here is my wig. Any thoughts? The picture below is my second choice, but it would be in my brown hair color if you can picture it. This is so stressful!


    image

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  • avmom
    avmom Member Posts: 324
    edited March 2015

    hi, Italychick, thanks for the good thoughts yesterday. I'm no fashionista, but I like the softness of the layers in wig number two. Either one looks good, though, so pick the one that feels best, and feels the most like "you". I chose my wig that way. I'll have to figure out how to take a decent selfie and post a wig pic.

    My hair is coming out faster today. I've had a very quiet day - the fatigue bus hit pretty hard this morning.


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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    you look great as a blonde! I like both wigs on you, Italy!


    Thanks Wpmoon for the tip on chemo Angels. It sounded like it would cheer me up too, so I signed up just now.

    I'm a bit down as I'm not sleeping well again. The night before last I was up all night.,never shut my eyes. Then the next day I took some cat naps, and took an ambien and slept through the night.,then last night, same thing, manic, up until after 4 am.


    Then I got a letter from the copay assistance people saying they were pleased to inform me...blah blah blah, but they only "guaranteed"' half of what the onc's office told me was approved. The balance will be on a first come first serve. Eventually the catastrophic kicks in, but as of right now,, im coming up about $2,000 short. Im on disability and this will hurt. Part of the culprit is the Neulasta, which the manufacturer declined to give me the help ffor, something to do with having a Medicare advantage policy, Idon't know. So now they are separating the chemo from the Neulasta and trying to get it covered separately. I hate worrying about money on top of everything else right now

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    I've lost about a quarter to a third of my hair, but I have a LOT of hair, so maybe I can last another week - not sure. If I don't comb it, it doesn't fall out. Like when I wake up in the morning there are no hairs on my pillow. It's so weird. No scalp tingling, pain, anything, but when I comb my hair, it comes out at the root, like 2' long hairs.

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  • PrincessOfMeh
    PrincessOfMeh Member Posts: 167
    edited March 2015

    IC, I like the 2nd wig best, but I think both look great!

    I'm with everyone else on the bills streaming in. Our insurance has a catastrophic health cap, at which point it switches to 100% coverage, but we have to fork over co-pays and/or a percentage until then. Ouch. In fact, I'm rushing production on my next book release to try to get ahead of the bills piling up. This project was on my calendar to go in 2 months, but I'm ahead of schedule for once so trying to push it out the door sooner rather than later.

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    Italy - I like #2! Very feminine :)

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    Mom and I haven't been close for a long time. We aren't at odds...just not close. I sent her this pic today and she said "you make cancer look beautiful".

    It made me cry...

    image

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    she was right, you do look beautiful. Strong. Confident.

    I have a little lump in my throat too.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    great earrings too, btw.

    Rockin the entire look.

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  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited March 2015

    An update on the Look Good Feel Better class. It was OK. Most of the stuff taught I knew but I still got some good tips and reminders and maybe a little inspiration to use scarves - I wasn't planning on it. The makeup goodies were nice.

    There was a woman there who's at the end of her treatment and she got a lot out of it. I wasn't able to practice what they were teaching since I still have a full head of hair and eyebrows whereas she was able to since hers were just starting to grow back.

    I wouldn't drive far to go to one of these, but if it's near your house it's worth it.

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  • wpmoon
    wpmoon Member Posts: 270
    edited March 2015

    rleepac, you look great!!

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    IC, you look great in both, but the second one is my favorite. Even the colour looks great on you!

    Bekah, your mum is right! You loom stunning. I love the look of determination I can see in your eyes too!

    Katy, I'm so sorry about the whole insurance thing. That must be so stressful. I wish I could offer some advice but our system is different here. I hope they see sense and cover it all for you. Can your Dr prescribe you something to help you sleep? This is all hard enough to deal with without going without sleep as well. Thinking of you xxx


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  • DavisD
    DavisD Member Posts: 338
    edited March 2015

    Italy Chick-The wigs are both nice but I think I prefer the blonde one #2. Where did you find it? I think I will get mine buzzed since my "free haircut" turned out bad and it will only be for 2-3 weeks I guess.

    rleepac-I love love love that scarf on you! Did you find it local or order?

    Katy-this time I'll set you up in the spare room whever you come this way! Hope things start looking up in your financial future. you've been through so much. xoxo

    wpmoon-I'm checking out the 'chemo angels. Do you just call them and set up a time to meet with them.
    Good night all. Tomorrow is another day, Dianef7

     

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    I found it here. Her facility is close to my house.

    http://www.wigsbypattispearls.com/angelica-13637.h...

    She is a 12 year survivor of metatastic colon cancer, and as sweet as she can be.

    Hope all is well.

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  • DavisD
    DavisD Member Posts: 338
    edited March 2015

    Thanks Italy, maybe I'll have to take a trip to CA. Never been. I'll check her prices and maybe she would ship?  Did you decided on one and are they equally as comfortable? Best wishes, Diane

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    she does ship. The lace front hand tied wigs are the most comfortable and natural looking. They have a lace insert In the front and your natural scalp shows through them.

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  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    Thanks all. I had a good day today! Finally fatigue hit around 6 pm but otherwise I felt pretty good.

    Diane - the scarf was a gift from a friend and it was from a local store called 'Charming Charlie' at the mall. Might be a chain? The scarf is so soft and comfy :)

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  • agness
    agness Member Posts: 576
    edited March 2015

    I had an issue a couple times during treatment where I was overwelmed by histamines. Your body produces histamine to create inflammation and try to heal you. Anti-histamines only block the receptors but they don't actually decrease the levels of histamines in your body, they are a good place to start. If your wheezing, itchiness, rhinitis, watery eyes, etc symptoms don't subside then you might want to see about histamine intolerance.

    My naturopathic doc gave me DAO supplement called HistDAO and within a couple days I was so much better. It is the enzyme that breaks down histamine but since treatment causes so much damage and inflamnation it can overwelm you body's ability to break the histamine down. Some links:

    Histamine Intolerance - Another Great Pretender
    http://www.judytsafrirmd.com/histamine-intolerance-another-great-pretender/

    Histamine Intolerance: Could this be the cause of your problems

    http://doccarnahan.blogspot.com/2013/11/histamine-intolerance-could-this-be.html?m=1

    How to boost your histamine-lowering DAO enzyme

    http://thelowhistaminechef.com/dr-joneja-how-to-boost-your-histamine-lowering-dao-enzyme-naturally/

    These probiotic strains lower histamine rather than raising it
    http://thelowhistaminechef.com/these-probiotic-strains-lower-histamine-rather-than-raising-it/

    Histamine Restricted Diet -- to learn more about which foods are likely to trigger reactions

    http://chronichives.com/useful-information/histamine-restricted-diet/



    pS - I don't think you have to stop eating foods wit histamine, but if you are having issues then keep the lists in mind to perhaps adjust down a bit. No strawberries and sauerkraut at the same meal for instance

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    Survived my Taxol/Herceptin #3 without major issues nad breakdowns yesterday. Maybe I'm finally getting used to this?

    I am experiencing a burning sensation in 2 fingers of my left hand, as if I had burned myself cooking. Some burning at the bottom of my feet too, by the toes. This must be neuropathy, correct? Any experiences, Ladies? I am taking L-Glutamine and Vitamin B6 every day

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Italy: So GLAD you fired that insensitive clod of a doctor. Ugh.

    Shaz: You look beautiful! It is so nice to put some faces with the names finally.

    I will post my before picture soon.

    Cja: Welcome to the group! I think the shawl is a wonderful thing. My SIL gave me a rosary and I too, am not religious but it meant something to me that she did that.

    Jackbirdie: Thanks for the green tea info. Keep those tips coming!


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