Starting chemo August 2017 - would love some moral support!

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Hi Elfmsg,

    I have a question, we seem to have a similar diagnosis, my tumor was 1,5 cm plus DCIS but you getting AC, I am only getting Taxol and I have been told that it was the standard protocol both in US and in Europe where I live and I wonder why do some people get AC too. I hope you will do great, I am 45 soon, not exactly the average age. Take carr If you. We can do it, we simply have to. Cherry

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  • salasila
    salasila Member Posts: 41
    edited August 2017

    Hey Cherry-sw: You and I have almost the same dx and almost the same age -- you're a year younger than me Smile

    I had a BMX tho ...

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Cherry - how are you feeling hun? Doing better?

    Elfmcg - it is scary feeling for the first AC, once you find out your own SE it helps to face it. We are here for supports. It is doable.

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Hi sarasila, yes we have the same diagnosis I can see it. I see you have started chemo, how is it going? This is my second day after my first Taxol, and so far I only was hungry and had hot flushes but I know se comes later. My tumor was located outside the breast, high above, almost on the same level as armpit, my option was lumpectomy and here they are strong adepts of lumpectomy If the breast can be saved, I do not know If it is due to costs or because they still just want to save as much as possible so a woman would have some quality of life and selfconfidence, however this is what I had. Do you have any younger children at home? Cherry

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  • Elfmcg
    Elfmcg Member Posts: 91
    edited August 2017

    Hi Cherry,

    I've no idea, my onc told me that the dose dense ACTH was what the standard, and what I'd be getting if I was in New York, but I'm sure yours has their reasons, it's so hard here in Europe, it seems to a greater extent than the US that we have to just trust the medical professionals. I had such a fight to start my chemo under sixty days post surgery and just managed to get in. There's seems to be much better protocols in the US.


    Maybe it's because the actual invasive tumour was smaller than mine that they just went to taxol? Maybe it's only when a tumour gets to 2cm that they do the AC, maybe because you're hormone positive, it's different. have you started yet? I'm 36,So much information overload, isn't it? I wish you all the best also, we can totally do this X

    Thanks Paulette X I'm hoping against hope for minimal side effects, I got the hair off today and feel it's given me a bit more control

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Ladies,

    I'm on Day 6 post first AC tx and feeling pretty good! Almost normal but slightly weaker. Will take a long walk today and hope that boosts my energy.

    The worst part of the SE's for me (knowing everyone is different) was extreme fatigue. I think the anti nausea medicine contributed to that so i will speak to my doctor about it.

    A nice story now. My 9 year old started 4th grade today. I emailed her teacher yesterday and told him my story.. that I have breast cancer... undergoing chemo... blah blah blah. I just want him to keep an eye on her in case she talks about it at school or has worries she doesn't want to share with me. Anyway, he emailed me back and said his mother had breast cancer as well when HE was in 4th grade. She is a principal at a nearby school and doing well. So that had to be quite some time ago and she is doing just fine. Just thought i would share as I hope I will still be kicking it when my daughter is grown and working in her chosen profession.

    Hugs to you all, I hope everyone is doing ok. This is a long road, but I think we can do it. One step at a time.

    Rebekah

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Elfmcg- good luck with your infusion, pray that you don't have much SE. I'm much older than you and you should able handle it better than I do.

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  • sweetp6217
    sweetp6217 Member Posts: 365
    edited August 2017

    Rebekah, I'm so glad you're feeling good. Getting rest when you can? I once rested a bit too long and failed to take a med or two on time; couldn't hear the alarms

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    SweetPea,

    I slept around 18 hours both Sat and Sun! Definitely resting as much as my body tells me to. I also took disability on my doctor's advice. I figured if ever I needed it, now was probably the time. Good decision for me because I am able to focus on getting better. My job was stressful and I sometimes wonder if it contributed to my cancer. I am going to look for a change after treatment is over

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  • sweetp6217
    sweetp6217 Member Posts: 365
    edited August 2017

    Good idea Rebekah. My job used to be stressful, but my boss is trying her best to be restrained compared to normal, except for not allowing me to have sound on my phone to remind me to take meds while at work. I have the sound down at 1/5, don't tell :)

    Her restraint might not last long depending on my side effects. Already took a day off but shift got covered.

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Sweetpea,

    How are you finding the Carboplatin SE's? I may do that one if I dont get a good response from AC.


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  • Elfmcg
    Elfmcg Member Posts: 91
    edited August 2017

    thanks Paulette, do you mind me asking, what days post chemo did you feel worst side effects

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Elfmcg, I am in Europe too, in Sweden actually. Where in Europe are you? I did get it explained in another group, the difference in our treatment is the hormonal status of the tumor, I missed it at first. I am 45 soon, no information is an overload here, these boards are for sharing info. I also fel that the doctors here want us to trust them and I need things to be explained to me so I fel that I am a part of the decision process and not just an object with disease they treat. Hugs Cherry

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Rebekah, what a story about your girl's teacher and his mother, really both puts things into perspective and gives one hope. Even though I wish nobody ever got cancer I love to hear those stories. He will be best possibie support for your daughter in school I am sure of this. I have an 11 years old and we still did not tell her, but everybody is telling me that children are resilient and fel the same way you feel, If you feel positive they will feel this way too. Now she has another person around her who can tell her that it went well for us it will be the same for you. Good luck with the chemo, this is my second day of the first T, Cherry.

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  • Elfmcg
    Elfmcg Member Posts: 91
    edited August 2017

    Hi Cherry, I'm in Ireland. I was thinking it was something to do with the fact you were er+ as they have the hormone treatments for that, where the chemo and herceptin are my lines of defence and the kitchen sink has to be thrown at it.

    I need to have a strong grip on what's being said to me too, I feel some poor women here in Europe just take exactly what the doctors say and don't do much research. I got my neulasta injection today, it's to build my white blood cells back up, you get it after AC, and only for I read on here, that you should take Claritin, a simple anti histemene beforehand to prevent bone pain, I wouldn't have known, the nurse knewnothing about it. So I i learn great things here x

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Cherry,

    I have told my daughter everything and honestly I just dont think kids have the connotation for cancer that we do. She really has not seemed the least bit worried. The only thing she cares is that I don't show up to school bald. Haha. The worries of a 9 year old! But Im glad that is her biggest concern.

    Rebekah

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Elfmcg - my bad days are day 4-6 after that things are getting better. Thats from my experience. Yes take your Claritin in advance and I still take mine on the fifth day.


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  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited August 2017

    We also told our children, ages 8 and 11. The most difficult thing was trying to be as real as possle without scaring them. They handled it well and my daughter (the 8 year old) was more concerned with me losing my hair than anything else. My son (11) was upset at first but now seems to not be bothered by the whole thing. Kids are really resilient and I believe it would have been more traumatic to keep this from them and have them wondering why I'm sick and can't do the things that I usually do with them.
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  • Tmoultrup
    Tmoultrup Member Posts: 4
    edited August 2017

    Yes, 12 weeks of Taxol starting on Thursday, yippee!!!! I'll keep you all posted!

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  • Tmoultrup
    Tmoultrup Member Posts: 4
    edited August 2017

    yes, I took Claritin (loratadine) for 7 days each time staring on Day of treatment and didn't have any bone pain,

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  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    hey all!!

    Currently on day 2 of first chemo. Not so bad today but called out of work for fatigue. I need the rest.

    First day was a long one. The port placement was great but had lots of pain after especially in the neck area. I'm better now.

    Chemo went good, nothing crazy to report about. Nurses were great. I got all the info I was wondering about lol. When I got home I ate a salad and chicken noodle soup.

    Went to bed at 9 since I was tired and in pain. Took compazin. At 1am I woke up nauseated. Spend the next hour in and out of the bathroom dry heaving. Then eventually it came up. Soon after i was able to sleep.

    This morning I woke up and had no appetite. I managed to eat a slice toast, tea and a piece of dragonfruit. So unlike me! I love food lol.

    Went to get the neulasta shot today and took Claritin prior. No bone pain to report. Fingers crossed! Ate a banana and water. Just had a popsicle since no appetite and my mom was like you need something in your stomach.

    Other than that I'm feeling ok. I hope side effects don't get worse or new ones pop up but I'm prepared if they do.

    😘 Welcome to all the newbies!

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  • KByTheLake
    KByTheLake Member Posts: 52
    edited August 2017

    LCin312--I'm with you about the eyebrows. No eyebrows really screams "cancer patient!" in my mind. So I ordered human hair false eyebrows in case mine fall out. They weren't cheap--$50 a pair--but they are supposed to last three months. I got mine from Headcovers Unlimited.

    I had my first infusion today (taxotere and cytoxin) and it was so anticlimactic! For all I know, they just infused saline--although the protective gear that my nurse wore every time she touched my iv bags probably means it was not saline! I came home, took my dog for a 25-minute walk through town, played the piano for an hour, met some new neighbors, and went out for dinner. (Very high protein--grilled shrimp over grilled romaine lettuce, with walnuts, boiled eggs, and tomatoes. Delish!)They told me that I probably won't be feeling so hot by Friday so I'm going to live it up while I still can.

    I spent a good half hour during the infusion meditating on a mantra of "my healthy cells are protected from the drugs, but the cancer cells are being destroyed." My nurse also suggested visualizing Pac-Man gobbling up all the cancer cells.

    I go back tomorrow for a Nuelasta shot. Hopefully that will be uneventful, too! I'm getting a crew cut on Saturday. I couldn't bear to see my long, red hair fall out. Plus my dad had a crew cut from 1954 until his death in 2003. I think he would like me to rock his look for a little while!

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  • KByTheLake
    KByTheLake Member Posts: 52
    edited August 2017

    Elfmcg--I'm in the US but I've been in love with all things Irish since I was a kid. I even wrote my master's thesis about Irish-American press coverage of the 1916 Easter Rising and studied Irish language! An bhfuil Gaeilge agat?

    Karen

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  • Elfmcg
    Elfmcg Member Posts: 91
    edited August 2017

    Hi ladies, agus Dia duit Kbythelake, ta cupla focal agam 😊Sorry about the lack of fadas, I don't know how to do them on my phone. I reckon a crew cut is totally the way to go, I did mine yesterday, after my first infusion and am very happy with the roundiness of my head. I'm a make up artist, and had had my eyebrows 'embrowderied' a type of tattoo, so thank god, if and when my hairs fall out the tattoo which is like hair strokes will still be there

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    Ladies,

    I think mouth sores may be my nemesis for the next six months. I have been swishing with baking soda/water, but I finally got two anyway. I've always been susceptible to them so I am not surprised. Any other suggestions? Does Biotene prevent or give relief? And where can I get it?

    It sounds like most insurance doesnt cover the Magic Mouthwash.,,,

    Rebekah

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Rebekah, toughcookie, we have not tell our daughter yet because her junior school teacher lost her younger sister to cancer last year, everybody in school new and this is what c is to my daughter. On Friday we will meet a councellour to discuss how we shall tell her and on Monday I will get my wig so I hope she will not be embarassed for me going without any hair. I am very tired today, sort of sleepy but cannot sleep exactly, very strange feeling, completely drained,Cherry

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Elfmcg, I have an old school friend living in Galway, have not seen her in 15 years, was planning a trip this or next year, so wanted to drive around although I never drived in left-hand traffic before. Well, we will have this trip later, next year maybe. Here in Sweden everything is govermental, I believe you have similar system, and you do not have the same choices they have in US. But I will meet another oncologist as well in another clinic, they have although the same treatment to offer. And this is exactly as you say, the difference is hormone positive status and therefore T. Cherry

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  • KByTheLake
    KByTheLake Member Posts: 52
    edited August 2017

    Rdeesides, I've heard that 1 part Milk of Magnesia + 1 part liquid Benadryl is helpful for mouth sores. I haven't had to try it yet but I've heard it's really effective. Just swish it around your mouth for about a minute and spit it out.

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  • rdeesides
    rdeesides Member Posts: 459
    edited August 2017

    KBytheLake,

    Excellent! I will run to the drugstore to buy the stuff and will give it a try and then report out.

    I do have liquid lidocaine from the dentist, but that just numbs the area and doesnt really do anything therapeutic.


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  • Willow22
    Willow22 Member Posts: 220
    edited August 2017

    rebekah, i saw biotene rinse at target when i bought my biotene sensitive mouth (mild flavor) toothpaste. However, it was not with all the other toothpastes... both biotene products were on a different shelf by the kids toothpaste, denture adhesives, etc.... not near regular toothpastes or mouthwashes/fluoride rinses, so you may need to ask. I would think walmart and large drug stores would have it too.

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