Starting chemo November 2012

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  • Sickofpink
    Sickofpink Member Posts: 190
    edited November 2012

    File a greivance for insurance company to extend out of oocket benefit since it was reached at end of year. My rep said some policies do that already so its worth a try. I hope it works but agree about being grateful i bought a decent insurance policy to begin with. :)

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  • Sickofpink
    Sickofpink Member Posts: 190
    edited November 2012

    Tricia thx for all the encouragement. The joseph gel is for lashes and brows - to help keep them. I ordered it online after googling it. Pricey, but im shaving with a few friend the day before Thanksgiving ( thats my two weeks) not sure about 20 year old daughters, might want to comfort them instead of allowing myself the comfort of others- and im too wimpy about cold to try to save my hair, so the gel sounded doable.



    Im 7 days out, battling fiery heartburn, hoping to hit that good day and sleep laying down again. Does this mean ill have heartburn Every round?

    MY cocktail is 6 rounds of TCH, 35 days of radiation and more H every three weeks til next November, then pills.

    Nurse took one look at veins and scheduled port surgery - hubby is out of country at work so friend moved in to help, he hasn't seen it yet..,

    I went to work (teaching) last night but reluctantly withdrew from winter and am closing up shop for the usual frenzy of work projects to focus on new book coming out in May. Its done but im nervous about doing all promo online, hoping to not be too tired after radiation and end of chemo to grab wig and go sell it - ive been working on it for Years!

    Will it help to lay low or will i be exhausted no matter what?



    Still cant beleive this is happening after all my hiking and yoga...but the pain is convincing me...,So glad you ladies are there when its so lonely in the middle of the night

    Thankyouthankyouthankyou!

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    Sickofpink - I want to reserve a copy of your book!  Maybe it will end up becoming a movie or TV series ..  My friend wrote a book and it turned out to be the TV Series, which you've probably heard of "Boardwalk Empire" by Nelson Johnson.  Something to think about besides cancer!!! 

    I started feeling better at day 7 and I think a lot of  others did also.  Try those ginger snaps or saltines for your heartburn, we are on different meds but it may help...By day 10 I had more energy than in the last 2 months - chin up good days ahead!!  I got my port on Oct 25 and stilll have some scabbing but I am not touching it - don't want to bleed!!

    Hope you got some good sleep,,Have a good day. 

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    Welcome Megan and Jenifer.  Jenifer, I never had port education so would you let us know if there is anything we need to do/know.  Megan you sure do have a heck of a busy schedule ahead...You should make it home before you start feeling crappy.  Good luck and keep us posted. 

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    Michelle, I hope your feeling better today.  Don't know what those bandages are made of but I had an awful time too, went back 2 times to have it checked and bandage removed - Air was best healer.....

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    Junebug, instead of canned chicken soup, maybe you'd like to try this easy and delicious recipe and you can make a big pot and freeze some for next time (if there's any left,it sure does make your inners feel good:

    Tricia's Homemade Chicken Soup - In large (4-6 qt) pot, fill w/ 1/3 pot water; add 3 or 4 large chicken breasts with bone(the taste just isn't the same w/o bones), remove skin and bring to simmer; add 1 large box/ or large can College Inn Chicken Broth. I also add about 2 tbsp. chicken base like Wylers or something  From here the choice is yours but I like to use, fresh sliced carrots, celery, onion and some garlic; or you can use a bag of frozen mixed veggies (not canned, except corn)of your choice, maybe even a chopped tomato and seasoning of your choice.  when the chicken is cooked, pull meat off and disgard bones , now I add 1 box frozen chopped spinach. Simmer..Thats the basics, then I like to add some small pasta  (I use ditalini or small shells) If you like, you can add some tiny meatballs and get some grated romano or parmasan cheese that tops it off - yummie. PS, I  love to cook!!

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  • ltmguy
    ltmguy Member Posts: 49
    edited November 2012

    TricaM there is a standard of care (SOP) for short in the medical world that medical providers are suppose to follow.  They are national SOP's and yes U were right about grade 3 what it means is your cancer is fast growing mine was also.  You also did a Limpectomy which has an effects your standard of care.  These are all great ?'s for your ONC.  Insurance Companies have to allow a 2nd opinion.

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited November 2012

    My goodness ladies I had 42 updates this am u girls are busy. I had to take notes so here it goes....

    Sick if pink-

    Thanks for the cream idea and info and I want in on the book!!!

    Meagan-

    Welcome to the club nobody wants to join but we are a blast :)

    Carla's -

    Ditto to Meagan. Jump on in with us!!!

    Txjunebug-

    Good luck today. Keep us posted we are here for ya!!!

    Traii-

    Did u shave ur head??!

    Jennifer-

    Welcome to our women warriors

    Ltmguy-

    Soooo glad u feel great :)

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  • ltmguy
    ltmguy Member Posts: 49
    edited November 2012

    Sinkof pink I must say I was scared about the port.  It went really well.  I iced it all night after they placed it and everyone can't belive all great it looked.  It doesn't bother me much other than the tape that won't come off.

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited November 2012

    Not done.... Haha

    Tricia-

    Thanks for the recipe I am a horrible cook I will try it!!! Great idea about buying the book!!! Count me in

    Marian /

    Congrats and good luck

    Liefie-

    Love the title for edi's book

    Benny -

    1 down. U go girl!! LOVE the warrior. I will be printing that also!!!!

    Bearcub

    Thanks for ur thoughts. This experience has actually made me more confident in all areas of my life. And yes I have tons of Suppport unfortunately not from the one I thought I wanted it from the most. If well his loss

    Tricia-

    I got chemo based on onco type also, but I want to know I did everything possible to defeat it!!!

    And so glad u think 40 is young!!! I love you!!!

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited November 2012

    And one more-



    Edi-



    You make my day !!!

    Flaming elf ! Live it!!!hope the tea worked I drink it all day!! Just wondering does ur husband have any 49 something relatives he would like to send to MA!! I am in the market !!! Haha

    Love all u girls cheers to a S/E free day. I have to work now but I will be checking in !!!

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited November 2012

    Adagio, did you get my PM?

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    ltmguy Thanks you made me feel better.

    Dakota, Love U 2 and yes, you are a young chickadee same age as my daughter!!  I'm the mom, your the kid!!Tongue Out

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  • Eleni
    Eleni Member Posts: 130
    edited November 2012

    Thanks for the answer Itmguy. I do hope I don't need it. I prefer to drink red wine than having that :-)

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  • Eleni
    Eleni Member Posts: 130
    edited November 2012

    Port-a-cath question:

    All of you with a port a cath, is it used only for the chemo or also for all the bloodwork?

    I thought it'll make my life easier since my veins are always hidden but now they're telling me that "the nurses at the lab aren't allowed to take blood from the port"!! The complains department contacted me after my mail and said they'll try to find a solution.

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  • Eleni
    Eleni Member Posts: 130
    edited November 2012

    Another question..(yes, I'm feeling better :-)

    Have you lost your hair yet? I was afraid to wash mine in case it falls out. But today I got my wig, so I dared to wash it. I ordered the wig online cause at the shop it was ridiculously expensive.

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  • nanatwo6
    nanatwo6 Member Posts: 18
    edited November 2012

    TriciaM....that soup sounds so yummy, I will be making some of it real soon. How many days after my first treatment before I feel crummy or will that be right away ? After everything I already have been through you'd think I wouldn't be scared,,,,but the chemo part has me shaking in my boots !!! Guess I  better start taking the Xanax again :)

    Enjoy your weekend ladies,,do something nice just for yourself !!

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    Eleni, the port can be used for the lab BUT I think only the chemo staff can draw it.  They are going use my port since I already have it, why bruise my arm.

    Nanato6 I felt fine the day of chemo and the next day -day of Neulesta - the 3rd-6th day (3 or 4 days) I felt tired and achy so make that soup and freeze some!!  Last time I put a lot of lentils in it and spent lots of time making trips to the bathroom - don't do it -thought I was going to explodeCry!!! Lost 3 lbs - gained it right back Surprised

    One more thing, I'm going to try the Claritin the day of Neulesta like others have done and my doc said try it...

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  • maryah930
    maryah930 Member Posts: 322
    edited November 2012

    nanatwo6 - I feel the same way: diagnosis/tests/surgey, let's just do what needs to get done and get on with my life; chemo, shaking in my boots.  I start on Wednesday.  Maryah aka nanatotwo Wink

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  • Sickofpink
    Sickofpink Member Posts: 190
    edited November 2012

    Tricia thx again for being there, got a few hours of sleep , sitting up of course but thanks to my new Reading Wedge pillow. Of course i know Boardwalk, wonderful show, loves the women characters, dh uses clips in his teaching.

    My book is a novel and yes please help me make a living from chemo land instead of booktourland:/ and of course film rights are a goal but i just realized a minor but pivotal character has bc. Crap. Did i know or is it so stupidly common? My girls and i knit caps for cure years ago and now i need one.

    Lymgy- glad the port worked out!

    Eleni- i have ling thick hair so figured shaving would save grief but is it true people keep hair on TCH? The holiday caused me the schedule it for day 13 instead of 15- do i not need to?

    I almost splurged on a custom wig then realized book tour would be stupid during tx and found some cute ones for WAY less.

    Dakota- i haven't tried the lash gel yet but it was rec'd my another gal here so i await delivery.

    Okay good luck today, tgif, and i look forward to your comfort again at 4am.......

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited November 2012

    Eleni, yes here in Vancouver only chemo staff so I go up there to get my BW done then they leave the butterly in for chemo later that day or next. Normal labs do not have licensed staff. 

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    Maryah those boots were made for walking...no shakin allowed you will be fine and still be able to enjoy your thanksgiving

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  • ltmguy
    ltmguy Member Posts: 49
    edited November 2012

    Good afternoon My turn for NotesWink

    Dakota I am 40 also I must say I will never forget my 40th bithday scheduled my 1st MG 3 weeks guest what news I got.

    TriciaM Trust ur Gut.  The docs are human.  If they are not ? then mistakes are not found.  I know in my job I make mistakes it is just not life or death.

    Port Blood Draw A trained RN/DOC/PA must draw normally a RN will do it.  If every go to the ER tell them too they can do it there also.  Or for surgery Also if you have to have surgery again DONOT remove it before hand unless you have to.

    Elen I love my wine to

    Hair loss anyone yet I have not lost any

    Maryah I felt the same way before chemo up until the night before My husband and I went out for a really nice dinner We had a great bottle of wine the conversation was light we came back I fell a sleep and the morning of I woke up and was great ready to go,  My husband on the other hand came unguled.  I never talk to him about how he felt about me have to do Chemo.  We always talked about the kids and me.  Looking back we need to talk about him too.  I had just started feeling good again the week before I had Chemo from my surgery and he was able to return to work full time and have his life back.  He was about to loose all of this again.  In his eyes the chemo was going to be the worst of every side effect possible.  I normally have really bad SE from meds.

    I have done really good. 

    Just know we are all here and you can talk about what every it my be from BM's to jobs we all get it.

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  • ltmguy
    ltmguy Member Posts: 49
    edited November 2012

    Sickofpink A book cool do we get to know more?  

    My update

    I was up last night I finally was hungry at 10 pm and ate woke up at 130 when my son came in mom I had a bad dream can I sleep with you guys then guess who was up the rest of the night with hurt burnFrown  threw up at 430. felt a little better to get some of the food out but still not great.  I had field work today starting at 8am today.  Got done just in time to get kids and now you guys know where I have been.  next will be dinner plans with local politains that have won FUNUndecided I am not even hungry or in a good mood but I will smile hold a glass of wine and tell them how happy I am that they won.  So when I need a sponsor they are sure to right the check.  I will have to answer over and over how I feel and they will tell me how great I look.  I will tell them how great I am doing.  No I have no side effects.  The family is great. I go back....  Yes it is nice to have Thanksgiving without a "treatment"  HELLO I still have all of this XXXX going on no madder what you never know what the day may bring.  

    OK now I am done venting off for a shower to be the person I must be.

    ? WHO did infertility  I am asking because This is something the are now charting with ER and PR + PT at my ONC also the lenght of time on BC  they are seeing alot of cases with long use of BC and or Infertility drugs used

    I had both with the increase in younger PT

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    Itmguy do your best to have a wonderful night. You are so strong that I know you won't even have to pretend! Enjoy.....

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  • Thankful4mylife
    Thankful4mylife Member Posts: 56
    edited November 2012

    Hello all.... And Happy Friday :)



    I just wanted to thank all of you who shared words of encouragement in the beginning of the week when I felt horrible after my first treatment. I am 8 days past treatment and I feel good! Last Monday, I never pictured that was possible.



    Now I'm anxiously awaiting the hair to fall out. I know it's gonna happen so I just wish it'd happen soon so I can get it over with....the initial shock.



    I hope everyone is having a good day.....and for those who aren't, I hope tomorrow is better <3</p>

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    Tomorrow will be better - much better and so will the day after that...I am at day 11 and haven't lost a hair yet - wish it would stay that way but if not the wig is ready and waiting.

    By the looks of all my posts, I think I've become obsessed with this site - all my new friends - girls that understand and don't mind talking about it.  I'll try not to post so much..

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  • michellej1980
    michellej1980 Member Posts: 342
    edited November 2012

    Well, 8 days post-chemo and I have oral thrush! The back of my tongue was really bitter-tasting and the roof of my mouth felt rough. I had a look earlier and saw white spots on my tongue so knew I had thrush. Got some Nystan for it from the doc. Will ask the onc for more before next chemo. Med tastes nice so I'm happy and hopefully I can get rid of the nasty taste and enjoy more food!



    Feeling generally a bit brighter today. Actually went out of the house lol. Went to hospital to see plastics nurse for wound check and dressing change and then went and saw a comedian this evening. Probably not the best idea to sit in a theatre full of germ-carrying people but had booked tickets a year ago and I needed to get out!

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  • 5LuvBugs
    5LuvBugs Member Posts: 506
    edited November 2012

    Michelle, try the 2 tbsp baking soda to 1 quart water and swish it in your mouth.  My white tongue is pink again after a few days. Glad you got out and enjoyed yourself...

    There I go again...posting like I said I wouldn't

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  • Sfrey
    Sfrey Member Posts: 7
    edited November 2012

    Happy Friday!!!



    Sickofpink I have Daughters who are 20 and a 23... They were great support and comforted my friends during my shaving party.



    :-) Haven't lost any hair yet and my next treatment is Monday. My insurance covered 1 wig and I bought myself 1 but when at home I just leave my head naked.



    I still have some heartburn so I'm trying to eat bland food...hope I can eat on Turkey Day! Has anyone had any alcoholic beverages?



    My port was put in during my BMX and I have them use it for lab draws...I don't like the look of the Port but I sure like the convenience.



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