January 2013 chemo group

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  • smethot
    smethot Member Posts: 161
    edited January 2013

    Hey All...healing pretty well from lx and ax node removal jan 18th- waiting on path report sucks.  I know i had at least 2 nodes positive (hence the ax instead of sentinel) and the waiting sucks.  I also have to do tests from hell because of the positive nodes & my age (40) so today we have cat scan & surgeon, monday is bone scan and tues is mri.  The testing alone is too scary...you need to know and its better to know but sometimes i just dont WANT to know.  And the waiting blows dead bears.  Hoping the surgeon has a partial story on path today- (pls few nodes & clean margins)- she said 2 weeks for full report and its only been a week- no onco type - i KNOW i'm doing chemo- so NOT the bar i am used to visiting... 

    Bryona- totally retaining the killer spirit- lumpie is DEAD and being dissected as we speak to provide info on my best treatment options.  Cellular insurgents will also be sytematically hunted down and eradicated...nowhere to run to, baby...nowhere to hide.  I get no hair- you get f***ing FRIED.  Trying to stay happy and positive (painkillers after surgery were good for that) and hoping for great results.  Onwards and upwards...right???

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Armdbit great analogy on the hangover description. BTW, whenever I was thinking about you, your name comes to me as "arm bandit". Now it is becoming "armed a bit". LOL  It is just a way for me to associate people and their names.

    Colleen mine were low too. Doc only told me to take 2,000, but I asked her if I could double it which didn't seem to bother her. I often wondered if that is something that just comes along as we age of if the cellular insurgents have taken down the battle houses that hold our 'D'. Thanks Shannon, that like is going to stick with us for a while.

    Well, I am super disappointed that I didn't get to enjoy my steroid high last night. My house could have used some cleaning. But I slept GREAT! Guess I'm disappointed that I am rolling into this second round without much pre-thought, just feeling customary. Now Im worrying about whether I should have eaten better last night, what am I going to not take with me that I will later regret, I wish I would have done a reiki session or looked into the meditating harder.

    So, back on the peeing thing. I was never told anything about putting the lid down and flushing twice in chemo class. Now I'm scared about what that means if I want to go hiking, snow shoeing or something. No squatting in the woods? Those poor little critters out there. Damn!

    Skigirl, how are your eyebrows/lashes? I would like a point of reference to know whether the Brian Joseph's is working, or whether it is too early to count that chicken. Still have some nose hair. Haven't shaved my pits for a week, but nothing there. I guess it just didn't grow back. And I seem to have stubble on my legs, but it is not growing. Maybe if I shave that off too it will be done, but it is just so slight I kept waiting to see whether it was growing or not. It is like the "next day" stubble, but I can't remember the last time I shaved. And the hair "down there". Nicely almost done. Hallelujah for that one.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    smethot "I get no hair, you get F---ing fried!" Love it!!

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  • NikkiLiz
    NikkiLiz Member Posts: 36
    edited January 2013

    Skimommi-I never heard anything about the toilet either, but I do for the first 3 days until I know it's flushed (out of my body) for the most part. Since I am a fellow pee-er in the woods I would just dig a cat hole away from any water source and go there. However I know it would probably be out of my system by the time I felt up to a hike.

    Also I should be getting my Brian Joseph's any day now so since you are a week ahead of me let me know how it's working. Hopefully I'm not starting it too late.



    Smethot-you crack me up. Period. :-) you have such a great attitude.



    Good luck to all that has an early HH!



    Nikki

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Skimommi- only thing to go so far is my scalp hair. Eyebrows and lashed are holding strong. Everything else is there but it seems the growth has stopped or has slowed down. I have been taking a washcloth in the shower and scrubbing my head to get all the stubble off now. I am resisting the urge to shave it all off with a razor. I was told that it will itch and I might get razor burn. I can just tug on the hair and it falls out.

    smethot-Waiting is the thing that gets me too. I want answers to my tests immediately. I know that cant happen in a perfect world. So, I am doing my best to be patient. No one wants the news we are given. We just have to find a productive way to deal with everything that is thrown at us.

    Good luck to all those heading to the bar today. Bottoms up!

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  • Watta
    Watta Member Posts: 22
    edited January 2013

    I've been feeling great for the past few days, but I'm already starting to fret about my 2nd treatment next Wednesday. Thank goodness I have an acupuncture appointment on Tuesday.



    As Chumbawamba sings:

    I get knocked down

    But I get up again

    You're never going to keep me down



    I have my first mouth sore this morning...a bit sore but I hope the Biotene helps. I LOVE the taste of it which makes it easy to rinse frequently.



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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    skimommi, my mental image of you with the lint roller has somehow overlapped with the drunken emoticon, and now I'm picturing you with a lint roller in one hand and a glass of wine in the other, singing karaoke at the top of your lungs. Is that wrong? :) Oh, and I found out about Nancy when she posted a pic from her hospital room yesterday morning on FB. I thought to myself, "Now wait a minute. What the heck is Nancy doing with a hospital room?" and went to check it out.

    Sandra, that's exactly how I felt! The idea of every drug made me feel sick; by day 4, even taking Prilosec made me want to cry. (((hugs))) to you, sister. I hope your excellent next week begins right now.

    Jubby, ciao bella, and good luck today. I'm sure you're right: No matter how much I knew about what might happen, it was only when things actually happened that I could begin to really prepare. The next few days may be strange, but we're here for you.

    smethot, you swear more creatively than anyone I know. I think it leaves you uniquely prepared for this ridiculous journey. :) I hope your surgeon can give you the big stuff today, and that your warrior sentinel nodes did their jobs well. Waiting sucks.

    Lee, I hope you got some sleep... or at least made some lovely broccoli to torture SeattleMama with.

    Good luck to our second round Happy Hour girls today! skimommi, Skigirl, slainte! (Which is Irish Gaelic for "Cheers!" Sometimes I'm just bored with Italian. I'm so cosmopolitan...)

    (I need a bigger calendar. I have everyone's first chemo down, but then I don't know nothin'...)

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  • Oliverhog
    Oliverhog Member Posts: 74
    edited January 2013

    Bryona, are you still in PT for the tightness after the lumpectomy?  How's it going?  I can't tell if I need PT because my mastectomy area (11/30/12) is still numb.  I've got great shoulder range of motion, but I'm really worried about the chest wall muscle itself since the fascia was removed and now the skin lies directly over it.

    Skimommi, I just read your post from 12/28 and I feel so bad for you.  I can't imagine losing my mom at such a young age and have my poor dad crying.  My dad passed away on 10/12/12 on the front porch in front of my sister and mom.  My sister tried to resuscitate him and it didn't work.  My mom's dad was diagnosed with pancreatic cancer in February 2012 and passed away three weeks before I was diagnosed with BC.  The other day she told me she feels like one of those African deer like animals that just got taken down by a lion and is lying there alive but helpless as the lion begins to eat the live deer. And I'm sitting there listening to her thinking, 'I lost my dad and my grandpa AND I'M the one with BC.  I need you.'

    Skigirl72, you look beautiful bald.

    I think I missed a lot of posts in the past few days.  I was at the ER with a fever Tuesday night after having felt really, really exhausted all day.  Had no appetite or thirst whatsoever, so I ended up being dehydrated.  Sent me home with antibiotics.  Had a headache for three days now that nothing really seems to help.  AND I lost almost ALL of my hair last night.  It was starting to shed Tuesday night at the hospital.  When I went to the bathroom last night, I combed it over the sink and it kept shedding and shedding.  I ended up losing almost all of it last night.  I alternate between laughing hysterically and crying.  My seven year old son saw the pile of hair in the bathroom waste can and told my husband it's 'O.K. if Mommy goes bald.  She'll have her hair by summer so she won't get sunburned.'  Then I cried again.

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Good luck to everyone heading to 'the bar' today.  Rhonda, I think you are using the cold caps so I wish you the best - stay hydrated and warm! I'd love to hear how it goes if you want to PM me. Our furnace decided to go out last night and it is now in the low 50s in the house and only 8 degrees outside - almost feel like I'm back in the chemo room with my cold cap on, fingers and toes icing, so I guess it's good training for me Smile.

    Nancy - if you are on the boards, I hope you are doing okay and will be praying for a speedy recovery!

    smethot -the waiting is the hardest part; once you know what you're dealing with it gets better...my prayers are with you for all good news!  You have a great fighting spitit and no doubt whatever happens you'll be awesome!

    I'm also interested to hear about the Brian Joseph's stuff...I am planning to use Latisse once chemo is over. I did post on a couple of the other boards and many ladies said they kept most of their brows and lashes throughout and then went through cycles of losing and regrowing for about a year afterward, and Latisse seemed to help speed up the regrowth process to a couple of weeks.  They need something like that you could rub all over your head! I also heard about a shampoo that is called FAST that some see good growth with post-chemo...one of the posters said it was designed for chemo patients but I haven't really looked into it myself.  using the caps, I have a complicated enough routine so I haven't researched those products as I couldn't use them for several months.

    Have a great day, friends!

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Oliverhog, (((hugs))) for the rough stretch you and your family have been through. I can't even begin to imagine what it must be like for you or your mom. 

    I'm still in PT, but it's for a preexisting condition (thoracic outlet syndrome). All the tightness from the surgery has resolved for me. (I'm a lucky girl.) I'm a huge fan of PT, though, so if I were you and I had the option, I'd go see one. Do you have to have a perscription, or can you just go?

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Just remembered one more tip for the first timers today that someone passed along to me and I think will be very helpful...each mornng when I wake up, I make note of any type of side effect I noticed, even if mild...I also note my temperature and weght, bowel movement (sorry if TMI!) status and how I slept.  I think this will really help me as I go through subsequent rounds to remember on what days I noticed what types of SE and what I did to alleviate them...from what I've been told there are usually patterns so maybe I can ward some off better later on.  While I thought "I'll remember what happened" that's pretty unrealistic as the days all kind of seem to blur together after awhile.  It's also a good record to take when seeing my MO so that I don't forget anything I want to mention.  

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    ok everyone... get ready for a giggle... I just unleashed the pet hair sticky roller on my head. It works like a charm. LMAO... oh dear.

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    hope, that's great advice. I was shocked by how I was totally unable to remember anything in the first few days, so I wrote everything down -- which drugs I took, what I ate, what side effects I had, temperature, bowel movements, EVERYTHING -- and noted times for every note. It really helped me to figure out which SEs were connected to what. Looking back at it all now, I am able to make a much better plan for my next tx. So grateful for it.

    Nancy update: Good news! Nancy seems to be feeling much better this morning. She's posting like crazy on FB, and she sounds far more lucid and cheerful. Apparently, this wasn't just dehydration: she said she had a terrible reaction to the Neulasta and/or Taxotere, and her son brought her to the hospital because he thought she was having a stroke. So, so scary! But this morning, her white cells were up, and she's hoping to be released by Saturday. Atta girl, Nancy!

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    But Skigirl, I can't find an emoticon for that... (Oh, lord, you crack me up!)

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  • smethot
    smethot Member Posts: 161
    edited January 2013

    ...its like you need a flow-bee...does anyone remmeber those?  The vacuum & haircutter all in one.  Although i guess we don't need the haircutter part...maybe just take the dyson attachment to my head?  Made the appt for the wig-place.  Any suggestions?  I want a short synthetic with bangs...the easier the better- real hair seems too much of a pain.  Going to Sephora for eyelashes and eyebrow stencils...i suck at art- so glad for stencils...and powers and brushes and pencils.  I am so not looking forward to painting on eyebrows...but if i don't do it...how will i know where to stop my eyeshadow???  I'll have racing stripes up my whole head!  How are any of you doing with THAT nonsense?  Painting on eyebrows???

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  • Oliverhog
    Oliverhog Member Posts: 74
    edited January 2013

    Bryona, thanks.  Skigirl, hysterical!  

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Deb- you crack me up! What is Brian Joseph's?







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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Glad to hear Nancy's on the mend - also glad to hear you're dealing with the dehydration, Oliverhog.  And your son sounds like a sweetheart. 

    I was surprised by the fact that I fell asleep on the sofa at 9:30 pm, despite having steroids in the IV bag earlier in the day.  I got up around 11:00 and took an Ambien and slept until 4:30 (nature calling) and then fell back to sleep until 5:30 (time for anti-nausea med) and even drifted off a bit more after that.  I definitely don't feel as much frenetic energy as I did after the first round - and that's fine with me.  

    I keep a chemo diary as well.  I just re-started the day one history for treatment #2 yesterday.  

    I hope everyone has a good day with relative few (or no) side effects!

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    smethot, I did buy somthing called Wunderbrow that I'm hoping can fill in the sparse areas until they grow back, it has tiny fibers in it and is supposed to stay put - don't want anything melting off if I'm out.  Got it pre-emptively as it seems like the TCX4 people I heard from had thinning but not total loss unless it was after treatment.  So not sure what your regimen is, but maybe it won't be too much loss and you won't have to have eye shadow up your forehead or paint on brows.  I have been told that if you go to one of the ACS 'Look Good Feel Good' workshops they can show you how to do brows and makeup and give you a ton of goodies to go home with.  I haven't been motivated enough to check it out but have heard good things about it...you can find links and dates on the ACS website I think.  Has anyone attended one of these classes?

    LOL about the flobee, too!  Could be a whole resurgence of interest in that product :)

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited January 2013

    LeeA - I think the reasons most doctors still prescribe Vitamin D2 is that it is cheaper. My Onc said D2 would be beneficial (and he said I don't have to pay for the more expensive D3), but since I had already purchased the Garden of Eden Raw Vitamin D3 he said that was fine.  I noticed it made me wheeze, so I switched to the Source Naturals liquid. So I thought it might be due to cost awareness, the reason for the mention of D2 by some docs. 

    I read, that to make vitamin D, you need at least 60% of your body in the sun unclothed and without sunscreen on for 20 minutes, but when the sun ray's are weaker, you will need more time in the sun.  Dr. Oz said 45 minutes is good for several days worth.  I think all accounts are slightly conflicting on how much, and on how much is safe, but they all brand the same message - which is that we need the D.

    What brand is everyone taking, of the 10,000 units?

    I read a report that an Oncologist did his own study - after he kept seeing women dx'd with TNBC in his office.  He went back through all their files and tracked them to Vitamin D deficiencies.  It was the majority of them with a D deficiency.  

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited January 2013

    Hope 49 - I've heard those are excellent classes!

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  • smethot
    smethot Member Posts: 161
    edited January 2013

    Don't have a chemo regimen yet...still waiting...  Are the classes available in Canada?  I honestly think the damned eybrows freak me out more than the hair...faces look odd without eyebrows...bald people you see all the time- although arguably the baldies aren't usually women.  I figure wig or hats (i bought a bunch from headcovers) will be cool- no big.  But the drawing on on the eyebrows...eeeeekkk!!!  And i'll be bald in the summer...will my painted on eyebrows melt off when i'm sweating like a goat in the middle of July when its 35 degrees in the shade (and that's celcius for my American friends)?  I sweat like a goat under the best of circumstances (we won't even TALK about the node armpit i can't put deodorant on!!!) so how the mumbledy-f*** am i supposed to keep painted on eyebrows on my face without them sliding down my face???  Damned insurgents causing all these hassles...blast those f***ers...grumble...grumble...

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    smethot - ha ha ha @ mumbledy-f***

    I bought an Anastasia brow kit on sale at Nordstrom last week ($48, includes the two-tone brow color, tweezers (I think, I haven't even opened it up yet), stencils and brow gel (I think), but the idea of stenciling on eyebrows just leaves me cold but I suppose I will do it - although I loathe wearing makeup and try to keep it to the bare minimum because my skin is so darn sensitive.  Whew.  That was a run-on sentence if I've ever seen one.  Don't give me a D- Bryona! 

    p.s. 1 - All this Anastasia stuff is housed in a handy dandy pink case.  

    p.s. 2 - my MO used to have chemo class but no longer offers one.  I think he tries to keep things as low key as possible but yesterday he did give us a sex lesson - LOLOL!  Still chuckling about it today.  I love him.

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    smethot, you crack me up!  I googled and found that it's actually called "Look Good Feel Better" and is available in Canada

    Canada

    Look Good Feel Better
    www.lookgoodfeelbetter.ca
    lgfb@lgfb.ca
    Phone: 905 890 5161

     
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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited January 2013

    Bare Escentuals has a brow powder that stays on - you just use a tiny applicator brush and draw it on. I found it looks more natural than a pencil on me, and it's one of the safer products listed on the safe cosmetics website.

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Brian Josephs is a brow and lash gel to hopefully keep them through all this. I am waiting for my delivery. I havent noticed anything happening with my lashes or brows. Just my scalp and it seems as though my legs and pits and 'other places' have stopped growing. No stubble for days.

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  • MandyNJ
    MandyNJ Member Posts: 73
    edited January 2013

    Hi Jubby - I have two little ones as well - my son, Anthony, is nearly 6, and my daughter, Victoria, has just turned 2. I'm 34.

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  • NHMom
    NHMom Member Posts: 9
    edited January 2013

    Hi - I posted a comment a quite awhile ago, but have just been soaking up all the wonderful information and positive attitudes since then.  I received my second round of A/C yesterday, and wanted to pass along a tip that I got from someone who successfully went through treatment for Breast Cancer last year.  If you are having problems with your taste buds (and can actually stand the thought of doing what I'm about to suggest!) then take a tbl of olive oil and swish (and spit) twice a day.   I did this during my first round and have had no problems with my taste buds.  I don't know if the last of taste is cumulative, but I am hopeful that this will continue to help me, and all of you!  I apologize if this was already mentioned - I'm only through page 26 of 35 pages, and just wanted to throw this out there in case it can help someone.  Good luck to ALL!   Polly

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Polly that's an interesting tip...did you start it the first day, and then how many days do you have to do it?

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Hi, Mandy! How's the recovery coming along?

    Welcome back, Polly (NHMom). It's good to hear from you, and I don't remember anyone mentioning the olive oil solution before, so well done, indeed!

    Lee, glad you got some sleep, and I hope you're feeling okay today. I wonder if the run-on sentence is a new side effect, to replace the exclamation points from last time. Hmm... well, either way, there's no way I'm giving you a D-. A smart teacher does not give Ds to students who write better than she does! :)

    smethot, look on the bright side: Maybe you'll be so cool and refreshed due to your balditude, you'll only sweat like a ... small guinea pig? I don't think they sweat much, even with all that fur...

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