August 2011 chemo, anyone w/ me?!

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited July 2011

    I get that cold sensation all the time, it just happened tonight infact!! I also get that tingly kind of painful feeling when someone or thing touches the back of my arm....it's weird. Not really "pain"... more like a pins/needles feeling???



    TSB....I am actually starting to become worried the last couple days because my AND arm doesn't really seem to be getting better very quick??? I still can't extend it all the way straight down, when I walk around I seem to carry it in a "sling"position....I can only lift it up to about shoulder height (not quite) and it's really tight when I do that. I can't open things with it, can't really use it for much more than a purse hanger???? I'm almost 3 weeks out? Not one time has my BS mentioned exercises I should or should not do, or anything that might help it. I try to stretch it myself but don't get far! I can't even really look at the AND incision because I can't get clearance of my arm.... :(

    I'm thinking I am headed to full on physical therapy? I don't want to walk around like I'm one armed forever..... UGH. They did use derma bond on me, but my BS pulled it too quick from my port site and holy cow there's one super sensitive area. Basically, I'm a hot mess....and haven't even started treatment yet!



    Musicalmom....definitely too much reading tonight!!! That's how I am too.... We have to remember the amount of drugs, tactics our doctors will have to throw at the side effects.... None of us should puke or be so miserable we feel like we might die (like chemo is portrayed on movies/TV). Atleast let's all hope what the doctors say is true!!!! I can't feel like total crap for 18 weeks straight....

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  • edoyrest
    edoyrest Member Posts: 55
    edited July 2011

    Madismommy7 - My hospital offered in-home occupational therapy, she gave me 5 exercises to help increase my range of motion and to prevent scarring adhesions.  My BS didn't offer any advice in this area either.  It really helped, I'm now 8 wks out from AND surgery/re-excision of lumectomies and feel almost 100%, I attribute it to the exercises from the OT.  Best wishes for speedy recovery from this. 

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  • vtellen
    vtellen Member Posts: 345
    edited July 2011

    My surgeon just said "let pain  be your guide", so as we are renovating our bedroom/bath, I think it was under a week before I was pushing a paint roller (after surg.) I avoided lifting anything that weighed much at all. And my incision would puff a bit if I over did it , but surgery was on 6/23 and I am pretty much back to normal. My lump was right near my armpit, though- so, my scar is just one longish line, kinda cool. Madismommy, try massage (my masseuse is trained in lymph therapy) and PT. You should be more mobile, and they can probably help. I am also getting some accupuncture.

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  • Ybrooker1
    Ybrooker1 Member Posts: 41
    edited July 2011

    Hi ladies....sorry haven't posted since my first chemo. So here is a synopsis of my experience. I cried as soon as I got there, cried every time my name was called ( Yvette, are you here? Yvette would you mind participating in a survey? How about another survey? Yvette time for labs, Yvette time for vitals.....Yvette, let's get you back to see the doctor now....blah, blabbering, blah!) I felt like this was "it" every time my name was called. My poor DH was doing all he could to keep me off of the edge of the ledge! Not to mention he was lugging around all of the necessary cold cap stuff in two 60quart coolers!!!!! After seeing my MO and her NP, it was time to get the show on the road. I wasn't particularly feeling any warm and fuzzies from the nurse who came to take me to the "room of doom", but the others were nice.



    I have an EXTREME phobia of needles, so the next couple of minutes were hell for me. There was nothing to numb my port site, so if any of you are like me, make sure you get a scrip for some type of numbing cream you have to put on about an hour ahead of time. I was then given 3 types of anti-nausea meds (Emend & Ativan via IV and Decadron orally) to take to help with side effects.



    For those doing the Pengiun Cold Cap, this is the time to start that process too while the pre-meds are taking place. Be sure that the cap is not touching any parts of your scalp/skin as to avoid the troublesome burn I encountered. Other than that, not to many problems with the cold caps.



    Bring on the poison :-( This part wasn't as bad as I conjured it up in my head to be. First I got the Adriamycin. Funny how I thought it would just be hooked up to drip from an IV, but the nurse actually sits there with 2 huge syringes and pushes it into your IV. It looked blood red in color....only took about 5 minutes! Next came the Cytoxan, clear in color....this was hung to drip for 30 minutes. All-in-all, I would say the "process" wasn't as horrible as I imagined. I didn't feel or taste anything funny. I just kept waiting for the other shoe to drop. About an hour after getting home, I felt a slight twinge of nausea, took some Zofran and headed off to sleep. Restful sleep.....NO! Up & peeing every hour from the tons of liquid I drank until the next morning ;-). Every time I got up to go potty, I would rinse my mouth with salt water.....hoping to ward off the mouth sores.



    Slept a lot yesterday, but think it was mostly because I had emotionally exhausted myself leading up to this event. Had to go back for my Neulasta shot....more drama from the "needle-phobia" queen! Also had to get additional blood taken from my port (yes even more crying!) as they are trying to determine why my RBC is so low since I'm not iron deficient.



    Rest of day pretty uneventful. Went to MIL 70th birthday cookout. Was a little paranoid about being around so many other people so soon after starting chemo. Met two other BCS (12 years & 2 years) they looked great and had lots of positive input to share :-). Will see what day 3 has in store for me.....hopefully no SE, as I wish for each of my new found sisters on this journey with me.

    Stay prayerful, hopeful & blessed....Yvette
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  • vtellen
    vtellen Member Posts: 345
    edited July 2011

    Oh Yvette! I loved reading your post! I cried throughout my biopsy result meeting. I cried in the surgeon's waiting room. Cried walking down the hall at my first onco visit (my poor fiance had to sort of push me along) And will no doubt cry on weds. as I get my first chemo. When I'm not crying, though, I feel quite brave and stalwart. Ellen, the tough little soldier going into battle.... Not! And, thanks for giving the details about the procedure. I'm curious about the coldcap use. When I asked my head onco nurse about it, she really dissed it. Also, had read about icing fingertips (w/ taxotere), she dissed that,too.

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  • Leighsa
    Leighsa Member Posts: 63
    edited July 2011

    Thank for sharing Yvette-you are so brave!

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited July 2011

    Yvette.... Thanks for sharing, it definitely helped me.... And I wish I could give you a real hug as I read about all your emotions!!! I could probably close my eyes and feel them with you....



    Ok, as my treatment will be looming this month, here's a couple of questions I have running through my mind today.....figure who better to ask than my BC sisters!



    The Muga scan.....do the inject anything prior? Dyes? Can it go thru our port? Do I have to lay flat on my back and how long is the test? I don't think I can lay flat for long....stll uncomfortable with TE's.



    Treatment....can you FEEL the drugs going in and running thru your veins? This is a feeling I have panic attacks over, it really is unsettling to me. When I was in the hospital with the BMX and they would "flush" my IV it would make me lightheaded. Not sure I can sit there and FEEL that over and over without a panic attack? I'm weird, I know....



    I think that's it for current mind racing questions.... That and my researching taxotere is NOT helping my anxieties of starting treatment.

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  • michelleo13
    michelleo13 Member Posts: 342
    edited July 2011

    Yvette, thanks for sharing your first chemo experience. Glad to hear no SE yet. Hope that continues.

    Musicalmom, I can so relate to how overwhelming all the reading is. My MO also gave me a DVD to watch which shows the whole experience and reviews everything that's in the reading material. It helped things to sink in a bit!

    Getting my hair cut short this week in preparation for first chemo on Aug 8.  Bye Bye curls! Frown

    Found out my insurance covers $250 for a wig so that's on my to do list this week too! I ordered some scarves and a swim cap from headcovers.com. There are so many to choose from it was a bit overwhelming!

    When I saw the MO on Friday for the first time, she commented that DH and I are both very calm about all this - I guess she's not used to that. Honestly, I just want to get on with things and get it over with. Most of the time, I'm so beyond crying and feeling frustrated. It is what it is and I can't change it. I do have my moments though - usually when I think about my 2 daughters and what this means for them, both now and for their future health.

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  • rochelleanderson
    rochelleanderson Member Posts: 33
    edited July 2011

    Looks like you'll be starting chemo pretty soon now and the others on this topic! I've just been diagnosed a few weeks ago and will be starting chemo on the 8th and also radiation on the 3rd, feeling anxious.

     And to Yvette... thanks for posting your experience, I was glad to read it. Especially about the numbing cream for your port... I'll definitely want it and wouldn't have thought of it.

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  • musicalmom
    musicalmom Member Posts: 78
    edited July 2011

    Are any of you contact lens wearers? I heard some chemo drugs mess up your eyes. Yesterday I read I might not be able to tolerate wearing the lenses and will have to wear glasses. ugh!

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  • musicalmom
    musicalmom Member Posts: 78
    edited July 2011

    Yvette thanks for sharing. It was helpful to hear about your experience and it must seem surreal as you are going through it. I felt that way as I went from test to test to test. I hope things improve this week for you and the SE are minimal.

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  • 46MD
    46MD Member Posts: 25
    edited July 2011

    Hi everyone. Its so great being able to read everyone's stories/worries/questions/inspiration. I guess I'll be more up on the lingo when I get more info from my chemo doc. I have a 2nd meeting w/him Aug 1st, meeting w/port consult Aug 4th. Sounds crazy, but hopefully I don't have to wait too long. For as angry/apprehensive I am about having to go thru chemo, If I'm gonna do it, I want to get it started. The sooner I start, the sooner I will be done! Yes, I also have the cold sensation when I drink cold fluids. Verrrry strange. And it makes you think/realize, literally whatever you drink flows thru you. For you teachers out there, wow....you are going to have to be careful in your work environment. According to my Dr. literature about immune system vulnerability, you will be in a prime environment for getting sick. Be careful!! Lets hope we all are 'exceptions to the rule' as far as getting sick. I enjoy all of your comments, keep them coming :)

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  • beachglass
    beachglass Member Posts: 2
    edited July 2011

    I started my first treatment on July 27th.  Same thing. Dense dose.  It is now day 5 and I am still fatigued and not hungry. Is this normal?

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  • 46MD
    46MD Member Posts: 25
    edited August 2011

    musicalmom, I'm also a lense wearer. Is it just during chemo that you/we might not tolerate lenses, or do they mean possibly from now on?

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  • roxessence
    roxessence Member Posts: 12
    edited August 2011

    hello, hello everyone!! 

    i've been quietly reading/absorbing everyone's questions/answers/inspiring stories for awhile now.  i find myself so caught up in the reading that time just gets away & there's not even a minute to share!   now...it doesn't matter that i'm writing at 11:11 pm on a sunday w/work waiting in the a.m.

    it's August-eve.  no more dragging the feet.  this is the month where i learn some Real humility.  *facepalm* 

    in percentages, i'm 85% ready for the port insertion scheduled for this thursday - already convinced myself that it's a necessary evil, given my teeny, rolley, valvey veins. =:-{   

    ACx4 is scheduled to begin on the 11th.   yeah.  my heart is still yelling "NOOOOOOOooo ooooOOOOOOOOOO"  to that idea.  .........we'll get there.

    can i come w/you chicas??  

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Hi 46MD, beachglass and roxessence!! Welcome, welcome and welcome....



    46md...I agree, the sooner I get this rolling the sooner I'm past the 18 weeks of chemo....but I still wish I could go run and hide!! We're all going to get through this!!!! Together...



    Beach....maybe someone who's already a treatment in will pop in to answer that, I'm not sure....but I hope you are able to eat something soon!!!!



    Roxessence....if it helps I'm having tons of anxiety of my looming chemo and hair loss. :( I'm more terrified of this phase than my BMX I had in June. I just keep telling myself I can get through this.... And next year is just around the corner!!! One day at a time right? :)

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  • musicalmom
    musicalmom Member Posts: 78
    edited August 2011

    46 MD

    Here is what I read...

    Chemo affects your eyes because the chemo drugs pass through your tear ducts. They can cause dry eye syndrome, watery itchy eyes, or conjunctivitis.



    If you wear contacts and develop these conditions you may be more comfortable wearing glasses so make sure your prescription is current.



    It can also make you sensitive to light so wear sunglasses.



    I really hope I don't get this SE.

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  • Madismommy719
    Madismommy719 Member Posts: 781
    edited August 2011

    Don't you feel like somebody is going to throw all our side effects in a big bowl and pick like bingo.... It's like none of us know which to prepare for, what to expect, etc....

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  • Ybrooker1
    Ybrooker1 Member Posts: 41
    edited August 2011

    Hi Beach, I received my first infusion (AC) on 7/28 and eat, only cause I needed to take my meds. Still pretty tired, but chalking most of that up to the fact that I was emotionally drained before going in. Just starting to get a bit of energy back today. I was able to shower and make it to my sitting room instead of back to the bed! I am a little hungry now, so hubby making me some oatmeal, toast, banana, and juice. Hang in there ;-). 1 down......7 more to go!!!!!

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  • michelleo13
    michelleo13 Member Posts: 342
    edited August 2011

    Roxessence, Welcome! I'm starting A/C x 4 on the 8th so I'll be a few days ahead of you. I'll try to on here about my experience, although it seems the S/E are different for everyone.

    Madismommy, love the bingo connection. You are so right. I go back and forth between thinking "Oh this won't be bad at all" to "Oh my gosh, it's going to be hell"! 

    Deep breathing...one day (hour, minute, second) at a time!!!

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  • Damaris51270
    Damaris51270 Member Posts: 16
    edited August 2011

    THANKS MITCHELLE, JUST HAD CHEMO LAST THURSDAY FEELING LIKE CR-P NEEDED THOSE WORDS. THANK YOU.

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  • Ybrooker1
    Ybrooker1 Member Posts: 41
    edited August 2011

    Damaris, plenty of fluids seem to be helping me....hope it helps you too

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  • edoyrest
    edoyrest Member Posts: 55
    edited August 2011

    Thanks musicalmom - I will take all the prayers you can send up!  Need peace of mind and serenity right about now.  Nerves are over the top. 

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  • edoyrest
    edoyrest Member Posts: 55
    edited August 2011

    Madismommy - I feel like someone is turning me inside out!  My first chemo is in 2 days!!  I too want to run and hide!

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  • MargieC
    MargieC Member Posts: 394
    edited August 2011

    Hi Ladies

    I am finishing up chemo this month (TCH x 6) Aug 8 and 29 are my last two.

    I wanted to pop in and wish you all luck and hope you have min SE.  I found that light exercise every day helps a lot with the SE.  One thing I learned was to be careful with the constipation and deherea (my worst SE).  Listen to your body and rest when you need it.  Drink lots of water - you kidney needs it to flush the toxin out.

    If I can be of help to any of you feel free to send me a private message.

    Good luck...  Margie

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  • rochelleanderson
    rochelleanderson Member Posts: 33
    edited August 2011

    Margie,

    Thanks so much for the tips, something I know will be helpful for me. I hope you breeze right through the last two, well done getting this far now!

    Rochelle 

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  • musicalmom
    musicalmom Member Posts: 78
    edited August 2011

    Eileen prayers for peace and rest are going up as we speak. Remember to breathe and hugs are coming to you from all of us here. Keep me posted



    Margie

    How did you get the other info about your treatment to print in the gray area at the end of your messages that also shows your diagnosis? So glad you are wrapping it up this month. Thanks for the tips.

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  • vtellen
    vtellen Member Posts: 345
    edited August 2011

    OK. So, my scarves came from Headcovers! They're pretty cute, and I had a good laugh attempting to tie them in arty ways around my head. Ha! I better get a wig......maybe. Edoyrest, do you have any ativan type stuff? I am taking it at night to sleep (.5mg? 1/2 of the tiny pill)  and it lingers throughout the day. Might help if you are really tense. Keep repeating: "I will be OK" That helps,too. My emotions are all over the place, but I know the fear well.

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  • summergirl1
    summergirl1 Member Posts: 182
    edited August 2011

    Hi everyone I start 6 rounds of TC followed by radiation x 25 and tamoifen for 5yrs on August 18th, I am 5 weeks past right mastectomy with a tissue expander (for ILC, HER- ER+ 5cm tumor)  , surgery went well but still have some discomfort as I had axillary node disection also .I have to admit I am actually terrified at the moment as the chemo is getting closer, I dont know anyone personally who has BC or gone through this so I was so happy to find this site, I have a wonderful family and husband but they just DONT understand what I am going through , I am really scared about losing my hair too, cant even imagine how I will feel when this happens , I was very upbeat until last few days and am now starting to freak, I wish everyone well on their TX's and hope to keep in touch as we go through this battle together .

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  • summergirl1
    summergirl1 Member Posts: 182
    edited August 2011

    Hi robo47, I agree the SE's sound terrible and scare me to death but hoping we are all lucky and get through with minimal ones, I asked my Oncoligist about coldcap which I had read about , he didnt seem to know much about it , I live in Ireland and I dont think they use it much here , I was hoping I could try it but I guess not , I would do anything I can to keep my hair as I think this will be the hardest thing of all , 

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