January 2013 chemo group

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    Julesdenver- Ice chips and take L-Lysine twice daily. it prevents mouth sores and cold sores. If you do get one it will shorten the duration. If they don't want you to use ice chips. Stop and get a Slurpee from 7-11 or a shake or bring an ice water with you.

    Cancernoway- I have a wig and only plan on wearing it for work. I don't want to wear it at all but I am a bartender. that would be weird. Go and get one. Get a good one. especially if your insurance will cover it.

    Good luck to those going to the bar tomorrow and hoping for minimal SEs for all of you in the battle this tx. Fight the good fight Bellas!

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  • hope49
    hope49 Member Posts: 370
    edited February 2013

    Cancernoway...the runny nose may be due to loss of nose hairs from what I've read...who knew they were so important?



    Chgogemini, my steroids are for the 3 days after, 4mg 2X a day of dexamethasomething....I'm sure there are different approaches depending on your MO. I will say I never get the steroid high others reported...been waiting 6 weeks to clean my closet, but no energy rush yet...



    Sheryl, thanks for the Tums tip...doing it right now since my 2 side dishes tonite were The Doritos and Fritos...must a least count as corn, I figure! Your dinner sounded yummy, too.



    I love ending my day with you all...it feels like an ongoing slumber party!



    Sweet dreams...

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  • cancernoway
    cancernoway Member Posts: 90
    edited February 2013

    Oh yeah, I haven't had a period in 10 years because I took my birth control all the time with no off week to control migraines. Well after diagnosis I was told to never take bc again so I stopped them 12/21/12. So after my first chemo treatment I started and it lasted 12 days but was really light. Just annoying. I'm sort of rooting for the menopause thing. I was told I had a 60% chance of going into it because of treatment. Well bring on the hot flashes. I'm ready.

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  • Watta
    Watta Member Posts: 22
    edited February 2013

    Day 7 after AC #2, not bouncing back as fast, energy level still low. Just wondering if anybody has had leg and ankle soreness...the day after tx I woke up with the whole back of my calf sore, like I'd had a huge charley horse in the night, but I hadn't. It's still hurting, and my ankles have joined my calf in aching.



    I'm also having rads after this, last AC on March 13 and starting rads first week of April. My MO set it up, 30 of them to the entire right chest wall. I figure that not counting 10 years of hormones after rads, I'm about halfway done.



    This cold gray winter is not helping, but my acupuncturist sure is.



    Cheers, best wishes and minimal SE's to everyone. You are all such strong women.

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  • chgogemini
    chgogemini Member Posts: 73
    edited February 2013

    Cheers!!!!!

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

    3littleangles I'm so sorry for you not being able to tuck in your little one. Can you make a game of it and get the kiddos to laugh a bit about it rather than feeling scared? Like maybe try tickling them with your fuzzy head and making a big laugh fest??

    ziffy I am foregoing the wigs and only wearing head coverings - even to work. I warned them ahead of time and after finding I definitely didn't want to wear the wig I've never put it on.

    honeybair thanks for the info on the rads. So you didn't feel fatigued from it?

    chgogemini my MO said not to use nioxin, at least not until chemo is done. Because it works to stimulate growth and the chemo is causing your hair to not grow it will cause some issues.

    julesDenver my docs/nurses are the same. It was highly recommended that I NOT chew ice or to ice my nails. Was told that ice would keep the chemo at bay in that area and why would I want to do that when chemo should be accessible to all parts of my body. Again, one of those things where everyone is all over the board (or on the fence). Just not enough research has been done to prove there is or is not harm done by it. As for the rash, I seem to have it on the back of my head. I asked the MO about it yesterday and they say "acne" type symtoms are not uncommon during chemo. I don't know if that is what you are experiencing, and I wouldn't have called it acne because it itches. It was suggested to use a mild soap and anti-acne moisturizer or diaper rash cream. Yee-haw that sounds like fun!! Let me put diaper rash cream on the my red, itchy, bald head and sport that around.

    Love the "frog's fat ass" remark and I want that on my t-shirt too!

    Someone mention salty foods? Heck yeah! Thinking about hanging a salt lick in the kitchen.

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    T -3 hrs & counting to first AC...cue the scary music.  Let's get in there and get this crap over and done with.  I have a chemo bag the size of a garden shed packed (husband was like, "do you really think you'll NEED all that???") and i think i've covered off most contingencies.  Its the unknown and waiting that's such a drag.  I feel like an action figure- Super Cancer Fighting Shannon with kick-ass chemo action!  Bring it on...i just want this over & done with.

    But on a happy note i have managed NOT to catch the copmpany-wide cold everyone has (so far).  Woo hoo.  I've been banishing people to distant locales and my hands look like wrinklie old prunes from waaaaaaaayyyyy too much hand sanitizer.  I'm working from home afteer today's treatmet until next Wednesday...i hope the bug's through by then. 

    Ok...time to kick ass and start to put this behind me...here goes...   Shan

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  • martha323
    martha323 Member Posts: 79
    edited February 2013

    I watch this short film from time to time - I'm afraid of heights ... and other things right now...

    YouTube.com

    search: High Line Slack Line with Good Line by GoodLineFilms

    Peace to everyone this day -

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    Good luck today Shannon- Go kick some cancer!

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  • martha323
    martha323 Member Posts: 79
    edited February 2013

    Good good luck today, Shannon - you'll do well! Prayers ...

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    Cancernoway- I am looking forward to being rendered infertile from all the drugs! I am in total agreement... I had a Mirena IUD for 10 years and no periods for that long! It was a big plus for me. I had it removed before surgery on the advice of my drs. So, now I would welcome the infertility...

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

    Six words, Shannon: 

    May the force be with you.

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

    RE: periods - 

    Isn't there something called chemopause?  

    I haven't had a period since I was 43 (I'm 54 now) so I've kind of skimmed those topics/posts.

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

    Cancernoway~I've also had the runny nose since AC 2. I haven't lost any body hair so I'm not sure if its lack of nose hairs or just an SE, but its aggravating. It mostly happens when I stand up. I sometimes take a generic pill OTC that is for sinus pressure, runny nose, sneezing, and sinus pain. It doesn't have a decongestant. That would wire me so bad, I'd want to slap my granny.



    Watta~I had some foot pain after AC 3. It went away with my other SEs, but I didn't even think about it being a SE. Interesting to see If I have it with AC4 which I get tomorrow.



    Shannon~Good Luck with treatment. The first one wasn't too bad for me. I pray you have minimal SEs.



    Blessings

    Paula

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  • Sandra60
    Sandra60 Member Posts: 201
    edited February 2013

    Jules Denver - biotine also has a mouth spray . When I had bad sores round 1 I would spray every hour or so - it is formulated a little different from the mouthwash so you can swallow it . So u can keep in your purse or near u in a

    Inge chair and not have to get up to spit !



    Well off to round three the afternoon 2/7 . My se's were much more manageable his last time - will see this goes



    Has anyone heard of the prescription for mouth sores called Mu guard ? Has anyone tried it ?

    Yes jules - I did get a rash from the taxotere first round - took benedryl for a couple of days and was fine



    Wishing all you wonderful chemo friends a good day and minimal se's !!

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  • NHMom
    NHMom Member Posts: 9
    edited February 2013

    Hi Everyone - I finally got off my butt and posted all my information.  I haven't posted much, but have benefitted from every post by all of the beautiful, smart, determined and loving women posting here.  You make me feel better every day.

    I had my 3rd A/C treatment yesterday, so am enjoying a couple of days of feeling well, for now. 

    A couple of thoughts:  About sucking on ice - I was told to suck on popsicles as the adriamycyin push started.  I've done this each of the three times, and so far, so good. I understand that there are differing opinions on this, but I do enjoy being able to taste my food, and I'm assuming that this has something to do with it.  Plus, it's a little treat, and we'll take those when we can get them!

    I told my oncologist that I was constantly blowing my nose, and she said it's directly related to losing the cilia inside your nose that normally help keep things at bay.  My regular nose hair (that I can see) seems to be intact.

    Martha323 - I have to ask - is the 323 birthday related?   Just because that's my birthday, and I think it's the best date.  I like the three's for some reason!  And Martha323 and SherlB - my middle name is Jane, as was my Mom's, and my oldest daughter's.  I love nice, old-fashioned, simple names!  Just an aside....

    Hope49 - FWIW - my radiologist has said that radiation is indicated when there are 4 or more lymph nodes involved. That seems to be the general guideline, although I'm everyone situation is different. 

    Leeann - you said something about a radiation protocol.  I didn't see it posted, but if you have it, I would love to check it out.

    Bryona - I'm a little late with this - but absolutely loved the picture of you, post-buzz!  Beautiful lady.

    As I said, I haven't posted much, but have such gratitude for all of you - you've all been through so much, and handling it with such dignity, grace and humor!!  I am the "helpful" sort, and wish I had more to offer, but I'll keep trying to come up with things that haven't already been mentioned here!  Here's to health, persistence, peace, love and for those of you in the Northeast with a storm in sight - warmth and power and a good snow shovel!!   Oh, and did I mention?  The greatest of these is absolutely love.....  which abounds on this board.   Wishing minimal SE's to all. 

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

    Hi there NHMom - the radiation post is on the previous page but I'll post it here again.  

    The first two links include the complete list but in the search process I found some other posts that might be helpful.

    Many thanks to omaz (she posts on the Triple Positive thread) for being the guru of rads.

     

    http://community.breastcancer.org/forum/80/topic/764183?page=74#post_2463352

     

    http://community.breastcancer.org/forum/80/topic/764183?page=142#post_2810892

     

    http://community.breastcancer.org/forum/80/topic/764183?page=206#post_2972403

     

    http://community.breastcancer.org/forum/80/topic/764183?page=411#post_3297735

     

    http://community.breastcancer.org/forum/69/topic/578284?page=400#post_2730755

     

    http://community.breastcancer.org/forum/69/topic/578284?page=383#post_2686431

     

    I'll go ahead and copy and paste the contents of the first link here: 

    ---

    Courtesy of OMAZ: 

    -

    Here is my list of things for rads (my appt was first thing in the morning): 

    Aloe Vera 100% Gel 6 oz Gel by Fruit of the Earth (applied directly after treatment) from amazon

    Miaderm (applied 2-4 hours later)

    Faulding Essentials Vitamin E Cream 75g (from Australia) (applied 4-6 hours later)

    100% Pure Emu Oil (4oz) by Progressive Emu (applied 6-10pm) from amazon

    Aquaphor Healing Ointment by Eucerin (Walgreens or CVS) (applied before bed)

    (Rub the Aquaphor ointment vigorously between your palms to soften it up before applying)

    Basis Sensitive Skin Bar (Walgreens or CVS) (used for washing before treatment, rinse well, protecting breast from direct shower spray)

    I wore a very soft lightweight cotton tank top from Target each day under my bra.  If you have 'saggy' breasts wrap the tank top all the way over and under the breasts so there is no skin on skin contact where the breast ‘hangs down'.  the tank should also came all the way up to the base of the armpit area.  I also bought a bra that was larger and looser than normal.

    I used a VERY generous amount of lotion/oil/cream, smeared and gooped it all over the breast, underneath and under the armpit all the way to the back.  Especially made sure the nipple area was well coated.  The cotton tank top absorbed the extra so it didn't get on my bra.

    I would also suggest taking a picture of your fields when they draw on you so you know where to goop and make sure you cover all the areas.

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

    skimommi - i wonder if the "no cold anything" is a colorado thing? I would say this state is conservative, but i think that label went by the wayside with amendment 64 :)  My MO seems appalled at the idea of low-dose radiation (it's widely used in canada and europe according that internet thingy). We shall see if i go for the ice chips the next go-around...this nasty hive thing I've got going has taken my mind off any mouth issues for the moment :)

    shannon - good luck to you! Here's to minimal SE's. I cannot wait for your take on the "chemolounge" experience. Something tells me you are gonna have a lot of funny stuff to say about it!

    sandra60 - I'm pretty sure the rash is associated with the taxotere. I have never seen anything like it. At least 25% of my body was covered with red angry welts from head to toe. My MO told me to take benedryl (which i was already doing)...along with claritan and zantac. I thought it sounded pretty far fetched, but the itchiness is subsiding! My fingers are crossed it will go away without 'roids.

    I know you AC+T gals are being sent through the wringer with so little time to recover between treatments...but i am very envious when i see things like "my last ac treatment".  Congrats!  Personally, i'd rather just get it over with and move on.  I hear the T alone is much easier so I hope the second half is a walk in the park :)  Hang in there - you are almost done!

    I'm going to help increase the Biotene stock now...

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  • NHMom
    NHMom Member Posts: 9
    edited February 2013

    Hi Leeann - thanks for the re-post!  Now that I'm looking at it, I did see it, but it certainly doesn't hurt to read twice!

    I had one more thought regarding dry/bleeding noses.  I have had this issue, and my oncolgoist suggested over-the-counter saline GEL.  I have used it a couple of times and it has definitely helped.  

    Ciao!

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  • MTJulie
    MTJulie Member Posts: 63
    edited February 2013

    Hello January ladies. I am actually a December girl but have been reading on your January board for a while. You have a lively fun bunch and I feel like I know you all so thought I would jump in!

    I had tx 3 on jan 28th and it has taken me this long to come out of the chemo cave. For you that are earlier in your treatment, it seems like the third one is a little rougher than #2. The fog and exhaustion hit me the day after-no grace period before it hit- and has taken this long to start going away. I haven't had mouth sores. I am faithful about using the soda salt water rinse, but the fried taste buds is really a pain in the butt. I seem to search for something tasty but about the only thing that tastes good is grapefruit and yogurt.

    I did want to tell you all about the magnesium citrate supplement I take. A nurse recommended it to me after my surgery as a great thing for whatever ails you. It is called Calm and is a powder that you mix with water and is tasty. I have used it faithfully and it has really helped with constipation, which plagues a lot of us. It is a little more expensive than pills but I am a true believer after this round. You can get it at health food stores and I highly recommend it.

    I am full of admiration for all the bc warriors on here. You ladies are the bravest people I have ever met. I like the idea of everyone being at chemo camp. It's a lot more bearable knowing I am going through this with a whole lot of warrior women. My hat is off to you all. (not really though because my bald head is scaly and scabby and not a thing of beauty!)

    My last treatment is feb.18 and I am already dreading it. Then start thinking of radiation, which also scares me. I just don't want to end up with a permanent disability. Plus I will have to drive 4 hours daily round trip to do it, which is going to be difficult. Hubby is primed to do it though, and I think I can stay there sometimes but I will just see how it goes, I guess.

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    LADIES!  I return from the bar...and have to say, it was kind of a letdown.  All the hype and THAT'S FREAKING IT?  Really?  Sad.  My chemo room is a smallish L-shaped room with chairs jammed in everywhere and 3 beds for newbies....i got a newbie bed.  The decor is 1970's hospital yuck (a combo of baby-shit brown and i've-got-a-really-bad-flu, snot green) and the lighting?  Fluorescent...not flattering at all.  Yet again, the nurses keep telling me I'm not the only young(er) person in Ontario doing chemo but i have yet to see evidence of this...at all.  Except for the murse (yes- MURSE- man-nurse), there wasn't a dude there under 65...and some of them looked like they could have been drinking buddies with Moses.  Same on the ladies' side but more in the 65- 80 crowd...none of them looked older than the hills.  Only ONE lady was nice to me...she was a hoot- yucking it up every time she had to go pee...which was every 15 minutes or so...HER i liked.  Everyone else???  Giving the little blonde girl the stink-eye, big-time.  WHAT?  YOU SEE MY CHEMO.  ITS DRIPPING INTO MY ARM.  Cut me some slack grandpa.  I'm supposed to be here, too.  And hey...say hi to Methuselah for me.

    Now don't get me wrong...honestly, i have NO problem with people older than me.  None. People younger than me, another story.  I find little kids (read: people under 25ish?) annoying as hell as a general rule.  But the older folk i love.  I'm an historian by education and old people KNOW stuff, man.  But seemingly, they don't know 40 somethings who look younger (the nurse thought i was "what 28 or so???") can get cancer, too.  Suck it up grandpa...i'm here to stay.  Again, maybe they'll like me better when i'm bald.  Or maybe i have to roll that dude who brings around cookies & juice and get on their good side with treats and refreshing beverages.  I don't know- but i think i can take him...he looked pretty wobbly on his pins...7 MORE TREATMENTS TO GO...

    Treatment itself was unremarkable.  A was a drip- got a slight burning nostril/sinus headache but that only lasted about 15 minutes.  The red devil was a push and that was cool- no worries.  Get my Neulasta tomorrow...back to the disco lounge...and then my home nurses can do it after that.  Came home, ate lunch, swished with baking soda (they said no salt???  why???) and went pee.  Holy S***.  Pee was red in just over an hour.  Do i metabolize fast or was everyone that speedy?  Nurse said "red pee by dinnertime" (sounds like a bad western novel) but red pee in an hour was slightly unexpected.  Meh.  wipe it, flush it twice and move on...red pee i can handle.  More pills upcoming at dinner & bed and then i get to "play it by ear" as to whether i want to continue pills or no.  Decisions, decisions.  GREAT news- there is a big-ass, nasty snow storm heading our way and guess who doesn't have to shovel???  ME!!!!  i found another benefit to surgery/picc/chemo, i guess...and i'll take 'em where i can get 'em. 

    So ladies, let's keep the prize in sight...DEATH AND COMPLETE ERADICATION OF ALL CELLULAR INSURGENTS.  This has a purpose and a damned good one.  It's worth it.  Let's kick ass and chew bubblegum...and i am all out of bubblegum...and it makes my jaw sore so i don't really chew it, anyway...just sayin'...    xoxoxo  Shan

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  • hope49
    hope49 Member Posts: 370
    edited February 2013

    YEAH, Shannon, you made it!  Glad you are al done for the day and thank you for the colorful recap...I have to say I was looking forward to it! :)  Take it easy tonight and here's to minimal SEs for you!

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  • MandyNJ
    MandyNJ Member Posts: 73
    edited February 2013

    Oh Shannon, I just love ya!! I'm so glad it was anticlimactic for you. I'm hoping mine will be too.



    I just booked my son's 6th birthday party for the day before treatment #2. It's at a kids gym place. It just occurred to me that maybe I shouldn't go. What if I don't touch anyone or anything?



    I wrote out my daughter's valentines cards and sent them to school today and asked a friend to make my son's birthday cupcakes (wednesday, 2 days after tx1). My friends created a "meal train" website for me so meals are covered for me, just have to handle the kids. I've shopped for all the colace and biotene I could think of.



    I think I'm ready. Well, as ready as you can be for chemo.

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  • SherylB
    SherylB Member Posts: 450
    edited February 2013

    Mandy,

    The days right before your chemo are your strongest days according to my MO. I have other health issues and if I need something done the days just before chemo are when I am supposed to have things done.

    Ask you MO.

    Sheryl

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    Hey Manda...you'd look like a tool but what about a mask?  If you're really worried (and little kids ARE germ factories...so glad my boys are almost 13 and 15...not near as bad!), a mask (as long as you get the right one), might help a lot.  Gloves?  A HAZ-MAT suit?  You could be the bubble-girl of NJ!  But seriously, a mask might help?

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

    Shannon~I always pee red one time before I leave chemo. No more after that.



    I feel really blessed after hearing about your treatment center. I go to the Stephanie Spielman Comprehensive Breast Center in Columbus Ohio. It's an offshoot of OSU.



    I get treated in a private room in a brand new hospital bed. They bring snacks and drinks or Popsicles whenever you want them. The building was 2 years old last month.



    With my first AC, side effects didn't hit until day 6. I had the fog that day, and lost my tastebuds. Days 7-8 I peed 400 times. I thought I was getting a uti, but it was the steroids waving bye bye while sticking their tongues out at me. I also had aches and chills those 2 days. By day 8 I was back to normal. Chemo 2 was pretty much the same except that during my nadir period when immunity is low, I got a cold made much worse because my system was compromised.



    AC 3.... That's a different story! Kicked my butt and scrubbed the floors with me.



    I hope you have a much easier time than I did.



    Blessings

    Paula

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  • smethot
    smethot Member Posts: 161
    edited February 2013

    Paula- are you every 2 weeks or 3?  And how long did you have to take the steroid?  After my pill tonight, its optional for me, depending on how i feel...up to 3 days.  I'm getting a Neulasta shot the day after every chemo, too...hoping that helps with the cold situation.  Your treatment centre sounds awesome.  Mine is old and kinda shabby but hey, the drugs work!  They make me lose my hair and DESTROY CELLULAR INSURGENTS...and well, its free.  I guess i can't really whine too much when its free and a 5 minute drive from home.  makes it a wee bit more palatable.  Shan

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  • macyhen111
    macyhen111 Member Posts: 754
    edited February 2013

    Skigirl I have had 6 tx of taxol so far. I have not had any neulasta shots, I also still have all my hair. I have not had too many ses from the Taxol, and I feel great, just a little tired sometimes.

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  • Nicole503
    Nicole503 Member Posts: 295
    edited February 2013

    Hey Shannon ~

    Thanks for the fun post about your first dance with AC.  Like Paula, I generally have a red pee immediately after the infusion but I keep peeing pink for at least 24 hours.  I get the same nose congestion that you experienced.  I have found it to be a little more tolerable if my nurse slows down the Cytoxan and if I get a sudafed (the real kind) with my pre-meds.

    I just finished my 4th dance with AC and I am glad to be done.  Excuse my french, but it's a shitty dance partner.  I did not have a port so with each infusion both the nurse and I were always watching for any signs of burning that might indicate the Adriamycin was leaking out of the vein.  That could be very, very bad.  Fortunately my veins held up and I am now done with that worry!

    My experience has been a lot like Paula's ~ the side effects have gotten progressively worse with each infusion.  I really learned how to take care of myself with round 3 (say no to every obligation/"new opportunity" and rest, rest, rest.  Hydrate, hydrate, hydrate.  Call your MO's office when you BEGIN to feel a new kind of bad, don't wait until you are good and truly suffering ~ there is no need to go there if they have a medication that can help you).

    I'm glad you are on the AC carousel. Getting here is the hard part.  Now all you have to do is hang on for the ride.

    Wishing all of us (you, me, and Paula) a soft SE spiral.

    Best,

    Nicole

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  • hope49
    hope49 Member Posts: 370
    edited February 2013

    Nicole - congrats on finishing the 4 A/Cs - I know that's can be a rough combination.  I hope the Taxol is an easier experience for you.  

    Paula, your center sounds so nice - they should all be like that...it's a hard enough process to go through you'd think they could make it kind of homey or spa like...what's wrong with making the best of a bad situation?  My center is cramped and everyone is lined up against a back wall facing the nurses...so far I've been lucky enough to get one of the private rooms, but it's just more space, not any more amenities...with using the cold caps, we roll in with a lot of gear so it's just better to keep us sepaarate so I hope we continue to be lucky enough to find an open room for the madness...and I'm with Shannon - can we try to lighten the mood a little?  My team and I laugh as often as we can...I know it's serious business but it is what it is and why not make the best of it?  A cookie cart and TVs would certianly help! :)

    JulesDenver - how is your rash?  I have had issues with the Taxotere leaking out or something near my IV and have almost like a chemical burn on the skin which I'm told will heal in time, but it is compromising my ability to use my veins and I do not want a port...hoping with only 2 rounds left we can figure something out...it's a harsh drug for sure.  I can only hope it is attacking any stray bad cells with the same intensity!

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