March 2012 chemo

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  • Muscles
    Muscles Member Posts: 16
    edited March 2012

    BRAX

    I hope so.

     Ladyfigheter

    Glad your port surgery was easy.

    MARCHERS:

    I may have to join he April crew as my lung collapse from port surgery has set me back big time. Also found out today afer all the additional tests, I was denied the clinical Herceptin trial for being triple neg.  BUT on a positive note found out today that I am NOT BRAC Positive! So happy for my family! Just trying to stay out of the hospital with this collapsed lung as 4 days with a chest tube was enough in the hosp.  One day at a time.

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  • shera
    shera Member Posts: 184
    edited March 2012

    Leftboob and love - my hair as well... big fleshy forehead and stubble on the rest. I look more like my Italian dad than I ever imagined! I want it to all fall out... I might cheat and shave after my WBC count is up in the 3rd week. Would that be bad?  I've been using coconut oil on my scalp too... but thinking of trying some of the castor oil I have. Olive oil would probably be good too. My experience with OO, is that it doesn't soak in as quickly as Castor or Coconut.  

    I hadn't thought of using coconut oil on the lady parts.. thanks for the tip. It's awesome for face and as a substitute for butter on your popcorn. 

    For those of you dealing with Neulasta pain... I had it something fierce after tx#1, kicked in day 3 and lasted through day 11 (not at highest intensity the entire time..found relief in some afternoons but evenings were awful).   My MO's assistant explained that I needed to stay ahead of the pain. She  explained that once you're in deep, you need twice as much because you're playing catch-up. She explained how the pain-centers in the brain work. She also said of Percocet (    Oxycodone and Acetaminophen), that the Oxycodone won't hurt in large amounts, it's the Acetaminophen that you have to watch out for, and to stay at or below 10 per day. I was taking half that at the worst. 

    I just had tx#2 on Wed. Took 1 Claritin and 400mg ibuprofen the day prior to infusion and day of, and again prior to Neulasta shot next day. Will continue this for a few days. This time, was given a half dose of Neulasta. Tomorrow is day 3.. I'll let you know how/if this minimizes the pain.

    Thinking about those of you having hard times with SEs. Katy and Muscles... hope you bounce back soon. To anyone else... I am trying to keep track of your names.. its hard to go back and look from my kindle fire-- but I read all your posts and am sending out prayers and positive vibes to you all. So far, day 3 of tx#2 -- things are seeming much easier this time. I didn't think I was going to survive Tx#1. But it gets better. Hang in there!


    Back to hair - in the left picture, that hair is attached to my head (this is after I cut it short and after it first began shedding slightly on day 15 ... so not exactly stylin). On the right, I'm bald under the hat, and that's a hair halo I made with my own hair. If anyones interested in how I did it... let me know. Took me 3 attempts and about 6 hours to get it right. I'm sportin some beanies and turbins too, for the comfort...but its nice to go out looking like myself when I want to. 

     

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  • shera
    shera Member Posts: 184
    edited March 2012

    Interesting note on hair loss, a friend of mine that completed the dose dense AC - T a few months ago, said her hair fell out during the AC and began growing back during the T. 

    I wonder if we can then assume that the culprit is Cytoxin? 

    Sounds like good news for those of you on the AC - T regiment. Maybe your hair will start growing back during the T, rather than after. 

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  • onvacation
    onvacation Member Posts: 1,344
    edited March 2012

    good morning ladies!  My bloating seems a bit better today and so far not constipated!  WOOHOO!  I go in this morning for my shot and then I will head to work.  

    Here's to everyone having minimum SE today!

    Kim 

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  • tc9876
    tc9876 Member Posts: 136
    edited March 2012

    Good morning Ladies...so many of you.

    I finished #2 of 6 TCH yesterday.  All went well except for a minor mishap with the cold cap machine where it stopped working for about 20 minutes.  I'm told I shouldn't suffer too much behind it but I will be watching.  I go for my Neulasta shot in about an hour.  I have been on L-Glutamine (10mg) daily and I took my Claritin last night.  I also have 4 steroid pills which I take 2 of everyday.  Took that this morning.  I had a stool softener last night and I took another one this morning.  Last tx, I suffered from constipation.  I'm hoping not to have that same problem this time.  The steroids don't give me the energy that others mentioned.  I went to be on time and woke up a little later this morning than normal.  Right now, I feed pretty good though.  Praying it lasts.

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  • ladyfighter
    ladyfighter Member Posts: 184
    edited March 2012

    #1 - 2nd day, feeling really good! slept through night, my port area seems to be healing well. I took anti nausea med last night and puts me to sleep! I took clartin last night. I am going for my neulasta shot in an hour. Nervous about that! 

    tc9876 - L-Glutamine, what does this do for? I would do anything to keep SE down! I am dreading next few days but I have to stop beating my self up, just live in the moment!

     Hello new comers. you have came the right place. this march 2012 chemo is my support group as i dont have support group anywhere. this is my life-line! 

    Shera, you look great! I am going to do hats, etc before the wig i have decided.

     Have a great day! 

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  • CAYH
    CAYH Member Posts: 99
    edited March 2012

    shera - you are so clever!  I'd thought about maybe using my own hair to somehow attach to a cap since it's shoulder length now & I'd planned on having it buzzed around the 2 week stage - please do share the way you figured out best to do that?!  Note that castor oil is a somewhat drying oil so the coconut oil may be the better choice - I use it for SO many things!

    Also on the subject of buzzing before it falls out - had my 1st visit to look for wigs yesterday & found a wonderful little shop that has specialized in hair loss care since '92.  The owner, a kind, compassionate man took me in without an appt to show me around the private consultation rooms & explain the differences in wig manufacturing.  He had a lot of good advice & did caution against my plan of buzzing my head before it fell out simply because of how tender one's scalp usually feels at the fallout stage.  He suggested getting it cut real short instead - did anyone here buzz before fallout?  Any problems with discomfort?  I'm not looking forward to the fallout & really wanted to avoid it as much as possible, hence the buzzcut beforehand...I have an appt for a "real" consultation there today.  They carry non-toxic cosmetics, skin & hair care & even some health food products as well as an onsite yoga studio - the complete package - "Transitions" I love this place already!

    I'll be giving myself Neupogen injections (Neulasta is time released - this is made by same manufacturer but is not so must be injected on daily basis for however long it's needed for WBC).  This is not a problem for me since our youngest son has been insulin dependant for past 16 years - he will be my coach! 

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  • hopeful123
    hopeful123 Member Posts: 191
    edited March 2012

    I have managed to read about half the posts. It is so useful to hear all your experiences. Nervous about next week. Yesterday I got really good news my scans were all clear so it looks like I am Stage I. I was so nervous as I am Her2 positive and grade 3, and i have heard of cases where eventhough they were node negative they found mets. I broke down when they told me this.

    Just been getting ready with wig, caps etc. I have long hair so today I get it cut shoulder length to match the wig. I have a 3 year old and 9 year old who both think my wig is cool. Have a feeling in the end I am probably going to stick with a cap or scarves. Plan to have a blast this weekend with the kids as I know it may be a while before I can do this. Hope everyone has a good weekend with minimal SE's.

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  • FightingforA
    FightingforA Member Posts: 62
    edited March 2012

    Amymomto5~ I'm still struggling with some side effects. I still have a lot of nausea (they won't change my anti-nausea med until my appointment on the 4th), diarrhea, I still feel tired, and I started getting some sores in my throat. How about you?

    cmcclean~ I run to the bathroom ALL DAY. I'm begininning to think that I need to just set up my office in the bathroom.

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited March 2012

    Shera

    Love that you did your own hair halo!!  The hats are great too.  Not sure if you said if you tried Clariton or not.  I had a major improvment in pain from the Neulasta shot TX#2 vs TX#1.   LOL, yes I too now look like my Dad more that ever.  I'm happy to hear that taking so many Ocycodone won't send us to the local drug dealer after were done!  I'm paranoid about becoming addicted to them.  Have had friends that did and it freaks me out.  They must have been taking Oxycontin I'm thinking.  That stuff is epidemic everywhere, very scary.

    tc9876

    Isn't it weird how we all have such different reactions to different meds.  The steroids make me feel like a  hamster on a wheel.  The only saving grace for me is getting stuff done around the house in anticipation of my usually 2 day crash on days 3 and 4.  So I do housework, shop and cook meals ahead of time.

    Muscles

    Yay for not testing positive for BRAC!!  That must be such a releif.  Now if you could just get over the whole collapsed lung issue, get through TX and get back to retreiving that rocking bod.  I'm turning 50 this year as well and you have inspired me to do better!!

    CAHY

    Transitions sounds like an awesome place, talk about 1 stop shop.  Re the hair buzz thing.  My scalp was way more sore prior to buzzing it.  I don't know if it was the weight of my hair, it was only shoulder length not super long but having it buzzed  aleviated it for me anyway.  If I rub the hair against the grain now its somewhat sore but I figure that part of the stubble must be ready to give way.

    If you're already giving your son a shot you'll have zero difficulty with the Neupengen injections.

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  • journey4life
    journey4life Member Posts: 517
    edited March 2012

    I'm having a "goodbye hair" get together (pot luck) with a family member and a couple of friends on Tuesday. I plan to buzz my hair to a "4" in anticipation of losing it. Today is Tx1 D11 for me...

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  • Sissydi
    Sissydi Member Posts: 516
    edited March 2012

    Shera, you look awesome! Love your hats! I wish I would have thought of that before I cut my hair; I had plenty. Do you mind if I ask how you attached the halo to your hat? Did you use Velcro?

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  • Love74
    Love74 Member Posts: 175
    edited March 2012

    My head also felt better after the buzz.  I have the same feeling as MLB when I rub it against the grain.  Its mostly gone now but enough still there to make me wish I was bald...looks creepy!!  I'm a week away from my third treatment...I thought it would be baby-bum smooth by now.

    nsmolen - try immodium - just half a tablet at a time so it doesn't push you back the other way.  I had that issue with my first treatment but not my second.  Just a little bit constipated the first couple of days this time.

    My eyes started watering yesterday...and my eye lids are a little puffy like I've been crying.  I know its a SE of taxotere but not sure what I can do to stop it.  Any suggestions? 

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited March 2012

    Love74

    We're on the same schedule.  My 3rd TX is next Friday, have 4 in all.  Ahhh, light at the end of the tunnel.  I notice your're having 6 though.  Did the MO indicate why?  I assume you're on the same cocktail with your DX.  I am getting TCH then H for a year.

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  • Amymomto5
    Amymomto5 Member Posts: 73
    edited March 2012

    nsmolen - Do you have any magic mouthwash for your throat sores?  It's supposed to help.  I have some but haven't needed it as my only mouth issue is a fuzzy/thick-feeling tongue.

    shera - love the hat!  I actually kept my 3 yr old's hair from last haircut and want to try that.  Can you post instructions or PM them to me?  You totally look normal in that 2nd photo!

    myleftboob - 50!? No way, you don't look anywhere near 50.  I might need some skin care tips from you!

    My benadryl wore off in the night and rash came raging back all over my back and sides.  Apparently the steroids (2 decadron shots, plus prednisone pills) don't help, just benadryl!  I've had 4 major breakouts in less than 40 hrs.  Have a call in to onc.  I am hoping to be referred to an allergy specialist, as my onc doesn't know what to think of this!   And of course we're going into a weekend! 

    Hope all of you who started this week and those with 2nd/3rd treatments are doing well today! 

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  • Amymomto5
    Amymomto5 Member Posts: 73
    edited March 2012

    love - try benadryl, as that sounds like a reaction.  It's the only thing helping me right now!

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  • fedfan
    fedfan Member Posts: 44
    edited March 2012

    I have an appointment for the "shave" at 2:00 this afternoon. Magnolia's, the salon at Moffitt Cancer Center will shave patients for free. I got tired of all the hair falling out!

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  • tc9876
    tc9876 Member Posts: 136
    edited March 2012

    Ladyfighter:   I have read good things on the board about L-glutamine plus my integrative doctor suggested it to revent neuropathy/muscle pain from the taxotere.  So far, so good.

    Myleftboob: It is funny how people react differently.  However, I am normally an even keel person so I don't mind not having the big energy jump from steroids.

    Shera:  I had heard about halos but never knew what they were.  You look the same in the before and after pictures.  That's great as no one wants to look like they are falling apart during their treatment. I believe looking well makes one feel well.

    Hopeful:  Super happy to hear that your scans were clear.  Hopeful that all remains well.

    Muscles:  I went for gene testing as well.  I pray my results are negative as well. Are your lungs back right yet?

    Brax:  Prayers to my chemo buddy as you undergo your 2nd tx today. Ifeel better this go round compared to last.  I hope you do too.

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  • journey4life
    journey4life Member Posts: 517
    edited March 2012

    amy - what are the ingredients in the magic mouthwash? MO wrote a prescription for my mouth sores and apparently the pharmacy had a difficult time mixing the ingredients - something having to do with the inability to get tetracyclin. Hopefully, they'll have something "magic" by this evening!

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  • journey4life
    journey4life Member Posts: 517
    edited March 2012

    fedfan - how short are you going to go? After reading others' posts about scalp soreness, I'm reluctant to buzz too much!

    shera - wow, love the look! Unfortunately, my hair is already fairly short so I don't think I'll have anything to work with. After seeing your results, I may give it a try.

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  • Love74
    Love74 Member Posts: 175
    edited March 2012

    MLB - My lump was 1.9cm.  Because it was close to being a stage 2 lump he gave me the choice of TCHx4 or TCHx6.  The difference was about 2% less chance of recurrence with the 6 treatments.  Also...I had LVI...which might be another reason for the Onc suggesting 6.  I figured I was already going to be bald and feel like poo so why not go for six!!  After giving me the choice and the stats I didn't want to choose 4 then look back later and wish I had gone for more.  As much as I love chemo I really wish I was going to be finished in April instead of June!!  I have to do Herceptin til next Feb along with Tamoxifen...then I get to take a break from the Tamoxifen next spring and try to have some embryos implanted.  Once I have a baby then I go on the tamoxifen for just over 4 years.   

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  • Amymomto5
    Amymomto5 Member Posts: 73
    edited March 2012

    lisa - the ingredients in mine are benadryl, lidocaine (to numb) and nystatin, an antifungal.  I guess it is common to get thrush in the mouth after chemo.  This mouthwash is safe to swallow, so it helps the throat and stomach too.  Good luck!

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited March 2012

    Love74

    Makes total sense with LVI for sure.

    Amymomto5

    God love you, you made my day!  My avatar is about 2 years old mind you and I feel like I've aged about 10 years since DX.  So not into posting a newer pic right now anyway LOL!!  Hey 50 is not like it was years ago! 

    Since yesterday I've had some weird itching in my hands and now my feet!!  I thought the hands were a sign to by a lotto but I didn't win any thing LOL!  Now its my feet.  Off to the drugstore to pick up a few things so I'll add Benadryl to the list.  How annoying.

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  • journey4life
    journey4life Member Posts: 517
    edited March 2012

    Thanks, amy. Can't wait to see what my magic wash is made of.  I'm ready for some relief from the soreness.

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  • Masserz
    Masserz Member Posts: 92
    edited March 2012

    OMG if I have to blow my freakin nose one more time....arggghhh! Sorry...it's driving me crazy.



    I know others of you have had the same issue...my PA turned me on to this cool saline spray and that has really helped sooth my poor, abused sinuses so I thought I'd share. It's called Ayr Saline Nasal Mist. I find it easier then swabbing with Aquafor since I can just spray it up there and lightly sniff. It's also helpful to use during the night when I get up to use the bathroom. Today was the first day in a while that I didn't wake up with a painfully sore, dry nose. They also make a gel that you can put on the outside of your nostrils to keep them from getting sore from all the blowing and wiping. Unfortunately it hasn't stopped the running...



    If you had this SE before, can you tell me if it eventually goes away? It is really making me nuts.



    Kellymama and StillDaddysGirl welcome! StillDaddysGirl, do you mind sharing your drug cocktail? That helps us help you with SEs, etc since some have specific issues associate with them. Given how many of us there are, it's very likely someone else here is on the same regimen.

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited March 2012

    Mazzerz

    Yes I had the dry bloody nose thing too.  I was using a qtip with saline to get some relief after the 1s TX but this time I picked up a saline mist as well.  Just a generic one from the drug store but did it ever help alot.  I'm finding that the week before TX is when it feels the worst.  I haven't had to use it for the last couple of days come to think of it,  I think it will ease up after your done chemo but mist away during.

    Sorry I can't be more of a help with the mouth sore issue.  I've been lucky there.  I have used the Biotene mouth rinse at night but other than that just plain old soda water as a rinse during the day.  I've heard others using baking soda and water and even olive oil though.

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  • Love74
    Love74 Member Posts: 175
    edited March 2012

    Masserz - I am pretty much the same as MLB.  A little drippy today but otherwise not bad.  My first tx I had the bloody scabby thing going on...I would sneeze blood which was pretty gross.  Tx #2 is better for me.  Stuffy the first week, runny the second week but no blood.

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited March 2012

    Mazzerz

    I made a boo boo.  The worst week is the week AFTER TX not the week before, sorry.  Note to self read what you have typed!

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  • Masserz
    Masserz Member Posts: 92
    edited March 2012

    Thank you so much! I hope mine follows the same pattern because if I have to blow my nose every two minutes through this whole thing I'll lose it. I've also had the bloody sneeze fun. And a couple of days ago as I was drying my face after the shower the towel came away with a smear of blood. Really nice. The PA said he'll send me to an otolaryngologist if the bleeding keeps up, but it seems to be happening less with the saline spray. Myleftboob, I'm cracking up because I am in the week before my second treatment and it's the worst right now. But it's still nice to know it will come and go and may not always be this bad.



    About the clip vs buzz decision, I think it's tough, but I can tell you my personal experience as the fastest balding chemo patient on record, my scalp feels better the less hair I have. It hurt like crazy after the #4 clipping, a little less when I went down to a #2 and way less after I rubbed most of it off in the shower. I am almost completely bald already...just a couple of sparse patches hanging in there and some strays all over my scalp. The patches are really the only places that still hurt and only when they are rubbed or I'm wearing a cap. DH is going to shave my head for me tonight in hopes of making those spots more comfortable. I figured he's a better person to do it since he can see my head and he has lots of shaving experience. Unlike a lot of you, the hair right in front (sort of my widows peak) is the main hanger on and of course that's where hats and scarfs rub the most so it's gotta go. Besides, I look like Squiggy from Lavern & Shirley. : D

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  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2012

    trying to get caught up - nsmolen and triplem67, glad others are in the neoadjuvant boat with me.

    munnibunny - wow, such a long time yesterday.  Yeah, my veins are crap too.  The port is the best.thing.ever. IMO. When I had my chemo Monday, it was freaky for me when they injected the "red stuff" - seemed like there should be a skull and crossbones all over the syringe injecting it just because of the way people talk about it. :)

    Masserz - mine were achy pains...just like "my skin hurt" I kept telling DH.  That pain has gone away for the most part.  And "awwww" on your son...how sweet.  I keep waiting for this not having to shave my pits thing.  Since I had such issues/infection from my SNB site, I don't want to use a regular razor on that side (plus it still feels numb/sore) but I figure why buy an electric razor at this late date...I will just wait it out ;)

    Januaryice, kellymama,  stilldaddy'sgirl, and others I may have missed welcome.

    Ladyfighter - glad your first TX went  ok. I assume you have had your shot by now.  My MO office does the belly as well...they don't do any fluids or anything unless they think you need them and I didn't at the time.  Like Amy said, the shot itself burned with my experience...for a good half hour -  nothing unbearable but enough that you noticed.  I don't know whether the Claritin did any good for me or not.  I never got the unbearable bone pain but I got the allover aches and pain above so who knows...  

    Shera - adorable hair/hat pic...

    Katy - have you updated and I missed it - if not, thinking of you and hope you are doing better.

    I guess I am not having the constipation issues everyone has.  I had the opposite issue a couple of times so I stopped with the stool softener.  Honestly, there is little to nothing for it to soften, I am having to force myself to eat.  I did have the icky bloated feeling those first few days though.  Almost like I was holding my breath and not breathing deeply enough. It was weird.

    Still fighting the nausea.  Thought I was feeling ok and got up to take a shower and got super nauseated - blah.  Still taking meds for that.  Starting to have the "metallic" taste issue and things just tasting wierd.  Nothing sounds good.  I am a picky eater in the best of circumstances and I cannot think of a thing that I want to eat.

    Starting to dread the hair thing - I still have over a week to go but...I thought I was okay with it, I have always had a hate/hate relationship with my finicky hair but the closer it gets, the more I realize it is going to be emotional.  I had heard the same thing about not buzzing it straight away but I guess it just depends on the person.  

    About out of room to type so I will shut up now - but Masserz - lol on the Squiggy comment!

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