Starting Chemo July 2013

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  • 2bluestars
    2bluestars Member Posts: 89
    edited August 2013

    Thanks everyone!  I really appreciate your time and effort answering my questions.

    I did forget to mention, my bs ultra-sounded my tumor the day prior to my 3rd chemo and it has shrank by 90%.  He did say even if it disappears entirely, I'll still need a full mx on that breast, lumpectomy isn't an option because my original tumor was so large.  I was kind of bummed by that.  He also said since my BRCA test was negative, I  don't need to remove the left breast.  I'm not sure what to do about that.  I thought TN has a higher risk of turning???  He would remove it at my request but not to do it to "save my life" since there is only .07% chance per year of the cancer recurring in the remaining breast.  Right now, I'm leaning toward a double. 

    I'm also not a candidate for immediate recon.  After surgery I'll need 6 weeks of radiation and then time to heal from that.  He said I can begin recon, if I choose that route about 6 months to a year after radiation.  So it sounds like I'll have plenty of time to learn about all the different kinds of procedures.

    I did have a nurse at the 3rd infusion who had a double mx and full recon with nipples recreated from the groin area.  She was willing to answer all my questions and even showed me her "breast".  I was so touched by her openness.  I was surprised at how different they look.  It was all I could do not to ask her if I could touch them.  Just curious how they feel compared to natural boobs.  :-)

    Hope everyone is feeling well and enjoying the weekend!

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  • Rambo50
    Rambo50 Member Posts: 140
    edited August 2013

    2bluestars, Yahoo for your tumor shrinkage!!! The mx sounds like a good idea to me just to reduce some fear of reoccurrence. I had mine prior to chemo (outpatient if you can believe it!) and will face another post-chemo due to BRCA positive. About the drain tubes - hubby was great at helping drain and measure output, showering (or NOT showering) was the worst part for me - though I got to sit in the shower, bulbs propped on my lap, and let warm water run over me a few days out ;-). Unlike the others, not to scare you, I DID feel my surgeon removing them - wasn't asked to take pain meds b/c wasn't sure they'd be removed that visit. Odd type of pain, and the second was worst than the first since I knew what to expect - but overall not TOO bad, and definitely short-lived and welcome pain - SO glad to get those darned things out ;-)



    Right now I'm experiencing the worst set of SEs yet: mouth sores so bad I'm having a hard time eating, hemerrhoids that my onco said are RELATED to the mouth sores (mucosa going through he system), and a wonderful yeast infection!!! So, I'm resting right now, trying to gear myself up to go with some girlfriends who've made arrangements for us to go do a group painting thing :):):). I WILL enjoy this - even if I have to sit on a donut pillow - lol.



    KTLe, so jealous about Michael McDonald!!! He was here in GA with Boz Scaggs recently too, and I couldn't convince DH we needed to go. Have fun, and wear a mask if you think you're risking an infection!!!



    In a minute I'm going to try to change my profile pic ;-)



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  • RealityCheck
    RealityCheck Member Posts: 57
    edited August 2013

    Happy Saturday Ladies!

    Hope all are doing a little better today, if not sending a hug of comfort and hope you feel better soon!

    Rambo - I feel your pain on the mouth sores. I've had them since first treatment. Used the magic mouthwash but had to get a prescription and that works a little better during the worst of it. My taste buds are shot. Food just does not appeal to me.

    NoCompromises - I agree we do need more postive. I am trying to surround myself with good things that make me happy and make me feel more like myself. I would like to come to the forums too and see good things. I know it's not possible all the time as we just need to vent and tell how we really feel, but when you feel good let it be known in the forums too. It may just brighten someones day and make them feel a little better through this process.

    Hugzz to all

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  • soriya123
    soriya123 Member Posts: 662
    edited August 2013

    2bluestars, your tumor only 2cm, so no option for lumpectomy? My tumor is 2.3cm my BS said I have an option lumpectomy (with radtion) or mactectomy (no radiation, unless 5 LN involved). I'm confused!!!



    I am still undecided btwn the two, since survival rate is the same. But like like Rambo said, mx reduce fear of reoccrence, so I kinda lean toward that too, but I don't like the pain n long recovery part.

    The rest of the ladies had infusion recently, I hope you feel better soon. :-)
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  • 2bluestars
    2bluestars Member Posts: 89
    edited August 2013

    Thanks Rambo!  I'm so sorry your are having those issues.  I hope you get some relief soon.  My mouth feels yucky, but no sores and my food still taste fine.  A couple of drink choices taste weird, like my cran prom juice and sweet tea.  I've been using Biotene daily.  Have you tried that?   I do have the same issues with my bottom and it's awful.  Woke up almost in tears at 3am.  This time it's my fault and not a se of chemo.  My MO's "cure" really does work, I just get a little less vigilant.  Wish I had a donut to sit on.  :-)

    Soriya, I actually had two tumors in my right breast they were very close to each other, just enough space to call them two.  Each was 2.5cm at the 9oclock position.  That was in the radiologist's report when they did the initial pre diagnosis ultra sound and again when she did the biopsy.   So when the bs measured, he rounded up I guess and used 6cm as his number and referred to them as one.  Just guessing, perhaps I should get better clarification from him.  :-)  I'm really leaning toward the double mx for my peace of mind.  I still have time to think about it. 

    Hugs to all!

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  • aaoaao
    aaoaao Member Posts: 593
    edited August 2013

    I agree that the hemmoroids are horrible.  I've been sitting on a pillow in the car and in the infusion chair.  I've also woke up many times crying due to pain in the rear and was sitting on ice packs too.  My gastro guy prescribed a cream with pain killer & a steriod to help and it does help a lot.  My roid has a blood clot in it so I have to see a surgeon to have it excised.  With all going on I didn't expect to have to have butt surgeryUndecided.  I'm taking ducolax and miralax daily and it helps with the constipation but unfortunately the roid won't go away on its own.  TMI, I know but hey lots of us are experiencing the same thing.  Other than the roid, fatigue and chemo brain I can't really complain.

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  • soriya123
    soriya123 Member Posts: 662
    edited August 2013

    2bluestars, ok now I understand, thanks.



    My chemo #3 is on Wednesday, I am not looking for it at all :-(



    Sometime I wish this is only a dream/nightmare!

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  • KTLe
    KTLe Member Posts: 22
    edited August 2013

    2bluestars-It's all about peace of mind. You need to do what let's you sleep at night. You can have bilat mast. or wait and do one later. Recon is an option for the rest of your life, if you're heading in that direction. I went for the minimal amount of surgery. I had left mast and right reduction, because I'd wanted a reduction for a long time. A part of me can't help but wonder if I should've taken them both off. Now that my breast is reduced, my mammogram is going to look entirely different, so a new cancer would probably be hard to see. I don't regret my choice at all. Just second guessing, a little. Ask yourself how you would feel with and without the bilat mast. I hope you find your answer. So many things we never thought we'd have to figure out, but hey, we're hereSmile

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  • LanaM
    LanaM Member Posts: 142
    edited August 2013

    Found this on Pinterest & had to share! I hope the link works. Lana

    when you feel like giving up...



    http://pinterest.com/pin/274860383481444687/





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  • GraceB1
    GraceB1 Member Posts: 213
    edited August 2013

    Had my third treatment yesterday and can say this was the easiest so far. I finally got rid of the vertigo on Wed. by doing a simple exercise to move the bones in my inner ear back the the right position. My port still won't draw blood back so got stuck again but at least they got it on the first try this time. Ended up getting a port study done before they would administer the chemo and they said everything looks OK. They have no idea why it's not working right. Not nearly as much nausea this time but still have the fatigue and blurry eyes. The onc said my tumor has shrunk in half and he is very pleased. I asked him about having a double or single mx and said he thought a double was too agressive at this point. The PS I saw last month said he would put a tissue expander in at the time of surgery but wouldn't do the deip flap reconstruction for a year because I'm having rads. At that time he can fix the damage the rads have done while doing the recon. He will also do a lift on the other breast to make them symetrical. I was really hoping it would get done all at once but I understand his reasoning. Onward and upwards. One more a/c and then on to taxotere.

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  • m1970
    m1970 Member Posts: 337
    edited August 2013

    I was feeling bad this morning, but took a walk and Fiorect for my headaches and ativs. For my quesy stomach and actually felt OK tonight so I went Contra dancing for 2 hours. It always makes me smile and I guessed it would make me feel better and it did. What I hate the most is not being able to do my normal activities. My hiking club is doing this fabulous backpacking trip this weekend, but I can't do anything like that or any serious hike. Dancing is easy because I can always leave when I run out of energy.



    It occurred to me tonight that it would be cool to get a temporary tattoo to cover my port scar for certain dresses. I try makeup but it looks like crap because it is keloided. I wonder if there are temporary tattoos that are nice..not just for kids. I'm thinking something round like a sun.

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  • aaoaao
    aaoaao Member Posts: 593
    edited August 2013

    Sometimes my port also doesn't want to give blood up either.  It was explained to me that they were designed more for infusion than withdrawal.  Sometimes blood forms at the end of the tube and makes a flap.  The flap opens when fluid goes in but gets sucked back up into the tube when suctioned for a blood test.  My ONC uses an injection called Cathflow into the port to remove the flap and then they can usually draw blood.

    The only temporary tattooing that I know of is Henna.  My sister went to an Indian wedding and the bride and her friends had their hands painted with henna in beautiful patterns.  They last for quite a long period (2-4 weeks) of time but aren't permanent. Just don't use black henna because it isn't safe.  One site that sells premade henna designs is:  http://hennamehndi.com/instant-henna-tattoos

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  • LanaM
    LanaM Member Posts: 142
    edited August 2013

    Good morning all! Hope everyone is doing well. As I lay awake this morning I kept repeating what I'm going to call "Lana's Top 10 for surviving cancer" in my head for some reason. I'm taking this as a sign I'm supposed to share with someone who is currently struggling. None of us asked for this disease. We all struggle and have good days and bad days. We are stronger than we think! We WILL get through this! I believe the following are all very important as we go through this journey in life! Here they are, not in any particular order:



    1) Listening to Dr.'s & nurses (and asking for help when needed)



    2) Taking all meds as prescribed AND nutritional supplements



    3) Keeping hydrated (drink plenty of water every day!)



    4) Exercise (even if that's just getting a good walk in each day)



    5) Eating healthy



    6) Adequate sleep/rest (listen to your body)



    7) Positive thinking! (The mind is a powerful tool)



    8) Humor (another powerful tool - we all need humor in our daily lives)



    9) Support of family & friends! (Including wonderful BB friends!) (don't be afraid to ask!)



    10) Faith in God (or our higher power) and prayer!



    Feel free to add to the list and share with others what has helped you! I also personally believe we need to go about our "normal" life as much as possible - helps keep our minds active and off of our problems! Sorry for the long post. WE ARE SURVIVORS! Lana

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  • angelanature
    angelanature Member Posts: 179
    edited August 2013

    Hi All,There's very fews things worse than roids,i totally feel for u Rambo,since my scary constipation issues last chemo ,I'm probably overdoing the meds to prevent it but there is nothing worse than being up in the middle of the night,pushing,sweating,crying unless u get a baby out of the deal.Marsha,henna tatoos r beautiful but be careful,i had a friend who was allergic and ended up with a permanent snake around her ankle because of the reaction.How's my fellow last dose red devil survivors? This last one for me wasn't as bad as #3 maybe psychologically knowing it's last one helped. Hang in there all,Angela

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  • Rambo50
    Rambo50 Member Posts: 140
    edited August 2013

    Angela and aaoaao,

    Have either of you gotten to the point with hemorrhoids where you can't even walk??? I've been up ALL night, crying b/c it hurts even being still! Told the onco on call yesterday the foam stuff I was prescribed was useless (before it got THIS bad). He suggested pain meds - took 1/2 Lortab yesterday afternoon but it did no good - didn't even fall asleep. Then, against DH's advice, went out with some good friends who'd orchestrated a get-together for me (one came from pretty far away, so I felt guilty canceling out), and came home literally unable to climb our stairs!!! I don't think it's anything we did - I sat on a pillow while we did our painting thing. BUT, I took another full Lortab at 11 pm - no help, no sleep; and another at 4 am - no help with pain, but got 2 hrs sleep. Don't know what to do!!??



    Lana,

    Thanks for the Pintrest link and words of advice :). I promise I'm trying to be positive, and most days I've been pretty good!!! Just not right now, and it's pretty much ticking me off ;-)

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  • LanaM
    LanaM Member Posts: 142
    edited August 2013

    Lynn, I feel so bad for you and the pain you are going through with the hemroids. Wish I could help in some way, or offer up some advice. I have internal hemroids, but thankfully (knock on wood!) they haven't been bothersome. Wish sometimes we could wave a magic wand and make things all better! Know that we're all thinking of you and hoping for relief for you soon. Hopefully the onco will figure out something soon! Hugs! :)

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  • Rambo50
    Rambo50 Member Posts: 140
    edited August 2013

    Thanks, Lana :)

    Had DH run to the drug store and get me a sitz bath. Sat for 20 minutes with warm water and Epsom salt - feel a tad better and am now going to take a nap!

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  • aaoaao
    aaoaao Member Posts: 593
    edited August 2013

    Lynn, my gastro recommended a sitz bath 2x a day for 20 minutes also.  He prescribe a cream (Lidocaine 3%-Hydrocortisone 0.5%), it works pretty good in reducing the roid and has a pain killer in it too.  My roid, like yours, was unbearable.  I'd get stabbing pains in the rear just laying down.  I literally had ice packs on 24/7 and was taking oral pain killers too.  Sometimes the pain was so severe I couldn't stop from crying and screaming.  There are many nerve endings in the anus so that's why roids..especially the external ones, are so painful.  Sometimes they resolve on their own and sometimes they don't.  Mine won't because it has a big blood clot inside it, so it has to be opened and drained.  Talk to either your MO or regular doctor to see if they can give you a referral to a gastro doctor.  He/she can tell you if it needs to be surgically removed or can be solved with meds.  At least you can get help to reduce it and the pain.  Best wishes for you.  I know how much this can disrupt your life.  Years ago I'd never would have imagine that a simple roid could make someone so miserable. I always thought that someone with a roid should just suck it up and get off their butt and it wouldn't be a problem.  I've learned how insensitive I really was.  Cancer does have that ability to teach us to have more empathy for others.

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  • JeriGrace
    JeriGrace Member Posts: 128
    edited August 2013

    Hey all,

    I have been keeping up with you all each day but unable to post because of a bout of depression. I do love the way everyone supports each other here. I feel fortunate to not have many of the problems you all are sharing - port issues, reconstruction, roids (ouch!). Hope that didn't come out in a mean way but I just need to remind myself to be thankful and that it could always be worse.



    The lack of energy gets discouraging. Feel like I'm not bouncing back as quickly this time and worried about the next two. I am supposed to go back to work this week for 5 days but I had a panic attack about it and have had trouble sleeping. This was my decision to try to work part time during treatments and right now I am really regretting it. But I feel guilty thinking about changing it because this was the agreement I had with my sub and I don't think she wants full-time. So as usual I am making decisions based on feeling guilty and worrying about everyone else. It seems that no matter how much everyone tells me to take care of myself I just can't change the person I am.



    Yesterday I fell off a step onto concrete and besides being covered in scrapes I can hardly move my arm. It seems like I did something to my shoulder when I fell. I got a call that my MO wants to see me tomorrow (don't know why, which is kinda freaking me out) so I will see what he thinks I should do. I just feel like a big mess!



    Thanks for listening to me vent. I hope someday soon I will be feeling better and can encourage someone else.

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  • Hannariggs
    Hannariggs Member Posts: 137
    edited August 2013

    Hi Jeri, 

        I think all of the things you are feeling are normal.  All of us have felt that way at one time or another.  We all will make it.  Tough as it may be at times.  We have to tell ourselves "yes, we can", and have faith knowing we will.  Today is a rough day for me too,  day 5 of round 4.  Hard to find the energy to make it to the restroom, but I know tomorrow is a new day and we are all here for a reason.  Not wanting to face another treatment but knowing there is 12 ahead of me.  Seems daughting but just look back on how far we have come already!  Each day brings us closer to the finishline...........God be with us all......

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  • angelanature
    angelanature Member Posts: 179
    edited August 2013

    Hi Rambo,mine never got that bad but sitz baths,lukewarm,would be my advice and avoiding sitting at any cost. I really feel for you,tomorrow i would get in to see a gastroenterologist,tell the receptionist how severe it is and that you're on chemo,you need to be seen asap. That's their expertise and your onco may be missing something. I know how u feel even being still,it's like someone's ripping u down there,it's awful.to help you sleep i would take 50mg of benadryl and 3mg of melatonin,it will knock u out for about 6 hrs.At this point don't stress the constipation,any irritation can be a real problem,get through tonight and in to see a specialist tomorrow. Hang in there girl,we r all with you.Angela

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  • Rambo50
    Rambo50 Member Posts: 140
    edited August 2013

    Thanks Angela and aaoaao. I've done sitz baths today and just tried to rest and ride it out. I'm sitting/laying on a heating pad right now and it's providing some relief :). Will call tomorrow if I'm not much improved!



    JerGrace, I know what you mean about the commitment. I'm so afraid of not being up to teaching my Tuesday class, and both DH and my mom are telling me to have someone step in (since they offered), but I just CAN'T! I'm actually scared to go in and be checked b/c they might put me in the hospital or something, and I'm determined that can't happen! Class and chemo this week!!! Of course after all THAT, I'm going to suggest you take your week one day at a time! If tomorrow's too much, then you'll know you need more time to rest and focus on you ;)

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  • RealityCheck
    RealityCheck Member Posts: 57
    edited August 2013

    Ladies, Feel for each and every one of you. Big Giant Hugzzz to all!!

    Rambo - Hope the tushie is feeling better soon. I can't imagine what your going through!

    Jeri - Hang in there, it's ok to feel down. One of these days, maybe next year this will all look so different.

    Any Woman who is Independent and used to having control like myself, you find yourself unable to control anything in times like these. You feel frustrated, angry that you can't do much cause your so freaking tired, your stomach hurts, you get little aches that you never had before, your constipated, your sitting on the toilet cause your butthole won't close long enough to get off of it, your bald, you have scars you didn't have before and everytime you think you can have control it's like a slap in the face and you start all over. Your tired of hearing only three more treatments, two more treatments, however many you must endure yet. Your grateful for the little things like just waking up every morning and being alive to face it all again. I say to you Dear Breast Cancer Sisters - KEEP UP THE FIGHT! IT WILL BE OVER AND YOU WILL HAVE CONTROL BACK AND YOUR LIFE WILL CHANGE FOREVER. This is my mantra. I am STRONG! I am ALIVE! I will BEAT this! I am BEAUTIFULLY BALD but my hair will grow back! This is not going to control me, I DECIDE!

    Feeling better yet?

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  • JWoo
    JWoo Member Posts: 1,171
    edited August 2013

    Ladies-

    I just wanted to provide a tip about the hemorrhoids. I hope it is okay to leave my blog post here- I hope it helps someone. (NSFW and more sensitive personalities.) http://www.super-crush.com/blahblahblah/?p=153

    I have not had a problem since with the 'riods.  :)

    Healing thoughts to you all!

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  • Rambo50
    Rambo50 Member Posts: 140
    edited August 2013

    Thanks for the info, JWoo! Makes SO much sense that it's infinitely more painful w/o mucous :(:(:( tired of hearing, "I had hemorrhoids when I was pregnant..."

    Calling in the am to see if this is "approved!" Don't see why not (dance!!!)



    I HATE not being able to do for myself and FIGHT!

    I WILL win (rock on!)

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  • aaoaao
    aaoaao Member Posts: 593
    edited August 2013

    Jwoo that blog on roids was hilarious.  I will definitely try the black strap molasses treatment.  People without cancer really don't understand when you say you're in pain from roids.  They may have had little ones that resolve on their own.  They never had the mother of all roids and no lubrication to have a bm.  They don't understand the pain doesn't end outside the bathroom.  Even gas puts pressure on the roid and the searing pain that erupts throughout your entire body.  Mine was like having a burning, sharp knife inserted in and out.  Yes! That bad!  I'd be sleeping and wake up to that same lovely feeling.  I complained to my sister that I'd go to bed in pain and wake up in pain. I finally called my gastro..I had an appt over a month away..and begged his office to fit me in anytime if someone cancels or I might not be responsible for my own actions.  I never felt so desparate to see a doctor in my life.  I never believed a roid could change my life so much.

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  • bikergirl
    bikergirl Member Posts: 112
    edited August 2013

    JeriGrace-

    So sorry things are not going well.  Know we are here for you and you vent anytime ((hugs))

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  • soriya123
    soriya123 Member Posts: 662
    edited August 2013

    Today, I felt really down, a lot of things went thru my head. I kno I tried my best not to live in fear n keep telling myself to live with hope, but sometime I can't help it, but scared.



    So many questions went thru my head sometime.

    Will I able to see my kids graduate from high school?

    Will I able to see my daughter and son and help them go thru their teenager years?



    Sometime just so hard to be strong n think positive.



    Hugs to all!!!!

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  • Karkar06
    Karkar06 Member Posts: 21
    edited August 2013

    Hello all beautiful ladies,



    Jeri, you are very welcome to vent here, I hope you are feeling better now. I felt "guilty" that I had to take months off work too, but i think sometimes I need to put myself before others. Perhaps one day they will need my help too, and I can only help if I am healthy.



    Soriya, I know how it feels. I have similar questions going thru my head too but I am not even married nor have kids. I do worry about a recurrence, so worried that I could cry just by thinking about it. I would talk to someone about these feelings but try not to dwell on it too much. No one knows how things are gonna turned out, right? =)



    Finally a piece of good news! I am back from my third TC infusion and no allergic reaction, woohoo! The nurse slowed my drip from an hour to 2 hours and problem solved!



    Have anyone of you read the book "dying to be me" by Anita Moorjani? I found it quite inspiring/interesting. It's about her near death experience and her terminal cancer healed itself in 3 days. Sorry I am not really sure if I should talk about a book here.... Please feel free to ignore =)

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited August 2013

    Jerigrace and Rambo if you can't continue working, please take care of yourself. What are they going to think? Oh jerigrace couldn't work cause she has a little breast cancer? No they are probably going to think i cant believe she worked that long.

    Soriya those dark thoughts can get to all of us. Just try not to let them stay. We are all taking steps to get the most positive outcome. Assume you will be a positive statistic.

    Hope those who are feeling bad will have relief soon. Glad to hear of tumors shrinking and other good news.

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