Sept 2012 chemo

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  • EnglishRose75
    EnglishRose75 Member Posts: 147
    edited December 2012

    NjeanRN: Just to mention too, you should check out the Triple Negative board "Calling all TNS" which is a really great resource for all things relating to TNBC.  There are lots of ladies on there who are going through treatment, have just finished or are years out.  I've found it to be a really useful group.  I joined it before I knew I was PR+ and they haven't kicked me out (yet)!  Lucky because I haven't seen anyone who is ER-/PR+ so I would be left homeless!

    Cherioo: Congratulations on being almost there! I agree with you that positive thinking is important.

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  • NjeanRN
    NjeanRN Member Posts: 8
    edited December 2012

    Thanks English Rose! Just found it and introduced myself a little!

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  • Hopex3
    Hopex3 Member Posts: 397
    edited December 2012

    NjeanRN...welcome to our little club that we didn't ask to be in. However, thankful for our little club. There is no judging here and you can tell it like it is. Alot of us are struggling now with the "what if" emotions! So it's good to be able to connect with each other like this.



    Ok....I have sat on my butt all day watching parenthood. They all argue too much! Now, I am going upstairs to attempt to ride the bike for 5 minutes. Then I need to work on my eating healthy. Lol

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  • Amy4978
    Amy4978 Member Posts: 473
    edited December 2012

    I am on the fence and could be in either team... Cant wait to finish but also worried about recurrence. One thing that has made me feel good along the way is I had chemo first so I have had the opportunity to watch my tumor shrink from 7.9 cm to almost nothing! This gives me great comfort in knowing the chemo has worked but I do fear for the nodes that were involved and it coming back anywhere...

    But This is where faith comes into play! We have to have positive thoughts and believe we will be okay. I also understand somedays get the best of us... But again keep the faith and think cancer free 2013! Hell cancer free for good....

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  • Amy4978
    Amy4978 Member Posts: 473
    edited December 2012

    Oh my just watched.the episode in season 4 where she talks to her doc for the first time about her cancer options and I am s0 pissed off... What an insensitive asshole!

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  • PatinMN
    PatinMN Member Posts: 920
    edited December 2012

    At this point I worry not so much about recurrence, but about not being able to complete my year's worth of Herceptin due to its effects on the heart.  My EF was at the lower end of normal before starting treatment, so if it goes down much at all I'm in trouble.  Frown  I start rads (33 of them) in early January, and then will start Tamoxifen, so the parade of treatments just continues on.

    Speaking of rads, the radiation oncologist said 33 treatments was the "normal" number, but I have since seen a lot of people on these boards that are getting fewer than 33 treatments.  Anyone else getting 33?  Is it because I'm HER2 positive?

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  • Mariposa123
    Mariposa123 Member Posts: 267
    edited December 2012

    Hi All,

       So, I am in such a weird space.  The doctors told me the last time I went in they needed to stop chemo because of my neuropathy (my oncologist was out of town)- today I talked to my oncologist on the phone and he was pretty adamant that I resume chemo immediately- like maybe tomorrow.  I feel like an emotional wreck.  One minute I am scared about ending early, then I am scared about surgery but glad chemo is over, now I am back to getting chemo possibly tomorrow.  Yikes!  The worse part is I will be sick for Christmas:-(  I am a mess.  Plus I am scared about the warnings that if I continue chemo I might not be able to walk.  Uggh.  I am the kind of person that plans everything.  I don't like having plans changed all of the time.  I guess it is time to learn to be flexible. 

      Had to vent:-( 

    PatinMN:  I also get really scared about not being able to finish my herceptin.  I had an echo earleir this week and things were fine.  My other fear is regarding tamoxifen.  I have a blood clotting disorder, so I might not be a good candidate.  Anytime I can't have something that might lower my chances of recurrence,  I get worried.  I haven't heard yet how many radiation treatments I will get.  I saw on the San Antonio Symposium thread that there was an article about having less radiation and it still being effective.  http://www.sabcs.org/PressReleases/Documents/2012/8f5936de321e2688.pdf

    Okay... I am going to try to call my clinic again to find out what is happening:-( 

     



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  • PatinMN
    PatinMN Member Posts: 920
    edited December 2012

    Mariposa - Yikes is right!  Wow, what a turnaround in your treatment plan!  I can't remember if you said whether or not you were taking anything to counteract the neuropathy - ? 

    Thanks for the link to the article on radiation.  I will print it out and ask the RO about it when I go in for the "mapping" session. 

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  • fight4two
    fight4two Member Posts: 146
    edited December 2012

    Eek- I think my perspective on the chemo was different because I still have the lump in me, and am anxious to get it out so I can actually start feeling cancer-free.  But now that I think of it from the perspective of already having the cancer removed, I understand the fear.  Chemo would feel more like maintenance, keeping the horrible cells (if any) at bay and killing them.  Our little artillery of men fighting for us.  Why would we ever want to stop having that added protection? I still am axious to get chemo over with so I can have the surgery, because to be honest, its not really comforting to know that I definitely still have cancerous cells in me.  But now not having chemo after surgery, and the time between chemo and surgery is causing a bit of a panic in me.

    Mariposa - I can't believe they are doing this to you! What a horrible emotional rollercoaster ride. I'm so sorry this is happening to you. *Hugs*

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  • Mariposa123
    Mariposa123 Member Posts: 267
    edited December 2012

    Thanks for the hugs and validation that it is crazy making:-( 

    For the neuropathy, I am taking neurontin and I am also taking a special neuropathy supplement I found online.  So far, my neuropathy has improved a ton- especially in my fingers.  My toes are still numb, but better than they were a week ago. 

    Left a message with my treatment team, but still haven't heard back... I hate the waiting.  I am fine going tomorrow, I just want to know.

     



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  • Joemommy
    Joemommy Member Posts: 31
    edited December 2012

    Hi Ladies!  I feel great today... I love the steroid high!  :)  Also, I'm very excited about my final chemo treatment tomorrow... I wanted so much to postpone it so I could enjoy Christmas more with my son but now I just want to be done!  After this, I still will get the Herceptin infusion every three weeks and radiation treatments will start probably in February, but I am THRILLED I'll be done with this horrible chemo!!!!!  To celebrate I finally got a wig today.  haha  I am sick of looking sick so I figure sometimes I will wear it and feel better about my appearance.  I updated my avatar to show what it looks like!  I know I'm going to feel absolutely horrible for the next week so I'll enjoy my excitement while it lasts.  lol

    I'm sorry I haven't kept up with posts more... I have such a horrible memory it's hard to remember who said what!  I wish we could reply to individual posts at a time.

    Mariposa... how frustrating!!!  What on earth?  

    The thing about worrying after completing chemo and surgery options... I kind of wish I would have gotten a BMX.  The surgeon made me feel like a lumpectomy was the best choice... my tumor was only 1.9 cm and I have large breasts... cosmetically it didn't affect my breasts at all... they are still the same size, just one has two approx. 1" scars from the lump removal and the sentinel node removal.  BUT... I thought I would only need radiation and not chemo.  I don't want to ever go through this again.  I had the BRCA test and it was negative, but I feel I will worry constantly about recurrence and maybe a BMX would have reduced the chances.  The surgeon said a lumpectomy with radiation and the mastectomy have same chances but maybe that's just in the same breast.  I don't know.  I liked the idea of a way less invasive surgery but now I'm not so sure.  Oh well.  The surgeon said I have the option to still have the BMX if I desire.

    Hugs and happy thoughts to all!

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  • Hopex3
    Hopex3 Member Posts: 397
    edited December 2012

    Mariposa...big hug to you for the roller coaster ride. Geez..can't believe the turn around on their decision. I will be anxious to hear what you find out tomorrow.



    Fight4two: I hear you with the time frame between chemo and surgery. I have three weeks in between to wait. They tell me that they want to make sure your body is almost back to normal meaning blood levels and strength. It will make healing better. But I can't help thinking is it going to start growing again during that period.



    Joemommy: your wig is cute. I need a new one. I live in Vancouver, wa and got mine at The Wig Gallery. Where did you go? Good luck on your final treatment. Yay!



    Amy: I don't think I can watch any more parenthood. OMG! Their kid drives me crazy! And the husband too.



    Sleep tight everyone!



    Erin

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  • kidsandlabs
    kidsandlabs Member Posts: 138
    edited December 2012

    Treatment today, due to neuropathy they cut it down to 80%. MO said should be able to get full dose next time which is my last treatment! My white count dropped last but came back up this week. However, my red dropped this week. Hopping it comes back up this week.

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  • Amy4978
    Amy4978 Member Posts: 473
    edited December 2012

    Patinmn.. I am also her2+ my radiation is sceduled for 30 treatments.



    Hopex... I cant imagine being in her shoes and having cancer.. Sometimes other peoples situations def make yours feel easier.

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  • Joemommy
    Joemommy Member Posts: 31
    edited December 2012

    Erin, you live so close! I went to Merle Norman on 82nd in Clackamas. It's the only place I looked. I could only wear it a couple hours but it was fun. I always wear scarves but now I have an option to feel more normal. :)

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  • Mariposa123
    Mariposa123 Member Posts: 267
    edited December 2012

    Joemommy:  You look super cute in your wig:-) 

    Amy & Hopex: Hope, I am glad you say the husband drives you crazy.  My mom thinks he is so awesome, but I can't stand him either.   I still think she needs to lose her hair or I won't have any respect for the show. 

    No one ever called me back tonight- so  I guess I am not going to chemo tomorrow.  Uggh.  I hate this.  I just want to be doing what I need to do so I can be closer to finishing.  I want some semblance of a normal life back. 

    Hope everyone has a nice evening with no SE!!! 

     



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  • fight4two
    fight4two Member Posts: 146
    edited December 2012

    Wow I'm posting a lot today. Just picked up my antibiotics prescription and its for a drug called levofloxacin. The possible side effects are serious and dangerous and are more worrisome than the chemo. Would it be silly of me to refuse to take it? Seems frightening to take such a serious drug just because my wbc count is low. I'm feeling fine and it sounds like I won't be after the drug. Would hate to have some of the irreversible se if I didn't need this - it would be different if I actually had symptoms of something. Advice, please!!

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  • EnglishRose75
    EnglishRose75 Member Posts: 147
    edited December 2012

    fight4two: I'd call your MO and ask whether they can give you something that's a little less hard core but will still do the job.  It doesn't sound like you should not take it without consulting with someone first.  I think you're right too about chemo before versus after surgery.  I had my surgery before and was told that they had removed "all the cancer (that they know about)" so I viewed treatment as insurance against recurrence.  It would be different of course if you're having neo-adjuvant chemo.

    Joemommy: You look awesome in your avatar.  Congrats on being almost done with chemo! 

    Mariposa: Wow, what a turnaround.  Did they tell you why they changed their minds?  Obviously you should follow the advice of the medical professionals, but emotionally this must be a really difficult U-turn to deal with. A big hug to you.

    I finished work yesterday and am off now until after New Year which is a glorious feeling.  Two whole weeks of not having to haul my aching body out of bed on dark cold mornings.  Hooray! I need to tell myself not to rush around (actually shuffle would be more accurate in my current state) doing jobs around the house and things and make sure that I rest and get physically stronger before radiation in January.  My 13 year old daughter wants her bedroom re-painted black.  I don't think so!

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  • EnglishRose75
    EnglishRose75 Member Posts: 147
    edited December 2012

    A woman who I have become close to who went through treatment for BC last year told me to have an image to visualise when you are lying on the bed during radiation.  This is going to be my "happy place".  A more realistic image would probably include an angry eight-year old somewhere in the picture complaining that she has sand in her knickers and her eyes sting from the salt water.  There should also be a Kindle and a large gin and tonic on the table in front of me, with a waiter poised just out of sight to bring me cold slices of watermelon on demand.

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  • Cherioo
    Cherioo Member Posts: 305
    edited December 2012

    Mariposa I am so sorry you are having to go through this roller coaster . Your MO must want you to have the best treatment possible. I bet he will give you a real dense dose due to the neuropathy . Mine changed yesterday because of the tingling and pain in fingers and toes . Today thank god I feel good with pain at all . Blessing going your way and blessing for all my sisters here

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  • butterfly14
    butterfly14 Member Posts: 253
    edited December 2012

    Mariposa - I cannot imagine the roller coaster that you are on. I hope you get answers from your MO soon.

    Fight4two - I took that same antibiotic a couple of weeks ago for low white count and had no adverse side effects, however, everyone is different. Also had a blood transfusion last Thursday for too low of a red count. Thank God only one more chemo session to go.

    I am grateful had BMX before chemo, this, like EnglishRose said, is like the insurance policy that it truly is all gone. Feeling the neulasta pain starting in my back. I hope everyone has no SE's with treatment this week.

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  • QueenKong
    QueenKong Member Posts: 154
    edited December 2012

    Most of you seem a better this week than last. I'm still recovering from the surgery, waiting for the pathology results to see if I am going have more chemo, radiation or not. Am I even posting on the right anymore? This is where I started so I feel like I belong and you all know me. 

    EnglisgRose - love that pic. In mine there'd be some dolphins jumping, a brilliant sandcastle & there would be no bitty flies like the last time I was at the beach. ENjoy your time off.

    Amy - love that pic too. Does the Latisse work? How was the movie?

    Mariposa - So you don't know if you are going to get more treatment? You are lucky to be able to get out walking your dog after surgery. 

    Joemommy - love the new wig! I need a wig.

    Hope - Funny, MY fridge was calling my name too! There must be a connection. 

    Fight4two - Did you take that med you were questioning? I had a break of just over 5 weeks between chemo and surgery. The surgeon was anxious to get me in as was I. I was still recovering from pneumonia and still am even with surgery on the 14th. He also said my healing with be slower and different because of the chemo compared to someone who goes for surgery first.

    My right boob, post sugery is turning the uglist colors of dark bloody red as the blood pools inside of it. It's a lot bigger than the other breast/ The surgeon said it's ok but I don't know. It's so hard to find a reference. Smells weird too. The day before yesterday I was at Target trying to find a front closure bra I could wear and went into the fitting room to try on this cami and I about fainted at the sight of it. My nipple had felt irriated and all the blood was pooling toward it. So gruesome. My daughter was with me in the fitting room and I made her turn around so she wouldn't see it. Good grief, she doesn't need to see that. 

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  • Amy4978
    Amy4978 Member Posts: 473
    edited December 2012

    Queenkong... Yes the movies was good we saw wreck it ralph. Lattise does work kinda pricey but I have never been without lashes or brows and I am on my 12th treatment out of 16. Thanks for the compliment on the pic!

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  • Joemommy
    Joemommy Member Posts: 31
    edited December 2012

    Thank you for the wig compliments! :) Last chemo in two hours. Never been so excited for chemo! I will have to come back for herceptin every three weeks but I'm sure that will be a breeze in comparison. Take care all!

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  • Amy4978
    Amy4978 Member Posts: 473
    edited December 2012

    Queenkong... Yes the movies was good we saw wreck it ralph. Lattise does work kinda pricey but I have never been without lashes or brows and I am on my 12th treatment out of 16. Thanks for the compliment on the pic!

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  • Amy4978
    Amy4978 Member Posts: 473
    edited December 2012

    Joemommy.... You did it! You made it to the last chemo whoohooo....

    Ring that bell!

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  • Hopex3
    Hopex3 Member Posts: 397
    edited December 2012

    EnglishRose...I may have to borrow your happy place. I need some sun and quiet. And that Gin and Tonic...well, vodka!



    QueenKong.. Good to hear from you! That is weird about your bloody boob. Geez...after everything you go through, why can't it just heal without any side effects. Sick of side effects. I guess it takes time and you will be feeling good before you know it.



    Going shopping now in the pouring down rain. So fun!

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Joemommy-

    Yay!!!! Love the wig!!!

    Mariposa-

    Good luck!!

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  • jojo2373
    jojo2373 Member Posts: 662
    edited December 2012

    Hello ladies! Catching up with everyone's week! I went back to work in the office this week and have been crashing early each night. It has felt wonderfully normal. I will enjoy for awhile until the whirlwind begins again with surgery. Told my cancer/chemo story at least 10 times this week, ugh. Hugs to all!

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  • damiana9
    damiana9 Member Posts: 389
    edited December 2012

    Mariposa- Oh my gosh, I am so sorry you are in such a mess right now.  I hope it gets figured out soon. 

    I had my last chemo yesterday!  WoooHooo!  Of course, I will still have to continue every 3 weeks for my herceptin but at least that wont cause all these crazy bad side effects and I will be able to start growing my hair back!  I had such a terrible time after my last treatment that they are forcing me to come in tomorrow for fluids and hopefully stay ahead of the ickyness.  I should be feeling well for Christmas which I am very glad about.

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