Cytoxan Taxotere Chemo Ladies- February/March 2013

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  • momat927
    momat927 Member Posts: 173
    edited January 2014

    SC, thanks so much for your note. Disability?  I was wondering about that but felt oddly uncomfortable about it.  I am so relieved to hear someone else investigated it and is receiving it. My MO said something a bit disparaging about that option.  He is ok, but not always great relationally.  Ok!!!!  Enough of my ambivalence about moving from helper to patient!!!! off to call therapists.    Xoxo

  • momat927
    momat927 Member Posts: 173
    edited January 2014

    Virginia, forgive me !!!!  Reading posts kind of backwards on iPhone & just read your post!!!! Thank goodness your MO is on top of this with you !!!!!  I am so so sorry you went through this.  Chemo is like a haunted house.  You don't know what will jump out at you next.  Let someone nurture you today!!!!  Amy ( momat)  

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited January 2014

    I have a private short term disability policy, not federal or state disability. That is totally different. Happy Therapist calling!

  • VirginiaNJ
    VirginiaNJ Member Posts: 634
    edited January 2014

    keep, melrose, sc, and Toni....thanks for your kind words....  It's a bit scary not to be getting 4 of the same treatment, but what can I do :(

    keep- I was on steroids oral the day before and after chemo.  I got a drip steroid and Benadryl the day of chemo.  After chemo #2 I got redness at the infusion site, but it never spread...was just a big blotch on the back of my hand.  Chemo #3 was infused in my arm and no issues.  But the next day when I woke up I had a rash on my wrists.  MO looked and told me to just use hydrocortisone cream and it went away until this week when everything literally blew up....

    Toni- I did the "red devil" in 2007 with very few SE's.  I worked throughout my chemo then.  My onc told me that TC was "easier" than AC....LOL not so much.

    Still super super itchy everywhere, but my throat doesn't feel closed anymore and the swelling has gone down dramatically.....

    Again, thanks for your kind words!!!!  

    xo

  • audra67
    audra67 Member Posts: 521
    edited January 2014


    Virginia!!  That is AWFUL and weird for it to show up so many days later when you thought you would be in the clear!  Glad they switched to another drug!  Wishing you no welts and that rash to go away!  I HATE a rash!   Praying for you to recover quick!

    I am seeing a different counselor this week, hoping he's great...was a referral from my massage therapist/ and she is a friend, she has been someone that texts me every few days to see how I  am through this and means so much!

    The other counselor I liked, but her solution to all things is , give it to God...well I do, and I am but still need other tools....so hoping this guy has more up his sleeve that works for me.

    Happy night !

  • momat927
    momat927 Member Posts: 173
    edited January 2014

    SC. Yes that makes sense- private short term disability.  Hmmmm. Thought I had that via job. Off to investigate. Prefer that than any state or fed. Thanks momat

  • momat927
    momat927 Member Posts: 173
    edited January 2014

    Virginia, to have your MO so responsive & apologetic is rare.  Sometimes I feel as though I am missing things in posts or reading too quickly. How are you tonight? 

  • VirginiaNJ
    VirginiaNJ Member Posts: 634
    edited January 2014

    Audra and Moma - TY :)

    I am hanging in there :) the worst is over - throat is good and swelling is 99% gone.  My MO is AMAZING.  I really love her.  She called me again today to check on me and was apologizing again for "doing this to me."

    I just keep telling myself that most of my cancer was removed by the biopsy to keep me from freaking out about not having a 4th round of TC.

    And with regards to support - it's truly fascinating how people react for sure.  I am lucky that my brother and sister have been truly amazing to me.  My sister was by my side the whole time the first time as was my dad.  My dad has since passed and my brother kind of stepped into the dad role (he's 11 years older than me).  My first round my bro never even called to see how I was.  I try to forget that b/c he's been truly amazing this time ferrying me into crazy Manhattan for numerous doctors appts.  And my sis, well, she is my ROCK.

    I have just a few friends who check in consistently.  One coworker who hugged me and cried when I visited the office mast year sobbing to me "I can't believe "we" are going through this again" - not ONE call/text/message - nothing.  Many I heard from once maybe right around my surgery, but never again...  I think what others have stated pple just don't know what to do / say.  It basically helps you prioritize relationships for sure :)

    Hugs and love to all......

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited January 2014

    I actually have AFLAC hospital, accident and disability policies and I have an AIG cancer policy. Suffice to say they have more than paid me my premiums over the years. 

    Ladies check to see off you have any policies you have forgotten. 

  • audra67
    audra67 Member Posts: 521
    edited January 2014

    SC-  just for a preview of being DONE....how are you feeling after round 4/?? 

    Are you doing better?? Do you think mentally you are happy and thrilled and that makes 4th one easier/better?

    Just wondering/..

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited January 2014

    Audra, today was the first day I could really move around. The idea that this chemo is over and I made it through is quite overwhelming and peaceful at the same time. 

    I feel a sense of moving forward that I did not before. I think once my PET scan is done on Friday I will feel more in control of the new normal. 

    The fourth one in retrospect was hard Because of the exhaustion the first few days were unbelievable, but WOW. It's over

    I have started to get hot flashes, where I want to run out in the cold naked. Loopy Other than my back. I'm a happy camper... 

  • audra67
    audra67 Member Posts: 521
    edited January 2014

    That is wonderful SC!!!  SOOO Very happy for you!  I cannot wait, my last is 16!! 

    Did you have PET scan before chemo too or ct scans??  I am wondering as it seems some get ct some pet....I got several CT scans of different parts of my body and MRI of chest so I had to go all day from one end of hospital to another...I am thinking it would be much easier to get the PET and be done....I wonder how / why they request one over another...I'm going to ask my MO...


  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2014

    sc, virginia, glad you are feeling better! Keep it up!

    sc, hope your scan goes well on Friday.

    audra,  love your pic! You are one TX ahead of  me. I will have my 3rd on the 16th. I am at the halfway mark now for my chemo and it feels good:).

    I am still catching myself being surprised that I am on this forum chatting about BC, sometimes...but thankful you all are here!

    ((HUGS))


     

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited January 2014

    Apparently, my MO does not believe in scans for follow up. The reason I am having it is because of my back and I asked for a full body scan. He will only do a scan if you have symptoms. One of the nurses in infusion accidentally did the tumor marker test and it was high. My MO said it was unreliable and would trigger 'unnecessary scans". I will forever be grateful to her. 

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited January 2014

    Virginia glad to hear you are doing better!!!!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2014

    Melrose:  Thanks for the links about Hand&Foot syndrome.  I'd heard of it but ever thought to go back & research.  Since I'm on Adriamycin with my Cytoxan that would explain why all my fingers are cracking open.  And may mean that what I'm ascribing to CIPN from the Taxotere is partly Hand&Foot. (how can you say Hooray for an SE for heavens sake)

    BTW - I didn't have near the SEs with Adriamycin that I did with Taxotere.  That Tax ate my lunch - literally - w/more than 2 weeks of the Big D every cycle & all food tasting like garbage.  Good luck to all of you with your current treatments.

    Just have to share what I said to the guy I thought was my best friend.  A year after the BMX & exchange when I had heard NOT ONE WORD, I called him up one day after I'd tried to get over the hurt and when he answered I said "hey, it's not catching you know".  Of course he had a million excuses.  Only heard from him once afterwards when he needed help.  So I've written him off after a 20 year friendship - but it felt good to brace him.  Maybe I'm too cynical?

    Audra:  Love your new avatar.

    SC:  Holding you in my thoughts through the scan.

  • momat927
    momat927 Member Posts: 173
    edited January 2014

    SC, i am so grateful you are getting a scan & for that fortuitous mistake!!!!  I hate to think some MO choices may be insurance driven.  A cynical thought. Please let us know how it goes.  Yay for self-advocating!!   Amy (momat)

  • audra67
    audra67 Member Posts: 521
    edited January 2014

    SC- That's right, its for your back pain...good thing you are getting checked all over though, I want a PET scan!  Praying all is well and those markers, I looked that up online the other day and read a ton about how they are always off and not accurate...so don't worry.

    God has you in the palm of His hand!

    minoustwo- hoping feet get better soon!

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited January 2014

    Minus good for you! Calling him out. Some people just need to be shamed. 

    Thanks Amy and Moma' my MO did warn me that it will "light up" because I have some inflammation. I wonder how they can tell the difference between bone mets and arthritis. 

  • VirginiaNJ
    VirginiaNJ Member Posts: 634
    edited January 2014

    hugs SC - will be thinking of you tomorrow.  

    Audra I like ur new pro pic - is that your wig?  It's very pretty!!!

    Minus- I am with you!  Obv taxotere was very bad to me lol.  I didn't have as many SE's with AC chemo.  My onc told me from the start TC was "easier" than TC.  UGH

    I still very itchy - my palms mostly today.  Do you all think this is the hand and foot thing?  I hope the abraxane is better to me lol. My swelling is 100% gone thankfully.  Yay for steroids!

  • tonilee2
    tonilee2 Member Posts: 91
    edited January 2014

    (((Virginia)))...I am glad you are feeling a bit better today! Taxotere is some very hefty & toxic stuff.  I think your itchy palms are still related to the nasty SEs from Taxotere!  Don't back down yet on any of the treatments ordered to combat the SEs...it takes time for everything to settle down.

    I am on Day #2 (Post-Chemo #3 T&C) & Neulasta...feeling a bit crappy with zero appetite...some nausea and fatigue, fatigue, fatigue!  A bout of diarrhea...the usual.  Husband was called into work to cover evening shift and Thursdays are usually when I plummet following T&C infusion on Tuesdays & Neulasta on Wednesdays.  Oh well...I will somehow get by!

    SchoolCounselor...have always followed your posts and I've been amazed by your strength.  You are one incredible lady!

    Audra...meant to tell you in my PM that I LOVE LOVE LOVE you in your new wig!  You are gorgeous any way you look at it...and I sincerely mean that...but I LOVE the style of the wig...it looks great on you...so pretty!

    minustwo & keepthefaith...hugs and positive thoughts to you today!

    (((momat)))...hang in there and know I am here for you!!!

    Uggghhh...gonna try to do a bit more crocheting, which is hard for me immediately post-chemo...concentration is poor with bad neurological SEs.  I'll try!!!!  Working on completing a scarf for a friend.  It's a delayed Christmas present!

  • TeamKim
    TeamKim Member Posts: 568
    edited January 2014

    VirginiaNJ -- Your reaction to your 3rd TC tx sounds exactly like mine (if you do a search on my name you can read all my posts on it).  Interesting that our dxs are so similar too....  My MO was considering Abraxane or Gemzar with my 4th treatment and wanted to break up the two drugs to just make sure it was not a reaction to Cytoxan and to make the treatment a little milder.  But I was scared, like you, and also did some talking to my PCP about i t ( he encouraged me to stop and "not to tempt fate").  Ultimately I decided to just stop after the Cytoxan and not get the other half of the 4th tx.  I just was not comfortable getting a new drug with unknown SEs, and I felt the risk outweighed the little bit of benefit it might give me,  My MO was fine with that decision.  Good luck to you, hoping you make it through tx 4 without any trouble!  ((((Hugs))))

  • VirginiaNJ
    VirginiaNJ Member Posts: 634
    edited January 2014

    tonilee - yes I am still popping my steroids :) got the impression onc wanted me to lay off the Benadryl yesterday - wonder if it counteracts chemo?  And bless your heart for crocheting someone a scarf :)

    Teamkim- I just retread ur posts. The rash sounds exactly the same.  My butt (lol) was the first place to start itching....and then it just basically spread everywhere....then the hives.....then the swelling and throat tightening...that was super scary.  My MO is confident it's the taxotere so she is planning abraxane.  she said it's like taxotere without the allergans?  Anyhow, I am scared of not having 4 of the same chemos, but like you there is no way I can have the taxotere again.  This cancer is triple negative so chemo is my only defense against it.  I am even more glad now that I had the double mast to remove most of the breast tissue.  I was a complete and total sobbing crying mess in my oncs office and she was just so kind and reassuring.  Not that it eases my mind any....but I do love her and her compassion....

    Thank you ALL for your kind words of compassion....they mean the world to me!!!

    Hugs!!!

  • Nancyjeanne1967
    Nancyjeanne1967 Member Posts: 56
    edited January 2014

    VirginiaNJ- you went through my worst fear!! Sorry you had such a bad reaction. My nurse said if you don't have any reaction after #2 your good to go. Ugh! So much for that!! On day 2 from 1st treatment and so far feeling good. Feel like I might start floating from the 50 ounces of water I've guzzled but I'm one of those believers it helps flush out the crap and you won't have as many SE's. Yea probably not, but let me believe. Lol! Keep you posted if I've drowned the SE's. Hugs. 

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2014

    I have missed a lot lately! Trying to work as many shifts as I can before my exchange surgery in 2 weeks. I read everything, but won't get to respond to all.

    SC, Congrats on crossing the chemo finish line. hoping your side effects go away quickly, and that your back pain resolves as well. Thinking of good results on your scan.

    Virginia, The reaction sounds scary. glad they have a good alternative for the last round.

    Audra, Love the new look!!!!!

    Wishing everyone in the chemo chair recently minimal side effects.

  • SchoolCounselor
    SchoolCounselor Member Posts: 452
    edited January 2014

    Kbee! Great to hear from you.

    Getting a little anxious about my PET scan, but will be leaving with the Xanac. Thanks for your support. I have to fast for 6 hours so I'm done eating right now.

    Went to the LIVESTRONG program at the YMCA yesterday it was great, its a free strength and conditioning program for people who had/have cancer, 12 weeks. They are all over the country, ladies check if they have one near you.

  • VirginiaNJ
    VirginiaNJ Member Posts: 634
    edited January 2014

    Hugs SC - we will all be with you in spirit!!!

    Nancyjeanne- I was totally totally shocked to have the reaction I did, for sure.  I had chemo in 2007 and tolerated it really well with no issues.  So, the fact that I had as severe a reaction as I did almost 10 days after my treatment, it was weird.  But, I guess it happens.  He good news is that the reaction responded to the steroids really well/quickly.  I am guessing that I am more a unique case than the norm and you will be fine!!!  I see you are from Jersey!  What part?  I am in Bergen County...

    KBeee!  Nice to see you!  Love my onc :) she really is amazing and very clearly stated her plan when I saw her.  I am comfortable with her and have complete and total faith in her....

  • audra67
    audra67 Member Posts: 521
    edited January 2014

    Hi all!

    SC - praying for you today...you can and will get through it!  You are a tough cookie!

    Thanks for the nice comments on the new wig.  I like it. Never really had short hair before but figured it will be short when it grows so that might be a good transition.  It does make my head itch though...and poke...take it off immediately when I get home.

    I have felt good the last week- and I have one more before last chemo!  So this is unusual...and nice.!  The nuelasta didn't hurt me at all this time either...so all in all round 3 was good to me.  I have been having bloody nose the last 3 days, gushers...but that might be the cold weather and dry heat...even though I turn it to 62 at night in our area for my hot flashes!! My normally warm husband is freezing!  But he says he is OK and leave at 62...I think he is a saint! SillyHeart

    Saw the new counselor yesterday, he has Masters in divinity and PHD...I liked him, very straightforward and seemed to know what he was doing and like he had a plan to help me get through anxiety or negative thoughts...

    He told me to do 2 things until next appointment

    1.  Live in the now- do not think of future or past negative thoughts at all- live today and redirect myself when starting to worry about past or future things - I can plan future happy things or think happy remembrances but no going over diagnosis or worrying of reoccurrence ,etc.

    2. Whenever a negative thought comes to mind or a thought that produces 'suffering' or going down to the dark side, he said to replace it with a good thought, or bible verse or something encouraging!!!

    So that was it for yesterday, but he said tons of good methods to train your brain to not go there and be positive!!!

    Also it was encouraging that he said all of these thoughts are normal and all people with an ailment or prolonged disease and especially cancer patients all experience these thoughts and worries and we are supposed to, not normal to suppress them or act like all is OK when obviously your whole lifestyle and body has changed....

    So THAT made me feel good too...



  • Nancyjeanne1967
    Nancyjeanne1967 Member Posts: 56
    edited January 2014

    VirginiaNJ-

    I'm from Somerset county ( central). Glad to hear the reaction was quickly taken care of!! I always say there's no norm when it comes to bc!!  I never realized until I joined the club that when they said bc, how different each and every case could be! Feeling just ok today. Three days out from #1 I'm tired and feeling like I have an upper bronchial thing going on. Can't deal with that too....well on the other hand I guess I'll have to deal with it. Ugh!

  • bondsy
    bondsy Member Posts: 94
    edited January 2014

    It's been a while since I've posted. I am now 5 weeks post-chemo and am having an annoying side effect that I wondered if anyone else is having. (It started to show up about 2 weeks post-chemo.) Both of my big toes are very painful, especially around the outer edges of the nails. I'm wondering if this is the start of the toenails separating from the nail bed that I've heard of. There are no other changes to my nails, just the big toe pain. I'm having trouble finding shoes that are comfortable, and it's so cold I can't wear sandals. Anyone else having this? On the positive side - I'm finally starting to see hair growth!

    I've moved on to radiation. Just finished my 7th treatment out of 25. It's going well, but I'm starting to notice redness and some swelling/soreness.

    I hope you're all doing well with the chemo. It gets better soon!

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