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Calling all TNs

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Comments

  • Summer38
    Summer38 Member Posts: 96
    edited August 2010
    JenC, I had my 2nd Taxol treatment last Wed and I can totally feel your pain - literally!!! This is honestly the worst pain I've ever felt in my life ( I have 2 children Wink) and I have found nothing that relieves it, not even vicodin! Last treatment it lasted a week and if you want honesty I will tell you that it's worse this time - Sorry! I did find that going in the pool during the day helped but I found nothing to help with the pain at night. Hope you feel better soon!!
  • jenweg
    jenweg Member Posts: 55
    edited August 2010

    Uh oh, I am not liking hearing about the taxol pain!  I am on twelve weekly taxol, had my first this past Wednesday and have had a little bit of pain but nothing major.  I hope it stays that way.  Are you on weekly treatments?  I have been doing well, knock on wood with the taxol.  When I did my ac treatments every two weeks, they were rough and I missed work because of it.  With taxol, I have only missed the day of treatment so far.  Hoping that it stays that way.  I hope your pain gets better!!!

  • Summer38
    Summer38 Member Posts: 96
    edited August 2010

    Jenweg, from what Ive heard the side effects differ from the DD Taxol and the weekly Taxol. I'm on DD so hopefully you will not get what I have.

  • JenC
    JenC Member Posts: 186
    edited August 2010

    Summer38 and Jenweg. - I am on weekly taxol so really hoping that this does not become a constant.  Although my onc nurse did tell me that ibuprofin and a heating pad should help???  YEA...  It is not as bad as it was last night and Perks helped me sleep a little but man this is anoying.  I am still working and hoping that next week wont be so bad but I was also told that they can adjust the dose (lower it) if needed to help with the pain.  So we shall see come Friday what they propose to do.  Thank you for your input on this and I hope you both are doing well and the "pain" subsides. 

  • Pamelajo
    Pamelajo Member Posts: 124
    edited August 2010

    My Onc told me that severe bone pain is a reason to switch from Taxol to Abraxane.  Your body is not tolerating the stuff the taxol is mixed in..  Ask your onc if they can switch you.  Abraxane is more expensive (alot) but if you do not tolerate taxol, it's well worth it.

    I've had one taxol, and thought I'd die from the itching and pain......  and 4 abraxanes.  I haven't missed a day of work on Abraxane.  I missed an entire week with the one Taxol.

    good luck girls

  • JenC
    JenC Member Posts: 186
    edited August 2010

    Pamelajo - Thanks for the info I will definately talk with my onc about that on Friday.  I am sitting here at work and my legs and lower back are just throbbing Undecided.  Hope you are having a good week.

    Jen

  • Claire82
    Claire82 Member Posts: 490
    edited August 2010

    at night i used advil and valium for taxol - worked wonders

  • kad22
    kad22 Member Posts: 58
    edited August 2010

    JenC - oh man that sucks! I am on the weekly dose of 12 at number 5 today!! I have had only slight pain in my lower back - nothing major. So maybe switching is what you need to do. I am getting bloody nose and my onc. doesn't believe that the aches in my back or nose is related?! HELLO?

    Only 7 more Taxol's to go!!! YEAH!! Counting them down! Still gaining weight though. o-well tried Zumba last week and will probably start that if I have enough energy!

    Take care everyone - Kelli

  • MBJ
    MBJ Member Posts: 3,671
    edited August 2010

    Jen:  I used a product called MagO7 to get all of the risidual chemo out of my body and it also eliminates any constipation.  All natural:  Magnesium & Oxygen and I always fetl great after my one or two bad days after chemo.  I didn't want to go out all night dancing, because chemo does exhaust you, but well enough to go out and about and to be able to sleep.

  • MBJ
    MBJ Member Posts: 3,671
    edited August 2010

    Kelli:  I got nose bleeds the first couple times, too.  I am amazed at how oblivious some dr's are to the extensive side effects of chemo.

     I have been told that benedryl is really good to help with sleep.

  • Pamelajo
    Pamelajo Member Posts: 124
    edited August 2010

    Kelli, my onc told me that even though there is no listing of runny, bloody nose anywhere on the taxanes.......98 percent of women who take it have either of those or both.  My nose drips constantly and I've developed a cough from the drainage LOL  Oh these wonderful SE's.  I just look so forward to being done with the next 7 and how much better I will feel being done.

    if I feel slightly better it will be amazing LOL

  • Titan
    Titan Member Posts: 1,313
    edited August 2010

    You ladies have been busy on here..so many interesting discussions and welcome to our newest TN's....I'm sorry you all have to be here but there seem to be alot of us....so it is a great place to hang out.

    Jenn3!  question for you..you had a bone density test and found out you have full blown oesteropis (think I spelled it wrong but you know what I mean)..anyway..went to the gyn today and she said that I should have a bone density test also..I'm wondering why...what are they doing for your oesteropis?  (spelled wrong again..wish bco had spell check)..anyway...I'm already taking vit d and calcium and d3...what does it matter if I have it or not?  I'm just not sure this is necessary.

  • retrievermom
    retrievermom Member Posts: 321
    edited February 2011

    I asked my rad onc's PA about having a dexe scan, and she said no need.  I had a baseline done when I turned 50.

    Benedryl makes me as hyper as dexemethesone.

    I had bone pain from neulasta, but it passed after a few days and with otc's.  Had a bad bloody nose during tx, out of the blue one morning when I woke up.  Didn't even make the connection.

  • Titan
    Titan Member Posts: 1,313
    edited August 2010

    Thanks retrievermom...I think I will "ask the onc" when I see him on Tuesday...I don't see any reason for it either...how many doctors do we need anyway?????

  • Meece
    Meece Member Posts: 10,618
    edited August 2010

    Titan, there is spell check.  It is the checkmark with ABC over it on the right of the toolbar.

    I had the severe bone pain with Nuelasta and nothing, absolutely nothing would touch it. Not even Vicodin.

    Benedryl puts me to sleep.  

  • Luah
    Luah Member Posts: 626
    edited August 2010

    Ah yes, the bloody nose -- so nice to know I wasn't the only one.  It should definitely be put on the list of taxol SEs.

    Re bone density - I had a baseline and followup done as part of a clinical study I'm in - regarding the effects of exercise on women undergoing chemo. I found out that my spine was in the osteopenic range - and that chemo, thankfully, did not worsen my results.  Knowing my risk though has altered what I do.  I redoubled my efforts at load-bearing activities and weight training.  I also take a calcium supplement when, without that bone density information, I might rely on slightly lower levels through diet only... especially since calcium has been linked to increased heart risk in a recent study.

  • MonikaV
    MonikaV Member Posts: 148
    edited August 2010
    Hi girls. Glad to be back. In regards to Neulasta my doctor precribed what she calls "cocktail" which I took one hour before the shot and the following day. I must say that i felt fine barely any pain at all. Only 5 days after the shot I had bone pain (it hurt really bad) but manageable.  The cocktail consists of Claritin, Tylenol, and benadryl. It worked !Laughing This new chemo was great for me. Very little fatigue and I actually forgot couple of times that I was sick. I feel blessed! Have a great day everyone!
  • sugar77
    sugar77 Member Posts: 1,328
    edited August 2010

    Monika - I took Claritan for five days each round of chemo, starting on the day I got the Neulasta shot and I had little or no bone pain at all.  Apparently it helps with that.

    Sherri 

  • sugar77
    sugar77 Member Posts: 1,328
    edited August 2010

    Monika - I took Claritan for five days each round of chemo, starting on the day I got the Neulasta shot and I had little or no bone pain at all.  Apparently it helps with that.

    Sherri 

  • jenn3
    jenn3 Member Posts: 388
    edited August 2010

    Titan - my dr wants me to take Fosomax (she gave me my choice, I chose weekly because I might forget the monthly pill), in addition to 1500 mg of Calcium/day (500mg 3 times a day) and continue with 2000 units of D3.   I know that weight bearing exercise also helps, which I plan on doing/getting back to after I get my daughter off to college.

    JenC - I had weekly taxol and on about week 3 or 4 I started with the pain, which only got worse with each week.  It got to the point that I hated to be touched and my bones just hurt so bad.  I took Vicodin, Aleve and soaked in the tub a lot.  All I can say is take your pain medicine as prescribed, when I finally gave into taking the vicodin and listened to the dr and took it regularly with the Aleve twice a day I was able to get some relief, not complete, but enough.  In addition, during each infusion I would get the worst backache that would disappear that night and not return until the Taxol pain started 3 days later.

    Ahh........the joys of chemo.

  • Titan
    Titan Member Posts: 1,313
    edited August 2010

    You know..everyone talks about taxol being so much easier...but I thought AC wasn't as bad as Taxol....this maybe be weird but I didn't have the body aches and pains so much with AC...though I think the neulasta shots caused the body aches it just seemed the taxol made it worse..I dunno..maybe it was because taxol was the last 4 treatments and I just wanted to be done...

    Oh well..party with me...one year ago on Wed was my LAST treatment.....to you ladies that are going through treatment..yes it does finally end..and you will be looking back and marking the important dates as well! 

  • MBJ
    MBJ Member Posts: 3,671
    edited August 2010

    CONGRATULATIONS TITAN!!!!!!

  • Pamelajo
    Pamelajo Member Posts: 124
    edited August 2010

    ok, help please.  i've become obsessed.  my foob is splotchy red, and the ps says its just staining from the expansions and not to worry if there is no pain or swelling or heat.  well, there is none of that, but it bothers me LOL.  I've got two bumps right by my armpit.  my onc has felt them not once but three or four times and he says "don't worry about it.  they are linear.  it feels like cording to me, not cancer.  i've felt alot of cancer."  and I trust him, and it doesn't feel like cancer.  I'm on chemo for pity sake.  my logical brain tells me that a. the redness is from extreme stretching and it will go away.  i should trust my ps.  and b. the knots are on big tendon like cords that pop up when i raise my arm over my head.  and c.  that the knots are on the side where the bs took 19 lymphnodes out, so of course there will be issues.

    but my nagging little inner voice with the stupid scottish accent keeps buggin me that something is wrong. 

    all my blood counts are wonderful.  i'm on a drug intended for more advanced cancer, and my pet scan was clear in may......so what the hell. 

    jeebus i hate cancer.  i need to quit bein a ninny and settle down.  it's been a long damn year, and all my insecurities are creepin up on me.

    ack.  <shakes head in disgust at herself>

  • MBJ
    MBJ Member Posts: 3,671
    edited August 2010

    pamelajo:  I think we all go through this now and then.  I have been having crazy nightmares that my cancer has come back and it's a first for me.  My expanded breast has been discolored from day one (I had alot of internal bleeding) but lately I have been obsessed with my side that hasn't been touched yet.  Take a deep breath, I know you are going to be fine.  You are half way home!

  • Pamelajo
    Pamelajo Member Posts: 124
    edited August 2010

    <taking a deep breath>  GAH..........  I have to get up for work in less than three hours, I'm wide awake, stressed and now, guess what.......starving.

    cancer blows.

    I need to have a big old melt down, sit on the couch with snot dripping out my nose, crying fit the likes of which would put a toddler denied her favorite cereal isle purchase to shame.

    all the while, DH is in our bed, sleeping like a baby, not a care in the world.  Makes me wanna go in there and jump on him and scare the crap outta him..

    cancer blows goats.

    I don't even know what to think anymore.  I'm such a decisive, never say die attitude type of girl.  This whole mess I'm in is so unlike me.  I'm the female equivalent of Spock.  If it isn't logical, if it doesn't compute, I toss it out.  Never have been much of an emotional girl.  These hotflashes.   I blame all this on hot flashes.  They are driving me insane.  Hot flashes from chemo.  Chemo from cancer.

    Cancer not only blows, it sucks.

    thanks MBJ......for being on here at this unGodly hour.  You've talked/listened me away from the ledge and into a big bowl of Special K.

  • JannyM
    JannyM Member Posts: 6
    edited August 2010

    Hi MBJ and Pamelajo!  I'm up too!!!   My left tata is sore as sore can be cuz the wonderful Dr. Levy had to drain some blood from it today.  I'm only 2 weeks out from my Lumpectomy and can't shake an infection that started a few days after.  I'm also in the midst of trying to find an Oncologists.  Met w/one on Monday.  He was nice enough, but we spent the majority of the time debating a "mastectomy!!!"  He couldn't understand why I would want to keep a "diseased breast."  I kept saying that it wasn't "diseased" any more, but he kept disputing that fact cuz I had multiple tumors.  Back and forth and back and forth and can you believe that he called me this morning and said that he spent the evening researching and couldn't find anything to substantiate the need for me to have more surgery right now!!!  I was amazed that he was admitting he was wrong :)  I don't think he'll be my Onc tho cuz I didn't like his offices and his staff was not that nice.  IMHO, they need to be nice as nice can be!!!  I just want all of this behind me, but I am unfortunately just beginning this horrid journey.  All the talk about chemo has me scared to death!!!   I am simply amazed at the courage all of you gals have!!!!  I'm praying that some of it wears off on me :)   Jan.  

  • monisch
    monisch Member Posts: 43
    edited August 2010

    Hi Ladies,  Like you all I have TN...... went to the Oncologist yesterday and Im starting chemo tomorrow morning.... 6 rounds  1 every 3 weeks  FEC/DOC.   Scary crap... gonna lose my hair thats definate... but I can handle that ( i think )... as long as this monster leaves my body.

    Does anyone have experience with having nailtips on and going thru Chemo ??? should I  get nailtips or is not recommended.... whats your opionion.

    What other symtoms can I expect what the Onc. hasnt already told me ??? ( hairloss, nausea, constipation/diarhea, etc.. )

    Im sure glad I found this website.....I dont feel so alone.

    God bless you ladies !!

  • Claire82
    Claire82 Member Posts: 490
    edited August 2010

    Pamelajo - Are you seeing a PT during expansion? This could help with the lumps and make you feel a heck of a lot better. It's common to think everything is cancer especially with TN. My fears aren't so much with me but with my daughter and granddaughter. The nightmares about them are awful. I can't imagine them going through this.

    Jan - Where are you located? I'm sure someone on here can lead you to a good onc.

    Monisch - I see your from Germany and i don't know what fec/doc are. I'm assuming they are similiar to the 2 or 3 we are taking in the US. For me the worst was the bone aches from the nuelasta shot. I didn't expect this at all. About nails - I didn't start having problems with them until 2 months after my last chemo. It takes awhile for the nail to grow to the point where it starts to lift from the nail bed, so I think your nailtips will be okay for the time being. On mine I can see where I had each of my 4 treatments. There is a white raised line. it kind of reminds me of the rings on tree trunk.

  • Titan
    Titan Member Posts: 1,313
    edited August 2010

    Pamela Jo..next time wake up your DH! 

    I know exactly how you are feeling...every little bump, lump whatever is scary...be sure to have your onc or chemo nurse or whatever look at them all the time...there is nothing wrong with that..that is what they are there for.

  • MicheleS
    MicheleS Member Posts: 196
    edited August 2010

    Hi everyone! Welcome Jan and monish (hope I didn't miss anyone).

    I found taxol to be much easier than AC. But, then again, I had  intractable vomiting with AC so... ick.  For the bone pain, it is a good idea to take an anti-inflammatory (aleve or motrin or advil) on a schedule.  Narcotics are good to treat pain but they work in your brain to change the way to perceive it... The anti-inflammatories will actually treat the underlying cause some.  That's not to say that you can't add a narcotic too. Just ask you pharmacist if say motrin will interact with your rx drug when you pick it up.. Just a suggestion...

    I've been very busy with work but have been having my own little series of meltdowns lately... Not sure why.  Just had my 12 wk appt and my tumor markers are lower than ever so that was reassuring.

    {{{hugs}}} to those in treatment! You can do this!!!

    xxoo

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