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Comments

  • Firni
    Firni Member Posts: 521
    edited February 2009

    Jack55ok I'm wondering why your onc didn't say anything before now.  He must have realized his mistake after the 2nd Tx since it sounds like he adjusted the dose for the 3rd Tx.  How disappointing to lose faith in your onc at this point.  I can't tell you what to do but if you feel you can't trust him at all any more, you need to find someone else to do your follow up care.  

  • dlb823
    dlb823 Member Posts: 2,701
    edited February 2009

    Jack55ok ~ You may want to get a quick second opinion on the situation you're now in.  When dealing with potentially lethal drugs, I just don't understand how someone (onc?  pharmacist?  onc nurse?) in that office didn't catch such a significant error.  And it sounds like it was made 3X!   I know mistakes happen, but if I was in your situation, I would no longer trust my care to that office, period.  Sorry to be so candid, but, to me, that's not the kind of mistake you write off and go merrily on your way about.  That is a huge error that never should have happened.    

  • ilovemykids
    ilovemykids Member Posts: 43
    edited February 2009

    Hi Everyone,

    Just popping in to say hello.  I am seven weeks out of treatment.  The hair is back!  1/4 inch all over so yes it really does come back.  Life gets more normal, and you feel good again.  Hang in there!  I promise you can do this, and you will get back to your old life again...only you will be better than ever!  I am on Tamoxifen now, and that is not hard at all.  I pray for all of you every day, and keep you all at heart!  Love, Elizabeth

  • holtbolt
    holtbolt Member Posts: 302
    edited February 2009

    Thank you Elizabeth for that encouragement.....!!!  Laughing

    Jack...  yikes... the horror you must have felt... we are all counting the days, marking the calendar... to be surprised like that at the end... I am so so sorry... ..I guess I would do the 5th treatment then  find someone else... but first I might be tempted to get in his face a little... this is what he does for a living... and it's important dammit!  Ahhhhhh!   

  • unique
    unique Member Posts: 209
    edited February 2009

    Jack55 ~ I was afraid of this myself, as I haven't had too many side effects, well, enough to be sure I got some chemo! But I looked at my dosage sheet and I'll tell you, I couldn't make head or tails of it so I decided not to worry.

    I would get another onc to discuss it with, but I'll bet, other than the expense and the emotional aspect it won't matter in the long run. What you need to do is an extra cycle or two to ensure you got the chemo you needed. So be calm, but switch oncs.

    The scary thing is many oncs may not even tell patients when screwups occur, just fire the tech and not say a word. Yours had the conscience to tell you and make an adjustment, and that counts for something in my book.

  • unique
    unique Member Posts: 209
    edited February 2009

    Oh, if it makes you feel better, I was thinking I was all done, but because of changes in the way they approach treatment, I have to do radiation. I was bummed, but picked up and went on, oh well.

  • flmomof3
    flmomof3 Member Posts: 12
    edited February 2009

    I just started my first round of TC Feb 5th. 48 hours later I am still feeling ok, in bed, tired, and achey in my hips and joints but ok. They told me to expect symptoms at about 72 hour mark...does this sound right?..I am optomistically thinking it won't be much worse than today or should I expect to go down hill from here.

    Also when do I shave the head ...I really don't want to see it fall out.

    Thanks

    Sue

  • plakatakr
    plakatakr Member Posts: 45
    edited February 2009

    Sue- hair starts to fall out around day 14. Most of us bottom out on day 3 or 4, when the steroids leave your system. good luck!

  • holtbolt
    holtbolt Member Posts: 302
    edited February 2009
    flmomof3 - congrats to moving a couple days closer to the end!  Day 1 and 2 are pretty ok..., plakatakr is right... starting with day 3 or 4 you start to feel bad... and at least for me... you start feeling better day 7 or 8... but everybody is different.  I am on day 17 (had my first TC on Jan 20th) and hair is falling out like crazy..., started a few days ago... you head starts tingling or you feel like you have an achey scalp.. that's the sign things are starting... good luck with your treatments... I have only had one so far- treatment 2 for me is Tuesday - remember that whatever side effects you have.....you WILL feel better as the days go along... just take it one day at a time.... Laughing
  • Alo123
    Alo123 Member Posts: 72
    edited February 2009

    I waited to shave my head until day 17 and feel like I waited a day too long...it staterd coming out.....in clumps.

    I had it shaved yesterday...so it looks GI Jane crew cutish......it is still falling out....but now it's small wiskerish hair.  I imagine I'll be shiny bald at some point...but the crewcut to the bald is an easy transion.  I think my kids will have a better time getting used to it....

  • holtbolt
    holtbolt Member Posts: 302
    edited February 2009
    I'm having my husband shave my head today... Sunday... after days of putting up with the shedding... it's not really freaking me out to lose it.. I'm just annoyed with hair everywhere.  My husband is nervous about shaving it... I reminded him that he cannot possibly mess this up.. right?  Unless he puts a big gash in my scalp somehow... lol.  I just had to make him promise he will bite his tongue with the jokes because he'll have a million of  'em... Happy Sunday to everyone... maybe your side effects be few and your sleep be uninterrupted......Laughing
  • hopefullady
    hopefullady Member Posts: 102
    edited February 2009

    Sue, 

    You will have warning about the hair.  If you don't want to see it falling out jut have it buzzed short then.  It doesn't all fall out at once.

    First, your scalp will start itching and maybe a few strands in the shower or when you dry your hair.  Maybe if you run your hand through a few strands will come out on your hand.  You will then have plenty of time to have it shaved.  

    I couldn't stand to see mine fall out either.  I had it cut short first, and about a week later buzzed.  I never did get shiny bald, I always kept the fuzz left from having it buzzed.

    Hope your side effects are few.

    Chris 

  • CindaD
    CindaD Member Posts: 9
    edited February 2009

    Goodmorning Ladies, To those of you who are just starting, I just want to say that this Thurs is my last tx, and I can honestly say I feel like the whole thing went fast!  When you feel tired, rest, when you're hungry,eat, when you finally start to feel the fatigue lift, doing something fun.  Leave the housework, it will be there.  I kept a journal thru this whole process so I wouldn't forget what I was feeling at each step, my attitude has changed since I started this process, for the good.

    You can all do this ladies, it's just a bump in the road.  It will be over before you know it, but live your life NOW!  I think sometimes we focus on the SE's and forget to see the good stuff. The good stuff is there, you just have to look for it.

    Hugs to all,

    Cinda

  • ilovemykids
    ilovemykids Member Posts: 43
    edited February 2009

    Holtbolt,  I just thought you would like to know that we share the same birthday!  I hope you did fine with the hair shaving, I never did that can you believe that!  You can do this one step at a time.

    I am cheering for all of you guys!  Chemo is not easy but it is just temporary.  You will be done sooner than you think even though it seems like an eternity, and you are constanly counting each day!  I never thought I would get to the end.

    We will survive!

    Love, Elizabeth

  • holtbolt
    holtbolt Member Posts: 302
    edited February 2009
    Ahh.. Elizabeth... a fellow Gemini!  I did fine with the hair shaving... losing the hair is far from the worst thing about all this... I was surprised how ugly I was but... you know... I think most people think that.  lol.  Happy Birthday early from me!  By the end of May I intend to be living a normal life!!!!  Laughing
  • ktym
    ktym Member Posts: 673
    edited February 2009

    For those of you finished with TC, how long after the treatment before you felt really back to normal.  Not the hair back, I know that takes awhile, but how long before you had all of your taste buds back and truly had all of your muscle strength and energy back.  I think the persistent weakness between treatments is what gets to me the most

  • CindaD
    CindaD Member Posts: 9
    edited February 2009

    My taste buds come back between tx for about a week and a half, and I usually feel really good right before my next tx.  So I'm anticipating that I should feel good to go 2-3 weeks after this Thursday!  That's my plan and I'm sticking to it!  I've been told that the better we start to feel, the more we'll do, and that will make us feel even better.  One step at a time.  Remember this isn't a sprint, but a marathon, and one that's worth taking.

  • BooBee
    BooBee Member Posts: 288
    edited February 2009

    I agree on the fatigue being the worst part.  I didn't have it untill my 4th treatment and it feels like I'm walking in a wading pool full of mud.  My last treatment (6) is at the end of this month.  Come to think of it my taste buds don't bother me at all any more.

    Take care ladies,

    Renee

  • robichson
    robichson Member Posts: 26
    edited February 2009

    Hello ladies,

    It has been awhile since I have posted.  Finished chemo 11/11/08 and doing well.  I started back to work Jan. 5 and hair is coming back.  I have gotten alot of compliments on my hair.  It is straight and certaintly a different texture but I love it.  I'm eating better and once it gets warmer will start my walking at the track.  My reconstructive surgery went well and I go on March 6 to have my nipple put on.  My doctor really did a good job.  I feel wonderful and I want everyone who is currently going through chemo to know that you can do it and to stay encouraged.  I will post a picture soon so you can see the hair.  Love you all and be strong. 

  • bobcat
    bobcat Member Posts: 526
    edited February 2009

    Hi All -

    I haven't posted in about a week.  Had my last TC last Friday and it knocked the crap out of me.  Spent Sunday watching movies and napping and Monday all day in bed.  I swear they gave me a double dose this time!!   The fatigue is worse than ever.  I did finally get out this morning for a walk with a friend as it is 60 degrees here is PA.  The taste in my mouth and the nausea are unbelievable this round.  Don't know why that is.  But WHOOHOOO - my last treatment behind me and all uphill from here.  I have my next PS appointment on March 6 to start the nipples and tattoos.  Don't know when the hair returns because I guess I still have to respond to this last treatment before that is resolved.  What I would like is to flatten this tummy and firm up the arms again so by summer I look nice in a bathing suit.  That will be my goal this spring as I start to feel better.  I've been able to keep my weight the same but it looks different with the foobs even though I've continued to exercise my lower body.  Actually attennding a funeral on Friday and will dig out a more flattering dress with blazer and see how that feels instead of the tunics and scarves I've been wearing.  Good luck to all dealing with SE's and treaments this week.  Stay strong.  Hugs,

    Bobbi

  • peeps1111
    peeps1111 Member Posts: 70
    edited February 2009

    kmmd:

    It was only 2 weeks after my last chemo that I felt normal.  My hair is just starting to grow back and I had my last TC on 11/20.  I had it buzzed again last week to jumpstart it and I am finally noticing new growth.  I had fuzz all along and never really lost it all.  3 of my friends said I looked better with the fuzz!

    Peeps

  • nursekim
    nursekim Member Posts: 11
    edited February 2009

    I had alot of burning in my thighs during treatment esp. with climbing stairs.  My oncologist said it was just the fatigue. It was gone about 4 weeks after my last treatment.  11/13 was my last treatment and I am just now starting to get a little hair growth!  I go the 16th for a mammogram and see my surgeon and oncologist. 

  • Firni
    Firni Member Posts: 521
    edited February 2009
    I'm feeling encouraged by everyone who has finished their TC and feel almost normal after a couple weeks.  Tx 3 had me fatigued for pretty much all three weeks.  I actually had 3 days where I felt normal.  Just had Tx 4 today so we'll see where that goes.  None of them have been totally alike.  It's always a surprise.Undecided   I get my last of 6 TC on 3-25 and I don't anticipate any hair until fall.  If it comes in before that ...Bonus.
  • unique
    unique Member Posts: 209
    edited February 2009

    KMMD,

    It's kind of hard to say for me, because I had terrible bronchitis for a couple of weeks after chemo. But once that was done with, I felt pretty good, very much like my old self completely!

  • Snowbird
    Snowbird Member Posts: 26
    edited February 2009

    KMMD: Thank you so much for asking this question, and thank you to all who answered it. I've just finished #3 of 4 and really needed to hear your encouraging stories right now!! I've just hit the "steroid crash" and hope the rebound will be as good this time as it was after #2. I seem to have developed an annoying twitch in my eyes, though. Is this common or could it just be my erratic wake/sleep cycle at play? Cheers, all...

  • bobcat
    bobcat Member Posts: 526
    edited February 2009

    Snowbird -

    I have had that twitch since the first treatment - got so bad sometimes I couldn't get my eyes made up - and I need that eye makeup  with this bald head!!  Since the fourth TC it has eased somewhat but not completely.  Mentioned it to my onc but he hadn't heard of it.  They think we blame everything on chemo - well, we do because it's so toxic.  I use a lot of eye drops day and night and that at least keeps the dryness at bay but the twitch is annoying.   I am now 6 days out and the steroid crash is subsiding - yeah.  I was interested to hear about everyone's hair growth and how long it takes to come back in.  I will keep shaving those little stragglers until I get nice growth.  I use selftanner on my head and it makes me look healthier.  All good.....

  • bobcat
    bobcat Member Posts: 526
    edited February 2009

    Anyone have itchy palms??

  • ktym
    ktym Member Posts: 673
    edited February 2009

    Thanks to all that answered, it is very encouraging.  Snowbird, that cracked me up, and you're right I blame EVERYTHING on the chemo.  I feel sorry for my med onc at times because if I could blame the weather on it I would

  • Snowbird
    Snowbird Member Posts: 26
    edited February 2009

    Bobcat, congratulations on finishing! How exciting! I'm sooo anxious to get to where you are and glad to know I'm not the only one with the eye thing. I hope yours goes away, and mine too!!! No itchy palms here, tho...  how lucky can a girl get, eh?

    KMMD: wasn't it in the "chemo contract" that it IS to blame for everything (except the GOOD weather, perhaps!?!?!)...  that cracked me up too!!! 

    Well, at least I'm seeing a bunch of movies I've never seen before. Just discovered Netflix's "watch instantly" feature and am off now to see my "next in queue"! Tomorrow I'lll push myself, but today I'm still a bit "peckish" and in "pamper myself" mode...  This stuff had better be working!!!

  • nikkidurepo
    nikkidurepo Member Posts: 8
    edited February 2009

    hi ladies!

    my hair started to come out pretty good yesterday (day 17 of tx1) and continues to come out especially when i run my hands through my hair. i really want to hold out from shaving my head until this sunday night.my daughter is getting baptized this sunday.when did you all decide to shave your hair off?

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